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<strong>COMMUNITY</strong> <strong>BASED</strong> <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

<strong>Maternal</strong> <strong>and</strong> Neonatal Follow Up Care<br />

Health Systems Trust <strong>and</strong> University of Western Cape Consortium<br />

together with South African Nurses in Business


<strong>COMMUNITY</strong> <strong>BASED</strong> <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

<strong>Maternal</strong> <strong>and</strong> Neonatal Follow Up Care<br />

Research commissioned by:<br />

The <strong>Maternal</strong>, Child, Women’s Health <strong>and</strong> Nutrition Directorate of the National Department of<br />

Health, South Africa<br />

Research funded by:<br />

The Centers for Disease Control <strong>and</strong> Prevention, South Africa<br />

Research Report written by:<br />

• Debra Jackson, School of Public Health, University of the Western Cape<br />

• Marian Loveday, Health Systems Trust<br />

• Tanya Doherty, Health Systems Trust<br />

• Nomafrench Mbombo, School of Nursing, University of the Western Cape<br />

• Alyssa Wigton, School of Hygiene <strong>and</strong> Public Health, Johns Hopkins University<br />

• Lyness Matizirofa, Statistics Department, University of the Western Cape<br />

• Mickey Chopra, Health Systems Research Unit, Medical Research Council <strong>and</strong> School<br />

of Public Health, University of the Western Cape<br />

• Gugu Nzim<strong>and</strong>e, School of Public Health, University of the Western Cape<br />

• Eric Cele, Health Systems Trust<br />

• Mildred Joyi, Health Systems Trust<br />

• Latasha Treger, Centers for Disease Control <strong>and</strong> Prevention (South Africa)<br />

• Pulani Tlebere, National Department of Health (South Africa)<br />

Suggested citation: Jackson D, Loveday M, Doherty T, Mbombo N, Wigton A, Matizirofa L,<br />

et.al. Community Based Situation Analysis: <strong>Maternal</strong> <strong>and</strong> Neonatal Follow-up Care. Durban:<br />

Health Systems Trust. 2006.<br />

The information contained in this publication may be freely distributed <strong>and</strong> reproduced, as long as the source is acknowledged,<br />

<strong>and</strong> it is used for non-commercial purposes.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

ii


Table of Contents<br />

ABSTRACT ...............................................................................................................................................................V<br />

EXECUTIVE SUMMARY .........................................................................................................................................VII<br />

1. INTRODUCTION...................................................................................................................................................1<br />

2. OBJECTIVES OF THE <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong>.............................................................................................2<br />

3. METHODS ............................................................................................................................................................3<br />

4. RESULTS .............................................................................................................................................................8<br />

4.1. DEMOGRAPHIC AND SOCIO-ECONOMIC INFORMATION ........................................................................8<br />

4.2. SEMI-STRUCTURED HOUSEHOLD INTERVIEWS....................................................................................11<br />

SECTION 1: FACTORS ASSOCIATED WITH UTILISATION OF HEALTH SERVICES............................11<br />

SECTION 2: LEVELS OF AWARENESS OF RISK FACTORS AND SOURCES OF HEALTH<br />

INFORMATION...........................................................................................................................................14<br />

SECTION 3: HEALTH SEEKING BEHAVIOUR OF HIV-POSITIVE AND HIV-NEGATIVE WOMEN.........16<br />

SECTION 4: FAMILY INVOLVEMENT IN PREGNANCY, BIRTH AND CARE OF INFANT ......................16<br />

SECTION 5: DISCUSSION AND CONCLUSION .......................................................................................16<br />

4.3. QUALITATIVE RESULTS ............................................................................................................................18<br />

SECTION 1: NO ANC ATTENDANCE AND HOME BIRTH REVIEW ........................................................18<br />

SECTION 2: MATERNAL DEATH REVIEW............................................................................................... 23<br />

5. DISCUSSION: TRIANGULATION AND SUMMARY OF RESULTS..................................................................36<br />

6. RECOMMENDATIONS: .....................................................................................................................................37<br />

7. ACKNOWLEDGEMENTS...................................................................................................................................39<br />

8. REFERENCES....................................................................................................................................................40<br />

APPENDIX A ...........................................................................................................................................................41<br />

APPENDIX B ...........................................................................................................................................................59<br />

LIST OF TABLES<br />

Table 1: Categories <strong>and</strong> Number of Study Respondents..........................................................................................8<br />

Table 2: Demographic Data ......................................................................................................................................9<br />

Table 3: Utilisation Score .........................................................................................................................................12<br />

Table 4: Age at death <strong>and</strong> Suspected Causes of Death in Infants ..........................................................................29<br />

Table 5: <strong>Maternal</strong> <strong>and</strong> Infant HIV Status Correlated with Infant Deaths ..................................................................30<br />

LIST OF GRAPHS<br />

Graph 1: Comparing Household Water Source at the Three Sites.........................................................................10<br />

Graph 2: Comparing Average Travel Times to the Nearest Clinic <strong>and</strong> Hospital from the Three Sites ...................11<br />

Graph 3: Sources of Health Information on Pregnancy by Site ..............................................................................15<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

iii


LIST OF APPENDICES<br />

Appendix A: Quantitative Results<br />

Appendix 1: Socio-Economic Differences across the Sites<br />

Appendix 2: Distribution of Selected Measures of Income by Site<br />

Appendix 3: Mode of Travel <strong>and</strong> Time to Health Services<br />

Appendix 4: Factors associated with the Utilisation of Health Services with a Score >=5<br />

Appendix 5: Barriers to ANC<br />

Appendix 6: What Sort of Things or People made it Easier to Attend ANC?<br />

Appendix 7: Why didn’t you go to ANC Earlier?<br />

Appendix 8: Pregnancy History<br />

Appendix 9 Family Planning<br />

Appendix 10: Immunisations<br />

Appendix 11: Where did you learn about Problems or Warning Signs in Pregnancy?<br />

Appendix 12: Sources of Information on Pregnancy<br />

Appendix 13: Source for Best Advice for Making Decisions about Health<br />

Appendix 14: What are some Dangerous or Warning Signs of a Problem during Pregnancy or Birth?<br />

Appendix 15: What are some Dangerous or Warning Signs of a Problem in the Woman in the First Month After<br />

Birth?<br />

Appendix 16: What Are some Danger or Warning Signs of a Problem in the Baby in the First Three Months<br />

After Birth?<br />

Appendix 17: Household Member: What are some Dangerous or Warning Signs of a Problem During<br />

Pregnancy, Birth or in the 1 st Month after Birth?<br />

Appendix 18: Utilisation Score by HIV Status<br />

Appendix 19: Immunisation by HIV Status<br />

Appendix 20: Quality of Care by HIV Status<br />

Appendix 21: Family Involvement in Pregnancy - Mother's Interview<br />

Appendix 22: Family Involvement in Labour/Birth - Mother's Interview<br />

Appendix 23: Family Involvement in Pregnancy - Household Member's Interview<br />

Appendix 24: Family Involvement in Labour - Household Member's Interview<br />

Appendix 25: Family Involvement after the Birth of the Baby - Household Member's Interview<br />

Appendix 26: Do you think That Poor Health of Women during Pregnancy is an Important Problem in South<br />

Africa - Household Member's Interview<br />

Appendix B:<br />

Appendix 1:<br />

Appendix 2:<br />

Appendix 3:<br />

Appendix 4:<br />

Appendix 5:<br />

Qualitative Results<br />

<strong>Maternal</strong> Verbal Autopsy case summaries<br />

Infant Verbal Autopsy Pilot Report<br />

Facility Sub-Study Report: Paarl Facility Investigation<br />

Facility Sub-Study Report: Rietvlei Facility Investigation<br />

Facility Sub-Study Report: Summary<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

iv


<strong>COMMUNITY</strong> <strong>BASED</strong> <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

<strong>Maternal</strong> <strong>and</strong> Neonatal Follow Up Care<br />

Abstract<br />

Introduction<br />

There were two overall aims to this project. Firstly, to conduct a community situational analysis<br />

to determine factors that impact on the utilisation of maternal health services. Secondly, it is<br />

hoped that the results of the research could be utilised to develop appropriate interventions to<br />

improve acceptability <strong>and</strong> utilisation of safe motherhood <strong>and</strong> PMTCT programmes.<br />

Objectives<br />

1. To determine factors influencing utilisation of maternal health services <strong>and</strong> barriers to<br />

utilisation of maternal health services (including loss to follow-up of mothers <strong>and</strong> infants<br />

in the PMTCT programme).<br />

2. To determine the level of awareness of risk factors associated with poor maternal <strong>and</strong><br />

perinatal health outcomes among women <strong>and</strong> men.<br />

3. To determine the health seeking behaviours of HIV-positive <strong>and</strong> HIV-negative pregnant<br />

women.<br />

Methods<br />

In order to capitalise on extensive background data <strong>and</strong> to build on ongoing research, three<br />

sites were chosen for the research related to objectives 1, 2 <strong>and</strong> 3, where the HST/UWC<br />

consortium has longst<strong>and</strong>ing research links. These sites are in the Western Cape, KwaZulu-<br />

Natal <strong>and</strong> the Eastern Cape. The three sites in these provinces represent diverse geographical<br />

settings in South Africa, namely; a peri-urban township, a rural district <strong>and</strong> a peri-urban farming<br />

region as well as differences in HIV prevalence <strong>and</strong> socio-economic situations.<br />

Semi-structured household interviews with 3 groups of mothers, plus a member of each<br />

mother’s household were interviewed. All groups r<strong>and</strong>omly sampled: HIV-positive mothers<br />

enrolled in national PMTCT cohort study; HIV-negative mothers enrolled in national PMTCT<br />

cohort study, <strong>and</strong> Women of unknown HIV status sampled from community lists of recently<br />

delivered mothers.<br />

Case studies with 3 groups of mothers were also conducted. Groups r<strong>and</strong>omly sampled from<br />

community lists: No ANC; No ANC with home births; <strong>and</strong> Home births (with ANC). In addition,<br />

verbal autopsies using tools adapted from WHO, including Infant verbal autopsies (PMTCT<br />

cohort) <strong>and</strong> <strong>Maternal</strong> verbal autopsies (PMTCT cohort <strong>and</strong> non-cohort) were conducted.<br />

Finally, a facility based review of PMTCT follow-up services was conducted using qualitative<br />

<strong>and</strong> quantitative case study methodology. Data collection methods consisted of semistructured<br />

interviews with staff <strong>and</strong> management involved in the PMTCT programme <strong>and</strong> a<br />

review of PMTCT programme records.<br />

Data analysis used quantitative statistics for the semi-structured interviews <strong>and</strong> qualitative<br />

content-theme approach for the case studies <strong>and</strong> verbal autopsies. Each component was<br />

analysed separately <strong>and</strong> then triangulated.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

v


Results<br />

In triangulating the results across the various sources of data in this study, many consistent<br />

themes emerged. The following provides a short summary of the primary themes that were<br />

seen in this analysis:<br />

• Transport <strong>and</strong> Distance to Care - biggest problem<br />

• Communication with Families - very poor<br />

• Health Seeking Behaviour - good<br />

• Treatment by health providers <strong>and</strong> quality of care - mixed<br />

• HIV/AIDS is a major issue - but cannot overlook basic maternity <strong>and</strong> neonatal service<br />

quality<br />

• Families <strong>and</strong> Communities - an untapped resource<br />

Conclusions/Recommendations<br />

• 24-hour emergency transport services must be available within each community for<br />

emergency obstetric <strong>and</strong> paediatric care.<br />

• Community education about maternal <strong>and</strong> infant health <strong>and</strong> danger signs is imperative.<br />

• Hospital protocols for assessment <strong>and</strong> treatment of women <strong>and</strong> infants must be<br />

reviewed <strong>and</strong> current st<strong>and</strong>ards must be implemented.<br />

• All facilities must be adequately supplied with the essential medicines <strong>and</strong> supplies to<br />

promote maternal <strong>and</strong> infant health.<br />

• Sensitivity training for hospital staff working with mothers <strong>and</strong> infants should be<br />

explored <strong>and</strong> communication with families needs to be enhanced.<br />

• HIV <strong>and</strong> AIDS services need to be exp<strong>and</strong>ed, integrated <strong>and</strong> comprehensive.<br />

• Cooperation <strong>and</strong> communication with families <strong>and</strong> communities needs to be enhanced.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

vi


Executive Summary<br />

<strong>COMMUNITY</strong> <strong>BASED</strong> <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

<strong>Maternal</strong> <strong>and</strong> Neonatal Follow Up Care<br />

1. INTRODUCTION<br />

Reduction of mortality <strong>and</strong> morbidity of both the mother <strong>and</strong> the newborn have been identified<br />

as priority areas needing urgent attention by the Department of Health. The maternal mortality<br />

ratio for South Africa was estimated in the South African Demographic <strong>and</strong> Health Survey of<br />

1998 to be 150/100 000 births. 1 This rate is however, thought to be rising, as the estimate from<br />

the latest Saving Mothers Report 2 places the estimate at 175-200/100 000 births. The extent of<br />

morbidity is not known but it is estimated that for every woman that dies of a pregnancy related<br />

complication, 20 more suffer from morbidity such as vesico-vaginal fistulae which may be<br />

severe <strong>and</strong> lead to long term disabilities. 3<br />

According to the Saving Mothers report, since 1999 non-pregnancy related infections have<br />

become the main cause of maternal mortality in South Africa (33.7%), 2 with AIDS being the<br />

main cause. Hypertensive complications of pregnancy are the second commonest (18.1%)<br />

followed by obstetric haemorrhage (13.8%). Poor transport <strong>and</strong> lack of intensive care services<br />

were the major administrative problems reported. Medical personnel oriented problems<br />

included poor initial assessment <strong>and</strong> diagnosis of cases especially at secondary level of care,<br />

failure to follow st<strong>and</strong>ard protocols at primary <strong>and</strong> secondary levels <strong>and</strong> poor monitoring of<br />

patients at all levels of care.<br />

To this end, the <strong>Maternal</strong>, Child, Women’s Health <strong>and</strong> Nutrition (MCWHN) directorate, with<br />

financial assistance from CDC contracted Health Systems Trust (HST) <strong>and</strong> South African<br />

Nurses in Business (SANIB) to conduct a community-based situational analysis on maternal<br />

<strong>and</strong> neonatal follow-up care. The situational analysis was to be conducted throughout the<br />

country <strong>and</strong> the findings of this study are to be used to target interventions aimed at improving<br />

maternal <strong>and</strong> infant mortality rates, with a particular focus of enhancing the utilisation of<br />

services.<br />

1<br />

National Department of Health, South African Demographic <strong>and</strong> Health Survey 1998. Pretoria: Department of Health/Medical<br />

Research Council/Macro International. 1998.<br />

2<br />

NCCEMD, Saving Mothers 1999-2001, Pretoria: National Department of Health/NCCEMD. 2002.<br />

3<br />

World Health Organization. Making Pregnancy Safer: Why is this issue important? Fact Sheet No. 276. Geneva: World Health<br />

Organization. 2004.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

vii


2. OBJECTIVES OF THE <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

HST together with the University of the Western Cape (UWC) took responsibility for providing<br />

insight for the first three objectives of the project, namely:<br />

1. To determine factors influencing utilisation of maternal health services <strong>and</strong> barriers to<br />

utilisation of maternal health services (including loss to follow-up of mothers <strong>and</strong> infants<br />

in the PMTCT programme).<br />

2. To determine the level of awareness of risk factors associated with poor maternal <strong>and</strong><br />

perinatal health outcomes among women <strong>and</strong> men.<br />

3. To determine the health seeking behaviours of HIV-positive <strong>and</strong> HIV-negative pregnant<br />

women.<br />

3. METHODS<br />

Research Sites<br />

Three sites were chosen for the research from communities where the HST/UWC consortium<br />

has longst<strong>and</strong>ing research links. These sites are situated in the Western Cape, KwaZulu-Natal<br />

<strong>and</strong> the Eastern Cape. The three sites represent diverse geographical settings in South Africa,<br />

namely; a peri-urban township, a rural district <strong>and</strong> a peri-urban farming region, as well as<br />

differences in HIV prevalence <strong>and</strong> socio-economic situations.<br />

Study Methods<br />

A cross sectional descriptive study was conducted. Quantitative <strong>and</strong> qualitative data were<br />

collected from households that participated in the national PMTCT cohort study (HIV-positive<br />

<strong>and</strong> HIV-negative) <strong>and</strong> from households that did not participate in this study (unknown HIV<br />

status). From each of the three PMTCT cohort sites, 20 women who were known to be HIVpositive<br />

<strong>and</strong> 20 women who were known to be HIV-negative were r<strong>and</strong>omly sampled from the<br />

list of original participants. 20 women were also r<strong>and</strong>omly selected from the list of births in the<br />

last 9-12 months generated by Community Health Workers (CHWs) to provide a sample of<br />

women who were not in the PMTCT cohort study. A husb<strong>and</strong>/partner or other significant<br />

household member was also interviewed from each of these 60 households to explore<br />

knowledge <strong>and</strong> underst<strong>and</strong>ing of family members around pregnancy risks <strong>and</strong> maternity care.<br />

In addition to the cross-sectional descriptive survey qualitative case-studies of adverse<br />

outcomes were also conducted. A sub-sample of women/households was purposely selected<br />

to examine particular cases of interest, for example households with a known maternal or infant<br />

death, a mother with no antenatal care or who had a home birth. The semi-structured<br />

interviews in these households were supplemented with a qualitative interview examining the<br />

circumstances <strong>and</strong> issues around the event of interest, e.g. the maternal death. Approximately<br />

20 case studies were to be done in each of the sites.<br />

Home visits were made to selected women <strong>and</strong> written informed consent was obtained from all<br />

women prior to initiation of the interview. Data was collected using semi-structured interviews<br />

with pregnant women, partners <strong>and</strong> other key informants by trained field researchers. The<br />

instruments had modules on basic socio-demographic data, utilisation of <strong>and</strong> barriers to<br />

utilisation of maternal health services, knowledge of risk factors associated with poor maternal<br />

<strong>and</strong> perinatal health outcomes, frequency of postnatal health service contacts, sources of<br />

community information on maternal health <strong>and</strong> PMTCT <strong>and</strong> attitudes towards maternal health<br />

services.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

viii


It was not possible to identify participants on the PMTCT programme who had defaulted <strong>and</strong><br />

avoided obtaining infant HIV testing results or full infant immunisation at nine months. A facility<br />

based qualitative case study, was therefore conducted at two of the three sites (Paarl <strong>and</strong><br />

Rietvlei), to compare PMTCT programmes, which have been in existence for four years, <strong>and</strong><br />

determine what systems factors contributing to the functioning of these programmes.<br />

Data Capturing & Data Analysis<br />

Quantitative data were entered into an EXCEL spread sheet <strong>and</strong> analysed using both SAS <br />

<strong>and</strong> EPI-INFO software packages. Primarily descriptive statistics were employed, including<br />

means <strong>and</strong> st<strong>and</strong>ard deviation for continuous data, <strong>and</strong> frequencies <strong>and</strong> cross-tabulations for<br />

categorical data. A content-theme approach focusing on study questions was used for the<br />

qualitative analysis. Two researchers from the study team were allocated to each type of<br />

qualitative interview: The data from the Facility Based PMTCT Follow-up Study is a<br />

combination of quantitative data from the data available at the two sites <strong>and</strong> a qualitative<br />

process description focusing on the follow-up services at each facility <strong>and</strong> the challenges<br />

described by the key informants. Finally, data from the quantitative semi-structured interviews,<br />

the three types of case studies, <strong>and</strong> the facility review were triangulated.<br />

4. RESULTS<br />

Household Interviews<br />

In total there were 226 respondents. Of these, 68 lived in Paarl, 78 in Rietvlei <strong>and</strong> 81 in<br />

Umlazi. Of the 226 respondents 178 were involved in semi-structured interviews <strong>and</strong> 48 in indepth<br />

studies. In addition 178 household members were interviewed. The average age of the<br />

women interviewed (not household members) was similar across the sites between 25 <strong>and</strong> 27<br />

years. The mean infant age across sites was similar (p=0.61) There were significantly more<br />

single women in Umlazi (81%) than at the other two sites (Paarl 69% <strong>and</strong> Rietvlei 51%).<br />

The results for a number of socio-economic variables show that participants from Rietvlei have<br />

significantly poorer resources than those in Paarl <strong>and</strong> Umlazi. These included poorer water<br />

source, sanitation facilities, cooking fuel, <strong>and</strong> lower rates of employment. Women in Rietvlei<br />

lived substantially longer distances from both the clinic <strong>and</strong> the hospital than in the other two<br />

sites.<br />

In order to examine factors associated with the utilisation of maternity <strong>and</strong> newborn services, a<br />

composite index was developed using the six items listed in Table 3 below. One point was<br />

allocated for each item with a score of 1 indicating better utilisation <strong>and</strong> 0 poorer utilisation. A<br />

mean score was then derived, which indicated that Paarl had the best utilisation score <strong>and</strong><br />

Rietvlei the lowest. The score was further dichotomized to =5, with >=5 indicating<br />

better utilisation of services. Paarl had the highest percentage of women (77%) with a score of<br />

at least five <strong>and</strong> Rietvlei the lowest at only 11% (Utilisation Score).<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

ix


Utilisation Score<br />

Variable Paarl Rietvlei Umlazi Total<br />

# (%) # (%) # (%) # (%)<br />

For all pregnancies<br />

Attended ANC in all pregnancies 60 (100) 57 (95) 55 (95) 172 (96)<br />

Delivered in Hospital/Clinic for all 55 (92) 48 (80) 55 (95) 158 (89)<br />

pregnancies<br />

For last pregnancy<br />

Began ANC in months 0-4 34 (57) 20 (34) 26 (46) 80 (46)<br />

1 st infant follow-up visit prior to 6 56 (93) 16 (27) 48 (84) 120 (68)<br />

weeks of age<br />

1 st maternal follow-up visit prior 55 (92) 10 (18) 21 (38) 86 (49)<br />

to 6 weeks post-delivery<br />

Currently using Family Planning 47 (78) 43 (73) 47 (89) 137 (80)<br />

Mean Utilization Score (1 point<br />

for each of above)<br />

5.1<br />

(SD=0.85)<br />

3.3<br />

(SD=1.1)<br />

4.5<br />

(SD=0.82)<br />

P-value (comparing<br />

mean differences) = 0.00<br />

Utilization Score >=5 46 (77%) 6 (11%) 26 (54%) 78 (47%)<br />

P=0.00<br />

The following variables were associated with higher utilisation in addition to site (p=5, between mothers who were HIVpositive<br />

<strong>and</strong> HIV-negative. There were also no differences in mean number of postpartum<br />

visits (4 vs. 3, p=0.17). Complete immunisation of children for age was similar across HIVpositive<br />

<strong>and</strong> HIV-negative women in Paarl <strong>and</strong> Rietvlei but significantly lower in children of HIVpositive<br />

women in Umlazi (19% vs. 82%, p=0.0003).<br />

Specifically examining stated barriers to care, in Paarl 27%, Umlazi 28% <strong>and</strong> in Rietvlei 38% of<br />

women indicated they had problems attending antenatal care. A lack of financial resources for<br />

transport was the barrier most cited by women. Although money was listed as the biggest<br />

barrier to care, having money did not significantly promote ANC attendance. Support of family<br />

<strong>and</strong> friends was the strongest promoter of ANC attendance. This support varied from<br />

encouragement to assistance with transport <strong>and</strong> money. 11-15% of women cited friendly staff<br />

<strong>and</strong> good quality care as promoters of ANC attendance.<br />

With regard to late antenatal attendance the two main reasons for not starting ANC early were:<br />

the long distances to services <strong>and</strong> the fact that pregnant women felt fine so they thought it was<br />

all right to access ANC services later on in pregnancy. The proportion of women who cited the<br />

latter reason was substantially higher in Rietvlei (61%) compared to 14% in Umlazi <strong>and</strong> none in<br />

Paarl.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

x


With regard to knowledge of risk factors by the women, the most well-known factors for<br />

pregnancy <strong>and</strong> delivery were hypertension <strong>and</strong> oedema (75%); for postpartum it was bleeding<br />

(75%), <strong>and</strong> for newborns chronic diarrhoea (75%). The majority of other risk factors were<br />

mentioned by less than 50% of women. Knowledge in household members was similar to that<br />

of the women.<br />

The predominant source of information on pregnancy at each of the three sites was the health<br />

workers (over 80% in all sites), followed by the radio <strong>and</strong> friends or family. The most trusted<br />

source of information for making health decisions was also health workers.<br />

Qualitative Case Studies<br />

No Antenatal Care <strong>and</strong> Home Births<br />

The following themes related to health systems barriers to antenatal care were identified from<br />

the in-depth interviews: Accessibility of health services was a major issue, including time<br />

services offered, distance/time to services, <strong>and</strong> money to travel to services. Another major<br />

theme was the attitude of nurses with some nurses being very positive, but unfortunately not<br />

all. Community factors raised by the women who did not attend ANC included: limited financial<br />

resources, influence of family members, family responsibilities, women don’t realise they are<br />

pregnant, <strong>and</strong> difficulty in obtaining time off work.<br />

Examining themes from the home births, women mention transport, attitude of nurses <strong>and</strong> lack<br />

of nurses’ recognising labour as health systems issues which prevented them from making it to<br />

the hospital or clinic for delivery. With regard to community issues related to place of delivery<br />

women discussed fear of problems in labour as the primary reason for wanting to deliver in a<br />

health facility but that fear of labour ward nurses, family responsibilities <strong>and</strong> themselves not<br />

recognising labour as reasons why they did not make it to the health facility for delivery.<br />

There are a number of barriers to accessing both antenatal <strong>and</strong> maternity services. In many<br />

cases multiple reasons for not attending antenatal or maternity services were given. It is<br />

concerning to note a substantial number of home deliveries took place with only children<br />

present.<br />

Verbal Autopsies of <strong>Maternal</strong> Deaths<br />

The causes of death for the 18 cases were: AIDS = 12 (67%); Other Non-Pregnancy Related<br />

Infection = 3 (16.5%); <strong>and</strong> Direct Perinatal Causes = 3 (16.5%). All but one mother died<br />

postpartum, <strong>and</strong> all of the AIDS deaths died after a prolonged period of illness. The majority (12<br />

out of 18) of the deaths occurred in the hospital. Only in one of the non-hospital deaths was<br />

lack of transport considered a possible contributor.<br />

The majority of women had sought heath care without delay at the beginning of their illness.<br />

The women with chronic conditions clearly had regular contact with the public health care<br />

system, <strong>and</strong> many also had contact with private <strong>and</strong> traditional health systems. These women<br />

appeared to go first to the clinic or hospital in the public sector <strong>and</strong> when they did not get better<br />

consulted with either a private doctor, traditional healer or both.<br />

The majority of deaths in mothers in this study were due to AIDS-related causes. These<br />

deaths were accompanied by several months of chronic illness <strong>and</strong> deterioration in health<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

xi


status until the women were no longer able to take care of themselves. Most described poor<br />

health as starting during pregnancy or around the time of delivery suggesting pregnancy may<br />

have contributed to deterioration in health in HIV-positive women. Many of these deaths<br />

involved extensive care by family members <strong>and</strong> continuous health seeking to multiple providers<br />

during the course of the illness. However, family members received very little if any<br />

communication from health providers about the condition of the terminally ill woman or her<br />

care. Denial <strong>and</strong>/or hopelessness were seen in many of these cases. Interestingly<br />

hopelessness, denial <strong>and</strong> lack of disclosure was not seen in the cases in Paarl where hospice<br />

care was available <strong>and</strong> the health care <strong>and</strong> system has been previously described to be of a<br />

higher quality with more resources.<br />

Although the majority of deaths appeared to be HIV <strong>and</strong> AIDS related, there were still deaths<br />

due to direct obstetric causes. One involved patient related avoidable factors <strong>and</strong> in the other<br />

two, health provider avoidable factors. Care must be taken not to overlook basic maternity<br />

service quality in the face of an often overwhelming HIV <strong>and</strong> AIDS p<strong>and</strong>emic.<br />

Verbal Autopsies of Infant Deaths<br />

The mean age of the infants who died was 16.7 weeks, ranging from one day to 48 weeks.<br />

Three babies died under one week of age. Causes of death were primarily infectious diseases<br />

(Age at death <strong>and</strong> Suspected Causes of Death in Infants).<br />

The HIV status of many of the infants was unknown as they died before an HIV test was done.<br />

To place the above deaths in context - overall there were 75 infant deaths in the Good Start<br />

Cohort Study. Nine month old mortality rates in infants born to HIV-positive women was 10.1%<br />

while for those born to HIV-negative women it was 3.7% (p=0.003).<br />

Age at death <strong>and</strong> Suspected Causes of Death in Infants<br />

• Child’s age at death:<br />

Less than 1 wk - 3 (8%)<br />

1 - 4 weeks - 2 (5%)<br />

5 - 24 weeks - 26 (65%)<br />

25 - 48 weeks - 9 (23%)<br />

• Suspected causes of death:<br />

Gastro-intestinal Infection - 16<br />

Pneumonia - 15<br />

Prematurity - 2<br />

TB – 2<br />

Unknown - 2<br />

Sudden Infant Death Syndrome - 3<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

xii


Themes that emerged from the qualitative results regarding factors that influenced utilisation of<br />

child health services included:<br />

• Socio-economic constraints - once again this focuses on transportation issues such as<br />

no money for transport to the clinic or hospital.<br />

• Beliefs about causes of illness - “Ishawe Yinyoni" (witchcraft) was blamed for the infant<br />

death in one case.<br />

• Lack of awareness of danger signs in infants - several mothers stated that they did not<br />

realise the seriousness of the child's condition <strong>and</strong> therefore delayed seeking care.<br />

• Poor quality of care - in several cases the infants had been seen at the clinic or<br />

hospital <strong>and</strong> been sent home without recognition of the seriousness of the illness as<br />

the child died later that day.<br />

• Role of traditional healers - traditional healers were used, but again this was only have<br />

the mothers had taken the infant to the clinic or hospital <strong>and</strong> the infants condition did<br />

not improve or the clinic was out of stock of medicines.<br />

• No difference in health seeking behaviour between HIV-positive <strong>and</strong> HIV-negative<br />

mothers.<br />

These in-depth interviews made it possible to highlight the complex pathways <strong>and</strong> underlying<br />

mechanisms that precede the majority of infant deaths in high risk communities. They also<br />

highlighted many missed opportunities <strong>and</strong> poor quality of care that suggests many of the<br />

deaths were potentially avoidable.<br />

Facility Based Review of PMTCT Follow-up Services<br />

An in-depth review of the post-partum <strong>and</strong> newborn follow-up in the PMTCT programme in two<br />

sites, Paarl <strong>and</strong> Rietvlei, was conducted using document review <strong>and</strong> in-depth interviews with<br />

local service providers. Results suggest that information about the HIV transmission rate to<br />

infants on the PMTCT programme is not accessible or available at a sub-district or district level.<br />

As a result local health managers <strong>and</strong> managers of the PMTCT programme are unable to<br />

monitor the extent of the success of the PMTCT programme.<br />

Although the system in Paarl is complex, medicines for the programme, testing kits <strong>and</strong><br />

nutritional supplementation are available, <strong>and</strong> mothers on the PMTCT programme do not<br />

default. In Rietvlei however, although the referral pathway is simpler <strong>and</strong> all nurses are trained<br />

in VCT, the poor performance of the support services, in particular the pharmaceutical <strong>and</strong><br />

laboratory services <strong>and</strong> the frequent unavailability of infant formula appear to contribute to<br />

considerable defaulting from the programme.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

xiii


5. DISCUSSION: TRIANGULATION AND SUMMARY OF RESULTS<br />

In triangulating the results across the various sources of data in this study, many consistent<br />

themes emerged. This section provides a short summary of the primary themes that were seen<br />

in this analysis:<br />

• Transport <strong>and</strong> Distance to Care are the biggest problem faced by women <strong>and</strong> families<br />

in accessing health services.<br />

• Communication by health workers with families was shown to be inadequate leading to<br />

a decreased confidence in the health services.<br />

• Health Seeking Behaviour is good, <strong>and</strong> despite often poor treatment <strong>and</strong> lack of<br />

communication by the health services, the study showed that most people first seek<br />

help from the clinic or hospital <strong>and</strong> only when failed by the Western medical system did<br />

they access traditional medicine. Women <strong>and</strong> families appear to only delay or not<br />

access services when they cannot get there (see transport above) not because they do<br />

not want to access services, or do not feel the services are valuable.<br />

• Treatment by health providers <strong>and</strong> quality of care as reported by the mothers <strong>and</strong><br />

families was mixed, as examples of both good <strong>and</strong> poor treatment <strong>and</strong> care were cited<br />

by respondents.<br />

• HIV/AIDS is a major issue but we cannot overlook basic maternity <strong>and</strong> neonatal service<br />

quality.<br />

• Families <strong>and</strong> Communities are untapped resources that play a crucial role in<br />

determining health seeking behaviour <strong>and</strong> utilisation of services.<br />

6. RECOMMENDATIONS<br />

1. 24-hour emergency transport services must be available within each community for<br />

emergency obstetric <strong>and</strong> paediatric care.<br />

2. Community education about maternal <strong>and</strong> infant health <strong>and</strong> danger signs is imperative.<br />

3. Hospital protocols for assessment <strong>and</strong> treatment of women <strong>and</strong> infants must be<br />

reviewed <strong>and</strong> current st<strong>and</strong>ards must be implemented.<br />

4. All facilities must be adequately supplied with the essential medicines <strong>and</strong> supplies to<br />

promote maternal <strong>and</strong> infant health.<br />

5. Sensitivity training for hospital staff working with mothers <strong>and</strong> infants should be<br />

explored <strong>and</strong> communication with families needs to be enhanced.<br />

6. Given that Nevirapine is successful in reducing the transmission of HIV to newborns, it<br />

is essential that the PMTCT programme functions well <strong>and</strong> is monitored effectively.<br />

7. HIV <strong>and</strong> AIDS services need to be exp<strong>and</strong>ed, integrated <strong>and</strong> comprehensive.<br />

8. Cooperation <strong>and</strong> communication with families <strong>and</strong> communities needs to be enhanced.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care<br />

xiv


<strong>COMMUNITY</strong> <strong>BASED</strong> <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

<strong>Maternal</strong> <strong>and</strong> Neonatal Follow Up Care<br />

Final Report<br />

1. INTRODUCTION<br />

Reduction of mortality <strong>and</strong> morbidity in both mothers <strong>and</strong> newborns has been identified as<br />

priority areas needing urgent attention by the Department of Health (DoH). The maternal<br />

mortality ratio for South Africa was estimated in the South African Demographic <strong>and</strong> Health<br />

Survey of 1998 to be 150/100 000 births. 1 This rate is however, thought to be rising, <strong>and</strong> the<br />

estimate from the latest Saving Mothers Report 2 places it at 175-200/100 000 births. The extent<br />

of morbidity is not known but it is estimated that for every woman that dies of a pregnancy<br />

related complication, 20 more suffer from morbidity such as vesico-vaginal fistulae which may<br />

be severe <strong>and</strong> lead to long term disabilities. 3<br />

According to the Saving Mothers report, since 1999 non-pregnancy related infections have<br />

become the main cause of maternal mortality in South Africa (33.7%), 2 mainly due to with<br />

AIDS. Hypertensive complications during pregnancy are the second commonest cause of<br />

mortality (18.1%) followed by obstetric haemorrhage (13.8%). Poor transport <strong>and</strong> lack of<br />

intensive care services were the major administrative problems reported. Medical personnel<br />

related problems included poor initial assessment <strong>and</strong> diagnosis of cases especially at<br />

secondary level of care, failure to follow st<strong>and</strong>ard protocols at primary <strong>and</strong> secondary levels<br />

<strong>and</strong> poor monitoring of patients at all levels of care.<br />

Over the past three years prevention of mother-to-child transmission of HIV (PMTCT)<br />

programmes have been established in most of the African countries of which the majority are<br />

in the process of scaling up PMTCT programmes to achieve national coverage. These<br />

programmes have often been implemented in a vertical fashion with little integration into<br />

existing maternal <strong>and</strong> child health programmes. Vertical PMTCT programmes interventions<br />

with sole emphasis on PMTCT may miss valuable opportunities to avert common obstetric <strong>and</strong><br />

postpartum emergencies.<br />

PMTCT has the potential to strengthen maternal <strong>and</strong> child health services while reducing<br />

vertical transmission at the same time. Integration of PMTCT into existing maternal <strong>and</strong> child<br />

health services may help to minimise stigma <strong>and</strong> ‘normalise’ PMTCT interventions as part of<br />

routine maternity care. Thus the synergy between PMTCT <strong>and</strong> safe motherhood programmes<br />

should improve maternal <strong>and</strong> newborn survival <strong>and</strong> wellbeing.<br />

There were two aims for carrying out this project. Firstly, to conduct a community situational<br />

analysis to determine factors that impact on the utilisation of maternal health services, with a<br />

focus on PMTCT services. Secondly, to encourage health facilities to use the results of the<br />

research to develop appropriate interventions for improving acceptability <strong>and</strong> utilisation of safe<br />

motherhood <strong>and</strong> PMTCT programmes as well as to test strategies for integrating PMTCT within<br />

maternal <strong>and</strong> child health services.<br />

To this end, the <strong>Maternal</strong>, Child, Women’s Health <strong>and</strong> Nutrition (MCWHN) directorate, with<br />

financial assistance from Centers for Disease Control (CDC) contracted Health Systems Trust<br />

(HST) <strong>and</strong> South African Nurses in Business (SANIB) to conduct a community-based<br />

situational analysis on maternal <strong>and</strong> neonatal follow-up care. The situation analysis was to be<br />

conducted throughout the country <strong>and</strong> the findings of this study are to be used to target<br />

interventions aimed at improving maternal <strong>and</strong> infant mortality rates, with a particular focus of<br />

enhancing utilisation of services.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 1


2. OBJECTIVES OF THE <strong>SITUATIONAL</strong> <strong>ANALYSIS</strong><br />

The objectives of the situation analysis were:<br />

1. To determine factors influencing utilisation of maternal health services <strong>and</strong> barriers to<br />

utilisation of maternal health services (including loss to follow-up of mothers <strong>and</strong> infants<br />

in the PMTCT programme).<br />

2. To determine the level of awareness of the risk factors associated with poor maternal<br />

<strong>and</strong> perinatal health outcomes among women <strong>and</strong> men.<br />

3. To determine the health seeking behaviours of HIV-positive <strong>and</strong> HIV-negative pregnant<br />

women.<br />

4. To identify available programmes that empower women with appropriate information to<br />

participate effectively in promotion of the safer motherhood programme.<br />

5. To assess the available material that provide communities with appropriate <strong>and</strong><br />

necessary information for effective participation in safer motherhood <strong>and</strong> PMTCT<br />

programmes as well as reproductive health in general.<br />

HST together with the University of the Western Cape (UWC) took responsibility for providing<br />

insight for the first three objectives outlined above. Thus this report covers the findings<br />

related to objectives one to three from the HST/UWC consortium.<br />

The HST/UWC consortium was also responsible for providing technical assistance <strong>and</strong><br />

mentoring to SANIB. Findings from the SANIB focus group research on objectives four <strong>and</strong> five<br />

will be made available in a separate report.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 2


3. METHODS<br />

Description of Research Sites<br />

In order to capitalise on extensive background data <strong>and</strong> to build on ongoing research, three<br />

sites were chosen for the research related to objectives one to three, where the HST/UWC<br />

consortium has longst<strong>and</strong>ing research links. These sites are in the Western Cape, KwaZulu-<br />

Natal <strong>and</strong> the Eastern Cape. The three sites in these provinces represent diverse geographical<br />

settings in South Africa, namely; a peri-urban township, a rural district <strong>and</strong> a peri-urban farming<br />

region as well as differences in HIV prevalence <strong>and</strong> socio-economic situations. Also<br />

prospective PMTCT cohort studies have recently been completed at these sites.<br />

The Paarl District - is a peri-urban/rural area situated 60 km from Cape Town in the heart of<br />

the Winel<strong>and</strong>s region. The approximate total population for the district is 198 546. Paarl East<br />

Hospital currently renders 97% of antenatal care services in the district with an average of 210<br />

- 381 new bookings per month. All deliveries are done at Paarl Regional Hospital.<br />

Rietvlei in Umzimkulu Sub-district in the Eastern Cape - is situated in one of the poorest<br />

sub-district of South Africa. The 1998 Demographic <strong>and</strong> Health Survey estimated an infant<br />

mortality rate of 99/1000 live births. Diarrhoea, malnutrition <strong>and</strong> lower respiratory tract<br />

infections are the major causes of infant mortality. A community survey in the neighbouring<br />

Mount Frere district found out that 40% of mothers reported delivering their last child at home. 4<br />

Umlazi - is a peri-urban formal township with interspersed informal settlements situated roughly<br />

20km southwest of Durban, in the Durban-Ilembe health district in KwaZulu-Natal Province.<br />

There is one regional hospital, Prince Mshiyeni Memorial Hospital that serves as a referral<br />

hospital for the surrounding feeder clinics. Maternity services (including a 40-bed antenatal<br />

ward <strong>and</strong> 40-bed labour ward) <strong>and</strong> paediatric services (including a neonatal unit <strong>and</strong> paediatric<br />

outpatient services) are available at the hospital.<br />

District level health indicators cited in the recent South African Health Review 2005 5 for these<br />

areas showed the following: average ANC visits 2.9 for Alfred Nzo (Rietvlei), 2.9 for eThekwini<br />

Metro (Umlazi) <strong>and</strong> 5.7 for West Coast (Paarl); immunisation coverage under 1 year of 92%,<br />

80% <strong>and</strong> 97% for Alfred Nzo, eThekwini <strong>and</strong> West Coast, respectively; <strong>and</strong> PHC utilisation rate<br />

(annualised) of 1.5 for Alfred Nzo, 1.9 for eThekwini <strong>and</strong> 2.8 for West Coast.<br />

To address objectives four <strong>and</strong> five focus groups discussions were held by SANIB in rural,<br />

urban <strong>and</strong> peri-urban areas in all 9 provinces. As mentioned above, findings from the focus<br />

groups discussions will be made available in a separate report.<br />

Study Design<br />

A cross sectional descriptive study was conducted. Quantitative <strong>and</strong> qualitative data were<br />

collected from households which participated in the national PMTCT cohort study as well as<br />

those which did not participate in this study. This included households with HIV-positive <strong>and</strong><br />

HIV- negative women as well as households with women of unknown HIV serological status.<br />

Participants were selected r<strong>and</strong>omly for each of the three sub-samples from each of the three<br />

PMTCT cohort sites. Twenty (20) women who were known to be HIV positive <strong>and</strong> 20 women<br />

who were known to be HIV-negative were r<strong>and</strong>omly sampled from the list of original<br />

participants. CHWs that assisted with the cohort study were asked to identify all women in their<br />

communities who had delivered a baby in the last 9-12 months for the non-cohort study<br />

participants. This included women who had home births or did not attend antenatal clinic.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 3


Twenty (20) women were then r<strong>and</strong>omly selected from the list of births generated by the CHWs<br />

to provide a sample of women who were not in the PMTCT cohort study. Those who had<br />

home births <strong>and</strong> those who did not attend antenatal care were not included in this study but<br />

were saved for the case studies. A sample of 60 households per site yields 95% confidence<br />

intervals of ± 7-10% within each site <strong>and</strong> ± 5-7% for the total sample for the data items listed<br />

below (assumes strata <strong>and</strong> sites can be combined). A husb<strong>and</strong>/partner or another significant<br />

household member was also interviewed from each of these 60 households to explore<br />

knowledge <strong>and</strong> underst<strong>and</strong>ing of family members around pregnancy risks <strong>and</strong> maternity care.<br />

In addition, to the cross-sectional descriptive survey qualitative case-studies of adverse<br />

outcomes were also conducted. A sub-sample of women/households was purposely selected<br />

to examine particular cases of interest, for example households with a known maternal or infant<br />

death, a mother with no antenatal care or who had a home birth. The semi-structured<br />

interviews in these households were supplemented with a qualitative interview examining the<br />

circumstances <strong>and</strong> issues around the event of interest, e.g. the maternal death. Having prior<br />

data to identify relevant case studies was a key strength of this project. As this component is<br />

more qualitative in nature, households who had experienced the incidents of interest were<br />

identified <strong>and</strong> the key informants in these households interviewed using an in–depth interview<br />

technique. Approximately 20 case studies were to be done in each of the sites. The majority of<br />

women were sampled from the Cohort Study, except those with no antenatal care or home<br />

birth who were selected from non-Cohort Study women identified by CHWs.<br />

Home visits were made to the selected women <strong>and</strong> a written informed consent was obtained<br />

from each woman in the study prior the interview. A written informed consent was also<br />

obtained from those women who had participated in the PMTCT cohort study. Data was<br />

collected using semi-structured interviews with pregnant women, partners <strong>and</strong> other key<br />

informants. The instruments had modules on basic socio-demographic data; utilisation of <strong>and</strong><br />

barriers to utilisation of maternal health services; knowledge of risk factors associated with poor<br />

maternal <strong>and</strong> perinatal health outcomes; frequency of postnatal health service contacts;<br />

sources of community information on maternal health <strong>and</strong> PMTCT; <strong>and</strong> attitudes towards<br />

maternal health services.<br />

Where it was found that a household experienced a known maternal or infant death, or women<br />

did not attend ANC or delivered at home, or defaulted from the PMTCT programme, an<br />

additional in-depth qualitative interview examining the circumstances <strong>and</strong> issues around the<br />

event of interest was administered. <strong>Maternal</strong> deaths included deaths from the PMTCT cohort<br />

study, deaths identified in a review of the local hospital delivery register, or deaths identified by<br />

the CHWs.<br />

As the interviews included family planning <strong>and</strong> postpartum care it was decided that women who<br />

did not access these services would not be examined as a separate sub-group.<br />

It was not possible to identify participants on the PMTCT programme who had defaulted <strong>and</strong><br />

avoided obtaining their infants’ HIV testing results or full infant immunisation at nine months. A<br />

facility based qualitative case study was therefore conducted at two of the three sites, to<br />

compare PMTCT programmes, which have been in existence for four years, <strong>and</strong> determine<br />

what systems factors contribute to the functioning of these programmes. The study was<br />

conducted at Paarl <strong>and</strong> Rietvlei to determine reasons for defaulting from the programme.<br />

Umlazi unfortunately did not participate in this sub-study because the researchers were not<br />

aware at the time that PMTCT defaulters could not be identified at this site either.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 4


Data Collection<br />

The study utilised tools that were primarily adapted from established instruments as described<br />

below. The interviewers had worked as field staff in the Good Start Cohort Study therefore they<br />

had good experience in both semi-structured <strong>and</strong> qualitative interviewing techniques.<br />

However, they received one week of training on the current study tools. A sample of interviews<br />

done by each field staff during the training was observed <strong>and</strong> discussed with a project<br />

supervisor. All study tools were piloted in 3-5 women in each study site <strong>and</strong> adjustments made<br />

prior to the interviews. Data was collected via interviews done in the homes of the study<br />

participants except in Umlazi where some individuals preferred to have the interviews<br />

conducted at the clinic.<br />

Semi-structured interviews<br />

Data was collected from mothers, partners <strong>and</strong> other key individuals by trained field staff. A<br />

component of the tool included a knowledge assessment of factors associated with poor<br />

maternal <strong>and</strong> infant health outcomes identified by the National Committee for the Confidential<br />

Enquiry into <strong>Maternal</strong> Death (NCCEMD) <strong>and</strong> PMTCT pilot evaluations, including warning signs<br />

in pregnancy, HIV <strong>and</strong> AIDS <strong>and</strong> infant feeding options. The tool was adapted from the original<br />

PMTCT cohort study tools <strong>and</strong> the Safe Motherhood Needs Assessment. 6<br />

Case Studies <strong>and</strong> Verbal Autopsies<br />

In-depth interviews were conducted with the mother, partner or key individual. The maternal<br />

verbal autopsies were all conducted by a midwife, <strong>and</strong> most of the infant verbal autopsies were<br />

conducted with the assistance of a doctoral student in public health from Johns Hopkins<br />

University. Both verbal autopsy tools were adapted from the most recent WHO recommended<br />

tools for maternal 7 <strong>and</strong> infant verbal autopsies. 8<br />

Facility Review<br />

The review consisted of semi-structured interviews with 16 respondents who were all involved<br />

in the management <strong>and</strong> running of the PMTCT programme. These included sub-district HIV<br />

<strong>and</strong> AIDS Coordinators, PMTCT Coordinators, maternity matrons, maternity ward <strong>and</strong> PHC<br />

clinic staff.<br />

Data capturing<br />

Answers to open-ended questions in the semi-structured interviews were reviewed by the<br />

epidemiologist <strong>and</strong> a post-graduate statistics student who developed the relevant codes. All<br />

questionnaires were then post-coded prior to data entry into Excel. Data was entered into an<br />

EXCEL spread sheet <strong>and</strong> analysed using both SAS <strong>and</strong> EPI-INFO software packages.<br />

Since the demographic data had already been asked from mothers participating in the PMTCT<br />

cohort study, these participants were not asked these questions again. A list of cohort study<br />

identification numbers was sent to the cohort study data manager along with a list of<br />

corresponding socio-demographic variables <strong>and</strong> this data was forwarded for merging with the<br />

semi-structured study data. Note that the same question formats <strong>and</strong> codes were used in both<br />

studies.<br />

Quality Assurance<br />

The tools for the study were developed based on internationally available instruments. Each<br />

tool was piloted <strong>and</strong> circulated for comment amongst all researchers involved in the project as<br />

well as the MCWHN directorate of the NDOH <strong>and</strong> CDC.<br />

Field staff were trained <strong>and</strong> provided with st<strong>and</strong>ard operating procedures for interviewing. Data<br />

entry was regularly supervised <strong>and</strong> monitored. Completed interviews were checked before<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 5


submission to the data capturer who double entered all data. A r<strong>and</strong>omly selected 10% sample<br />

of data entered was compared directly to the hard-copy questionnaires <strong>and</strong> no errors were<br />

found. This was indicative of a high quality data entry. Data checks were run after data entry<br />

for out of range values <strong>and</strong> data inconsistencies <strong>and</strong> all errors were corrected.<br />

Data Analysis<br />

Quantitative data were analysed using EPI-INFO 2002 or SAS . Primarily descriptive<br />

statistics were employed, including means <strong>and</strong> st<strong>and</strong>ard deviation for continuous data, <strong>and</strong><br />

frequencies <strong>and</strong> cross-tabulations for categorical data. Socio-demographic data was obtained<br />

from both semi-structured household interviews <strong>and</strong> qualitative case studies <strong>and</strong> are reported<br />

combined to give an overall description of the study population. Analysis of the semi-structured<br />

interviews is focused around the three study objectives. Analytic analyses focused only on<br />

factors associated with utilisation score <strong>and</strong> comparison of HIV positive <strong>and</strong> HIV negative<br />

women. Uncorrected chi-square <strong>and</strong> corresponding p-values, with alpha set at 0.10, were used<br />

for the analytic analyses.<br />

A content-theme approach focusing on study questions was used for the qualitative analysis.<br />

Two researchers from the study team were allocated to each type of qualitative interview as<br />

follows: No ANC/Home Births (ML, TD), <strong>Maternal</strong> Verbal Autopsies (DJ, NM), <strong>and</strong> Infant<br />

Verbal Autopsies (AW, MC). The researchers read the notes <strong>and</strong> completed interview forms<br />

focusing on the three general themes as outlined by the study questions/objectives.<br />

The data from the Facility Based PMTCT Follow-up Study is a combination of quantitative data<br />

from the data available at the two sites; <strong>and</strong> a qualitative process description focusing on the<br />

follow-up services at each facility; <strong>and</strong> the challenges described by the key informants.<br />

Finally, data from both the quantitative semi-structured interviews, the three types of case<br />

studies, <strong>and</strong> the facility review were triangulated. Importantly, the qualitative case-study<br />

analyses were all conducted independently - i.e. each team of reviewers conducted their own<br />

analysis without prior knowledge of the results from the other case studies or the results of the<br />

quantitative household interviews. This lends validity to the common findings across these<br />

various methods of data collection <strong>and</strong> analysis as the themes <strong>and</strong> findings were derived<br />

independently <strong>and</strong> only later were commonalities noted across the different sources of data.<br />

Limitations<br />

Due to a short study time frame (8 months from initiation until analysis) <strong>and</strong> limited funding, this<br />

study has a relatively small sample size for the quantitative component (semi-structured<br />

household interviews). This limits the study power; therefore, alpha was set at 0.10 when<br />

examining predictors of, for example the utilisation, outcomes or for comparisons across<br />

groups.<br />

Also, when examining overall estimates for quantitative data it must be noted that there was<br />

block sampling - i.e. even distribution of subjects who were HIV- positive, HIV- negative <strong>and</strong><br />

HIV unknown serological status - such that overall estimates are not adjusted for actual<br />

population distribution. However, when examined for primary outcomes (utilisation <strong>and</strong> quality)<br />

there were not substantial differences across the HIV status groups, suggesting that the<br />

estimates probably are reasonably representative of the rates in the study sites, which is why<br />

population weighting was not done in the final analyses.<br />

The women with known HIV serological status were r<strong>and</strong>omly selected from the sample in the<br />

larger Good Start Cohort Study of PMTCT. All the infant deaths <strong>and</strong> the majority of the<br />

maternal deaths were also selected from the Good Start sample. The Good Start sample<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 6


inclusion criteria required women to have attended ANC or delivered in a hospital, so in areas<br />

where ANC attendance <strong>and</strong> hospital delivery are not as high, this sample would not be fully<br />

representative. For this reason a sample of non-Good Start women was also included as one<br />

of the strata. These women were identified by local CHWs <strong>and</strong> from delivery registers. From<br />

these lists subjects were r<strong>and</strong>omly selected. The lists from the CHWs were not likely to be a<br />

comprehensive population based sample, but should be reasonably representative of the<br />

women accessible to the CHWs in the local community in these three study sites.<br />

As noted above the three study sites were not r<strong>and</strong>omly selected. They were selected to<br />

represent three of the major types of communities found in South Africa. Therefore, results are<br />

generally presented by site. However, these sites should be reasonably representative of<br />

similar communities across South Africa.<br />

Information bias is expected to be low in this study as the interviewers were all very<br />

experienced having just completed the three year Good Start Study <strong>and</strong> had good community<br />

access. In addition the study tools were adapted either from the Good Start Study or from<br />

established international tools published by the World Health Organization. However, the<br />

potential for recall bias exists as the women were being asked to recall events <strong>and</strong> care during<br />

their last pregnancy. On average the interviews took place approximately 15 months after the<br />

index birth. While this is a relatively long recall period, pregnancy <strong>and</strong> birth are significant<br />

events in a woman's life <strong>and</strong> recall is generally thought to be relatively good for major<br />

components of the event.<br />

Ethics<br />

The final study protocol was approved by the Research Ethics Committee at the University of<br />

the Western Cape. Written informed consent was obtained from all study participants. No<br />

specific risks or benefits were expected from this study due to its observational nature.<br />

Participants were informed that they could discontinue participation at any time without any risk<br />

to future health care.<br />

Collaboration <strong>and</strong> Protocol Development<br />

This project involved collaboration between the South African National Department of Health<br />

(NDoH), the U.S. based Centers for Diseases Control (South Africa), The University of the<br />

Western Cape School of Public Health, The Health Systems Trust. The Medical Research<br />

Council of South Africa, <strong>and</strong> the South African Nurses in Business (SANIB). All partners<br />

participated in protocol <strong>and</strong> tools development; data analysis <strong>and</strong> reporting of findings. Regular<br />

meetings of partners were held during the formative, data collection, analysis <strong>and</strong> reporting<br />

phases of the project.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 7


4. RESULTS<br />

4.1. DEMOGRAPHIC AND SOCIO-ECONOMIC INFORMATION<br />

The results presented in this section reflect data on all women who participated in the study,<br />

from the semi-structured interviews <strong>and</strong> case studies, as well as the information from the key<br />

informants interviewed (i.e. household members). Detailed tables containing these data can be<br />

seen in the appendices. Results giving an overview of the number of respondents, their<br />

demographic profile, socio-economic status <strong>and</strong> access to health services are presented<br />

below.<br />

Number of Respondents<br />

Table 1 shows the categories <strong>and</strong> number of respondents per site. In total there were 226<br />

respondents. Of these, 68 were from Paarl, 78 from Rietvlei <strong>and</strong> 81 from Umlazi. Of the 226<br />

respondents, 178 participated in semi-structured interviews <strong>and</strong> 48 in in-depth studies. In<br />

addition 178 key informants were interviewed<br />

Table 1: Categories <strong>and</strong> Number of Study Respondents<br />

Paarl Rietvlei Umlazi<br />

SEMI-STRUCTURED INTERVIEWS<br />

Total number of HIV+ Good Start mothers<br />

20 20 20<br />

interviewed<br />

Total number of HIV- Good Start mothers<br />

20 20 20<br />

interviewed<br />

Total number of unknown status non- Good<br />

20 20 18<br />

Start mothers interviewed<br />

Key Informant Interviews (Household<br />

60 60 58<br />

members)<br />

IN-DEPTH CASE STUDIES<br />

Number of maternal verbal autopsies 3 5 10<br />

Number of infant verbal autopsies 0 10 5<br />

Number of women with no ANC<br />

0 1 5<br />

(facility birth)<br />

Home births with ANC 2 5 3<br />

Home births no ANC 2 3 2<br />

Number of PMTCT mothers with no follow Facility Facility substudy<br />

0<br />

up/no infant HIV testing<br />

sub-study<br />

Total Number of Respondents per site 68 84 83<br />

Demographics of Study Respondents<br />

Table 2 shows the demographic data per site. The average age of the women interviewed (not<br />

household members) was similar across the sites i.e. between 25 <strong>and</strong> 27 years. The age of the<br />

majority of infants (born in last pregnancy) was between 10 <strong>and</strong> 34 months, with only 20-31%<br />

of infants less between 0 <strong>and</strong> 9 months of age. The mean age across sites was similar (Paarl<br />

14 months, Rietvlei 15 months <strong>and</strong> Umlazi 16 months, p=0.61). The number of years spent in<br />

school was slightly higher in Umlazi. In Paarl <strong>and</strong> Rietvlei the mean of the last st<strong>and</strong>ard<br />

passed was St<strong>and</strong>ard 7 <strong>and</strong> in Umlazi it was St<strong>and</strong>ard 8. However this difference was not<br />

significant. There were significantly more single women in Umlazi (81%) than at the other two<br />

sites (Paarl (69%) <strong>and</strong> Rietvlei (51%).<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 8


Table 2: Demographic Data<br />

Average age of mothers across the sites<br />

Paarl Rietvlei Umlazi<br />

Mean 24.97 25.41 26.84<br />

Std Dev 5.88 6.24 7.36<br />

# % # % # %<br />

Age of infants at time of interview<br />

0 - 4 months 7 (12) 6 (12) 3 (7)<br />

5 - 9 months 11 (19) 7 (14) 6 (13)<br />

10 -18 months 18 (31) 24 (48) 18 (39)<br />

19 - 34 months 22 (38) 13 (26) 19 (41)<br />

Mean of the last st<strong>and</strong>ard of education passed across sites<br />

Mean 7.65 7.48 8.27<br />

Std Dev 2.24 2.37 2.11<br />

Marital Status<br />

Single, Divorced, Widowed 45 (69) 39 (51) 58 (81)<br />

Married, Co-habitating 20 (31) 37 (49) 14 (19)<br />

Total Number 65 76 72<br />

(n = 213)<br />

Socio-economic Status<br />

The results for a number of socio-economic variables show that participants from Rietvlei have<br />

significantly poorer resources than those in Paarl <strong>and</strong> Umlazi. As can be seen in Graph 1, forty<br />

two percent (42%) of the participants in Rietvlei get their household water from rivers or<br />

streams. In contrast 91% of the participants in Paarl <strong>and</strong> 80% in Umlazi have piped water<br />

inside their houses or yards. Also in Rietvlei 95% of the participants had pit latrines while 92%<br />

of the participants in Paarl <strong>and</strong> 52% in Umlazi had flush toilets. In addition 66% of the<br />

participants from Rietvlei use wood as their main cooking fuel whilst 74% in Umlazi <strong>and</strong> 53% in<br />

Paarl use electricity as their main cooking fuel. There were also large differences between the<br />

sites in terms households’ access to employment. In Paarl <strong>and</strong> Umlazi more than 70% of<br />

households had someone employed compared to 56% of households in Rietvlei (Appendix A1).<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 9


Graph 1: Comparing Household Water Source at the Three Sites<br />

60<br />

50<br />

40<br />

Percentage<br />

30<br />

Piped-inside<br />

Piped-yard<br />

Piped-public<br />

River-stream<br />

Borehole/Well<br />

20<br />

10<br />

0<br />

Paarl Umlazi Rietvlei<br />

N=232<br />

Mode of Transport <strong>and</strong> Travelling Time to Health Facilities<br />

The information presented in this section was collected from all the women (i.e. 235), who<br />

participated in both semi-structured interviews <strong>and</strong> case studies. There were significant<br />

differences between the sites in terms of the mode of transport <strong>and</strong> the time needed to reach<br />

the health facilities (Appendix A3). Women in Rietvlei lived substantially longer distances away<br />

from both the clinics <strong>and</strong> the hospitals than in the other two sites. The mean distance to clinic<br />

for the respondents from Rietvlei was 48kms whilst in Paarl <strong>and</strong> Umlazi the mean distances<br />

were 18kms <strong>and</strong> 25kms respectively. More women walk to clinics in Paarl <strong>and</strong> Umlazi than in<br />

Rietvlei because the distances are shorter. The mean distance for respondents from the<br />

hospital in Rietvlei is 84 kms whilst in Paarl <strong>and</strong> Umlazi the mean distances are 32 kms <strong>and</strong> 35<br />

kms respectively. In all sites women predominantly use taxies or buses to get to the hospitals.<br />

Graph 2 shows the difference in travel times to the hospitals <strong>and</strong> clinics in each site. The<br />

average time to reach the hospital in Rietvlei (84 minutes, st<strong>and</strong>ard deviation 66 minutes) is of<br />

particular concern.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 10


Graph 2: Comparing Average Travel Times to the Nearest Clinic <strong>and</strong> Hospital from the<br />

Three Sites<br />

90<br />

80<br />

Minutes<br />

70<br />

60<br />

50<br />

40<br />

Paarl<br />

Umlazi<br />

Rietvlei<br />

30<br />

20<br />

10<br />

0<br />

Average time to clinic<br />

Average time to hospital<br />

N = 232<br />

4.2. SEMI-STRUCTURED HOUSEHOLD INTERVIEWS<br />

This section reviews the results from the semi-structured interviews conducted in the<br />

households with the women <strong>and</strong> a family member. The section is divided into three parts<br />

corresponding to the three primary study objectives. Information in this section was drawn from<br />

the 178 semi-structured interviews.<br />

SECTION 1: FACTORS ASSOCIATED WITH UTILISATION OF HEALTH SERVICES<br />

In order to examine factors associated with the utilisation of maternity <strong>and</strong> newborn services, a<br />

composite index was developed using the six items listed in Table 3. One point was allocated<br />

for each item with a score of 1, indicating better, <strong>and</strong> 0, poorer utilisation. A mean score was<br />

then derived, which indicated that Paarl had the best utilisation score <strong>and</strong> Rietvlei the lowest.<br />

The score was further dichotomised to =5, with >=5 indicating better utilisation of<br />

services. Paarl had the highest percentage of women (77%) with a score of at least five <strong>and</strong><br />

Rietvlei the lowest at only 11%.<br />

It is encouraging to note that a high proportion of women across the three sites i.e. 100% in<br />

Paarl <strong>and</strong> 95% in Umlazi <strong>and</strong> Rietvlei attended antenatal care in all of their pregnancies.<br />

Similarly a high proportion of women delivered in a hospital or a clinic (95% in Umlazi, 92% in<br />

Paarl <strong>and</strong> 80% in Rietvlei). Family planning uptake also appears to be high across the sites.<br />

However, many women failed to comply with the first antenatal visit. Less than half of women<br />

in Umlazi <strong>and</strong> Rietvlei <strong>and</strong> slightly over half in Paarl had their first antenatal visit during the first<br />

trimester of pregnancy. With regard to postnatal health seeking behaviour, less than a third of<br />

women in Rietvlei brought their infants to a health centre prior to six weeks of age <strong>and</strong> less<br />

than a 25% of mothers had a postnatal check up within six weeks postpartum.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 11


Table 3: Utilisation Score<br />

Variable Paarl Rietvlei Umlazi Total<br />

# (%) # (%) # (%) # (%)<br />

For all pregnancies<br />

Attended ANC in all<br />

60 (100) 57 (95) 55 (95) 172 (96)<br />

pregnancies<br />

Delivered in Hospital/Clinic for 55 (92) 48 (80) 55 (95) 158 (89)<br />

all pregnancies<br />

For last pregnancy<br />

Began ANC in months 0-4 34 (57) 20 (34) 26 (46) 80 (46)<br />

1 st infant follow-up visit prior to 56 (93) 16 (27) 48 (84) 120 (68)<br />

6 weeks of age<br />

1 st maternal follow-up visit 55 (92) 10 (18) 21 (38) 86 (49)<br />

prior to 6 weeks post-delivery<br />

Currently using Family<br />

Planning<br />

47 (78) 43 (73) 47 (89) 137 (80)<br />

Mean Utilisation Score (1<br />

point for each of above)<br />

5.1<br />

(SD=0.85)<br />

3.3<br />

(SD=1.1)<br />

4.5<br />

(SD=0.82)<br />

P-value<br />

(comparing mean<br />

differences)=0.00<br />

Utilisation Score >=5 46 (77) 6 (11) 26 (54) 78 (47)<br />

P=0.00<br />

Individual factors associated with high utilisation were also examined (Appendix A4). Women<br />

who were younger <strong>and</strong> single were more likely to have higher utilisation, possibly because they<br />

were seeking support or guidance from health professionals. Having someone employed in the<br />

household also increased utilisation, although average monthly income <strong>and</strong> other individual<br />

items related to socio-economic status were not associated with utilisation score. Living closer<br />

to the clinic or hospital; not having transport, financial <strong>and</strong> employment barriers to attending<br />

ANC or getting to the hospital also contributed to higher utilisation.<br />

Treatment of respondents by health staff was associated with service utilisation but showed<br />

somewhat inconsistent results. Poor treatment by health staff was listed as a barrier to ANC by<br />

only 3% of women. However, 48% of the women who did not cite poor treatment by health staff<br />

as a barrier to care were more likely to have an utilisation score of >=5. Fifteen percent (15%)<br />

of the women said friendly staff or nurses were a promoter of ANC attendance, but this was not<br />

significantly associated with higher utilisation score. Mixed treatment (both positive <strong>and</strong><br />

negative) by health staff during ANC was associated with higher utilisation, but none of the<br />

measures of satisfaction with care were associated with utilisation. Paradoxically, women who<br />

cited not being able to always follow health advice had higher utilisation scores. This could be<br />

explained by the fact that these women were frequent attendees, which gave women more<br />

opportunities to receive advice they could not follow. Neither pregnancy problems, nor HIV<br />

status were associated with utilisation.<br />

Finally, <strong>and</strong> perhaps most importantly, being told by a family member or friend to attend ANC;<br />

being told by health staff to return for care after delivery; <strong>and</strong> health staff discussing family<br />

planning after delivery were all associated with higher utilisation. These factors indicate that<br />

support <strong>and</strong> information from family <strong>and</strong> health staff may be able to improve attendance to<br />

maternity <strong>and</strong> newborn services. There was a positive correlation between the importance that<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 12


household members gave to women's health <strong>and</strong> women's utilisation of services. Interestingly,<br />

99% of household members felt women should attend ANC; that the family should make sure<br />

the woman attends ANC; <strong>and</strong> women should deliver in a health facility, so these questions<br />

were not predictive of utilisation due to lack of variability.<br />

Similar to the overall utilisation score, support items, along with distance to clinic were<br />

significantly associated with individual utilisation factors such as ANC attendance, <strong>and</strong><br />

postpartum newborn <strong>and</strong> maternal care <strong>and</strong> family planning (data not shown).<br />

Barriers <strong>and</strong> Promoters to attending ANC: In Paarl 27%, in Umlazi 28% <strong>and</strong> in Rietvlei 38%<br />

of the women indicated they had problems attending antenatal care. A lack of money for<br />

transport was the barrier most cited by women. Although money was listed as the biggest<br />

barrier to care, having money did not significantly promote ANC attendance. Support of family<br />

<strong>and</strong> friends was the strongest promoter of ANC attendance. This support varied from<br />

encouragement to assistance with transport <strong>and</strong> money. Eleven to fifteen percent (11-15%) of<br />

the women cited friendly staff <strong>and</strong> good quality care as promoters of ANC attendance.<br />

(Appendices A5 <strong>and</strong> A6).<br />

Why didn't you go to ANC earlier? The two main reasons for not starting ANC as scheduled<br />

were: firstly the long distances to the health facility <strong>and</strong> secondarily pregnant women felt fine so<br />

they thought it was alright to access ANC services later in her pregnancy. The proportion of<br />

women who cited the latter reason was substantially higher in Rietvlei (61%) compared to 14%<br />

in Umlazi <strong>and</strong> none in Paarl. It was interesting to note that the long distance to the clinic (cited<br />

by 28% of the women) <strong>and</strong> lack of money for transport (cited by 11% of the women) were the<br />

two most mentioned reasons in Paarl, even though geographically women in Paarl live closest<br />

to the clinics. (Appendix A7)<br />

Pregnancy Histories, Family Planning <strong>and</strong> Immunisations: The total number of births<br />

recorded in the study women was 105 in Paarl, 135 in Rietvlei <strong>and</strong> 122 in Umlazi. The average<br />

parity was 1.75 in Paarl, 2.25 in Rietvlei <strong>and</strong> 2.10 in Umlazi. There were more women with only<br />

one pregnancy in Paarl (53% of women vs. 18% in Rietvlei <strong>and</strong> 41% in Umlazi), while Rietvlei<br />

had more women with parity >=5 (7% in Rietvlei vs. 2% in Paarl <strong>and</strong> 5% in Umlazi).<br />

Complications were recalled by women in 28% - 38% of the pregnancies (Appendix A8).<br />

Hypertension, bleeding <strong>and</strong> infection were the most commonly cited complications (data not<br />

shown). Caesarean delivery was substantially higher in Umlazi (34% compared to 14% in<br />

Paarl <strong>and</strong> 25% in Rietvlei, p=0.002). Women working in either regular or irregular employment<br />

during their last pregnancy was higher in Paarl (35%) compared with 15% in Rietvlei <strong>and</strong> 28%<br />

in Umlazi (p=0.04). This is consistent with other socio-demographic trends described earlier.<br />

Responses to no antenatal care, home births <strong>and</strong> no skilled attendant at birth were low in all<br />

sites (Appendix A8) Interestingly current use of family planning was high in all three sites.<br />

Depo-Provera Injection as was the most commonly used method (Appendix A9). While<br />

maternity services <strong>and</strong> family planning utilisation were similar across sites, the level of<br />

complete immunisation coverage for age was substantially different. Rietvlei had the lowest<br />

percentage (16%) of children fully immunised while Paarl <strong>and</strong> Umlazi 71% <strong>and</strong> 57%,<br />

respectively (p=0.000). Although the numbers are small, there is a clear trend across all three<br />

sites for lower complete immunisation coverage in older children compared to younger children<br />

(Appendix A10).<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 13


SECTION 2: LEVELS OF AWARENESS OF RISK FACTORS AND SOURCES OF HEALTH<br />

INFORMATION<br />

2.1. Levels of Awareness of Risk Factors<br />

ANC <strong>and</strong> Delivery: Seventy five percent (75%) of the women interviewed knew that<br />

hypertension <strong>and</strong> oedema were risk factors. Between 50% <strong>and</strong> 74% of the women knew that<br />

decreased foetal movement <strong>and</strong> bleeding were risk factors, whereas less than 20% were<br />

aware that a loss of consciousness, anaemia, shortness of breath <strong>and</strong> a chronic cough were<br />

risk factors. Twelve percent of women were not aware of any warning signs in pregnancy.<br />

Women on average were only aware of 8 out of the 23 possible signs on the list. (Appendix<br />

A14)<br />

Postpartum - <strong>Maternal</strong> Risk Factors: Seventy five percent (75%) of the women interviewed<br />

knew that bleeding was a risk factor. Between 50% <strong>and</strong> 74% knew that abdominal pain <strong>and</strong> a<br />

loss of weight were risk factors. Less than 20% knew that seizures, loss of consciousness,<br />

anaemia, shortness of breath <strong>and</strong> a chronic cough were risk factors. Thirteen percent of<br />

women were not aware of any warning signs associated with postpartum. Women could only<br />

identify an average of 6 out of the 18 possible signs on the list. (Appendix A15)<br />

Infant Risk Factors: More than 75% of the women interviewed knew that chronic diarrhoea<br />

was a risk factor. Between 50% <strong>and</strong> 57% knew that an umbilical infection <strong>and</strong> inability to feed<br />

were risk factors. Less than 20% knew that seizures <strong>and</strong> a loss of consciousness were risk<br />

factors. Eight percent of women were not aware of any warning signs in infants. Women could<br />

only identify an average of 8 of the 18 possible signs on the list. (Appendix A16)<br />

Household Members – Knowledge of risk factors associated with pregnancy <strong>and</strong> birth:<br />

More than 75% of the household members interviewed knew that hypertension <strong>and</strong> oedema<br />

were a risk factor. Between 50 % <strong>and</strong> 74% knew that bleeding was a risk factor. Less than<br />

20% knew that a poor outcome for a previous pregnancy’ seizures, chronic cough, multiple<br />

pregnancy, obstructed labour, incision infection <strong>and</strong> mastitis were risk factors. Four percent of<br />

household members were not aware of any warning signs in pregnancy, birth or in the first<br />

month after birth, <strong>and</strong> household members only knew an average of 8 of the 27 possible signs<br />

on the list. (Appendix A17).<br />

2.2. Sources of Health Information<br />

Where did you learn about problems or warning signs in pregnancy? Almost three<br />

quarters of mothers learned about warning signs in pregnancy from either the clinic or the<br />

hospital, suggesting that health care providers are the single biggest source of information<br />

related to pregnancy risks. In Paarl <strong>and</strong> Umlazi a quarter of the women interviewed also got<br />

information from friends or other people. When asked "What should a woman do if she has<br />

any of these health problems or warning signs?" Ninety eight percent (98%) of women replied<br />

that the woman should go to a clinic, hospital or doctor to be seen. None of the women<br />

suggested seeing a traditional healer or traditional birth attendant. (Appendix A11)<br />

Sources of Health Information on Pregnancy: As can be seen in Graph 3 <strong>and</strong> Appendix<br />

A12, the predominant source of information on pregnancy risks at each of the three sites was<br />

the health workers. This varied from 98% at Rietvlei, to 90% at Umlazi <strong>and</strong> 85% at Paarl. It is<br />

interesting to note that Rietvlei as the most rural area relied most heavily on health workers as<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 14


a source of information. CHWs were not a significant source of information on pregnancy risks<br />

in the three sites.<br />

With regard to public media, radio was the most cited source of health information (36% in<br />

Paarl, 42% in Rietvlei <strong>and</strong> 59% in Umlazi) compared to a much lower percentage for TV <strong>and</strong><br />

newspaper. See graph 3 <strong>and</strong> Appendix A12. In fact radio was the second overall most popular<br />

source of information after health workers. This suggests that public media campaigns should<br />

consider radio as a primary outlet for dissemination of health messages. Radio stations<br />

listened to were primarily local stations, UKF in Umlazi <strong>and</strong> Rietvlei <strong>and</strong> UMWF in Paarl, rather<br />

than national stations such as SAFM. For television stations, most respondents cited SABC1<br />

or 2.<br />

Best Source of Advice for Making Decisions about Health<br />

Women were also asked which of the above sources of health information provided the "most<br />

important or best advice for making decisions about health". Once again health workers were<br />

the first choice, with 63% in Paarl, 92% in Rietvlei <strong>and</strong> 72% in Umlazi of the women mentioning<br />

health workers as the best source of health information. Radio was listed as a second choice<br />

in both Rietvlei <strong>and</strong> Umlazi, while family members were listed as the second choice in Paarl<br />

(Appendix A13).<br />

Graph 3: Sources of Health Information on Pregnancy by Site<br />

120<br />

100<br />

80<br />

60<br />

40<br />

Health Worker<br />

CHW<br />

Family<br />

Friend<br />

Radio<br />

TV<br />

Newspaper/Magazin<br />

e<br />

20<br />

0<br />

Paarl Rietvlei Umlazi<br />

It was interesting to note that Paarl had the lowest percentage of women who mentioned health<br />

workers as a source of information <strong>and</strong> the highest reliance on family <strong>and</strong> friends. This<br />

correlated with the lowest knowledge of risk factors of the three sites.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 15


SECTION 3: HEALTH SEEKING BEHAVIOUR OF HIV-POSITIVE AND HIV-NEGATIVE<br />

WOMEN<br />

Utilisation by HIV Status<br />

There was no statistical difference (at alpha 0.10) in any of the utilisation variables, mean<br />

utilisation score, or percent with a utilisation score of >=5 between mothers who were HIVpositive<br />

<strong>and</strong> HIV-negative. There were also no differences in mean number of postpartum<br />

visits (4 vs. 3, p=0.17) as shown in Appendix A18.<br />

Complete immunisation of children for age was similar across HIV-positive <strong>and</strong> HIV-negative<br />

women in Paarl <strong>and</strong> Rietvlei but significantly lower in children of HIV-positive women in Umlazi<br />

(19% vs. 82%, p=0.0003). This latter finding is concerning, <strong>and</strong> further investigation to confirm<br />

these results should be considered. (Appendix A19).<br />

Quality of Care by HIV Status<br />

HIV-positive <strong>and</strong> HIV-negative women reported a similar quality of care rendered by both the<br />

clinic <strong>and</strong> hospital. However, staff was more likely to discuss HIV <strong>and</strong> AIDS with HIV-positive<br />

women. However, HIV-positive women perception was that they received less privacy during<br />

ANC than HIV-negative women. Staff was more likely to ask HIV-positive women to attend<br />

post-partum care after birth (Appendix A 20).<br />

Disclosure was substantially covered in the Good Start Cohort Study, <strong>and</strong> only 2 of the women<br />

with unknown HIV status in this study were willing to discuss HIV with the interviewers. From<br />

the cohort study 69% of women in Paarl, 30% of women in Rietvlei <strong>and</strong> 48% of women in<br />

Umlazi had disclosed their HIV status to someone by the time of the initial interview. 9<br />

SECTION 4: FAMILY INVOLVEMENT IN PREGNANCY, BIRTH AND CARE OF INFANT<br />

Finally we examined family involvement during pregnancy, birth <strong>and</strong> care of infant. Appendices<br />

A21 - A26 summarise results from both the mother <strong>and</strong> household member questionnaires that<br />

related to family involvement. The extended family members did seem to be involved in<br />

pregnancy <strong>and</strong> infant care. Fewer were involved in birth, but many women <strong>and</strong> family<br />

members desired more participation during labour <strong>and</strong> birth, particularly in Paarl (Appendices<br />

A22 - A24). Encouragement <strong>and</strong> responsibility of family members to make sure a woman gets<br />

to ANC were very high (Appendix A 21 <strong>and</strong> A 23) <strong>and</strong> as noted above being advised by family<br />

members to attend ANC was a significant predictor of overall utilisation (Appendix A4). Overall,<br />

it appeared that Paarl had the highest level of family participation across the three sites. This<br />

correlated with earlier data which showed a higher reliance compared with the other two sites<br />

on family <strong>and</strong> friends for health information.<br />

SECTION 5: DISCUSSION AND CONCLUSION<br />

There were some similarities <strong>and</strong> differences across the three study sites. As seen in other<br />

studies, Rietvlei represented the most poorly resourced area, <strong>and</strong> except for family planning,<br />

had lower utilisation for the majority of indicators. However, with regard to health knowledge,<br />

Paarl scored the lowest. Paarl also showed a higher reliance on family <strong>and</strong> friends for health<br />

information than the other two sites, although across all three sites health workers were both<br />

the major source of health information <strong>and</strong> the source considered to give the best advice for<br />

making health decisions. Despite Paarl women having lower knowledge, it is clear that rural<br />

under-resourced sites like Rietvlei are in a more critical need of support from National <strong>and</strong><br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 16


Provincial governments to improve health infrastructure <strong>and</strong> quality of care. Lack of service<br />

delivery is a critical problem in these areas <strong>and</strong> should be a priority for future strategic plans.<br />

The strongest predictors of utilisation of maternal <strong>and</strong> infant services were distance to the<br />

clinic/hospital <strong>and</strong> availability of transport, along with whether the hospital staff advised a<br />

woman to return for postpartum care. While long distances to the health facility <strong>and</strong> lack of<br />

transport are difficult problems to tackle, having health staff that are mindful of reminding a<br />

woman to come for postpartum care is a simple intervention that could improve postpartum<br />

clinic attendance. The strongest promoter of attendance at ANC was the support of family <strong>and</strong><br />

friends. We therefore need to encourage families to support women, to draw on this potential<br />

for improving the health of women <strong>and</strong> infants.<br />

One final concern is the high rates of complications <strong>and</strong> extremely high rates of caesarean<br />

delivery found in Umlazi. Umlazi also had a significantly higher maternal mortality than the<br />

other two sites in the Good Start Cohort Study. 7 While the majority of these deaths are HIV<br />

<strong>and</strong> AIDS related, there were still quality of care issues in this site. In addition, the maternal<br />

viral loads (i.e. an indicator of HIV <strong>and</strong> AIDS disease severity) were not higher in Umlazi 7<br />

suggesting that HIV <strong>and</strong> AIDS is not necessarily the explanation for the higher mortality rates<br />

found in this site. Further research is needed in Umlazi to identify why the maternal mortality is<br />

much higher compared to the other two sites.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 17


4.3. QUALITATIVE RESULTS<br />

In this section the results of the sub-samples of women/households which were identified to<br />

examine particular cases of interest are presented. The reviews of the particular cases of<br />

interest are discussed separately.<br />

SECTION 1:<br />

NO ANC ATTENDANCE AND HOME BIRTH REVIEW<br />

Methods<br />

Twenty three women were interviewed using a qualitative case-study design. Six of these<br />

women received no ANC in their last pregnancy, ten had home births with ANC <strong>and</strong> seven had<br />

home births with no ANC. Trained fieldworkers conducted the interviews which occurred in the<br />

homes of the participants.<br />

The data collection tool included selected demographics which were collected in the Good Start<br />

Study. Participants also responded to a number of in-depth questions about antenatal <strong>and</strong><br />

maternity services. These included women’s experiences of ANC in the last pregnancy; the<br />

barriers experienced in accessing ANC services; a health seeking behaviour; danger or<br />

warning signs of a problem during pregnancy or birth; women’s experiences of labour <strong>and</strong> the<br />

barriers to accessing maternity services during labour.<br />

The interviews were conducted in the preferred language of the informant <strong>and</strong> answers<br />

recorded on the interview schedule. Interview responses were reviewed by two investigators<br />

<strong>and</strong> grouped into health systems <strong>and</strong> community/individual barriers to accessing either<br />

antenatal or maternity services.<br />

Results<br />

Description of Study Participants<br />

No ANC Attendance: The women’s ages ranged from 18 to 42 with a median of 24. The<br />

number of pregnancies of the 12 women varied from one to eight. The mean number of<br />

pregnancies was 2.67, the median two <strong>and</strong> the mode one.<br />

Home Births: The women’s ages ranged from 19 to 42 with a median of 28 years. The<br />

number of pregnancies of the 18 women varied from one to eight. The mean number of<br />

pregnancies was three <strong>and</strong> both the mode <strong>and</strong> the median was two.<br />

Barriers to Accessing ANC <strong>and</strong> Maternity Services<br />

A number of factors contributed to women at all three sites not attending ANC <strong>and</strong> delivering at<br />

home. Although these factors overlap, considerably differences exist <strong>and</strong> these will be<br />

considered separately. For clarity, the factors contributing to no ANC attendance <strong>and</strong><br />

delivering at home will be considered under two main themes, health systems issues <strong>and</strong><br />

community or individual issues. However, many of the women interviewed described more<br />

than one barrier which prevented them from accessing either antenatal or maternity services.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 18


NO ANC ATTENDANCE<br />

The most commonly reported barrier to accessing ANC was a lack of money. The second<br />

barrier was fear of that the family would find out that a woman was pregnant. The last barrier<br />

was lack of realisation by the woman that she was pregnant.<br />

Health Systems Issues<br />

Accessibility of health services: Access to the health service was a problem particularly for a<br />

number of women in Rietvlei. The clinic was too far from the women’s homes to walk to. As<br />

can be seen from the quantitative data the average time to reach a clinic was 48 minutes.<br />

Limited financial resources further exacerbated this problem for some of the women.<br />

For school girls clinic services are not accessible as they are not allowed to miss school in the<br />

morning <strong>and</strong> cannot access ANC services in the afternoon due to the chronic problem of clinics<br />

not attending to patients after lunch.<br />

Attitude of nurses: A couple of women in Rietvlei said that the positive attitude of the nurses<br />

was motivating <strong>and</strong> encouraged them to attend ANC. One woman remarked that:<br />

“The friendly nurses motivate me, <strong>and</strong> make me happy, so I am always keen to go back.”<br />

However a woman from Paarl said:<br />

“they don’t know [how] to speak to a person, they are rude <strong>and</strong> they hurt your feeling[s].”<br />

She attended her first ANC visit at 7 months where the staff:<br />

“treat(ed) me very badly, they shouted at me for coming late at 7 months.”<br />

Both young mothers <strong>and</strong> those who had had multiple pregnancies complained about the<br />

attitude of the nurses. One mother said:<br />

“sometimes when a woman goes to the clinic <strong>and</strong> has had many babies before,<br />

the nurses will scold her <strong>and</strong> ask why she’s still getting pregnant.”<br />

This annoyed her to such an extent that when she felt ill during her pregnancy she resorted to<br />

traditional medicines.<br />

Community / Individual Issues<br />

Limited financial resources: A number of women stated that a limited financial resource was<br />

a key constraint in affording public transport to antenatal services. The financial vulnerability<br />

of many women was confirmed by a woman who needed to travel on a taxi for an hour to get to<br />

the clinic. She asked the father of the child for money to attend ANC, but he refused saying<br />

that he did not ‘tell’ her to fall pregnant.<br />

Influence of family members: The influence of family members on pregnant women<br />

attending ANC appears to be considerable. The influence was always positive. Of the 13<br />

women interviewed all except one were given information by a female relative. The male who<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 19


advised that the mother of his child go for ANC advised her to attend ANC so that she would<br />

not be shouted at by the nurses in the labour ward. He had heard that nurses in the labour<br />

ward shout at women who have not attended ANC.<br />

Family responsibilities: One woman from Rietvlei had to walk for an hour to get to the clinic<br />

for ANC. However, she did not perceive this as a barrier to accessing ANC. Her problem was<br />

that unless her mother was around to look after the other children, she could not go.<br />

Women don’t realise they are pregnant: A number of women stated that the reason they did<br />

not access antenatal services was because they did not realise they were pregnant. Although<br />

this is underst<strong>and</strong>able in the first trimester, it is surprising that women can be pregnant for nine<br />

months <strong>and</strong> not realise this. One woman described how her monthly bleeding was affected by<br />

the injectable contraceptive she used. As a result, she did not realise when the monthly<br />

bleeding stopped that she was in fact pregnant. She was angry that the nurses at the clinic did<br />

not realise she was pregnant <strong>and</strong> gave her a further contraceptive injection during pregnancy.<br />

Another woman stated that she only realised she was pregnant when her waters broke.<br />

Stigma: A number of women cited fear of their family or community knowing they were<br />

pregnant as a reason for not going to ANC. One woman stated:<br />

“The neighbours like to gossip.”<br />

Time off work: One woman was not able to go to the clinic due to her inflexible working<br />

schedule. However she did go to a private general practitioner, but at the hospital was still<br />

classified as not booked because she did not have a clinic card.<br />

HOME BIRTHS<br />

Although the barriers to accessing maternity services were similar to those described for<br />

antenatal care, there were some significant differences. For many women accessing transport<br />

to the facility was a barrier, as was the attitude <strong>and</strong> behaviour of the nurses <strong>and</strong> a failure to<br />

recognise the initial signs of labour. These barriers overlap so that a woman who does not<br />

recognise the onset of labour will have less time available to access transport.<br />

Health Systems Issues<br />

Transport: For the majority of women the unavailability of transport to the hospital was the<br />

reason for a home delivery. Many of these women delivered at night, <strong>and</strong> by the time transport<br />

had been located they had already delivered. One woman described how her labour had<br />

started in the middle of the night. In the light of the morning she sent her son out to find<br />

transport, but by the time he managed to find transport, the baby had been born. A second<br />

woman described how when her labour started she walked the 45 minutes to the hospital<br />

because there was no transport. However, she was unable to get to the ward in time <strong>and</strong><br />

l<strong>and</strong>ed up delivering in the hospital yard with no assistance as she was not seen. Later when<br />

seen by hospital staff she was taken to the ward with the baby <strong>and</strong> the cord was cut.<br />

The availability of transport is often dependent on money. The cost of transport in the middle of<br />

the night is beyond the means of many families. A woman in Paarl described how she went<br />

into labour, but didn’t have the money to pay for a car to take her to the hospital. As she waited<br />

for the ambulance she delivered her baby, with the assistance of her neighbours.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 20


Attitude of nurses: Only one woman chose to give birth at home. Her choice was motivated<br />

by her fear of the nurses:<br />

“they ill treat women”.<br />

She delivered at home being ‘attended’ by her two children aged eight <strong>and</strong> ten years<br />

respectively. After she delivered the infant, she sent the children to call a traditional birth<br />

attendant who helped her deliver the placenta <strong>and</strong> cut the cord. She stated emphatically that if<br />

she were to fall pregnant again she would again choose to deliver at home.<br />

Failure of nurses to recognise labour: Two women went to the clinic in early labour. The<br />

nurses failed to recognise the onset of labour <strong>and</strong> sent the women home. The first delivered<br />

her baby shortly afterwards, with only her three children present. The second delivered her<br />

baby in the car on the way to the hospital. A third woman described how she went to her local<br />

clinic believing she was in labour. She was not attended to because staff was attending a baby<br />

competition function. On returning home she delivered.<br />

Community/Individual Issues<br />

Fear of:<br />

Unanticipated problems in labour: Interviews indicate that of the 17 women who delivered at<br />

home only one chose to deliver at home. Fear of complications during labour was the reason<br />

given by many women for choosing to deliver in hospital. One mother who delivered at home<br />

stated:<br />

“…it is dangerous <strong>and</strong> risky at home, you always pray your child is not a<br />

breech <strong>and</strong> that you manage to take out the placenta…”<br />

Many women were aware of the complications that can develop in labour <strong>and</strong> this contributed<br />

to their fear about delivering at home. One woman, anxious that either she or her baby might<br />

die if she delivered at home said:<br />

“I thought about the fact nobody would assist me at home,<br />

therefore I had to overcome my fears <strong>and</strong> go to the hospital.”<br />

Besides a breech presentation <strong>and</strong> retention of the placenta complications, other reasons given<br />

for choosing a hospital birth included a previous caesarean section, pregnancy induced<br />

hypertension, having twins <strong>and</strong> a probability of the newborn developing complications.<br />

Hospital nurses: Fear of the nurses in the maternity ward was a reason many women gave<br />

for attending ANC:<br />

“It is difficult to have your baby in the hospital if you do not have a clinic card.”<br />

One woman even went as far as saying that it was difficult to get a RTHC for your baby if you<br />

did not attend ANC.<br />

Family responsibilities: A number of women described being home with only children<br />

present when labour started. It is unclear whether they delayed leaving home out of concern for<br />

the children <strong>and</strong> thus ended up having a home birth. However, one woman stated that she<br />

could not go to the hospital to deliver as her children would have been left alone. She also<br />

delayed going to the clinic postnatally, <strong>and</strong> only went a month after delivery due to the severity<br />

of the pain she was experiencing in her nipples.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 21


Failure of the pregnant woman to recognise labour signs: A number of women did not<br />

recognise the onset of labour. One woman described how she had back pain <strong>and</strong> went into<br />

labour during the day when all adults were working in the fields <strong>and</strong> only children were at<br />

home. She had to deliver the baby alone <strong>and</strong> cut the cord. She did not think that the back<br />

pains were labour pains, as she had not reached her expected delivery date. Some women<br />

failed to recognise the onset of labour if labour pain started before her due date.<br />

Rapid progression of labour: For a number of women, particularly those who had had<br />

multiple pregnancies, labour progressed so rapidly that there was no time to get to a facility to<br />

deliver. One woman described how she woke up when her waters broke <strong>and</strong> within 45 minutes<br />

the baby was born. She believed that the traditional medicines she took during pregnancy<br />

resulted in her labour being shorter.<br />

How were barriers for ANC attendance overcome for delivery? A number of women who<br />

did not attend ANC described why they were able to access maternity services for delivery.<br />

One woman stated:<br />

“When labour started the pains were so severe “I forgot I did<br />

not attend ANC. I just wanted to go there <strong>and</strong> deliver the baby.”<br />

A couple of women said that although they were afraid of the nurses in the maternity ward as<br />

they had not attended ANC, they were more afraid of labour <strong>and</strong> of something going wrong.<br />

Another woman said that she had had a caesarean section for her first delivery, because of<br />

cephalo-pelvic disproportion. She was told at this time that if she had another child she would<br />

have to have a caesarean section again, so she knew she just had to get to the hospital.<br />

Conclusion<br />

There are a number of barriers to accessing both antenatal <strong>and</strong> maternity services. In many<br />

cases multiple reasons for not attending antenatal or maternity services were given. It can be<br />

seen that the existence of one barrier resulted in second on third barriers. It is concerning to<br />

note a substantial number of home deliveries which took place with only children present.<br />

Recommendations made by the participants will be included in the section on<br />

recommendations at the end of this report.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 22


SECTION 2:<br />

MATERNAL DEATH REVIEW<br />

Methods<br />

Using a qualitative case-study design we reviewed 18 maternal deaths: Three from Paarl, five<br />

from Rietvlei <strong>and</strong> ten from Umlazi. The deaths in Paarl were all from the Good Start study.<br />

Two of the deaths in Rietvlei were of mothers from the Good Start study <strong>and</strong> a further three<br />

were identified either from the hospital register or by CHWs. In Umlazi, five of the 14 deaths of<br />

mothers from the Good Start study were selected for review, along with five of 11 other<br />

maternal deaths identified from the hospital delivery register in 2004. In Paarl <strong>and</strong> Rietvlei the<br />

deaths represent the maternal deaths identified in those study areas in the last two years. In<br />

Umlazi both groups represent only a sample of the total deaths as noted above (Good Start<br />

<strong>and</strong> non-Good Start). The maternal deaths in Umlazi were purposely sampled to represent<br />

earlier deaths (true maternal deaths prior to 8 weeks postpartum) <strong>and</strong> more recent deaths to<br />

reduce potential recall bias on the part of the informant.<br />

All interviews were conducted by a registered midwife. The interviews were both semistructured<br />

<strong>and</strong> qualitative <strong>and</strong> were conducted in the homes of the informants. The informants<br />

had all been present in the household at the time of the maternal death, <strong>and</strong> in most cases<br />

were caregivers of the mother at the time of death. The informants were 4 husb<strong>and</strong>/partner, 4<br />

mothers <strong>and</strong> 4 sisters of the deceased women. Others included the aunts or other relatives.<br />

The interviews were conducted between one <strong>and</strong> 27 months after the death of the mother<br />

(mean 11 months).<br />

The data collection tool was modified from a WHO “<strong>Maternal</strong> Death Verbal Autopsy Tool”<br />

originally developed for use in Ghana <strong>and</strong> recommended in the Beyond the Numbers Report. 10<br />

The tool includes selected demographic data as collected in the Good Start Study as well as<br />

Background, Account of death, Symptoms, ANC, Delivery, Postpartum care <strong>and</strong> Health<br />

Seeking Behaviour sections from the Beyond the Numbers Report adapted for local use. The<br />

interviews were conducted in the preferred language of the informant <strong>and</strong> answers recorded on<br />

the interview schedule. Interviews were reviewed by two investigators (one advanced midwife<br />

<strong>and</strong> one perinatal epidemiologist/nurse) for causes of death, health seeking behaviour, <strong>and</strong><br />

content theme analysis from qualitative descriptions of events surrounding death.<br />

Reliability <strong>and</strong> validity issues were taken into consideration <strong>and</strong> these included but were not<br />

limited to the following:<br />

• Consent agreement were signed by interviewee <strong>and</strong> interviewer<br />

• The Instrument was derived from the literature <strong>and</strong> ‘pilot tested’ before the final study<br />

was conducted<br />

• Interviewers were trained <strong>and</strong> to ensure familiarity with the subject content<br />

• Data was reviewed by two different experts who did not participate in conducting<br />

interviews.<br />

Results<br />

Description of Cases<br />

The ages of the mothers ranged from 22 to 39 (mean age 28). Half of the women were single<br />

<strong>and</strong> 28% were cohabiting. All women who died had above a st<strong>and</strong>ard 4 education. Seven<br />

(39%) of the households had a member with regular employment, six (33%) relied on a state<br />

pension <strong>and</strong>/or child support grant, with the remainder having no regular source of income.<br />

The mothers lived between 20 <strong>and</strong> 120 minutes from the nearest hospital (mean 42 minutes).<br />

Four of the women were left by their partners when they became ill. During their illness the<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 23


majority of the women (72%) were cared for by female relatives (either by mothers, sisters or<br />

aunts). Five of the deaths (28%) occurred in women who were having their first pregnancy.<br />

The age of half of the women who died was known <strong>and</strong> of these only one fell outside the<br />

reproductive years (39 years), if South African criteria are used. Most of the pregnancies were<br />

full term. The demographic profiles were similar to those found in these study sites previously. 7<br />

Causes of Death<br />

Generally causes of death fell into 3 categories:<br />

• AIDS related - 12 (67%)<br />

• Other non-pregnancy related infection - 3 (16.5%)<br />

• Direct perinatal causes - 3 (16.5%)<br />

Deaths were classified as AIDS-related if women were known to be HIV-positive <strong>and</strong>/or had<br />

classic symptoms of AIDS (weight loss, chronic diarrhoea, loss of appetite, chronic cough, TB,<br />

oral lesions, confusion, unable to care for self). There was one known HIV-positive woman<br />

who died of an acute infection <strong>and</strong> one woman with chronic diarrhoea with unknown HIV status<br />

who were also classified as AIDS-related deaths. All but two of these 12 women were no<br />

longer able to care for themselves at the time of death.<br />

The women with other non-pregnancy related infections all died with symptoms suggesting<br />

infection, which lasted one week or less but did not appear to be directly related to pregnancy.<br />

The HIV serological status of these women was unknown.<br />

Finally, the direct perinatal causes included placenta praevia with postpartum haemorrhage,<br />

possible anaesthetic accident <strong>and</strong> post-partum/perinatal infection. This last case also<br />

appeared to involve potential negligence as the woman had had two prior caesarean sections<br />

<strong>and</strong> was admitted to the hospital in labour but not delivered (by caesarean section) until two<br />

days later.<br />

In five of the cases a death certificate was available for review. One stated AIDS, one TB <strong>and</strong><br />

the other three "Natural Causes".<br />

Time of Death<br />

All but one mother died post-partum. The only woman who died in the antenatal period was<br />

five months pregnant with probable AIDS-related symptoms of chronic diarrhoea, weight loss,<br />

etc. The time of the postpartum deaths ranged from five hours to nine months, with a median of<br />

one month. It must be noted that the deaths of women involved in the Good Start study in<br />

Umlazi were selected to favour earlier rather than later postpartum deaths.<br />

The women with an AIDS-related death had been ill between one week <strong>and</strong> 12 months, with<br />

the majority having been ill for more than three months, <strong>and</strong> a median of 4.5 months of illness<br />

prior to death. The other two categories died from a few hours to one month after onset of<br />

illness. All but one died within a week. The woman who died at one month was a likely<br />

anaesthetic accident who never woke up post-caesarean section <strong>and</strong> died after one month in a<br />

coma.<br />

Place of Death <strong>and</strong> Availability Transport<br />

Twelve of the eighteen deaths occurred in a hospital or hospice setting. Four occurred at home<br />

as they had left the health facility to "die at home". Two deaths occurred on the way to the<br />

hospital. One was an AIDS-related death who had been in <strong>and</strong> out of the hospital repeatedly.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 24


There was no delay from the time of the decision to take her to hospital again <strong>and</strong> accessing<br />

transport to the hospital, but she died on the way.<br />

The other woman who was dead on arrival (DOA) appeared to be indirectly related to transport<br />

<strong>and</strong> directly related to the lack of skilled delivery attendant <strong>and</strong> Basic Emergency Obstetric<br />

Care in a home birth situation. She died from PPH/Retained Placenta in a gravida five while<br />

delivering twins at home in Umzimkulu. Although the retained placenta was identified<br />

immediately by the TBA <strong>and</strong> husb<strong>and</strong> (himself a Sangoma), he was unable initially to get<br />

transport to take her to the hospital due to bad weather. Eventually he paid R800 for transport<br />

which took one hour to reach the hospital, during which time the woman died. In addition to the<br />

transport delay it was interesting that the husb<strong>and</strong> blamed the TBA for not doing certain<br />

traditional practices, which he felt would have prevented/treated the retained placenta which<br />

contributed to his wife’s death. This strong commitment to traditional practices was not<br />

surprising considering he was a Sangoma himself. However, when a complication arose the<br />

family was not averse to seeking western medical attention. In this case, due to her strong<br />

traditional beliefs the woman was unlikely to have chosen a hospital delivery.<br />

Orphans<br />

Thirteen of the 18 mothers who died left orphans who were being cared for mostly by<br />

gr<strong>and</strong>mothers or aunts. None of the infants were being cared for by their fathers. One of the<br />

infants was sickly, the rest were recorded as being healthy.<br />

Health Seeking Behaviour<br />

The majority of women had sought heath care timeously. The women with chronic conditions<br />

had regular contact with the public health care system. Many also had had contact with private<br />

or traditional health systems or both, which the considered after failing to get better in the public<br />

health system. The number of providers seen ranged from one to four with an average of two.<br />

Four of the 12 (25%) of the AIDS-related deaths had sought treatment from a traditional healer<br />

prior to their death.<br />

Delays in seeking health care by the woman or family was seen in only three cases. One was<br />

the home birth already described above. The second one was an AIDS-related death where<br />

the patient had to wait for two weeks for her mother to get paid so she could pay for her<br />

transport <strong>and</strong> health care before going to the hospital. It is unclear whether this delay<br />

contributed to the death of this patient who appeared to be in her final stages of her illness.<br />

Finally, in a woman with postpartum infection (dyspnoea, swelling <strong>and</strong> finally confusion <strong>and</strong><br />

disorientation) whose family delayed for two days after she became ill before returning her to<br />

the hospital. The family only acted when she became disoriented. This would in all probability<br />

be considered an avoidable factor as earlier treatment of the likely infection (e.g. respiratory)<br />

might have prevented death.<br />

It became apparent that most of the women with a chronic condition were aware of their HIV<br />

status <strong>and</strong> were in regular contact with the health system. However, they were reluctant to<br />

involve the family in their illness. Although some women had AIDS related ‘warning signs’<br />

including being on TB treatment before falling pregnant, they did not appear to take steps to<br />

avoid falling pregnant.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 25


Themes<br />

Hospice<br />

All three of the Paarl deaths which were AIDS-related died in the local hospice or had been<br />

admitted to a hospice during the time of their illness. Hospice was not mentioned in either of<br />

the other sites, although one mother in Rietvlei was described as having been admitted to a ‘TB<br />

hospital’ in a distant town. In most cases the families were left to care for the women. The<br />

burden placed on families by the lack of a hospice <strong>and</strong> home-based care is a major concern.<br />

One family member alluded to this:<br />

“…she was not properly fed, on the day of her death, she was lying on the floor…at her house<br />

she was left alone, her children <strong>and</strong> partner were not there. She could have lived longer with<br />

proper care. Many people I know who are HIV positive are still alive <strong>and</strong> looking well”.<br />

Blaming the Hospital for Death<br />

In five of the deaths the family members blamed the hospital/health staff for the woman's death.<br />

Sometimes this was direct, for example one mother blamed the death of her daughter on a<br />

‘injection’ she got postpartum after which she became disoriented:<br />

“…unfortunately, the injection knocked her off <strong>and</strong> she did not wake up<br />

thereafter, until she was confirmed dead”.<br />

One family blamed the hospital for a delay in the diagnosis <strong>and</strong> treatment of TB in the woman<br />

who died. They stated that the diagnosis of TB was made at another hospital far away but not<br />

at the local hospital where she was a regular patient. In another case the boyfriend blamed the<br />

hospital for allowing the woman to spend two days in labour when she had had two previous<br />

caesarean sections:<br />

“The boyfriend is aggrieved that she died due to negligence from (hospital) doctors <strong>and</strong> nurses.<br />

He feels that she should not have been allowed to deliver vaginally, because they (health staff)<br />

knew that her previous delivery was caesarean section”.<br />

The hospitals were blamed for both a poor quality of care <strong>and</strong> a lack of communication with the<br />

family as noted in the next section.<br />

Poor Communication<br />

In the majority of cases very little, if any, information about the woman's illness <strong>and</strong> cause of<br />

death were given by health care providers to the family. Eleven of the families stated: ‘Nothing’<br />

when they were asked what information they got from the health providers. This is concerning<br />

as in many cases the family was caring for the women at home after discharge or in-between<br />

hospital admissions. Lack of information <strong>and</strong> underst<strong>and</strong>ing led some families to blame the<br />

hospital. This leads to mistrust in the community <strong>and</strong> a lack of confidence in the health care<br />

system, which may result in delays in seeking care in the future. While the patient’s right to<br />

privacy is a concern, especially in the case of HIV, many of the women were disoriented <strong>and</strong><br />

could not care for themselves. Frank discussion of the woman's condition, prognosis, <strong>and</strong> care<br />

needed with her family would have been appropriate. Guidelines to assist health care<br />

providers in this regard may be needed.<br />

Disclosure<br />

Disclosure of HIV status by women who were known HIV-positive to their family members was<br />

seen in five of 11 cases (45%). All three of the Paarl patients disclosed, while two of the six<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 26


women from Umlazi (33%) <strong>and</strong> neither of the two women from Rietvlei disclosed. However, a<br />

nurse at Rietvlei hospital told one family that the reason the woman was dying was due to<br />

AIDS. The informant was very angry about this because it was done in front of "neighbours"<br />

<strong>and</strong> the privacy of the patient was compromised.<br />

Denial<br />

Interestingly denial of HIV was noted in two women. One woman before she died stated she<br />

did not believe she had HIV because:<br />

"HIV is contracted by people like sex workers or those that have many boyfriends".<br />

Another woman claimed she "was poisoned at work because other workers died from the<br />

same illness".<br />

‘Non verbal/ silent’ denial was also noted in cases when the deceased would have had AIDS<br />

related symptoms prior to current pregnancy or with a previous pregnancy. In one instance this<br />

led to a neonatal death from pneumonia that was never disclosed. In one case, the boyfriend<br />

blamed the health workers as the main contributor to death although the woman was a known<br />

HIV client who attended the local hospital regularly.<br />

Hopelessness<br />

Three informants described a loss of hope in the women before they died. Two refused to take<br />

medications, even traditional medications. One respondent stated:<br />

"She was reluctant to take medication given from hospital because she told us that she got<br />

AIDS <strong>and</strong> there is no cure."<br />

Women were even described as suicidal:<br />

“She also thinks that her sister would have committed suicide if she had means because she<br />

kept on telling the family that it was better to die because she had AIDS, hence she refused<br />

any sort of help given to her.”<br />

One of the women who refused to accept her HIV diagnosis decided to go home after being<br />

admitted for two weeks in the TB hospital. The family member stated that:<br />

"She could see that she won't make it <strong>and</strong> she wanted to die at home".<br />

This woman was also described as making preparations for her death <strong>and</strong> burial <strong>and</strong> the care<br />

of her children after her death. On the other h<strong>and</strong>, one woman described her feelings of guilt at<br />

being unable to take good care of her dying daughter:<br />

"In my heart she could have lived longer with proper care. Many people I know who are HIVpositive<br />

are still alive <strong>and</strong> looking well."<br />

Implications of both the hopelessness found in some women that led to non-compliance, but<br />

potentially an increasing recognition that HIV-positive patients can live <strong>and</strong> be healthy has<br />

implications for the roll-out of ARV therapy.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 27


Conclusion<br />

The majority of deaths in mothers in this study were due to AIDS-related causes. These<br />

deaths were accompanied by several months of chronic illness <strong>and</strong> deterioration in health<br />

status until the women were no longer able to take care of themselves. Most described poor<br />

health as starting during pregnancy or around the time of delivery, suggesting pregnancy may<br />

have contributed to further deterioration in health in HIV-positive women. Many of these deaths<br />

involved extensive care by family members <strong>and</strong> continuous health seeking to multiple providers<br />

during the course of the illness. However, family members received very little if any<br />

communication from health providers about the condition of the terminally ill woman or her<br />

care. Denial <strong>and</strong>/or hopelessness were seen in many of these cases. Interestingly<br />

hopelessness, denial <strong>and</strong> lack of disclosure were not seen in the cases in Paarl where hospice<br />

care was available <strong>and</strong> the health care <strong>and</strong> system has been previously described to be of a<br />

higher quality with more resources.<br />

Although the majority of deaths appeared to be HIV <strong>and</strong> AIDS related, there were still deaths<br />

due to direct obstetric causes. One involved patient related avoidable factors <strong>and</strong> in the other<br />

two, health provider avoidable factors. Care must be taken not to overlook basic maternity<br />

service quality in the face of an often overwhelming HIV <strong>and</strong> AIDS p<strong>and</strong>emic.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 28


SECTION 3:<br />

INFANT DEATH REVIEW<br />

Methods<br />

Using a qualitative case-study design, forty infant deaths were reviewed. The data collection<br />

tool was adapted from the WHO Infant Verbal Autopsy Tool 6 <strong>and</strong> incorporated aspects of the<br />

Matlab IMCI approach as well as approaches utilised in home interviews through the Foetal<br />

<strong>and</strong> Infant Mortality Review (FIMR) Programme in the United States. 11 In addition, a Neonatal<br />

Supplement was designed specifically to assess the experiences of mothers whose babies<br />

died shortly after birth without leaving the health facility.<br />

The objective of the infant death review was to investigate factors <strong>and</strong> barriers influencing the<br />

utilisation of health services <strong>and</strong> the level of awareness of risk factors associated with poor<br />

health outcomes among families with young children. To this end the data collection tool<br />

included selected demographic data as collected in the Good Start Study, 7 a comprehensive<br />

account of the context in which infant deaths occurred, motivations that lead to decisions,<br />

actions or non-actions on the part of families, <strong>and</strong> perspectives on factors that contribute to a<br />

breakdown in the public health system.<br />

Trained fieldworkers conducted the interviews which occurred in the homes of the participants.<br />

The interviews were conducted in the preferred language of the informant <strong>and</strong> answers<br />

recorded on the interview schedule. Interviewers were reviewed by two reviewers, a public<br />

health physician <strong>and</strong> a doctoral student doing work in the area of infant mortality to determine<br />

commonalities, themes, <strong>and</strong> critical issues.<br />

All infant deaths reviewed in this study originated from the Good Start Cohort Study. The<br />

sample consisted of 15 infant verbal autopsies conducted during April 2005 using the tool<br />

described above. The 10 infants were from Rietvlei <strong>and</strong> 5 were from Umlazi. In addition, verbal<br />

autopsies conducted previously in the Good Start Cohort Study using the original WHO Infant<br />

Verbal Autopsy Tool (un-revised) were also available <strong>and</strong> have been included where data<br />

available in sections of this review. Therefore, there were 40 home interviews conducted<br />

between August 2003 & April 2005 with mothers <strong>and</strong> caregivers (Paarl-4; Rietvlei-17; Umlazi-<br />

19).<br />

Results<br />

The mean age of the infants who died was 16.7 weeks, ranging from one day to 48 weeks.<br />

Three babies died under one week of age. Causes of death were primarily infectious diseases<br />

as shown in Table 4.<br />

Table 4: Age at death <strong>and</strong> Suspected Causes of Death in Infants<br />

• Child’s age at death:<br />

Less than 1 wk - 3 (8%)<br />

1- 4 weeks - 2 (5%)<br />

5 - 24 weeks - 26 (65%)<br />

25 - 48 weeks - 9 (23%)<br />

• Suspected causes of death:<br />

Gastro-intestinal Infection - 16<br />

Pneumonia - 15<br />

Prematurity - 2<br />

TB - 2<br />

Unknown - 2<br />

Sudden Infant Death Syndrome - 3<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 29


Table 5: <strong>Maternal</strong> <strong>and</strong> Infant HIV Status Correlated with Infant Deaths<br />

Case # <strong>Maternal</strong> HIV Status Infant HIV Status<br />

PA-1 Positive Positive<br />

PA-2 Positive Positive<br />

PA-3 Positive Unknown<br />

PA-4 Positive Positive<br />

RT-1 Negative NA<br />

RT-2 Positive Positive<br />

RT-3 Negative NA<br />

RT-4 Positive Positive<br />

RT-5 Positive Negative<br />

RT-6 Positive Unknown<br />

RT-7 Negative NA<br />

RT-8 Positive Positive<br />

RT-9 Positive Unknown<br />

RT-10 Positive Positive<br />

RT-11 Positive Negative<br />

RT-12 Positive Unknown<br />

RT-13 Positive Unknown<br />

RT-14 Positive Unknown<br />

RT-15 Positive Unknown<br />

RT-16 Positive Unknown<br />

RT-17 Negative NA<br />

UM-1 Positive Positive<br />

UM-2 Positive Positive<br />

UM-3 Positive Unknown<br />

UM-4 Positive Positive<br />

UM-5 Positive Positive<br />

UM-6 Positive Unknown<br />

UM-7 Positive Positive<br />

UM-8 Positive Positive<br />

UM-9 Positive Unknown<br />

UM-10 Positive Unknown<br />

UM-11 Positive Unknown<br />

UM-12 Positive Unknown<br />

UM-13 Positive Unknown<br />

UM-14 Positive Positive<br />

UM-15 Positive Unknown<br />

UM-16 Positive Unknown<br />

UM-17 Positive Positive<br />

UM-18 Positive Unknown<br />

UM-19 Positive Positive<br />

20<br />

15<br />

10<br />

5<br />

0<br />

16<br />

HIV Status of Infant Deaths<br />

# per group in sample<br />

2<br />

18<br />

Infant HIV+ Infant HIV- Infant HIV<br />

Unk<br />

4<br />

NA<br />

(Mom HIV-)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 30


<strong>Maternal</strong> <strong>and</strong> infant HIV status for the 40 cases can be found in Table 5. The HIV status of<br />

many of the infants is unknown as they died before an HIV test was done. To place the above<br />

deaths in context - overall there were 75 infant deaths in the Good Start Cohort Study. Nine<br />

(9) month mortality rates in infants born to HIV-positive women was 10.1% while for those born<br />

to HIV-negative women it was 3.7% (p=0.003). The infant mortality rate in Rietvlei was also<br />

significantly higher than in Paarl <strong>and</strong> Umlazi (15.0% vs. 5.7%, p=0.000005). Infant feeding<br />

method (ever breastfeeding) was not predictive of infant death in the overall cohort study, but it<br />

was a significant predictor of late HIV transmission. 7<br />

This qualitative case-study design provides insight into some of the behavioural, structural, <strong>and</strong><br />

systemic factors that played a role in the deaths of infants in the three sites that was not<br />

available in the Good Start Cohort Study analysis.<br />

Factors influencing utilisation of health services<br />

The results suggest that the utilisation of health services is related to socio-economic<br />

constraints; beliefs about the cause of illness; an awareness of when care is needed for the<br />

infant; <strong>and</strong> the quality of care available. The role of traditional healers is also significant.<br />

Socio-economic constraints: Some respondents reported that they were unable to take their<br />

child for health care services even though they realised the child needed it. This sometimes<br />

occurred because the child was sick in the evening when no transport was available or when<br />

no one was available to accompany them to a facility (i.e., the caregiver did not feel safe taking<br />

the child alone). Other respondents reported that they were unable to afford the cost of<br />

transport to a health facility. One mother in Rietvlei, for example, reported that although the<br />

local clinic had referred her baby to hospital to treat his dehydration, she didn’t have the money<br />

to take him there. Over the course of two weeks, she took the child back to the clinic several<br />

times for help, each time getting referred to hospital. Since this was not an option for her <strong>and</strong><br />

since the child was not getting better, the mother eventually starting mixing the clinic medicines<br />

with traditional medicines. After three days of this treatment, the baby’s condition worsened <strong>and</strong><br />

he died as they were taking him, once again, back to the clinic.<br />

Beliefs about the cause of illness: In other cases, beliefs about the cause of the infant’s<br />

illness sometimes determine whether or not the respondent feels health services are desirable.<br />

One respondent in Umlazi, for example, reported that her baby became sick at night <strong>and</strong> she<br />

was afraid to go to hospital alone in the dark. Her neighbours who heard the baby crying told<br />

her that there was nothing she could do for the baby because the cause of the illness was<br />

witchcraft (“Ishawe Yinyoni”). Because the mother then felt that witchcraft was responsible, she<br />

did not feel that she could send the baby for western medicine. When asked “what would have<br />

made things better or easier for you?” she stated that the child should have been taken to her<br />

father’s place to have the cultural ceremony in which the family burns the plant “Impepho” <strong>and</strong><br />

the child is introduced to the ancestors. She also expressed her belief that if the baby had been<br />

taken to a traditional healer to fight witchcraft she would still be alive. This mother did not<br />

appear to believe that health services could have prevented the death.<br />

Lack of awareness of the danger signs for infants: Some mothers are not aware of the<br />

danger signs indicating their child needs medical attention. Several respondents reported that<br />

they did not realise the seriousness of their child’s condition until it had progressed to a very<br />

severe stage. One mother in Rietvlei, for example, reported that her baby vomited for three<br />

days before the baby’s gr<strong>and</strong>mother decided to take her to a traditional healer for medicines.<br />

Another mother from Umlazi described how her baby became ill in the evening <strong>and</strong>, not<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 31


ealising the seriousness of his condition, planned to take the child to a paediatrician in the<br />

morning. However, the baby died at three o’clock in the morning, before she was able to seek<br />

health care.<br />

It is possible that mothers are not being educated by health care providers attending them<br />

about danger signs to watch for at home. For example, a Rietvlei mother reported that her<br />

infant was treated at a clinic <strong>and</strong> then referred to hospital for his cough. This baby was admitted<br />

to the hospital for a week after which he was discharged <strong>and</strong> showed improvement. The next<br />

week, however, the baby started breathing very fast <strong>and</strong> died after a few days. She reported<br />

that she did not take him back to hospital because she thought the treatment the hospital had<br />

already given him would eventually cure him. Had she been instructed on the steps to take if<br />

the infant’s health deteriorated, it is possible that he would have been taken back to the<br />

hospital for additional care <strong>and</strong> could have survived this illness.<br />

Poor quality of care: The experiences reported by respondents suggest that the quality of<br />

care received in many instances was sub-st<strong>and</strong>ard. For example, some mothers who took their<br />

infants for care reported that they were sent home with paracetamol or electrolyte sachets<br />

when perhaps the infant should have been admitted. A mother in Rietvlei reported that she took<br />

her sick infant to hospital, was given medicine <strong>and</strong> then sent home. The child died at home<br />

later that day. In other cases, mothers recounted that their infants died on the way home after<br />

having been admitted <strong>and</strong> discharged from hospital. One Rietvlei mother recounted how her<br />

baby was discharged from hospital while still showing signs of weakness <strong>and</strong> a sunken<br />

fontanel. The baby fell asleep on the way home <strong>and</strong> when she arrived at home she realised the<br />

baby had died. Another Rietvlei mother reported that her child was admitted for three weeks<br />

with cough, vomiting <strong>and</strong> fever. The staff advised the mother to take the child home where she<br />

then died after two days.<br />

Some mothers reported taking their infants to a clinic but that the clinic did not have appropriate<br />

medication. When asked if they have any ideas “for how health care facilities <strong>and</strong> providers can<br />

better serve families…with sick infants,” several mothers suggested that it is of primary<br />

importance that clinics have enough stocks of medicines. One mother stated:<br />

“It is not nice to go to the clinic seeking help <strong>and</strong> you end up not getting that help you needed.”<br />

Another mother suggested that the most important thing needed to improve care is:<br />

“[i]f facilities could improve on the long hours people (sick people) endure before being<br />

attended [to].”<br />

One respondent stated that her baby got sick at night but that she could not get transport until<br />

the next morning. When they got to the health facility, they had to wait for several hours to be<br />

seen. By that time, her baby was already gravely ill.<br />

Many respondents reported that they did not know the cause of their infant’s death. This<br />

occurred even among some women whose infants had died in hospital. They reported that staff<br />

did not take the time to explain to them what happened, <strong>and</strong> they did not feel that they had the<br />

right to ask. These mothers expressed grave disappointment about their experiences with<br />

facility staff. For example, one mother who seemed to have accepted the fate of her baby (she<br />

believed that it was her baby’s death day – "kwase kufike usuku”) became very tearful when<br />

recounting how she had been treated at the facility.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 32


The role of traditional healers: In both Umlazi <strong>and</strong> Rietvlei a common theme from the indepth<br />

interviews was the desire to use <strong>and</strong>/or the actual use of traditional healers <strong>and</strong><br />

traditional medicines. In Rietvlei this was quite often at the insistence of the mother-in-law.<br />

However, in nearly all cases the traditional medicine was sort only after they had been ‘failed’<br />

by the formal health sector. For example, in at least three cases, the infant was taken to<br />

traditional healers after the clinic had informed them that it had no medicine.<br />

Other initial findings:<br />

• Sudden Infant Death Syndrome (SIDS) may have played a role in the deaths of at least two<br />

infants included in the study. In these cases, mothers reported seeing no warning signs<br />

that the child was ill at all prior to its death.<br />

• This initial analysis suggests that there are no differences between HIV- positive women<br />

<strong>and</strong> HIV-negative women with respect to their care-seeking behaviours for their infants.<br />

However, more research into this issue is needed.<br />

• To date, the only specific group that women identified as supportive to them is their local<br />

HIV Support Group. No mothers identified health staff as providing support to them.<br />

Several of the mothers whose infants died in hospital specifically stated that they received<br />

no grief counselling following the death.<br />

• Mothers reported mixed feelings being interviewed about the deaths of their children. Some<br />

mothers (especially those who had accepted the deaths of their children) said that it was<br />

fine <strong>and</strong> even helpful to participate in the interview. For example, one mother stated that<br />

“[i]t was a positive experience to share my story <strong>and</strong> to be visited by the study team.” A few<br />

others reported that they felt sad <strong>and</strong> tearful during the interview <strong>and</strong> it was therefore hard<br />

for them to recount their experiences. One mother stated that, “[I]t was difficult having to<br />

relate my experiences with you but I will be happy if I see changes occur [because of the<br />

study].”<br />

Conclusion<br />

These in-depth interviews made it possible to highlight the complex pathways <strong>and</strong> underlying<br />

mechanisms that precede the majority of infant deaths in high risk communities. Socioeconomic<br />

constraints, beliefs about the causes of illness <strong>and</strong> awareness of when care is<br />

needed all play a major role in both health seeking behaviour <strong>and</strong> the ability to access care<br />

when needed.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 33


SECTION 4:<br />

FACILITY <strong>BASED</strong> REVIEW OF PMTCT FOLLOW-UP SERVICES<br />

Methods<br />

Data collection methods consisted of semi-structured interviews with 16 respondents who were<br />

involved in the management <strong>and</strong> running of the PMTCT programme at either Paarl or Rietvlei.<br />

The respondents included sub-district HIV <strong>and</strong> AIDS Coordinators, PMTCT Coordinators,<br />

maternity matrons, maternity ward <strong>and</strong> PHC clinic staff.<br />

Results<br />

Voluntary Counselling <strong>and</strong> Testing<br />

Human Resources<br />

In Paarl, neither hospital nor clinic professional nurses were routinely trained in VCT. However,<br />

Paarl has lay counsellors who were trained by a private psychologist for a month. The<br />

counsellors were hired on a part-time basis <strong>and</strong> they usually worked in the mornings. Once a<br />

month, the counsellors receive emotional support from a psychologist in a four hour group<br />

session. In addition, the counsellors were supported, supervised <strong>and</strong> monitored by a local<br />

NGO.<br />

In Rietvlei all professional nurses were trained in VCT but staff turnover was a problem. For<br />

example, in the hospital, staff in the maternity ward had been trained, but due to staff rotation<br />

there were times when the maternity ward had no VCT trained professional nurses. Therefore,<br />

the dem<strong>and</strong> for training was ongoing. Also Rietvlei had a two-week training for lay counsellors<br />

provided by VCT trainers from the sub-district. They had trained five lay counsellors for each<br />

facility who provided counselling services from 8h00– 6h00 on weekdays. The lay counsellors<br />

were supposed to be supported, supervised <strong>and</strong> monitored by the clinic sisters; however, the<br />

clinic sisters were neither informed of, nor skilled for, this role. In addition, lay counsellors<br />

remuneration through the District Municipality was problematic <strong>and</strong> the counsellors were last<br />

paid in 2003 (two years prior to this study).<br />

In order to address the challenges associated with the lay counsellors remuneration,<br />

community based activists (volunteers) who promoted VCT had recently been trained <strong>and</strong><br />

started providing VCT services. However, Rietvlei still has a problem with supervision <strong>and</strong><br />

monitoring these volunteers because the sub-district HIV <strong>and</strong> AIDS coordinator who is<br />

m<strong>and</strong>ated to carry out these tasks is too busy to provide this support.<br />

Referral Pathway<br />

Paarl: The referral pathway was complicated because ANC services were not provided at the<br />

PHC clinics. Pregnant women were referred to the hospital Out-patient Department (OPD) for<br />

ANC. After delivery at the maternity facility in the hospital which is located at another venue,<br />

patients were discharged <strong>and</strong> asked to go back to the OPD for post-natal care. PMTCT clients<br />

were referred from the post-natal ward to another section of the OPD <strong>and</strong> eventually referred<br />

back to their local clinic.<br />

In spite of the complicated referral pathway described above, communication between the<br />

hospital <strong>and</strong> clinics was perceived as both effective <strong>and</strong> efficient by health workers at the<br />

clinics, OPD <strong>and</strong> the hospital. For example, all patients who had attended ANC had been<br />

informed about the PMTCT programme <strong>and</strong> received VCT if they agreed to participate in the<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 34


programme. This was all clearly documented on client’s ANC card <strong>and</strong> was verified by<br />

checking a sample of ANC cards.<br />

Rietvlei: The referral pathway was very simple - from the local clinic to the hospital for the<br />

delivery, then back to the local clinic. However, in spite of this, the transfer of information was<br />

less effective. For example, many of the women in the maternity ward who said they had<br />

attended ANC in the sub-district had not been informed of the PMTCT or VCT programmes.<br />

Support Services<br />

Laboratory Services: The average turn-around time for ELISA tests both at hospitals <strong>and</strong><br />

clinics at the studied 2 sites were similar. However, at Rietvlei, the turn around time was longer<br />

at certain times due to loss of specimens or laboratory results. Also staff was less confident of<br />

the results. In addition, clinics had had periods when they have had stock-outs of rapid test kits<br />

as recent as last year.<br />

Infant Formula: Paarl had never experienced stock-out of infant formula. Infants in the<br />

PMTCT programme are provided with the infant formula for six months. On the other h<strong>and</strong><br />

Rietvlei has experienced constant stock-out of infant formula. Although it is stipulated that<br />

infants in the PMTCT programme are supposed to be supplied with infant formula for one year,<br />

many clinics are not meeting this requirement. For example, one clinic had no infant formula for<br />

eight months in 2005.<br />

Pharmaceutical Services: Paarl clinics no longer stock Nevirapine tablets. Only the hospital<br />

has the Nevirapine tablets <strong>and</strong> administers them to women in labour. No shortages of either<br />

Cotrimoxizole or Nevirapine were reported by Paarl. In Rietvlei feeder clinics were not supplied<br />

with Nevirapine tablets for over a year. In addition, Nevirapine syrup was not supplied to the<br />

clinics in spite of the large number of deliveries which take place in the community that are<br />

located far from the hospital.<br />

Routine Monitoring <strong>and</strong> Evaluation: Routine monitoring <strong>and</strong> evaluation is a problem at both<br />

sites. Neither Paarl nor Rietvlei had data on HIV transmission rates from mothers to infants in<br />

PMTCT programme. According to the PMTCT registers the percentage of women receiving<br />

Nevirapine in Paarl was 86% compared to 10% at Rietvlei. While in Paarl, 99% of babies<br />

received Nevirapine protocol compared to 12% in Rietvlei.<br />

Conclusion<br />

Information about the HIV transmission rate in infants in the PMTCT programme is not<br />

accessible or available at a sub-district or district level. As a result, local health managers <strong>and</strong><br />

PMTCT programme managers are unable to monitor the impact of the PMTCT programme.<br />

Although the referral system in Paarl is complex, medicines for the programme, testing kits <strong>and</strong><br />

nutritional supplementation are available, <strong>and</strong> mothers in the PMTCT programme do not<br />

default. On the other h<strong>and</strong> in Rietvlei where the referral pathway is simpler <strong>and</strong> all nurses are<br />

trained in VCT, poor performance of the support service - in particular the pharmaceutical <strong>and</strong><br />

laboratory services; <strong>and</strong> the frequent unavailability of infant formula appear to contribute to<br />

considerable defaulting of the mothers from the programme.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 35


5. DISCUSSION: TRIANGULATION AND SUMMARY OF RESULTS<br />

In triangulating the results across the various sources of data in this study, many consistent<br />

themes emerged. Since within each section above, discussion <strong>and</strong> conclusions specific to that<br />

section were already included, this section provides a short summary of the primary themes<br />

that were observed in this analysis:<br />

• Transport <strong>and</strong> Distance to Health Facilities is the biggest problem facing women<br />

trying to access health services<br />

This study shows that the major barriers to accessing health facilities for both ANC <strong>and</strong><br />

maternity services are lack of transport <strong>and</strong> the distances that have to be covered.<br />

• Communication with Families was very poor<br />

Communication by health workers with families was shown to be inadequate leading to<br />

a decreased belief in the health services.<br />

• Health Seeking Behaviour was good<br />

In spite of often poor treatment <strong>and</strong> lack of communication by the health services, the<br />

study showed that most people first seek help from the clinic or hospital <strong>and</strong> only when<br />

failed by the Western health system did they access traditional healers. In a few<br />

people who started off by using traditional healers, they turned to Western health<br />

services as soon as a serious complication arose. Women <strong>and</strong> families appear to only<br />

delay or not access Western health services when they cannot get there (see<br />

transport above) not because the do not want to access services, or do not feel the<br />

services are valuable.<br />

• Treatment by health providers <strong>and</strong> quality of care was mixed<br />

This study also shows that women had mixed perceptions on the ‘care’ provided by<br />

hospital <strong>and</strong> clinic health workers <strong>and</strong> the quality of care they received. However, it is<br />

clear that quality of care issues are a factor impacting on the health of women <strong>and</strong><br />

infants. Therefore, improved health structures <strong>and</strong> systems, quality of care <strong>and</strong><br />

treatment of women <strong>and</strong> infants by health workers are needed.<br />

• HIV <strong>and</strong> AIDS is a major issue - but cannot overlook basic maternity <strong>and</strong><br />

neonatal service quality<br />

HIV <strong>and</strong> AIDS is a huge issue affecting every aspect of health care service. However<br />

care must be taken to ensure that the quality of basic maternity <strong>and</strong> neonatal services<br />

is not overshadowed.<br />

• Families <strong>and</strong> Community are an untapped resource<br />

This research showed that the families <strong>and</strong> communities are crucial in determining the<br />

health seeking behaviour of pregnant women <strong>and</strong> mothers of young children. This<br />

valuable resource must be exploited to minimise maternal <strong>and</strong> infant morbidity <strong>and</strong><br />

mortality.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 36


6. RECOMMENDATIONS:<br />

24-hour emergency transport services must be available within each community for<br />

emergency obstetric <strong>and</strong> paediatric care. This is critical in both rural areas (where other<br />

forms of public transport are often not available <strong>and</strong> where many people do not have access to<br />

private vehicles) <strong>and</strong> in urban areas where ones safety is compromised if travelling alone.<br />

Women interviewed mentioned that communities could be more helpful at crisis time like going<br />

into labour, e.g. pay later for transport accessed. They also wanted more ambulances <strong>and</strong><br />

quicker time to reach patients. Also the women mentioned mobile clinics as a way of bringing<br />

services closer to them, thus increasing both antenatal <strong>and</strong> postpartum clinic attendance. This<br />

is a complicated problem that should be a priority for the Department of Health. However, any<br />

long term solution will probably also require extensive collaboration <strong>and</strong> community<br />

partnerships (see below).<br />

Community education about maternal <strong>and</strong> infant health <strong>and</strong> danger signs is imperative.<br />

Families should be educated (by both CHWs <strong>and</strong> health facility staff) on the maternal <strong>and</strong> infant<br />

health <strong>and</strong> danger signs <strong>and</strong> they should also know that prompt medical attention can save<br />

lives. While women <strong>and</strong> their families had some knowledge on danger signs, this was<br />

incomplete. It must be recognised that women trust most the information from health facility<br />

based health providers. Therefore, it is imperative that health providers are active participants<br />

in health education <strong>and</strong> health promotion. It is also important that health education <strong>and</strong><br />

promotion be comprehensive to include common symptoms of pregnancy, recognising risk<br />

factors that need urgent treatment, other issues such as maternal nutrition (including<br />

micronutrients) <strong>and</strong> genetics, family planning, HIV <strong>and</strong> other sexually transmitted infections, as<br />

well as infant feeding <strong>and</strong> infant care. The Health Promoting Settings Model coordinates<br />

individual, group <strong>and</strong> community health promotion both within the health facilities <strong>and</strong> in<br />

partnership with communities. This model should be considered for all health facilities<br />

providing primary health care in South Africa. Finally, for broad community based education<br />

through the public media, the radio appears to be the preferred channel of communication of<br />

health information for the majority of women.<br />

Hospital protocols for assessment <strong>and</strong> treatment of women <strong>and</strong> infants must be<br />

reviewed <strong>and</strong> current st<strong>and</strong>ards must be implemented. Even in this small study, evidence<br />

of inappropriate treatment <strong>and</strong> patient discharge were evident. Implementation of national<br />

initiatives <strong>and</strong> treatment guidelines such as those promoted by the Saving Mothers <strong>and</strong> Saving<br />

Babies Programmes <strong>and</strong> the Integrated Management of Childhood Illness (IMCI) need to be<br />

assured at all levels of care. Particular attention to rural <strong>and</strong> poorly resourced areas is<br />

needed. For example there is not a single IMCI trained health provider in the entire Umzimkulu<br />

sub-district where Rietvlei Hospital is located.<br />

All facilities must be adequately supplied with the essential medicines <strong>and</strong> other<br />

supplies to promote maternal <strong>and</strong> infant health. The current mechanisms used to ensure<br />

that stock-outs do not happen at any clinic or hospital must be reviewed <strong>and</strong> strategies should<br />

be developed to better respond to identified needs.<br />

Sensitivity training for hospital staff working with mothers <strong>and</strong> infants should be<br />

explored <strong>and</strong> communication with families needs to be enhanced. All families in South<br />

Africa have the right to be treated with respect when they present at a health facility, <strong>and</strong> all<br />

deserve to have full knowledge of the diagnosis <strong>and</strong> treatment for themselves <strong>and</strong> their infants.<br />

This also includes a discussion of cause of death with the family for both women <strong>and</strong> infants.<br />

While confidentiality concerns are important, it is clear that families are primary care givers for<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 37


oth sick women <strong>and</strong> children. Therefore, if the families are not aware of the diagnosis <strong>and</strong><br />

treatment necessary, the health of women <strong>and</strong> infants will be compromised. This area requires<br />

at least two approaches. The first is research to underst<strong>and</strong> staff attitudes <strong>and</strong> behaviour<br />

towards women <strong>and</strong> their families, as well as ways to improve staff behaviour towards serving<br />

clients. Secondly, guidelines for communication to families, which balance confidentiality <strong>and</strong><br />

the need to know, should be developed to assist health care providers in dealing with<br />

sometimes complicated situations.<br />

Given that Nevirapine is successful in reducing the transmission of HIV to newborns 7 , it<br />

is essential that the PMTCT programme functions well <strong>and</strong> is monitored effectively.<br />

In Paarl local clinics should provide ANC services <strong>and</strong> all professional nurses should be trained<br />

in VCT. In Rietvlei the problems with the laboratory <strong>and</strong> pharmaceutical services must be<br />

addressed to improve the performance of the PMTCT programme. In addition PCR diagnostic<br />

tests should be introduced for testing at 6-14 weeks depending on infant feeding method.<br />

HIV <strong>and</strong> AIDS services need to be exp<strong>and</strong>ed, integrated <strong>and</strong> comprehensive.<br />

Without repeating the statements above, it is unquestionable that quality maternity care<br />

shouldn’t be traded off within the context of an overwhelming HIV <strong>and</strong> AIDS p<strong>and</strong>emic.<br />

However, based on these findings, addressing HIV <strong>and</strong> AIDS should also be prioritised,<br />

especially in the context of women in their reproductive ages. The last report on maternal<br />

deaths 2 does show AIDS as a major killer. Proactive measures need to be in place that include<br />

preventive, promotive <strong>and</strong> curative aspects on the management of HIV <strong>and</strong> AIDS that should<br />

start in family planning clinics <strong>and</strong> continue through perinatal <strong>and</strong> post-partum services, not<br />

only during antenatal care. Counselling in particular cannot be regarded as a once-off event - it<br />

should be an on-going activity <strong>and</strong> a responsibility of all health care providers. Also, these<br />

services should focus on both HIV-positive mothers to assure they get the highest quality of<br />

care, <strong>and</strong> the HIV-negative mothers to ensure they stay negative. In addition, the majority of<br />

the mothers who died left behind orphans that are being taken care of by relatives (excluding<br />

their fathers). It is known that children who have lost their mothers are at higher risk of dying, 12<br />

therefore, comprehensive programmes for orphans will become increasingly important if we do<br />

not stem the tide of maternal deaths from HIV <strong>and</strong> AIDS. Finally, while expansion of<br />

antiretroviral programmes for both women <strong>and</strong> children will need to be a major thrust of<br />

services to address the p<strong>and</strong>emic, these programmes alone are not enough. A comprehensive<br />

integrated approach, which addresses equity <strong>and</strong> underlying health structures will also be<br />

needed.<br />

Cooperation <strong>and</strong> communication with families <strong>and</strong> communities needs to be enhanced.<br />

It was clear that communities <strong>and</strong> families are an untapped resource for promoting<br />

maternal <strong>and</strong> infant health. Results from the SANIB focus groups also indicate that families,<br />

<strong>and</strong> especially men, want to be more involved in the care of women during pregnancy <strong>and</strong><br />

birth, as well as in the care of infants. Enhancing community support for ANC <strong>and</strong><br />

postnatal/infant services maybe one of the most beneficial ways to increase use of maternal<br />

<strong>and</strong> newborn services. While essentially all women <strong>and</strong> family members interviewed felt ANC<br />

<strong>and</strong> hospital delivery were important, <strong>and</strong> overall use of health services were very high, there<br />

appeared to be a gap in coordination <strong>and</strong> communication with families <strong>and</strong> communities.<br />

Initiatives like Better Births that promote family involvement during labour <strong>and</strong> birth, <strong>and</strong><br />

expansion of these efforts to primary care should be supported. There is increasing recognition<br />

that men need to be considered in the context of women <strong>and</strong> child health <strong>and</strong> HIV <strong>and</strong> AIDS.<br />

Families, communities <strong>and</strong> culture were rarely cited as barriers to care in this study, but were<br />

commonly cited as promoters of care. This is a very positive finding considering that this is not<br />

the case in many other developing countries. 13 In addition, solving complex issues such as<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 38


transport will likely not be successful without some community participation (see above).<br />

However, community participation is often very difficult to realise. Findings from this study<br />

should be used to develop community-based interventions <strong>and</strong> pilot studies to enhance<br />

community <strong>and</strong> family participation in maternal <strong>and</strong> child health. Recent recommendations by<br />

WHO <strong>and</strong> others for ways to improve community participation in maternal <strong>and</strong> infant health can<br />

also be consulted. 14<br />

7. ACKNOWLEDGEMENTS<br />

The study team would like to thank the National Department of Health <strong>and</strong> the Centers for<br />

Disease Control <strong>and</strong> Prevention (South Africa) for the opportunity to conduct this research. We<br />

would like to thank our study collaborators, South African Nurses in Business (SANIB); the<br />

local study staff, the local health services <strong>and</strong> the mothers <strong>and</strong> families who participated in this<br />

research.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 39


8. REFERENCES<br />

1 National Department of Health, South African Demographic <strong>and</strong> Health Survey 1998.<br />

Pretoria: Department of Health/Medical Research Council/Macro International. 1998.<br />

2 NCCEMD, Saving Mothers 1999-2001, Pretoria: National Department of Health/NCCEMD,<br />

2002<br />

3 World Health Organization. Making Pregnancy Safer: Why is this issue important? Fact Sheet<br />

No. 276. Geneva: World Health Organization. 2004<br />

4 Equity. Primary Health Care in the Eastern Cape Province 1997-2000. Bisho: Equity Project<br />

<strong>and</strong> Eastern Cape Department of Health, 2001.<br />

5 Day C <strong>and</strong> Gray A. Health <strong>and</strong> Related Indicators. In: Ijumba P, Barron P, editors. 2005<br />

South African Health Review. Durban: Health Systems Trust; 2005.<br />

6 WHO, Safe Motherhood Needs Assessment. Version 1.1 WHO/RHT/MSM/96.18. Geneva:<br />

World Health Organization. 2001.<br />

7 Ronsmans C, Etard F, Walraven G. Verbal Autopsies: Learning from Reviewing Deaths in the<br />

Community. In: WHO. Beyond the Numbers: Reviewing maternal deaths <strong>and</strong> complications to<br />

make pregnancy safer. Geneva: World Health Organization. 2004.<br />

8 Anker M, et.al. A St<strong>and</strong>ard Verbal Autopsy Method for Investigating Causes of Death in<br />

Infants. WHO/CDS/CSR/ISR/99.4. Geneva: World Health Organization. 1999.<br />

9 Good Start Study Team. The Good Start Study Draft Report. Durban: Health Systems Trust.<br />

May 2005.<br />

10 Ronsmans C, Etard F, Walraven G. Verbal Autopsies: Learning from Reviewing Deaths in<br />

the Community. In: WHO. Beyond the Numbers: Reviewing maternal deaths <strong>and</strong> complications<br />

to make pregnancy safer. Geneva: World Health Organization. 2004.<br />

11 Schaefer, J., Noell, D., McClain, M. (Dec 2002). Fetal <strong>and</strong> Infant Mortality Review: A Guide<br />

for Home Interviewers. Washington, DC: American College of Obstetricians <strong>and</strong> Gynecologists.<br />

12 Zaba B, Whitworth J, Marston M, Nakiyingi J, Ruberantwari A, Urassa M, Issingo R, Mwaluko<br />

G, Floyd S, Nyondo A, Crampin A.HIV <strong>and</strong> mortality of mothers <strong>and</strong> children: evidence from<br />

cohort studies in Ug<strong>and</strong>a, Tanzania, <strong>and</strong> Malawi. Epidemiology. 2005 May;16(3):275-80.<br />

13 DFID. Reducing maternal deaths: Evidence <strong>and</strong> action. London: Department for International<br />

Development. 2004.<br />

14 WHO. Working with Individuals, Families <strong>and</strong> Communities to Improve <strong>Maternal</strong> <strong>and</strong><br />

Newborn Health. WHO/FCH/RHR/03.11. Geneva: World Health Organization. 2003.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 40


APPENDIX A: RESULTS*<br />

*Notes to Tables in Results:<br />

• The percentages are all column percentages for the variable, i.e. percent within each<br />

site<br />

• Tables 1 through 3 are on entire sample - semi-structured household interviews <strong>and</strong><br />

case studies with a sample size of 235 (Paarl = 68, Rietvlei = 84, <strong>and</strong> Umlazi = 83).<br />

• Tables 4 through 26 are from the semi-structured household interviews with a sample<br />

size of 178 (Paarl = 60, Rietvlei = 60, <strong>and</strong> Umlazi = 58).<br />

• Percentages are calculated excluding missing data so there will be some variation in N<br />

in each column depending on number of subjects with missing data for the respective<br />

data item.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 41


Appendix A1: Socio-economic Variables by Site<br />

Socio-Economic Variable Paarl Rietvlei Umlazi<br />

Water Source (n = 232) # % # % # %<br />

Piped-inside house 36 (53) 1 (1) 47 (57)<br />

Piped-yard 26 (38) 8 (10) 19 (23)<br />

Piped-public 6 (9) 26 (32) 16 (20)<br />

Borehole/well 0 12 (15) 0<br />

River/stream 0 35 (42) 0<br />

Total Number 68 82 82<br />

Type of Toilet in the House (n = 232) # % # % # %<br />

Flush toilet 63 (92) 2 (3) 43 (52)<br />

Pit latrine 0 78 (95) 34 (42)<br />

Ventilated pit latrine 0 0 5 (6%)<br />

None 4 (6) 1 (1) 0<br />

Other 1 (2) 1 (1) 0<br />

Total Number 68 82 82<br />

Main Fuel used for Cooking ( n = 231) # % # % # %<br />

Electricity 36 (53) 10 (12) 60 (74)<br />

Gas 12 (18) 2 (3) 1 (1)<br />

Paraffin 20 (29%) 15 (18) 19 (24)<br />

Charcoal 0 1 (1) 0<br />

Wood 0 54 (66) 1 (1)<br />

Total Number 68 82 81<br />

Do you have a working…<br />

n = 68 n = 82 n = 82<br />

# % # % # %<br />

Refrigerator/freezer 46(69) 19 (24) 49 (59)<br />

Radio 46 (69) 49 (63) 57 (69)<br />

Television 44 (66) 22 (28) 48 (58)<br />

Stove 41 (61) 17 (22) 79 (95)<br />

Telephone/cell phone 37 (55) 33 (42) 47 (57)<br />

Car 8 (12) 4 (5) 7 (8)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 42


Appendix A2: Distribution of Selected Measures of Income by Site<br />

Selected Measures of Income Paarl Rietvlei Umlazi<br />

Income measure ( n = 232) # % # % # %<br />

Is anyone living in the household currently employed? 51 (75) 44 (56) 57 (70)<br />

Total 68 82 82<br />

# % # % # %<br />

Source of income of main provider for the household n = 68 n = 82 n = 82<br />

Regular employment 35 (52) 23 (28) 42 (53)<br />

Irregular employment 18 (26) 21 (26) 17 (21)<br />

Home employment 4 (6%) 5 (6) 1 (1)<br />

Contributions from others 2 (3) 2 (2) 2 (3)<br />

State pension/grant 20 (29) 42 (52) 12 (15)<br />

Other 1 (2) 3 (4%) 5 (6)<br />

Don’t know 0 (0%) 0 (0) 3 (4)<br />

What kind of grant/pension? n = 68 n = 82 n = 82<br />

# % # % # %<br />

Child support grant 13 (19) 38 (46) 21 (26)<br />

Elderly Pension 15 (22) 24 (29) 15 (18)<br />

Disability Pension 10 (15) 7 (8) 4 (6)<br />

Foster care grant 2 (3) 0 (0%) 0 (0)<br />

Other grant/pension 5 (7) 2 (2%) 1 (1)<br />

Don’t know 0 (0) 0 (0%) 6 (7)<br />

Appendix A3: Mode of Travel <strong>and</strong> Needed Time in minutes to Health Services by Site<br />

Mode of travel to the nearest clinic (n = 233)<br />

Paarl # % Rietvlei # % Umlazi # %<br />

Walk 59 (87) 37 (45) 57 (69)<br />

Taxi/bus 5 (7) 46 (55) 23 (29)<br />

Own vehicle 2 (3) 0 (0) 1 (1)<br />

Other 2 (3) 0 (0) 1 (1)<br />

Total 68 83 82<br />

Average time to the nearest clinic (n = 233)<br />

Mean 17.93 48.30 24.76<br />

St<strong>and</strong>ard deviation 17.63 37.16 17.24<br />

Mode of travel to the nearest hospital (n = 233) # % # %<br />

Walk # %<br />

12 (15) 12 (15)<br />

8 (12)<br />

Taxi/bus 51 (75) 70 (85) 69 (84)<br />

Own vehicle 3 (4) 0 (0) 1 (1)<br />

Other 6 (9) 0 (0) 0 (0)<br />

Average time to the nearest hospital (n = 233)<br />

Mean 31.91 83.71 35.00<br />

St<strong>and</strong>ard deviation 17.27 66.04 23.47<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 43


OBJECTIVE 1:<br />

To determine factors influencing utilisation of maternal health services <strong>and</strong> barriers to utilisation<br />

of maternal health services<br />

Appendix A4: Factors Associated With the Utilisation of Health Services With a<br />

Score >=5 (High Utilisation)<br />

Variable<br />

Rate Difference P-value<br />

(%) or Mean<br />

Difference<br />

Younger Age (Mean age in years) - 21 years 0.043<br />

Single (%) +15.5 0.055<br />

Someone in HH Employed (%) +16.5 0.055<br />

Main HH provider in regular employment (%) +18.4 0.020<br />

Walk to clinic (%) +25.7 0.020<br />

Live closer to clinic (Mean travel to clinic in minutes) -12.9 minutes 0.003<br />

Live closer to hospital (Mean travel to hospital in minutes) -23.9 minutes 0.002<br />

No problems getting to hospital (%) +21.9 0.065<br />

No problems attending ANC (%) +23.5 0.005<br />

No financial barriers to ANC attendance (%) +15.7 0.093<br />

No transport barriers to ANC attendance (%) +48.8 0.039<br />

Work/employment not a barrier to ANC (%) +34.1 0.080<br />

No poor treatment by health staff cited as barrier ANC (%) +48.4 0.075<br />

Both positive & negative treatment by health staff during ANC<br />

+36.6 0.018<br />

(%)<br />

Unable to always follow health advice (%) +25.2 0.011<br />

Family or friend told mom to go to ANC (%) +15.5 0.055<br />

Advised to return for check-up after last birth (%) +40.8 0.000<br />

Health staff discussed family planning after last birth (%) +19.8 0.058<br />

HH member thinks someone should stay with woman in labour<br />

(%)<br />

HH member thinks women’s health is a priority for South Africa<br />

(%)<br />

n = 165<br />

+22.8 0.016<br />

+23.3 0.051<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 44


Appendix A5: Barriers to accessing ANC<br />

Paarl<br />

# (%)<br />

Rietvlei<br />

# (%)<br />

Umlazi<br />

# (%)<br />

Total<br />

# (%)<br />

Problems attending ANC 16 (26.7) 23 (38.3) 16 (27.6) 55 (31.0)<br />

Money 14 (23.3) 17 (28.3) 8 (13.8) 39 (21.9)<br />

Work/Employment 1 (1.7) 3 (5.0) 3 (5.3) 7 (4.0)<br />

Family Responsibilities 1 (1.7) 3 (5.0) 2 (3.4) 6 (3.4)<br />

Transport 0 (0.0) 3 (5.0) 2 (3.4) 5 (2.8)<br />

Treatment by health staff 0 (0.0) 4 (6.7) 1 (1.7) 5 (2.8)<br />

Family or Friends 0 (0.0) 0 (0.0) 1 (1.7) 1 (0.6)<br />

Total Respondents 60 60 58 178<br />

Appendix A6: What Sort of Things or People Make it Easier to Attend ANC?<br />

Paarl<br />

# (%)<br />

Rietvlei<br />

# (%)<br />

Umlazi<br />

# (%)<br />

Total<br />

# (%)<br />

Family or friend support 44 (73.0) 10 (17.0) 24 (41.0) 75 (43.1)<br />

Clinic closer to home or<br />

mobile clinic<br />

2 (3.3) 19 (33.3) 20 (35.1) 41 (23.6)<br />

Friendly staff or nurses 2 (3.30) 23 (40.4) 2 (3.5) 27 (15.5)<br />

Transport available 2 (3.3) 11 (19.3) 10 (17.5) 23 (13.2)<br />

Good quality care 4 (6.7) 12 (21.1) 4 (7.0) 20 (11.5)<br />

Had money 16 (26.7) 1 (1.8) 2 (3.5) 19 (10.9)<br />

None 1 (1.7) 3 (5.3) 1 (1.8) 5 (2.9)<br />

Had pregnancy problems 2 (3.3) 2 (3.5) 1 (1.8) 5 (2.9)<br />

Wanted to have healthy baby 0 (0.0) 1 (1.8) 3 (5.3) 4 (0.2)<br />

Shorter waiting times 0 (0.0) 0 (0.0) 1 (1.8) 1 (0.6)<br />

Employer released for clinic 0 (0.0) 0 (0.0) 1 (1.8) 1 (0.6)<br />

Other 4 (6.7) 2 (3.5) 5 (8.8) 11 (6.3)<br />

Total Respondents 60 57 57 174<br />

Appendix A7: Why Didn't You Attend ANC Earlier?<br />

Paarl Rietvlei<br />

# (%) # (%)<br />

Thought okay to start<br />

Umlazi<br />

# (%)<br />

Total<br />

# (%)<br />

0 (0.0) 22 (61.1) 4 (13.7) 26 (29)<br />

later/felt fine<br />

Distance to clinic 11 (44.0) 9 (25.0) 5 (17.2) 25 (27.8)<br />

No money/no transport 6 (24.0) 1 (2.8) 4 (13.8) 10 (11.1)<br />

Unwanted/hiding pregnancy 4 (16.0) 0 (0.0) 3 (10.3) 7 (7.8)<br />

If go early too many visits 4 (16.0) 0 (0.0) 1 (3.4) 5 (5.5)<br />

Sent away by clinic 1 (4.0) 2 (5.6) 1 (3.4) 4 (4.4)<br />

No Reason 0 (0.0) 0 (0.0) 3 (10.3) 3 (3.3)<br />

Did not realise pregnant 1 (4.0) 0 (0.0) 1 (3.4) 2 (2.2)<br />

Other 0 (0.0) 2 (5.6) 8 (27.6) 10 (11.1)<br />

Total Respondents 25 36 29 90<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 45


Appendix A8: Pregnancy History<br />

Paarl Rietvlei Umlazi<br />

(N=60) (N=60) (N=58)<br />

Total number of births 105 135 122<br />

Average parity 1.75 2.25 2.1<br />

Parity = 1 32 (53%) 11 (18%) 24 (41%)<br />

Parity >=5 1 (2%) 4 (7%) 3 (5%)<br />

# (%) # (%) # (%)<br />

No Antenatal Care (% of Total Births) 0 (0) 3 (2) 4 (3)<br />

Home Birth (% of Total Births) 5 (5) 12 (9) 3 (2)<br />

No Skilled Attendant at Birth (% of Total 6 (6) 10 (7) 5 (4)<br />

Births)<br />

# (%) # (%) # (%)<br />

Complications (% of Total Births) 29 (28) 46 (34) 47 (38)<br />

Caesarean Delivery (% of Total Births) 15 (14) 34 (25) 42 (34)<br />

Worked in regular or irregular employment<br />

during last pregnancy.<br />

21 (35) 9 (15) 16 (28)<br />

Appendix A9: Family Planning<br />

Paarl Rietvlei Umlazi<br />

Are you currently doing anything to prevent # (%) # (%) # (%)<br />

or postpone your next pregnancy?<br />

Yes 47 (78) 43(72) 47 (82)<br />

No 13 (22) 16 (27) 6 (10)<br />

What are you currently doing to prevent or # (%) # (%) # (%)<br />

postpone your next pregnancy?<br />

No sex/abstinence 7 (12) 8 (13) 7 (12)<br />

Pill 1 (2) 2 (3) 1 (2)<br />

Injection/Dep-Provera 33 (55) 24 (40) 26 (46)<br />

Sterilization (for self or partner) 8 (13) 7 (12) 6 (11)<br />

Condom/diaphragm/cap 2 (3) 5 (8) 9 (16)<br />

Other family planning methods 3 (5) 2 (3) 0<br />

Appendix A10: Immunisations<br />

Paarl Rietvlei Umlazi<br />

Complete immunisations for age # (%) # (%) # (%)<br />

Yes 41 (71) 8 (16) 26 (57)<br />

No 17 (29) 42 (84) 20 (43)<br />

Complete immunisations for age by age<br />

group<br />

# immunised<br />

/ # in group<br />

# immunised<br />

/ # in group<br />

# immunised /<br />

# in group (%)<br />

(%)<br />

(%)<br />

0-2 months 0/0 (0) 0/1 (0) 2/2 (100)<br />

3-4 months 6/7 (86) 2/5 (40) 1/1 (100)<br />

5-9 months 9/11 (82) 2/7 (29) 4/6 (67)<br />

10-18 months 16/18 (89) 4/24 (17) 11/18 (61)<br />

19-34 months 10/22 (46) 0/13 (0) 8/19 (42)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 46


OBJECTIVE 2:<br />

To determine the level of awareness of risk factors associated with poor maternal <strong>and</strong> perinatal<br />

health outcomes among women <strong>and</strong> family members<br />

Appendix A11: Where Did You Learn About Problems or Warning Signs in Pregnancy?<br />

Paarl<br />

# (%)<br />

Rietvlei<br />

# (%)<br />

Umlazi<br />

# (%)<br />

Total<br />

# (%)<br />

Clinic or Hospital 30 (50.0) 49 (83.1) 50 (86.2) 129 (72.9)<br />

Friends or other people 24 (40.0) 2 (3.4) 14 (24.1) 40 (22.6)<br />

Older women or own mother 4 (6.7) 10 (16.9) 0 (0.0) 14 (7.9)<br />

Current or Prior Pregnancy 3 (5.0) 4 (6.8) 5 (8.6) 12 (6.8)<br />

Radio/TV 2 (3.3) 8 (13.6) 2 (3.4) 12 (6.8)<br />

Health Promotion Materials,<br />

e.g. posters, books<br />

7 (11.7) 2 (3.4) 0 (0.0) 9 (4.5)<br />

Other 4 (6.7) 3 (5.1) 0 (0.0) 7 (4.0)<br />

Total Respondents 60 59 58 177<br />

Appendix A12: Sources of Information on Pregnancy*<br />

Paarl Rietvlei Umlazi<br />

# (%) # (%) # (%)<br />

Health Worker 50 (85) 59 (98) 52 (90)<br />

Community Health Worker 8 (14) 2 (3) 3 (5)<br />

Family 32 (54) 4 (7) 4 (7)<br />

Friend 20 (34) 0 (0) 8 (14)<br />

Radio 21 (36) 25 (42) 34 (59)<br />

TV 15 (25) 6 (10) 17 (29)<br />

Newspaper 11 (19) 2 (3) 8 (14)<br />

* All sources cited by mothers<br />

Appendix A13: Source for Best Advice for Making Decisions about Health<br />

Paarl Rietvlei Umlazi<br />

# (%) # (%) # (%)<br />

Health care provider 37 (63) 55 (92) 42 (72)<br />

Radio 6 (10) 2 (7) 11 (19)<br />

Family member 12 (20) 0 0(0)<br />

Friends 1 (2) 0 3 (5)<br />

Television 1 (2) 1 (2) 1 (2)<br />

Newspapers 2 (3) 0 1 (2)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 47


Appendix A14: What are Some Dangerous or Warning Signs of a Problem During<br />

Pregnancy or Birth?<br />

previous bad obstetric history / abdominal scars / previous<br />

stillbirth<br />

Paarl<br />

#<br />

Rietvlei<br />

#<br />

Umlazi<br />

#<br />

Total<br />

# (%)<br />

4 8 26 38 (21)<br />

hypertension / high blood pressure 41 58 55 154 ( 87)<br />

severe headaches 15 29 21 65 (37)<br />

swelling of face, h<strong>and</strong>s, feet or legs 30 55 51 136 (76)<br />

fits/seizures 7 16 12 35 (20)<br />

loss of consciousness 2 14 6 22 (12)<br />

anaemia 7 10 8 25 (14)<br />

pallor/pale 0 8 4 12 (7)<br />

severe fatigue/exhaustion/unable to do normal daily chores 8 28 28 64 (36)<br />

Breathlessness/problems breathing/short of breath 4 20 9 33 (19)<br />

cessation of fetal movement / baby does not move 20 25 53 98 (55)<br />

abnormal lie / position of foetus /breech (bottom or legs first) 15 21 40 76 (43)<br />

sepsis / infection 20 15 13 48 (27)<br />

fever 8 21 13 42 (24)<br />

cough that lasts several weeks or more 7 19 8 34 (19)<br />

loose stools (diarrhoea) that last several weeks or more 4 30 15 49 (28)<br />

foul smelling discharge from vagina (birth canal) 12 22 45 79 (44)<br />

loss of weight 7 28 12 47 (26)<br />

bleeding/ haemorrhage 24 45 51 120 ( 67)<br />

multiple pregnancy / large abdomen 2 6 14 22 (12)<br />

obstructed / prolonged labour / "sun set two times" 6 15 21 42 (24)<br />

labour/abdominal pains more than 3 weeks before baby<br />

is due<br />

21 24 34 79 (44)<br />

Waters break early before labour 18 21 47 86 (48)<br />

Other 35 24 34 93 (52)<br />

Don’t know 9 3 9 21 (12)<br />

Average number of danger signs known out of 23 listed<br />

danger signs (not including other)<br />

5 9 9 8<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 48


Appendix A15: What Are Some Dangerous or Warning Signs of A Problem in the Woman<br />

in the First Month after Birth?<br />

Paarl<br />

#<br />

Rietvlei<br />

#<br />

Umlazi<br />

#<br />

Total<br />

# (%)<br />

hypertension / high blood pressure 31 49 37 83(47)<br />

severe headaches 14 30 32 76 (43)<br />

fits/seizures 5 15 6 26 (15)<br />

loss of consciousness 1 14 7 22 (12)<br />

anaemia 6 13 9 28 (16)<br />

pallor/pale 1 12 7 20 (11)<br />

severe fatigue/exhaustion/unable to do normal daily chores 10 28 16 54 (30)<br />

breathlessness/problems breathing/short of breath 3 16 10 29 (16)<br />

sepsis / infection 21 18 7 46 (26)<br />

fever 5 21 15 41 (23)<br />

foul smelling discharge from vagina (birth canal) 14 27 30 71 (40)<br />

postpartum abdominal pain 28 39 47 114 (64)<br />

puss/foul discharge/redness/pain at c-section or episiotomy<br />

incision<br />

19 19 49 87 (49)<br />

redness/pain/puss around nipples 11 19 23 53 (30)<br />

loss of weight 8 49 51 108 (61)<br />

bleeding / haemorrhage 44 50 54 148 (83)<br />

loose stools (diarrhoea) that last several weeks or more 5 25 10 40 (22)<br />

cough that lasts several weeks or more 2 19 7 28 (16)<br />

Other 24 21 19 64 (36)<br />

Don’t Know 15 2 6 23 (13)<br />

Average number of danger signs known out of 18 listed<br />

dangerous signs (not including ‘other’) 3 8 7 6<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 49


Appendix A16: What Are Some Dangerous or Warning Signs of A Problem in the Baby<br />

during the First Three Months after Birth?<br />

Paarl Rietvlei Umlazi Total<br />

# # # # (%)<br />

inability to feed adequately or cessation of sucking 30 36 35 101 (57)<br />

weak or abnormal cry or cessation of crying 15 40 15 70 (39)<br />

fits/ seizures 5 15 3 23 (13)<br />

lethargy or loss of consciousness 6 10 7 23 (13)<br />

redness/ discharge (pus) at umbilicus 14 44 45 103 (58)<br />

skin infection/ pustules 18 27 51 96 (54)<br />

redness/discharge from eyes 8 18 22 48 (27)<br />

fast breathing/problems breathing/chest-draw-in/<br />

grunting breathing<br />

22 32 42 96 (54)<br />

sepsis / infection 10 15 9 34 (19)<br />

fever 29 31 46 106 (60)<br />

unusually cold body temperature 7 22 10 39 (22)<br />

yellow discoloration (jaundice) of skin 45 27 51 123 (69)<br />

persistent vomiting <strong>and</strong>/or distension abdominal (swelling) 12 25 30 67 (38)<br />

loss of weight 20 23 14 57 (32)<br />

cough that lasts several weeks or more 15 27 14 56 (31)<br />

loose tools (diarrhoea) that lasts several weeks or more 37 48 52 137 (77)<br />

oral thrush/ white sores in the mouth of the child 15 48 54 117 (66)<br />

sunken top of head (sunken fontanelle) / dehydration 1 39 31 71 (40)<br />

Other 13 11 12 36 (20)<br />

Don’t Know 11 1 3 15 (8)<br />

Average number of danger signs known out of 18 listed<br />

danger signs (not including other) 5 9 9 8<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 50


Appendix A17: Household Member: What Are Some Dangerous or Warning Signs of a<br />

Problem during Pregnancy, Birth or in the 1 st Month after Birth?<br />

Paarl<br />

#<br />

Rietvlei<br />

#<br />

Umlazi<br />

#<br />

Total<br />

# (%)<br />

previous bad obstetric history / abdominal scars / previous stillbirth 2 5 8 15 (8)<br />

hypertension / high blood pressure 48 53 55 156 (88)<br />

severe headaches 14 30 36 80 (45)<br />

swelling of face, h<strong>and</strong>s, feet or legs 40 43 53 136 (76)<br />

fits/seizures 4 14 14 32 (18)<br />

loss of consciousness 7 9 21 37 (21)<br />

anaemia 6 14 3 23 (13)<br />

pallor/pale 0 7 10 17 (10)<br />

severe fatigue/exhaustion/unable to do normal daily chores 11 18 35 64 (36)<br />

breathlessness/problems breathing/short of breath 11 27 28 66 (37)<br />

cessation of foetal movement / baby does not move 19 17 43 79 (44)<br />

abnormal lie / position of foetus /breech (bottom or legs first) 14 19 34 67 (38)<br />

sepsis / infection 13 10 12 35 (20)<br />

fever 16 28 20 64 (36)<br />

foul smelling discharge from vagina (birth canal) 6 23 23 52 (29)<br />

cough that lasts several weeks or more 1 15 12 28 (16)<br />

Loose stools (diarrhoea) that last several weeks or more 8 22 20 50 (28)<br />

loss of weight 9 24 40 73 (41)<br />

bleeding/haemorrhage 22 45 48 115 (65)<br />

multiple pregnancy / large abdomen 4 9 13 26 (15)<br />

obstructed / prolonged labour / "sun set two times" 3 15 9 27 (15)<br />

labour/abdominal pains more than 3 weeks before baby is due 24 19 17 60 (34)<br />

Waters break early before labour 12 22 35 69 (39)<br />

postpartum abdominal pain 5 36 32 73 (41)<br />

puss/foul discharge/redness/pain at c-section or episiotomy incision 4 10 15 29 (16)<br />

redness/pain/puss around nipples 2 15 7 24 (13)<br />

Other – specify 38 17 22 77 (43)<br />

Don’t know 6 0 2 8 (4)<br />

Average number of danger signs known out of 27 listed danger<br />

signs (not including other)<br />

5 9 11 8<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 51


OBJECTIVE 3:<br />

To determine the health seeking behaviours of HIV-positive <strong>and</strong> HIV- negative pregnant<br />

women.<br />

Appendix A18: Utilisation Score by HIV Status<br />

Variable HIV-positive HIV-negative<br />

# (%) # (%)<br />

For all pregnancies<br />

Attended ANC in all pregnancies 56 (93) 59 (98)<br />

Delivered in Hospital or Clinic in all pregnancies 51 (85) 55 (92)<br />

For last pregnancy<br />

Began ANC in months 0-4 25 (42) 33 (55)<br />

1 st infant follow-up visit prior to 6 weeks of age 41 (68) 43 (73)<br />

1 st maternal follow-up visit prior to 6 weeks post-delivery 32 (54) 27 (46)<br />

Currently using Family Planning 46 (79) 46 (77)<br />

Mean Utilisation Score =1 point for each of above (Std<br />

Deviation)<br />

4.2 (1.3) 4.4 (1.1))<br />

P=0.98<br />

Utilisation Score >=5 28 (50%) 30 (51%)<br />

P=0.93<br />

n = 60 n = 60<br />

Appendix A19: Immunisation by HIV Status<br />

Paarl Rietvlei Umlazi<br />

Complete immunisations for age by HIV # (%) # (%) # (%)<br />

status<br />

HIV-positive 14/20 (70) 1/15 (7) 3/16 (19)<br />

HIV-negative 12/20 (60) 1/16 (6) 14/17 (82)<br />

p-value 0.51 0.96 0.0003<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 52


Appendix A20: Quality of Care by HIV Status<br />

Variable HIV-positive HIV-negative p-value<br />

# (%) # (%)<br />

ANC<br />

Privacy during visits 50 (85) 57 (95) 0.06<br />

Staff spoke about pregnancy progress 47 (80 49 (82) NS<br />

Able to ask questions 32 (54) 34 (57) NS<br />

Asked to return for another visit 56 (97 59 (100) NS<br />

Treated positively by health staff 48 (81) 45 (75) NS<br />

Rate care as excellent 33 (57) 27 (45) NS<br />

Would recommend service 59 (100) 58 (98) NS<br />

Able to follow health advise 11 (19) 15 (25) NS<br />

In Hospital<br />

Advised to return for check-up after birth 40 (70) 33 (55) 0.09<br />

Health staff discussed family planning 48 (84) 51 (85) NS<br />

Treated positively by health staff 43 (75) 43 (72) NS<br />

Rate care as excellent 22 (39) 32 (53) NS<br />

Would recommend hospital 55 (97) 57 (95) NS<br />

Postpartum<br />

Staff discussed HIV/AIDS 34 (76) 26 (58) 0.07<br />

Staff discussed breastfeeding 29 (64) 31 (67) NS<br />

Staff discussed family planning 30 (67) 27 (59) NS<br />

Privacy during visits 39 (89) 36 (86) NS<br />

Staff asked to return for another visit 39 (87) 32 (76) NS<br />

Rate care as excellent 13 (26) 19 (35) NS<br />

n = 60 n = 60<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 53


OTHER TABLES:<br />

Family Involvement in Pregnancy, Birth <strong>and</strong> Care of Infant<br />

Appendix A21: Family Involvement in Pregnancy**<br />

Paarl Rietvlei Umlazi<br />

Was mother advised to go for ANC by family # (%) # (%) # (%)<br />

or friends?<br />

Yes 43 (72) 32 (53) 40 (69)<br />

No 17 (28) 28 (47) 17 (29)<br />

Who advised you to go for ANC? # (%) # (%) # (%)<br />

Husb<strong>and</strong>/father 5 (8) 3(5) 3 (5)<br />

Mother 20 (33) 15 (25) 19 (33)<br />

Sister 3 (5) 6 (10) 1 (2)<br />

Aunt/cousin/other female relative 5 (8) 3 (5) 5 (9)<br />

Friend 3 (5) 2 (3) 6 (10)<br />

Any other male relative 1 (2) 1 (2) 2 (3)<br />

Other advisers 1 (2) 1 (2) 2 (3)<br />

Husb<strong>and</strong>/mother 1 (2) 0 0<br />

Mother/sister/friend 2 (3) 1 (2) 1 (2)<br />

Aunt/other female relative/gr<strong>and</strong>mother/friend 1 (2) 0 1 (2)<br />

Mother/sister/aunt/cousin/other female relative 2 (4) 0 0<br />

Did mother get information on problems in<br />

pregnancy from family members or friends?<br />

Yes 32 (54) 4 (7) 4 (7)<br />

No 27 (46) 56 (93) 54 (93)<br />

Where do you usually get information about<br />

your health - woman answered<br />

family/friends?<br />

Yes 32 (54) 4 (7) 4 (7)<br />

No 27 (46) 56 (93) 54 (93)<br />

Woman felt family/friends were the best<br />

source of health information.<br />

Yes 20 (34) 0 8 (14)<br />

No 39 (66) 60 (100) 50 (86)<br />

**From Mother’s Interview<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 54


Appendix A22: Family Involvement in Labour/Birth***<br />

Paarl Rietvlei Umlazi<br />

Did anyone stay with you during labour or # (%) # (%) # (%)<br />

birth?<br />

Yes 12 (20) 3 (5) 1 (2)<br />

No 48 (80) 56 (93) 57 (98)<br />

Did you like or would you have liked having # (%) # (%) # (%)<br />

family/friends with you during labour or<br />

birth?<br />

Yes 50 (85) 22 (37) 32 (56)<br />

No 9 (15) 36 (61) 24 (42)<br />

*** From Mother’s Interview<br />

Appendix A 23: Family Involvement in Pregnancy****<br />

Paarl Rietvlei Umlazi<br />

Relationship to mother of household<br />

# (%) # (%) # (%)<br />

member interviewed<br />

Husb<strong>and</strong> 10 (17) 4 (7) 4 (7)<br />

Mother 17 (28) 15 (25) 11 (19)<br />

Gr<strong>and</strong>mother 7 (12) 5 (8) 5 (9)<br />

Mother-in-law 2 (3) 10 (17) 1 (2)<br />

Sister/other female relative 20 (33) 25 (42) 18 (32)<br />

Other relative 3 (5) 1 (2) 18 (32)<br />

Father/father-in-law 1 (2) 0 0<br />

Should other household members make<br />

# (%) # (%) # (%)<br />

sure women gets ANC?<br />

Yes 60 (100) 60 (100) 57 (98)<br />

No 0 0 1 (2)<br />

Why should household members ensure<br />

# (%) # (%) # (%)<br />

women get ANC?<br />

Family members are responsible 11 (19) 30 (50) 11 (19)<br />

To get help/advice from health staff 15 (25) 5 (8) 9 (16)<br />

Best for the mother/baby health 15 (25) 12 (20) 5 (9)<br />

Unbooked are treated badly 0 3 (5) 2 (3)<br />

To check problems/baby growth 19 (32) 14 (24) 34 (59)<br />

Get financial help 1 (2) 1 (2) 0<br />

****From Household Member’s Interview<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 55


Appendix A24: Family Involvement in Labour<br />

Paarl Rietvlei Umlazi<br />

In this community is it difficult to get to a # % # % # %<br />

health facility?<br />

Yes 34 (57) 33 (55) 20 (34)<br />

No 26 (43) 27 (45) 38 (66)<br />

Why is it a problem/not a problem to get to # % # % # %<br />

the health facility?<br />

Transport problems 29 (49) 13 (22) 13 (23)<br />

Financial problems 14 (24) 21 (36) 1 (2)<br />

Health facilities are close/many 10 (17) 21 (36) 22 (39)<br />

Transport available 13 (22) 9 (15) 24 (42)<br />

Health facilities too far 2 (3) 12 (21) 0<br />

Transport/financial problems 0 2 (3) 0<br />

Ask help from neighbours 1 (2) 0 0<br />

Afraid of AIDS 1 (2) 0 0<br />

Should a woman deliver with family or<br />

# % # % # %<br />

friends in the room?<br />

Yes 44 (73) 12 (20) 20 (34)<br />

No 15 (25) 46 (77) 37 (64)<br />

Both 1 (2) 0 1 (2)<br />

Why/Why not deliver with a relative or<br />

# % # % # %<br />

friend in the room?<br />

To make sure she is taken care of 17 (28) 2 (3) 9 (16)<br />

Nurses do not allow 3 (5) 3 (5) 2 (3)<br />

Privacy/culture 5 (8) 15 (25) 12 (21)<br />

Labour support 21 (35) 5 (8) 10 (17)<br />

Other 14 (23) 34 (57) 25 (43)<br />

To ask questions 1 (2) 0 0<br />

Were you with the mother during birth of # % # % # %<br />

her last baby?<br />

Yes 8 (14) 1 (2) 3 (5)<br />

No 52 (87) 59 (98) 55 (95)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 56


Appendix A25: Family Involvement after the Birth of the Baby<br />

Paarl Rietvlei Umlazi<br />

Do you help with care for the baby? # (%) # (%) # (%)<br />

Yes 59 (98) 57 (95) 56 (97)<br />

No 1 (2) 3 (5) 2 (3)<br />

What do you do to help the baby? # (%) # (%) # (%)<br />

Gives advice 2 (3) 1 (2) 2 (3)<br />

Do everything 12 (20) 1 (2) 2 (3)<br />

Financial assistance 1 (2) 1 (2) 1 (2)<br />

Feed the baby 29 (48) 36 (61) 26 (45)<br />

Look after the baby 20 (33) 6 (10) 20 (34)<br />

Bath the baby 16 (27) 26 (44) 24 (41)<br />

Are there other HH members who help the<br />

# (%) # (%) # (%)<br />

baby?<br />

Yes 34 (57) 43 (72) 45 (76)<br />

No 26 (43) 15 (25) 12 (21)<br />

# (%) # (%) # (%)<br />

What do they do to help the baby?<br />

Bath/wash the baby 14 (23) 19 (32) 15 (26)<br />

Feed the baby 21 (35) 27 (45) 17 (29)<br />

Look after the baby 11 (18) 4 (7) 2 1 (36)<br />

Appendix A 26: Do You Think That the Health of Women During<br />

Pregnancy is an Important Problem in South Africa? ******<br />

Paarl Rietvlei Umlazi<br />

# (%) # (%) # (%)<br />

Yes 56 (93) 42 (70) 46 (79)<br />

No 4 (7) 18 (30) 10 (17)<br />

Both 0 0 1 (2)<br />

******From the Household Member’s Interview<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 57


Socio-Economic Variable Paarl Rietvlei Umlazi<br />

Water Source (n = 232) # % # % # %<br />

Piped-inside house 36 (53) 1 (1) 47 (57)<br />

Piped-yard 26 (38) 8 (10) 19 (23)<br />

Piped-public 6 (9) 26 (32) 16 (20)<br />

Borehole/well 0 12 (15) 0<br />

River/stream 0 35 (42) 0<br />

Total Number 68 82 82<br />

Type of Toilet in the House (n = 232) # % # % # %<br />

Flush toilet 63 (92) 2 (3) 43 (52)<br />

Pit latrine 0 78 (95) 34 (42)<br />

Ventilated pit latrine 0 0 5 (6%)<br />

None 4 (6) 1 (1) 0<br />

Other 1 (2) 1 (1) 0<br />

Total Number 68 82 82<br />

Main Fuel used for Cooking ( n = 231) # % # % # %<br />

Electricity 36 (53) 10 (12) 60 (74)<br />

Gas 12 (18) 2 (3) 1 (1)<br />

Paraffin 20 (29%) 15 (18) 19 (24)<br />

Charcoal 0 1 (1) 0<br />

Wood 0 54 (66) 1 (1)<br />

Total Number 68 82 81<br />

Do you have a working…<br />

n = 68 n = 82 n = 82<br />

# % # % # %<br />

Refrigerator/freezer 46(69) 19 (24) 49 (59)<br />

Radio 46 (69) 49 (63) 57 (69)<br />

Television 44 (66) 22 (28) 48 (58)<br />

Stove 41 (61) 17 (22) 79 (95)<br />

Telephone/cell phone 37 (55) 33 (42) 47 (57)<br />

Car 8 (12) 4 (5) 7 (8)<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 58


APPENDIX B1: MATERNAL VERBAL AUTOPSY CASE SUMMARIES<br />

MATERNAL DEATH REVIEWS - INDIVIDUAL CASE <strong>ANALYSIS</strong>: Community Situational Analysis UWC/ HST<br />

Objective<br />

1 1. To determine factors influencing the utilisation of <strong>and</strong> barriers to utilisation of maternal health services including PMTCT<br />

Demographic Data <strong>and</strong><br />

Household Infromation a<br />

Acccessbility of Health<br />

Services (Transportation)<br />

HIV<br />

Status PMTCT Age Education Status Carer Source of Income Method Time Cost Referal Hops Site<br />

Case 1 Unknwn ? 22 std 10 single Aunt Grant R 500 Bus 15min 6,00 25min/taxi Mlazi-info<br />

Case 2 Unknwn ? unknwn std 10 Cohab Boyfriend Regular R 400 walk 15min N/A 30min/taxi Mlazi-info<br />

Case 3 Positive Yes unknwn std 10 Cohab Boyfriend Iregular 200 Taxi 30min 7,00 20min/taxi Mlazi-info<br />

Case 4 Unknwn unknwn 27 not shown single Wasn’t sik Grant 800 walk 10min N/A 30min/taxi Mlazi-info<br />

Case 5 Unknwn unknwn unknwn std 4 maried/mn Wasn’t sik Regular Nil shown walk 10min N/A 45min/taxi Mlazi-info<br />

2hrs taxi& 2hrs<br />

Case 6 Positive unknwn 31 std 6 Cohab Mother Nil 200 walk 1hour N/A walk<br />

Umzimku<br />

Case 7 Unknwn unknwn unknwn std 5 single Granny Old Pension Taxi 30min 8,00 30min/taxi Umzimku<br />

Case 8 known nil 25 std 7 single Mother Regular 350 Taxi 30min 5,00 45min/taxi Umzimku<br />

Case 9 Unknwn nil 28 std 10 single Mother Regular 770 Taxi 45min 6,00 90min/taxi Umzimku<br />

Case 10 Unknwn unknwn 39 std 10 maried/mn Husbnd Chld grant 850 Taxi 1hour 16,00 1hr/taxi Umzimku<br />

Case 11 Positive Yes unknwn std 10 single sister Chld grant 340 walk 10min 9,00 20min/taxi Paarl<br />

Case 12 Positive Yes 30 std 6 separated Aunt grant,employd, 1,600 walk 15min 20,00 20min/taxi Paarl<br />

Case 13 Positive Yes 24 std 7 single Mother grant 1,600 walk 10min 10,00 20min/taxi Paarl<br />

Case 14 Positive Yes unknwn std 10 single sister grant 400 walk 1 hour 7,00 30min/taxi Mlazi-info<br />

Case 15 Positive Yes 27 std 10 single Brother Grant 300 Taxi 20min 6,00 30min/taxi Mlazi-info<br />

Case 16 Positive Yes unknwn std 6 Cohab Aunt Grant 300 walk 20min 7,00 30min/taxi Mlazi-info<br />

Case 17 Positive Yes 31 std 9 Cohab Mother Emplymnt 800 walk 10min 7,00 45min/taxi Mlazi-info<br />

Mlaziinfo<br />

Case 18 Positive unknwn unknwn std 7 maried/mn Husbnd Emplymnt 700 walk 20min 1hr/taxi<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 59


Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 60


APPENDIX B2: INFANT VERBAL AUTOPSY REPORT<br />

Background<br />

Infant mortality is one of the most important indicators of health <strong>and</strong> development, <strong>and</strong> much<br />

research has focused on determining the causes of death for infants in resource-poor settings.<br />

It is well known, for example, that distal socioeconomic factors such as income, social status<br />

<strong>and</strong> education are closely related to child health outcomes, as are intermediate environmental<br />

<strong>and</strong> behavioural factors. 1 Less well researched, however, are the perceptions of mothers <strong>and</strong><br />

caregivers regarding the processes <strong>and</strong> events leading up to <strong>and</strong> surrounding the death of their<br />

infants. Few studies have endeavoured to let families in resource-poor settings tell their own<br />

stories directly, an approach that is likely to provide additional insights into the supports<br />

received <strong>and</strong> problems <strong>and</strong> barriers encountered during their child’s illness, as well as insights<br />

into how the health <strong>and</strong> social service system can more effectively respond to the needs of<br />

these families.<br />

The aim of this pilot study was to develop research methods that will enable a better<br />

underst<strong>and</strong>ing of the behavioural, structural, <strong>and</strong> systemic factors that play a role in the deaths<br />

of infants in the Good Start study settings. Specific objectives were to test <strong>and</strong> refine data<br />

collection instrumentation <strong>and</strong> methods, <strong>and</strong> to present preliminary themes emerging from the<br />

data. Subsequent research will utilise the instruments <strong>and</strong> methods resulting from this pilot in<br />

order to present a comprehensive account of the context in which infant deaths occur,<br />

motivations that lead to decisions, actions or non-actions on the part of families, <strong>and</strong><br />

perspectives on factors that contribute to a breakdown in the public health system. This<br />

information will support the Good Start study’s efforts to investigate factors <strong>and</strong> barriers<br />

influencing utilisation of health services <strong>and</strong> the level of awareness of risk factors associated<br />

with poor health outcomes, particularly among families with young children.<br />

This paper describes the data collection <strong>and</strong> analytical methods used, as well as the<br />

preliminary findings of the pilot study.<br />

Methods<br />

Sample <strong>and</strong> recruitment: Between August 2003 <strong>and</strong> April 2005, interviews were conducted<br />

with mothers <strong>and</strong> caregivers whose primary residence was in one of the three Good Start study<br />

sites (Paarl, Rietvlei or Umlazi) <strong>and</strong> who had a child in the home die prior to his or her first<br />

birthday. Potential participants were identified during a routine home visit when the Good Start<br />

field research worker discovered that an infant had died. The field research worker then asked<br />

if the mother or caregiver would participate in an interview focused on the events occurring<br />

prior to the infant’s death. If the mother or caregiver was willing to participate, a mutuallyagreed<br />

upon date <strong>and</strong> time for the interview was scheduled.<br />

As shown in Table 1, the sample primarily consisted of biological mothers, however in cases<br />

where the infant’s mother was not available or was not the primary caregiver, an interview was<br />

conducted with the other individual in the household who was the primary caregiver for the<br />

infant. When neither of those individuals was available, the interview was not conducted. In<br />

1 Mosley, W.H. & Chen, L.C. (1984). An analytical framework for the study of child survival in developing countries.<br />

Population Development Review. 10 (suppl): 25–45.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 61


total, 40 interviews were conducted. Table 1 presents an overview of some additional<br />

descriptive characteristics of the study population <strong>and</strong> their infants.<br />

Table 1: Descriptive Characteristics of the Pilot Study Population <strong>and</strong> their Infants<br />

Characteristic<br />

Rietvlei<br />

N (%)<br />

Paarl<br />

N (%)<br />

Umlazi<br />

N (%)<br />

Total<br />

N (%)<br />

Interviews conducted 17 (43) 4 (10) 19 (48) 40 (100%)<br />

Type of respondent<br />

Mother<br />

Caregiver<br />

Unknown<br />

8<br />

3<br />

6<br />

4<br />

0<br />

0<br />

19<br />

0<br />

0<br />

31 (78)<br />

3 (.08)<br />

6 (15)<br />

Age of respondent (years)<br />

15-19<br />

20-29<br />

30-39<br />

40-49<br />

50-59<br />

60+<br />

Unknown<br />

Education (st<strong>and</strong>ard)<br />

6 or less<br />

7-10<br />

University<br />

Unknown<br />

Marital status<br />

Single<br />

Cohabiting<br />

Married<br />

Unknown<br />

Child’s age at death (weeks)<br />

Less than 1<br />

1-4 weeks<br />

5-24 weeks<br />

25-52 weeks<br />

Sex of child<br />

Male<br />

Female<br />

0<br />

8<br />

1<br />

0<br />

0<br />

1<br />

7<br />

4<br />

5<br />

0<br />

8<br />

5<br />

0<br />

3<br />

9<br />

2<br />

1<br />

11<br />

3<br />

0<br />

1<br />

0<br />

0<br />

0<br />

0<br />

3<br />

0<br />

0<br />

0<br />

4<br />

0<br />

0<br />

0<br />

4<br />

0<br />

0<br />

1<br />

3<br />

0<br />

12<br />

5<br />

1<br />

0<br />

0<br />

1<br />

1<br />

4<br />

0<br />

14<br />

3<br />

1<br />

1<br />

14<br />

1<br />

1<br />

14<br />

3<br />

0 (0)<br />

21 (53)<br />

6 (15)<br />

1 (.03)<br />

0 (0)<br />

1 (.03)<br />

11 (28)<br />

5 (13)<br />

9 (23)<br />

0 (0)<br />

26 (65)<br />

8 (20)<br />

1 (.03)<br />

4 (1)<br />

27 (68)<br />

3 (.08)<br />

2 (.05)<br />

26 (65)<br />

9 (23)<br />

8<br />

9<br />

2<br />

2<br />

7<br />

12<br />

17 (43)<br />

23 (57)<br />

Note: Most figures are presented as numbers rather than percentages because of the small sample size. Those<br />

percentages that are presented do not always add to 100 due to rounding.<br />

Development of Instrumentation: Over the piloting time period, several iterations of an<br />

interview instrument were used, the first of which was based largely on a “social autopsy”<br />

instrument used in the Matlab Integrated Management of Childhood Illness (IMCI) Evaluation<br />

Study. 2 Information obtained from this early instrument was sometimes vague <strong>and</strong> resulted in<br />

an incomplete account of the events leading up to the infant’s death. Later versions of the<br />

instrument evolved in an attempt to obtain a more complete picture of mother’s <strong>and</strong> caregiver’s<br />

attitudes, perceptions <strong>and</strong> recommendations for improving health care services for families with<br />

young children. In addition, these later versions aimed to ensure both the suitability of content<br />

2 Arifeen, S.E. & Bangladesh, M.C.E. (Dec 2001). The Matlab IMCI Evaluation Study - A Multi-Country Evaluation<br />

Project. Progress Report. Geneva: World Health Organization.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 62


areas covered during the interview <strong>and</strong> the appropriate wording of questions within the South<br />

African context.<br />

After numerous discussions within the study team regarding the appropriateness <strong>and</strong> clarity of<br />

questions, a penultimate instrument evolved from this pilot study. This instrument incorporates<br />

aspects of the Matlab IMCI approach as well as approaches utilised in home interviews through<br />

the Fetal <strong>and</strong> Infant Mortality Review (FIMR) Programme in the United States. 3 Information is<br />

obtained on the socio-economic situation of the family, the progression of the child’s illness<br />

leading to death, the first <strong>and</strong> last interactions the child had with various health providers<br />

preceding his or her death, perceptions of the infant’s health care, social supports available to<br />

the mother/caregiver, <strong>and</strong> any recommendations the mother/caregiver has for how the public<br />

health system <strong>and</strong> local community can respond better to the needs of families with sick<br />

infants. In the future, the instrument will explore better the use of local traditional healers <strong>and</strong><br />

the role they play in providing health care to infants.<br />

In addition, based on the piloting experience, a Neonatal Supplement was designed specifically<br />

to assess the experiences of mothers whose babies died shortly after birth without leaving the<br />

health facility.<br />

Development of Research Approach: In addition to identifying necessary changes to the<br />

instrumentation, piloting provided valuable information regarding the approach to be used in<br />

future research. For example, it is apparent from piloting that it will be most appropriate to have<br />

field workers administer all interviews with mothers <strong>and</strong> caregivers in the local language without<br />

a second researcher in the same room. This was found to be the case because many of the<br />

respondents have become familiar <strong>and</strong> comfortable with the field workers involved with the<br />

Study over time, <strong>and</strong> also because it is critical to do whatever possible to respect the privacy of<br />

the respondents, particularly due to the sensitive nature of the study topic. It is hoped that by<br />

only having to speak with one person in future interviews, the respondents will feel more<br />

comfortable speaking c<strong>and</strong>idly about their experiences <strong>and</strong> perspectives.<br />

Preliminary Findings<br />

This pilot study provided valuable information relating both to the methods <strong>and</strong> approach to be<br />

used in future research, as well as an initial glimpse into some of the behavioural, structural,<br />

<strong>and</strong> systemic factors that play a role in the deaths of infants in the Good Start study settings. All<br />

interviews obtained were analysed to determine commonalities, themes, <strong>and</strong> critical issues. A<br />

summary of these initial findings is presented below with the important caveat that additional<br />

research is needed to ensure a comprehensive underst<strong>and</strong>ing of the experiences of women<br />

living in the Good Start study sites who have lost infants.<br />

Factors influencing utilisation of health services: Preliminary findings suggest that the<br />

utilisation of health services is related to feasibility, desirability, an awareness of when care is<br />

needed for the infant, <strong>and</strong> the quality of care available.<br />

Poor feasibility: Some respondents reported that they were unable to take their child for care<br />

even though they realised the child needed it. This sometimes happened because the child<br />

was sick in the evening when no transport was available or when no one was available to<br />

accompany them to a facility (i.e., they did not feel safe taking the child alone). Other<br />

3 Schaefer, J., Noell, D., McClain, M. (Dec 2002). Fetal <strong>and</strong> Infant Mortality Review: A Guide for Home<br />

Interviewers. Washington, DC: American College of Obstetricians <strong>and</strong> Gynecologists.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 63


espondents reported that they were unable to afford the cost of transport to a facility. One<br />

mother in Rietvlei, for example, reported that although the local clinic had referred her baby to<br />

hospital to treat his dehydration, she didn’t have the money to take him there. Over the course<br />

of two weeks, she took the child back to the clinic several times for help, each time getting<br />

referred to hospital. Since this was not an option for her <strong>and</strong> since the child was not getting<br />

better, the mother eventually starting mixing the clinic medicines with traditional medicines.<br />

After three days of this treatment, the baby’s condition worsened <strong>and</strong> he died as they were<br />

taking him, once again, back to the clinic.<br />

Lack of desirability: In other cases, beliefs about cause of the infant’s illness sometimes<br />

determine whether or not the respondent feels health services are desirable. One respondent<br />

in Umlazi, for example, reported that her baby became sick at night <strong>and</strong> she was afraid to go to<br />

hospital alone in the dark. Her neighbours who heard the baby crying told her that there was<br />

nothing she could do for the baby because the cause of the illness was witchcraft (“Ishawe<br />

Yinyoni”). Because the mother then felt that witchcraft was responsible, she did not feel that<br />

she could send the baby for western medicine. When asked “what would have made things<br />

better or easier for you?” she stated that the child should have been taken to her father’s place<br />

to have the cultural ceremony in which the family burns the plant “Impepho” <strong>and</strong> the child is<br />

introduced to the ancestors. She also expressed her belief that if the baby had been taken to a<br />

traditional healer to fight witchcraft she would still be alive. This mother did not appear to<br />

believe that health services could have prevented the death.<br />

Lack of awareness of the danger signs for infants: Preliminary findings suggest that some<br />

mothers are not aware of the danger signs to look for when their child needs medical attention.<br />

Several respondents reported that they did not realise the seriousness of their child’s condition<br />

until it had progressed to a very severe stage. One mother in Rietvlei, for example, reported<br />

that her baby vomited for three days before the baby’s gr<strong>and</strong>mother decided to take her to a<br />

traditional healer for medicines. Another mother from Umlazi described how her baby became<br />

ill in the evening <strong>and</strong>, not realising the seriousness of his condition, planned to take the child to<br />

a paediatrician in the morning. However, the baby died at three o’clock in the morning, before<br />

she was able to seek care.<br />

It is possible that mothers are not being told (by the staff who tend to the ill child) the<br />

appropriate danger signs to watch for at home. 4 For example, a Rietvlei mother reported that<br />

her infant was treated at a clinic <strong>and</strong> then referred to hospital for his cough. This baby was<br />

admitted to the hospital for a week after which he was discharged <strong>and</strong> showed improvement.<br />

The next week, however, the baby started breathing very fast <strong>and</strong> died after a few days. She<br />

reported that she did not take him back to hospital because she thought the treatment the<br />

hospital had already given him would eventually cure him. Had she been instructed on the<br />

steps to take if the infant’s health regressed, it is possible that he would have been taken back<br />

to the hospital for additional care <strong>and</strong> could have survived this illness.<br />

Poor quality of care: The experiences reported by respondents in this pilot study suggest that<br />

the quality of care received in many instances was sub-st<strong>and</strong>ard. For example, some mothers<br />

who took their infants for care reported that they were sent home with panado or electrolyte<br />

sachets when perhaps the infant should have been admitted. A mother in Rietvlei reported that<br />

she took her sick infant to hospital, was given medicine <strong>and</strong> then sent home. On that same day<br />

the child passed away at home. In other cases, mothers recounted that their infants died on the<br />

4 It is important to note that some mothers may in fact be told about danger signs to watch for <strong>and</strong> just do not<br />

remember what they have been told when they return home.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 64


way home after having been admitted <strong>and</strong> discharged from hospital. One Rietvlei mother<br />

recounted how her baby was discharged from hospital while it was still showing signs of<br />

weakness <strong>and</strong> a sunken fontanelle. The baby went to sleep on the way home <strong>and</strong> when she<br />

arrived at home she realised the baby had died. Another Rietvlei mother reported that her child<br />

was admitted for three weeks with cough, vomiting <strong>and</strong> fever. The staff advised the mother to<br />

take the child home where she then died after two days.<br />

Some mothers reported taking their infants to clinic but that the clinic did not have the<br />

appropriate medicine. When asked if they have any ideas “for how health care facilities <strong>and</strong><br />

providers can better serve families…with sick infants” several mothers suggested that it is of<br />

primary importance that clinics have enough stocks of medicines. One mother stated, “It is not<br />

nice to go to the clinic seeking help <strong>and</strong> you end up not getting that help you needed.” Another<br />

mother suggested that the most important thing needed to improve care is “[i]f facilities could<br />

improve on the long hours people (sick people) endure before being attended [to].” One<br />

respondent stated that her baby got sick at night but that she could not get transport until the<br />

next morning. When they got to the health facility, they had to wait for several hours to be seen.<br />

By that time, her baby was already gravely ill.<br />

An important finding relating to quality of care is that many respondents reported that they did<br />

not know the cause of their infant’s death. This occurred even among some women whose<br />

infant had died in hospital. They reported that staff did not take the time to explain to them what<br />

happened, <strong>and</strong> they did not feel that they had the right to ask. These mothers expressed grave<br />

disappointment about their experiences with facility staff. For example, one mother seemed to<br />

have accepted the fate of their baby (she believed that it was her baby’s death day – "kwase<br />

kufike usuku”) but she became very tearful when recounting how she had been treated at the<br />

facility.<br />

Other initial findings:<br />

• Sudden Infant Death Syndrome (SIDS) appears to have played a role in the deaths of at<br />

least two infants included in the study. In these cases, mothers reported seeing no warning<br />

signs that the child was ill at all prior to its death.<br />

• This initial analysis suggests that there are no differences between HIV positive women<br />

<strong>and</strong> HIV negative women with respect to their care-seeking behaviours for their infants.<br />

However, more research into this issue is needed.<br />

• To date, the only specific group that women have identified as supportive to them is their<br />

local HIV Support Group. No mothers have identified health staff as providing support to<br />

them <strong>and</strong> in fact, several of the mothers whose infants died in hospital specifically stated<br />

that they received no grief counselling following the death.<br />

• Mothers reported mixed feelings about being interviewed about the death of their child.<br />

Some mothers (especially those who had accepted the death of their child) said that it was<br />

fine <strong>and</strong> even helpful to participate in the interview. For example, one mother stated that<br />

“[i]t was a positive experience to share my story <strong>and</strong> to be visited by the study team.” A few<br />

others reported that they felt sad <strong>and</strong> tearful during the interview <strong>and</strong> it was therefore hard<br />

for them to recount their story. One mother stated that, “[I]t was difficult having to relate my<br />

experiences with you but I will be happy if I see changes occur [because of the study].”<br />

Discussion<br />

The information resulting from in-depth interviews such as those used in this pilot study has the<br />

ability to highlight the complex pathways <strong>and</strong> underlying mechanisms that precede the majority<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 65


of infant deaths in high risk communities, including those which may have been previously<br />

undetected by quantitative research. Instead of focusing on what is happening <strong>and</strong> who is<br />

affected, this method will provide new information to help us underst<strong>and</strong> why the deaths occur.<br />

In addition, the methods tested during this pilot study show promise for providing useful insights<br />

for clinical <strong>and</strong> public health practitioners working with families, by highlighting the particular<br />

realities associated with the social context in which these families live. The information<br />

generated with this approach may help some practitioners better comprehend issues like noncompliance<br />

among their clients.<br />

It is important to reiterate that these are preliminary findings based on small samples in the<br />

Good Start study sites. Additional interviews conducted prospectively as infant deaths are<br />

identified within the Good Start study have the potential to provide critical information about the<br />

behavioral, structural <strong>and</strong> systemic factors associated with infant death in these areas. Future<br />

research also has the potential to benefit public health by supporting the development of<br />

recommendations for how service systems <strong>and</strong> public policies can better match the real life<br />

circumstances of women <strong>and</strong> infants at risk. Rarely are such recommendations based on<br />

client-generated data, although it can be expected that this will strengthen their relevance <strong>and</strong><br />

appropriateness.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 66


APPENDIX B3: FACILITY SUB-STUDY REPORT: PAARL<br />

1. INTRODUCTION<br />

Paarl General Hospital <strong>and</strong> the facilities which refer to this hospital were identified as a pilot site<br />

for the implementation of the PMTCT programme in early 2001. In the Western Cape the<br />

PMTCT programme has always fallen under the HIV <strong>and</strong> AIDS Directorate.<br />

The Paarl District falls within the West Cape Winel<strong>and</strong>s Region. The Paarl General Hospital is<br />

run by the Provincial Administration of the Western Cape (PAWC) <strong>and</strong> is presently being<br />

upgraded to be the Regional Hospital. The Paarl East Hospital which is also known as the TC<br />

Newman Hospital is run by Paarl District (PAWC). This “hospital” functions as the outpatients<br />

department of the General Hospital. Presently, the PHC clinics in <strong>and</strong> around Paarl fall under<br />

the Local Municipality. However, in June, the management of the local clinics will be taken<br />

over by the provincial health administrators <strong>and</strong> all health workers will be transferred from the<br />

local municipality to the provincial administration.<br />

This investigation into the PMTCT program at a number of facilities in the Paarl District was<br />

undertaken on the 10 <strong>and</strong> 11 March 2005.<br />

2. VCT<br />

2.1 Lay counsellors<br />

Pregnant women are all encouraged to have a VCT test. The counselling both at the hospitals<br />

<strong>and</strong> clinics is done almost exclusively by lay counsellors who are supported, monitored <strong>and</strong><br />

paid by AGAPE, a local NGO. These counsellors attended a month long training course run by<br />

a private psychologist. In the hospital, the lay counsellors are available from Monday to Friday,<br />

from 8.00 to 14.00. The contribution of lay counsellors at the three different clinics visited<br />

varied. At Mbekweni clinic a very dedicated lay counsellor’s work <strong>and</strong> contribution to HIV<br />

services was considered invaluable by the nurse responsible for PMTCT. At Nedeberg Clinic<br />

there had been problems with a lay counsellor who was only available for six months last year.<br />

When available he had only worked twice a week in the afternoon for two hours. At J.J du<br />

Preez le Roux clinic, the lay counsellor worked three mornings a week.<br />

AGAPE is the local NGO responsible for the counsellors. They are allocated money by PAWC<br />

<strong>and</strong> are responsible for the training, monitoring, supporting <strong>and</strong> supervising the work of the lay<br />

counsellors. The counsellors are paid R1600 per month. There was uncertainty about the<br />

future functioning of AGAPE at the time of the investigation as they had not been allocated<br />

money for the administration <strong>and</strong> monitoring of the lay counsellors. It was understood that this<br />

work would become the responsibility of the District HIV/STI/TB Coordinator.<br />

To provide support for the lay counsellors, AGAPE had organised a monthly session with a<br />

psychologist where lay counsellors could “debrief” <strong>and</strong> get support in their dem<strong>and</strong>ing work.<br />

2.2. Nurses <strong>and</strong> VCT<br />

None of the professional nurses in either the maternity or postnatal wards at Paarl General<br />

Hospital had VCT training. At the clinics some of the nurses have been trained in VCT, but<br />

others had not.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 67


2.3. Testing of Patients<br />

At Paarl General Hospital the Abbot Test was used as the first test for HIV/AIDS <strong>and</strong> the<br />

Parasheek as the second test. If the results were discordant blood was sent for an ELISA.<br />

The turn around time for an ELISA test was less than 24 hours <strong>and</strong> in fact, was usually the<br />

same day.<br />

All the clinics were using the Determine Test as the first test for HIV/AIDS <strong>and</strong> the Parasheek<br />

as the second test. If results were discordant blood was sent for an ELISA. The turn around<br />

time for an ELISA test at the clinics was two to four weeks.<br />

When Paarl was established as a pilot site for the PMTCT programme, training on testing was<br />

conducted. No formal training on testing has been conducted since this time. As a result, very<br />

few of the staff who are presently doing the testing had received any formal training. This was<br />

especially noticeable in the clinics where staff had recently been rotated. In the absence of<br />

formal training nurses teach one another at their respective clinics how the testing is done.<br />

If a woman is admitted to the maternity ward in early labour <strong>and</strong> has not been tested, she<br />

would be counselled <strong>and</strong> tested. However if she was in active labour <strong>and</strong> four centimetres or<br />

more dilated she would not be counselled <strong>and</strong> tested.<br />

No facilities have ever run short of Rapid Test Kits. The tests are distributed by the District<br />

HIV/STI/TB Coordinator.<br />

3. POLICIES AND GUIDELINES<br />

At all facilities the Western Cape revised edition of the PMTCT protocol could be quickly<br />

located. However none of the clinic staff were aware of the changes to the protocols for<br />

women on HAART. This was of concern as a number of women on the PMTCT programme<br />

were on HAART. All hospital staff interviewed were aware of the changes <strong>and</strong> concerned<br />

about the implications of HAART on the PMTCT program.<br />

4. REFERRALS<br />

Pregnant women who present at their local clinic are referred to TC Newman Hospital for<br />

antenatal care. No antenatal care was provided at the clinics. During ANC clinics pregnant<br />

women are encouraged to test for HIV. Those who tested positive <strong>and</strong> agreed to go on the<br />

PMTCT programme have a sticker documenting this information put into their antenatal cards.<br />

The sticker enabled maternity ward staff at the hospital to identify women on the PMTCT<br />

programme.<br />

Having delivered in the maternity ward of Paarl General Hospital women were transferred to<br />

the postnatal ward. On discharge the Road to Health Card (RTHC) of the baby was clearly<br />

marked with a sticker to enable clinic staff to identify that the baby was on the PMTCT<br />

programme <strong>and</strong> was given nevirapine. On discharge mothers were told to report to the “post<br />

natal ward” at the TC Newman Hospital within 3 days of having given birth. (This is in fact the<br />

outpatient ward of the Paarl General Hospital). At the postnatal ward at TC Newman Hospital,<br />

women <strong>and</strong> their babies were given a routine postnatal check up. PMTCT mothers were then<br />

referred to the “gynae ward” of the TC Newman Hospital before being discharged to the<br />

different PHC clinics.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 68


Staff at all facilities felt that the referral system was effective <strong>and</strong> the loss of patients was not<br />

due to problems in the referral pathway. As an outsider I found the referral pathway very<br />

complicated with so many steps that I wondered how many women got lost in between the<br />

different facilities which they had to go to.<br />

5. SERVICE INTEGRATION<br />

5.1. ANC <strong>and</strong> Child Health Services<br />

Both hospital <strong>and</strong> clinic staff feel that the PMTCT programme is well integrated into ANC <strong>and</strong><br />

child health services. It appeared to be well integrated into the ANC services, but given the<br />

limited time available it was not possible to determine the extent to which it was integrated into<br />

child health services.<br />

5.2. ART Services<br />

Hospital staff were aware of the changes to the PMTCT protocol for women on HAART. Their<br />

major concern with the implementation of the PMTCT programme were the problems they were<br />

encountering in integrating HAART <strong>and</strong> the PMTCT programme. On admission to the labour<br />

ward many women do not have their ART tick sheet available <strong>and</strong> are unclear about their<br />

adherence to ART treatment. This has implications for the administration of nevirapine <strong>and</strong><br />

thus negatively influences the PMTCT programme.<br />

6. RECORDING, MONITORING AND EVALUATION OF THE PMTCT PROGRAMME<br />

In the post natal ward at Paarl General Hospital the sister in charge was very efficient. All<br />

information related to the PMTCT programme was filed in one file, which made for easy access<br />

<strong>and</strong> efficiency. This included protocols, registers for VCT <strong>and</strong> choice of infant feeding as well<br />

as referral stickers for Road to Health Cards (RTHC). The registers were correctly filled in<br />

<strong>and</strong> up to date. Each month a form is filled in by the maternity <strong>and</strong> post-natal ward staff <strong>and</strong><br />

submitted to the District HIV/STI/TB Coordinator. The following information is captured on this<br />

form:<br />

• The client’s name<br />

• Was the client given nevirapine?<br />

• Is the client on AZT?<br />

• What was the date of delivery?<br />

• The type of delivery?<br />

• Feeding option chosen?<br />

• AZT/nevirapine given to baby?<br />

• Mother’s address<br />

A newly developed register has been developed for clinic use <strong>and</strong> was referred to by one of the<br />

clinic sisters as “the new PMTCT baby register”. However this was only in use at one of the<br />

clinics visited. The “old PMTCT register” was still in use at one of the clinics. It captures the<br />

same data as the new register, but in a slightly different format.<br />

The following information is captured on “the new PMTCT baby register”:<br />

• The number of new babies arriving at the clinic<br />

• The number of babies on the PMTCT programme<br />

• The number of babies who died<br />

• The number of mothers who died<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 69


• The number of babies exclusively breastfed<br />

• The number of babies exclusively bottle fed<br />

• Number of tins of formula dispensed<br />

• The number of babies receiving cotrimoxazole<br />

• The number of babies who had a PCR test at 14 weeks<br />

• The number of babies who had a PCR test at 14 weeks +<br />

• The number of babies who had PCR tests at 9 months, 12 months <strong>and</strong> 18 months<br />

On a monthly basis the District HIV/STI/TB Coordinator pulls together the data from the<br />

different facilities about the PMTCT programme to provide information on the PMTCT<br />

programme in the area. The detailed information is attached below as Appendix 1. The<br />

information in the table below could be derived from the data made available. The results of<br />

the PCR tests done on infants at 14 weeks were not available at the time of the investigation.<br />

The District HIV/ST/TB coordinator was not able to provide this information within three weeks<br />

of having completed the investigation.<br />

Indicators<br />

Values<br />

% of women given nevirapine during labour 86%<br />

% of newborns given nevirapine 99%<br />

% of newborns given AZT since the introduction of HAART in<br />

100%<br />

April 2004<br />

% of women opting to formula feed 82%<br />

N= 340<br />

7. COORDINATION, SUPPORT AND SUPERVISION<br />

The District HIV/STI <strong>and</strong> TB Coordinator was only appointed to her post in January this year.<br />

In addition two other staff responsible for oversight of the programme within the hospital <strong>and</strong><br />

clinics were also appointed recently. The facility staff interviewed felt that given time these<br />

three new members of staff would soon be in a position to supervise <strong>and</strong> support them more<br />

actively.<br />

Hospital staff reported that they had been supported by the district in the past <strong>and</strong> been visited<br />

<strong>and</strong> informed by the district HIV coordinator of changes to the programme. However, they<br />

have never had any provincial support. At the beginning of this year a person was appointed at<br />

the hospital to be in charge of the PMTCT programme at the hospital <strong>and</strong> provide support to<br />

those in the hospital providing PMTCT related services. No support from the incumbent had<br />

been provided at the time this investigation took place.<br />

Clinic staff reported that they received support from the previous district HIV Coordinator who<br />

had left at the end of 2004. Since she left they have had no further support. Staff at TC<br />

Newman Hospital who were involved in the PMTCT programme felt supported by the new<br />

District HIV/STI/TB coordinator.<br />

Facility staff reported that the bimonthly PMTCT programme coordination meetings, but had not<br />

taken place for five months. However a meeting was planned for the week following this<br />

investigation. In the past these meetings were successful in minimising the problems that<br />

arose as patients moved from one facility to another <strong>and</strong> provided a forum where changes to<br />

the programme could be discussed. These meetings were attended by staff involved in<br />

PMTCT from the maternity ward, post labour ward, TC Newman Hospital <strong>and</strong> PHC clinics.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 70


8. HUMAN RESOURCES<br />

The District HIV/STI/TB Coordinator had received no formal training on the PMTCT<br />

programme. Initially she learnt about the programme when studying midwifery. Since this time<br />

she has received training informally at events such as the case study conducted weekly by the<br />

head of the HAART services in Paarl. She received informal training on the Rapid Test Kit<br />

from someone at TC Newman Hospital. She is now responsible for training all new staff in the<br />

district on all aspects of the PMTCT programme.<br />

Unfortunately for this investigation all clinic staff had been rotated a month before the<br />

investigation was conducted. It is normal practice within the local municipality that professional<br />

nurses at clinics are rotated every two years. As a result the staff interviewed, although<br />

responsible for the PMTCT programme at each clinic had very little knowledge of the<br />

programme. Only one clinic nurse interviewed had received formal training in the PMTCT<br />

programme. The other staff interviewed who were responsible for running the PMTCT<br />

programme from February 2005, had received no formal orientation or training to the<br />

programme. The one said: “I informed myself about the programme by reading.” A number of<br />

the other staff interviewed said they learnt about the programme from other staff at the facility.<br />

It was noticeable that the Paarl General Hospital staff who had been in their positions for much<br />

longer, were much more knowledgeable about the programme, its intricacies <strong>and</strong> problems.<br />

Staff in the hospital had attended a day long course on the PMTCT programme when it was<br />

first introduced. Since this time they had received ongoing in-service training from the District<br />

HIV co-ordinator on changes to the programme.<br />

9. PHARMACEUTICAL SERVICES<br />

9.1. Supply of Drugs<br />

No facilities had ever experienced a stock out of nevirapine tablets, nevirapine syrup or<br />

cotrimoxazole. Short supplies of stock were quickly replenished. The clinics reported that they<br />

no longer dispensed nevirapine tablets to women at the 28 th week of pregnancy. This was<br />

done to avoid confusion in the maternity ward, as it is often difficult for staff to determine<br />

whether a woman in labour had taken her nevirapine tablets or not. In the maternity ward<br />

women are now routinely given nevirapine tablets when they are four centimeters dilated.<br />

According to the protocol nevirapine tablets are not administered if a woman arrives in the<br />

labour ward with the head crowned. Nevirapine syrup is given to all babies whose mothers are<br />

enrolled on the PMTCT programme.<br />

The dispensing of nevirapine tablets <strong>and</strong> syrup is recorded in registers in the maternity ward.<br />

Cotrimoxazole is not given to babies in the hospital. These babies are referred to TC Newman<br />

Hospital for prophylactic cotrimoxazole.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 71


10. NUTRITIONAL SUPPLEMENTATION<br />

No facility reported that they had ever run short of either multivitamins or infant formula. On<br />

discharge mothers are given two tins of formula. They then get more formula from their local<br />

clinic. Although initially infant formula was supplied for a year, it is now supplied for six months<br />

only.<br />

11. LABORATORY SERVICES<br />

All facilities reported that they were satisfied with the laboratory services both for ELISA <strong>and</strong><br />

PCR tests. The turn around time for an ELISA is less that a day within the hospital. It was<br />

surprising that in spite of the proximity of clinics to the hospital (no more than a ten minute<br />

drive) <strong>and</strong> the availability of telephones <strong>and</strong> faxes, the turn around time for an ELISA test at the<br />

clinics is between two <strong>and</strong> four weeks.<br />

PCR tests are done on infants at 14 weeks in the Western Cape to determine the infants are<br />

infected with HIV. Blood for these tests is drawn at the clinics <strong>and</strong> specimens are sent to the<br />

local laboratory. The turn around time for a PCR test is between one <strong>and</strong> three weeks.<br />

12. RECOMMENDATIONS<br />

• A number of clinic sisters felt that the children on the programme deteriorate considerably<br />

when infant formula is no longer supplied after six months. Their recommendation was that<br />

the infant formula be supplied for a year.<br />

• The uncertainty around AGAPE <strong>and</strong> the lay counsellors should be resolved by renewing<br />

the contract <strong>and</strong> in future, renewing the contract timeously.<br />

• Professional nurses should be trained in VCT.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 72


DATA FROM PMTCT REGISTER<br />

Page<br />

Number<br />

TOTALS<br />

Transferin<br />

during<br />

labour<br />

On<br />

HAART<br />

FOR CLIENTS ON DUAL THERAPY<br />

ONLY (NOT HAART)<br />

Adequate<br />

AZT<br />

Antenatally<br />

(>2wks)<br />

Received<br />

NVP in<br />

labour<br />

Yes No Yes No<br />

AZT given<br />

in Labour<br />

Ward<br />

Live<br />

Birth<br />

Delivery Outcome<br />

Stillbirth<br />

BBA<br />

T/O in<br />

Labour<br />

Medication for Baby<br />

NVP<br />

Given<br />

AZT<br />

Given<br />

AZT<br />

TTO<br />

Feeding Choice on<br />

Discharge<br />

Column 1 5 6 7 8 9 10 16 17 18 19 20 21 22 23 24 25<br />

JAN 20 0 0 0 0 17 3 0 19 0 1 0 20 0 0 17 3<br />

FEB 29 0 0 0 0 27 2 0 27 0 2 0 29 0 0 21 8<br />

MAR 36 0 0 0 0 36 0 0 36 0 0 0 36 0 0 29 7<br />

TOTAL 85 0 0 0 0 80 5 0 82 0 3 0 85 0 0 67 18<br />

APR 30 0 0 4 26 24 6 22 26 0 4 0 26 26 26 27 3<br />

MAY 27 0 0 24 3 24 3 26 26 0 1 0 27 27 27 21 6<br />

JUN 27 0 0 26 1 26 1 26 28 0 0 0 28 28 28 21 7<br />

TOTAL 84 0 0 54 30 74 10 74 80 0 5 0 81 81 81 69 16<br />

JUL 20 0 0 17 3 17 3 18 20 0 0 0 20 20 20 16 4<br />

AUG 34 0 0 28 6 30 4 30 34 1 1 0 35 35 35 33 2<br />

SEP 22 0 1 16 5 18 3 17 20 0 2 0 22 22 22 16 6<br />

TOTAL 76 0 1 61 14 65 10 65 74 1 3 0 77 77 77 65 12<br />

OCT 25 0 0 10 15 19 6 10 24 0 1 0 25 25 25 19 6<br />

NOV 38 0 2 33 3 35 1 35 38 0 0 0 38 38 38 28 10<br />

DEC 32 0 1 23 8 21 10 23 31 1 1 0 32 32 32 28 4<br />

TOTAL 95 0 3 66 26 75 17 68 93 1 2 0 95 95 95 75 20<br />

TOTALS 340 0 4 132 70 294 42 207 329 2 13 0 338 253 253 276 66<br />

Formula<br />

Breast<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 73


APPENDIX B4: FACILITY SUB-STUDY REPORT: RIETVLEI<br />

1. DISTRICT OVERVIEW<br />

Rietvlei Hospital was identified as one of the pilot sites for the PMTCT programme. The<br />

programme was started at Rietvlei Hospital in early 2001. Responsibility for the<br />

implementation of the programme has been the responsibility of both the Provincial <strong>Maternal</strong><br />

<strong>and</strong> Child Health <strong>and</strong> the HIV/AIDs directorates. Umzimkhulu is one of the three sub-districts<br />

of Alfred Nzo district. In Umzimkhulu all services fall under the auspices of the Eastern Cape<br />

Provincial Health Department.<br />

Implementation of the programme within Umzimkhulu has been the joint responsibility of<br />

Rietvlei Hospital <strong>and</strong> the Umzimkhulu sub-district health office. Although the district office was<br />

responsible for the implementation of the programme at the fourteen PHC clinics in the area,<br />

Rietvlei Hospital has taken a leading role in the training <strong>and</strong> coordination of the programme.<br />

This investigation into the PMTCT programme within facilities in the Umzimkhulu sub-district<br />

was undertaken on three days early in March 2005.<br />

2. VCT<br />

2.1. Lay counsellors<br />

Five volunteers were attached to each clinic <strong>and</strong> the hospital. Most volunteers were trained in<br />

VCT. Those not trained received VCT training in early March 2005. The training was provided<br />

by PHC nurses within Umzimkhulu who have been identified <strong>and</strong> trained as VCT trainers. The<br />

training was two weeks long. The volunteers were supposed to be supported <strong>and</strong> monitored in<br />

their work by the clinic sisters at each clinic. However this does not happen.<br />

In addition to being counsellors a couple of volunteers at each facility were also trained as<br />

“Personal Sellers.” The personal sellers were trained by the South African Nurse Tutorial<br />

Services (SANTS). The training course was five days long <strong>and</strong> focused on HIV/AIDS<br />

education in the community. The personal sellers are expected to talk about HIV/AIDS in the<br />

community, promote VCT <strong>and</strong> encourage community members to access HIV/AIDS services<br />

via VCT. The Umzimkhulu HIV/AIDS Coordinator is expected to monitor the work of the<br />

personal sellers. Given her other responsibilities, she feels that she is unable to do this<br />

adequately. She expressed concern about the work of the personal sellers as the number of<br />

people accessing VCT services at the clinics had not increased since they started promoting<br />

VCT in the community. She felt that the training of the personal sellers could have been better.<br />

The volunteers are paid R500 a month. Their wages are from the Eastern Cape Department of<br />

Health channeled through the District Municipality. They were paid for six months work in<br />

2003, but have not been payed since then. Attempts have been made in the last month to<br />

address the problem, but administrative problems continue to plague the process of<br />

remuneration. Cheques made out to the volunteers could not be cashed as incorrect names<br />

were written on the cheques.<br />

Pre-test counselling was done exclusively by the volunteers. At some of the clinics <strong>and</strong> the<br />

hospital the volunteers also do the post-test counseling. The focus of the volunteers work was<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 74


counseling <strong>and</strong> not ongoing support of people on PMTCT or ARV services. (The ARV<br />

programme only started recently in the district. It has not yet been rolled out to the clinics). All<br />

volunteers worked daily from Mondays to Fridays. At the hospital they work from 8.00 to 16.00.<br />

At some of the clinics they work from 8.00 to 13.00 <strong>and</strong> at others until later in the afternoon.<br />

Usually three volunteers remained at the clinic providing counseling services whilst the other<br />

two go out to the community to promote VCT.<br />

2.2. Nurses <strong>and</strong> VCT<br />

All clinic nurses are trained in VCT. The training on VCT was two weeks long <strong>and</strong> conducted<br />

by sub-district VCT trainers. This training included use of the Rapid Test Kit. Due to the<br />

constant rotation of staff, training for new staff is provided regularly. At the hospital, although a<br />

number of staff have been trained in VCT, they are scattered throughout the hospital, <strong>and</strong> at<br />

times no VCT trained staff are in the maternity ward.<br />

2.3 Testing<br />

At two of the clinics visited the staff were not clear about the protocol for testing patients. The<br />

Rapid Test Kits available at the clinics were First Response <strong>and</strong> Parasheek. The clinic which<br />

was clear about the protocol stated that they use the First Response test as the initial test <strong>and</strong><br />

Parasheek as the confirmatory test. If the results were discordant, blood was sent for an<br />

ELISA.<br />

In the middle of 2004 Abbott tests were replaced with Parasheek tests. No explanation or<br />

demonstration was provided to the HIV/AIDs coordinator or the clinic supervisors on how the<br />

Parasheek tests worked. As a result, clinics were not able to do confirmatory tests for a couple<br />

of months last year. According to one of the clinic supervisors Rapid Test Kits also ran out at<br />

other times during last year.<br />

Most of the staff have received some training on how to use the rapid test kits. This training<br />

was provided in one of the following ways:<br />

• It formed part of the VCT training<br />

• It was demonstrated by the regional head of the National Health Laboratory Services<br />

• It was demonstrated by a person from the Regional Training Centre in Umtata<br />

The quality of support received from the laboratory was perceived differently at the different<br />

clinics interviewed. At one of the clinics the turn around time for an ELISA test was said to be<br />

one week <strong>and</strong> that results for all tests sent were received. At another the turn around time was<br />

said to be a month <strong>and</strong> results for only half of the tests sent were received. The third clinic was<br />

a mixture of both responses.<br />

2.4. Testing of Patients<br />

According to the clinic staff the PMTCT programme was well integrated into the antenatal care<br />

programme <strong>and</strong> all women attending antenatal care were encouraged to have a VCT test.<br />

However according to maternity ward staff at the hospital, a number of women arriving in<br />

labour had attended ANC but were not aware of VCT or the PMTCT programme.<br />

Women who arrive at the labour ward are counselled <strong>and</strong> tested if not in active labour. Initially<br />

even those in active labour were counselled <strong>and</strong> tested, but this is no longer the case.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 75


3. POLICIES AND GUIDELINES<br />

Three of the four facilities were able to locate either the protocol or a h<strong>and</strong>out summarising the<br />

protocol with ease. In the Eastern Cape the age for testing children is one year. However, at<br />

two of the clinics, the knowledge of the protocol by the nurse interviewed was limited. For<br />

example, in the protocol the recommended dose of cotrimoxazole for infants is determined by<br />

weight <strong>and</strong> is given three times a week. However, two of the staff interviewed said the<br />

prescribed dose should be 5mls twice daily every day. However, it must be said, that at the<br />

clinics in Umzimkhulu, one person is in charge of PMTCT <strong>and</strong> at two of the clinics as this<br />

person was not present other staff were interviewed.<br />

4. REFERRALS<br />

4.1. Referrals from the clinics to the hospital<br />

All antenatal care services are conducted at the PHC clinics. According to clinic staff all ANC<br />

clients are informed about VCT <strong>and</strong> PMTCT services. For women who test positive the clinics<br />

mark the antenatal card with a code specific for each clinic or “RVD +ve”. Both codes used are<br />

known by the hospital <strong>and</strong> were agreed to at a quarterly PMTCT coordinating meeting between<br />

hospital <strong>and</strong> clinic staff. When nevirapine is given to a women, it is documented on the<br />

antenatal card. Hospital staff felt that this form of identification for referral purposes is sufficient<br />

<strong>and</strong> that they can identify women who have agreed to go on the PMTCT programme.<br />

4.2. Referrals from the hospital to clinic<br />

The hospital used two methods of referring patients back to the clinics. Firstly, letters are<br />

written to the clinic informing the staff that the mother was on the PMTCT programme <strong>and</strong> had<br />

been given nevirapine. Initially this letter was written in triplicate. The first copy was given to<br />

the mother, the second copy was sent to the district office <strong>and</strong> a third copy was kept in the<br />

ward. Now a single letter is written <strong>and</strong> given to the mother. Secondly, the outpatient <strong>and</strong><br />

Road to Health cards (RTHC) are marked with a code <strong>and</strong> nevirapine administered is<br />

documented.<br />

Although clinic staff felt that the referral system from the hospital to the clinic functioned, the<br />

hospital staff were not as confident. Two concerns with the referral of women to the clinics<br />

were expressed:<br />

• At times clinic staff are not given referral letters. Maternity staff see mothers still holding<br />

onto the letter when they come back to the hospital outpatients department with ill children.<br />

• At times the code written by the hospital staff on the RTHC is scratched out.<br />

4.3. Tests for One Year Old Infants<br />

According to the protocol one year old infants on the PMTCT programme are supposed to have<br />

a rapid test to determine their HIV status. Infants are referred to the hospital for this test. It<br />

was not clear why children are referred to the hospital for this test <strong>and</strong> it is not done at the<br />

clinic. A number of the staff interviewed expressed concern as to why children were referred to<br />

the hospital for this test. Each of the three clinics visited expressed frustration that the hospital<br />

does not give them feedback on the results of these tests <strong>and</strong> that the only source of feedback<br />

they have is the mothers themselves. Considerable effort <strong>and</strong> time on the part of the<br />

researcher was necessary to try <strong>and</strong> trace the results of the rapid tests done on infants at one<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 76


year. It has not been possible to locate this information even with the assistance of the<br />

regional head of laboratory services in the area.<br />

5. SERVICE INTEGRATION<br />

5.1 ANC <strong>and</strong> Child Health Services<br />

Clinic staff felt confident that the PMTCT programme is completely integrated into ANC<br />

services. The hospital staff were not as confident that this is the case. The district office staff<br />

claimed that PMTCT is fully integrated into child health services. Given the short time available<br />

for this sub-study, it was not possible to gauge the extent of this integration.<br />

5.2. ART Services<br />

The ART programme has been operational at Rietvlei Hospital since December. Thirty two<br />

patients so far have been enrolled on treatment. There was little integration between the ART<br />

<strong>and</strong> PMTCT programmes. The sister in charge of the ART clinic felt that the referrals from the<br />

clinics are very slow, as are the referrals from the maternity ward. She had been to the<br />

maternity ward to encourage the staff to refer PMTCT clients to the ARV clinic. However, at<br />

the time that the research was conducted, there were no PMTCT clients on ARVs.<br />

6. RECORDING, MONITORING AND EVALUATION<br />

6.1 Hospital<br />

Initially in the maternity ward there was a separate register for clients on the PMTCT<br />

programme. However, to increase confidentiality it was decided that PMTCT clients should not<br />

be recorded in a separate book. They should be recorded in the maternity register with all<br />

other deliveries. A red dot is used to identify PMTCT clients. In my opinion it is very easy to<br />

identify PMCT clients in the maternity register <strong>and</strong> the system is not confidential.<br />

No information on the PMTCT programme is submitted to the Sub-District Information Officer<br />

by the hospital. However, on a monthly basis the maternity ward submits data on the PMTCT<br />

programme to the Provincial <strong>Maternal</strong> <strong>and</strong> Child Health Directorate. This data includes six HIV<br />

related data elements:<br />

• Number of HIV results available on admission for delivery<br />

• Number of HIV tests done in the maternity ward<br />

• Number of women refusing to have an HIV test<br />

• Number of nevirapine doses given to women in labour<br />

• Number of live births to HIV positive women<br />

• Number of nevirapine doses to babies born to HIV positive women<br />

6.2. Clinics<br />

Monthly the clinics submit data on a number of data elements related to the PMTCT<br />

programme to the sub-district Information Officer at the Umzimkhulu Sub-District Office. These<br />

include:<br />

• Number of pregnant women tested for HIV<br />

• Number of pregnant women tested HIV positive<br />

• Number of pregnant women tested HIV positive reported taking NVP<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 77


• Number of pregnant women tested HIV positive who received NVP<br />

• Number of pregnant women tested HIV positive whose infants got NVP<br />

• Infants of HIV positive NVP women receiving infant formula<br />

• Infants of HIV positive NVP women with exclusive breastfeeding<br />

• Infants of HIV positive NVP women HIV tested<br />

• Infants of HIV positive NVP women tested HIV positive<br />

• Cotrimoxazole eligible clients started – new<br />

• Cotrimoxazole receivers this month - total<br />

The Umzimkhulu HIV/AIDs director does not feel the figures are accurate, reliable or useful in<br />

any way. Numerous attempts were made to get this data from the sub-district information<br />

officer, to no avail. She was either out of the office or not in a position to assist me.<br />

6.3. Feedback<br />

Neither the hospital or clinic receive feedback or evaluation of the progress of the PMTCT<br />

programme at their facilities or within the Umzimkhulu sub-district. There is no information<br />

available on the outcome of the PMTCT programme in Umzimkhulu.<br />

7. COORDINATION, SUPPORT AND SUPERVISION<br />

When initiated as a pilot project, a coordinating committee for PMTCT in Umzimkhulu was set<br />

up. This committee comprised hospital, clinic <strong>and</strong> district office representatives <strong>and</strong> dealt with<br />

a number of issues such as setting up referral systems. However, this committee last met in<br />

October 2003, six months ago.<br />

When Rietvlei was first set up as a pilot project provincial support was provided. “The<br />

provincial PMTCT coordinator used to run in <strong>and</strong> out – not often – but she did come”. For over<br />

a year though, the district has had no PMTCT support visits from the province.<br />

At Rietvlei Hospital support <strong>and</strong> supervision of the PMTCT programme is provided by the<br />

matron in charge of maternity. In the rest of the Umzimkhulu sub-district from early 2001 to<br />

June 2004, the programme fell under the sub-district MCWH coordinator. However, since her<br />

appointment in June 2004, the sub-district HIV/AIDs coordinator has increasingly taken over<br />

responsibility for the programme. She continues to be supported by the MCWH coordinator.<br />

According to the Umzimkhulu MCWH coordinator, it is better that the PMTCT programme falls<br />

under the HIV/AIDS Coordinator, as she has direct access to the provincial HIV/AIDS<br />

directorate. The Umzimkhulu HIV/AIDS Coordinator attends quarterly HIV/AIDS directorate<br />

meetings where problems with the PMTCT programme are resolved more quickly than in the<br />

past.<br />

The Umzimkhulu HIV/AIDS Coordinator feels that she provides support to clinics by visiting<br />

them to discuss all HIV related services including PMTCT. She has visited four clinics in the<br />

last quarter. However none of the three clinics visited felt supported. The one clinic was last<br />

visited by the HIV/AIDS Coordinator eight months ago <strong>and</strong> the last time they got a support visit<br />

specifically for the PMTCT programme was 2003. The second clinic said they never get<br />

support visits. “We only get visits from people wanting information.”<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 78


8. HUMAN RESOURCES<br />

When the PMTCT programme was started as a pilot programme, staff were provided with both<br />

orientation <strong>and</strong> training. The matron in charge of maternity attended a week at the UWC winter<br />

school conducted by Prof. Besser. On returning to Rietvlei Hospital, she passed on the<br />

information to other staff in the maternity ward <strong>and</strong> the sub-district.<br />

All the clinic staff interviewed had attended a three day training course on the PMTCT<br />

programme run by the Umzimkhulu PMTCT trainer who is stationed at the hospital. At this<br />

training course they received a h<strong>and</strong>out summarising the protocol. In addition they had all<br />

attended a training two week training course on VCT which included use of the rapid test kit.<br />

Both the hospital <strong>and</strong> sub-district office staff interviewed mentioned that a rapid turn over of<br />

staff limited the success of the programme. No sooner were all staff trained than another<br />

professional nurse left <strong>and</strong> was replaced by someone needing training in both VCT <strong>and</strong><br />

PMTCT. Training in PMTCT <strong>and</strong> VCT was ongoing but difficult given the staff shortages within<br />

Umzimkhulu. The following problems arise when training is planned:<br />

• The PMTCT trainer is from the hospital. If she conducts training there is often no one left<br />

in the maternity ward who knows about the PMTCT programme.<br />

• Staff from the hospital cannot be sent on the training as there is a shortage of staff in the<br />

wards.<br />

• Clinics may have to close for the duration of the course as there are no additional staff to<br />

relieve staff who are being trained.<br />

9. PHARMACEUTICAL SERVICES<br />

9.1. Supply of Drugs<br />

Nevirapine<br />

The hospital had never run out of either nevirapine tablets or syrup. According to the national<br />

protocol (Version 5, 23 May 2001) clinics should be supplied with both nevirapine tablets <strong>and</strong><br />

syrup. However, the clinics in Umzimkhulu had never been supplied with nevirapine syrup for<br />

two reasons:<br />

• They do not routinely do deliveries.<br />

• Nevirapine is only supplied in big bottles, most of which would expire before use if<br />

distributed to individual clinics.<br />

Women in the sub-district who were on the PMTCT programme, who had not delivered in the<br />

hospital, were expected to travel to the hospital to get nevirapine syrup for their babies. This in<br />

my opinion is not an acceptable practice. Women deliver at home usually as a result of<br />

transport problems. To expect a woman who has just delivered to pay up to R60 to travel to<br />

the hospital for nevirapine syrup is unrealistic. In the community it is now acceptable practice<br />

for women who have just delivered to take their babies to the clinics for immunisations. If the<br />

clinics were stocked with nevirapine syrup, women on the PMTCT programme could be<br />

encouraged to take their children to the clinics within 72 hours of delivery to ensure that their<br />

babies can get nevirapine syrup.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 79


The lack of initiative <strong>and</strong> application by the district pharmacist is discouraging. To avoid<br />

possible wastage of nevirapine syrup at the clinics, the syrup could easily be decanted into<br />

smaller bottles of one or two doses for distribution to the clinics.<br />

Problems with the supply of nevirapine tablets to the clinics was a frustration mentioned by all<br />

staff interviewed. Two of the clinics said that they had not had nevirapine tablets in stock for a<br />

year, in spite of asking for these on numerous occasions. According to the Umzimkhulu<br />

HIV/AIDS Coordinator the pharmacist has two reasons for not providing nevirapine tablets to<br />

the clinics. Firstly as the tablets issued had expired at a number of clinics he thought, that<br />

should he issue more, these too will expire. Secondly, he wanted to design a recording system<br />

for the dispensing of nevirapine.<br />

The HIV/AIDS Coordinator was extremely frustrated with the pharmacist who she found<br />

inflexible <strong>and</strong> “he moves sooooo (sic) slow”. Although she had taken this up with the subdistrict<br />

manager, the issue was still unresolved. Every person interviewed recommended a<br />

small regular supply of nevirapine as essential for improving the PMTCT programme in the<br />

sub-district.<br />

Cotrimoxazole<br />

Neither the hospital nor clinics had ever been short of cotrimoxazole. On discharge from the<br />

hospital, mothers on the PMTCT programme were given a month’s supply of cotrimoxazole for<br />

their babies. The clinics also supplied cotrimoxazole for these infants on a regular basis.<br />

However two of the clinics did not know the correct dosages for cotrimoxazole for babies on the<br />

PMTCT programme. They both reported that they would prescribe co-trimaxozole 5mls twice a<br />

day although the protocol recommends cotrimoxazole 5mls three times a week on a Monday,<br />

Wednesday <strong>and</strong> Friday.<br />

9.2. Drug Management<br />

Within the hospital both the nevirapine tablets <strong>and</strong> syrup were kept in the schedule 6 <strong>and</strong> 7<br />

drug cupboard. The dispensing of these drugs was recorded in the schedule 6 <strong>and</strong> 7 drug<br />

register.<br />

All clinics reported that they recorded the dispensing of both nevirapine tablets <strong>and</strong><br />

cotrimoxazole. One clinic had a separate register for both drugs. The second clinic used to<br />

have a register for nevirapine “but it is lost as we haven’t had to use if for long (sic).” They<br />

recorded the dispensing of cotrimoxazole in the tick register. At the third clinic both drugs<br />

dispensed were recorded in the tick register.<br />

10. NUTRITIONAL SUPPLEMENTATION<br />

In the Eastern Cape the policy is that infant formula is provided for a year to children on the<br />

PMTCT programme. The disruption to supplies of infant formula was expressed by everyone<br />

interviewed as a major problem. Within the last twelve months (February 2004 to February<br />

2005) infant formula was unavailable for a number of months at each clinic. By checking the<br />

register where the dispensing of tins is recorded it was possible to determine that at the first<br />

clinic infant formula had been unavailable for five months. At the second clinic it had been<br />

unavailable for six months <strong>and</strong> at the third clinic it had been unavailable for eight months.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 80


Each clinic had a register in which the number of tins given to each client on the PMTCT<br />

programme was documented. At one of the clinics, since August last year, only four tins of<br />

formula were given to each client instead of the recommended eight tins. When asked why this<br />

was done, the sister interviewed said it was because there was a backlog <strong>and</strong> so many clients<br />

needed formula after the last period of not having had formula available.<br />

The disrupted supply of infant formula was of great concern to all those interviewed. In further<br />

discussion around the problem, staff mentioned that the problem was further confounded by<br />

the unavailability of pelargon at local stores in the area for the last few months.<br />

According to the HIV/AIDS Coordinator the problem with the supply of infant formula occurred<br />

at a provincial level <strong>and</strong> had arisen due to problems around the renewal of the contract.<br />

In my opinion this is a major problem which must be addressed as a matter of urgency. The<br />

health department is behaving irresponsibly <strong>and</strong> unethically by persuading mothers to formula<br />

feed by giving them infant formula <strong>and</strong> promising to provide this for up to one year. However<br />

not only are mothers unable to get more milk from the clinics, but they cannot even buy it at the<br />

shops.<br />

Two of the clinics mentioned that mothers who agreed to exclusively formula feed had often<br />

started to mix feeds on returning home from the hospital. In addition mothers who agreed to<br />

exclusively breast feed had been unable to stop breast feeding at three months without mixing<br />

feeds at this time. They was done to minimize suspicions from family members who assumed<br />

the sudden cessation of breast feeding was because the mother was HIV-positive.<br />

11. LABORATORY SERVICES<br />

Those interviewed at the hospital felt satisfied with the laboratory services. The turn around<br />

time at the hospital for ELISA tests is a couple of days. The opinion of the clinics regarding the<br />

support of the laboratory services was less positive. The turn around time varied from one to<br />

three weeks at the different clinics interviewed. In addition frustration was expressed about<br />

specimens which were sent in December <strong>and</strong> January to the laboratory, but no results were<br />

ever received. On discussion with the Umzimkhulu TB coordinator it appears that the turn<br />

around time does vary as the laboratory is short staffed. The problems experienced over<br />

December <strong>and</strong> January were as a result of this.<br />

12. RECOMMENDATIONS<br />

12.1 Pharmaceutical Services<br />

• Nevirapine tablets should be available at all clinics all the time.<br />

• Clinics should keep small quantities of nevirapine syrup to administer to newborns on the<br />

PMTCT programme who are born at home.<br />

• A recording system to monitor the dispensing of both nevirapine tablets <strong>and</strong> syrup should<br />

be developed <strong>and</strong> introduced to all clinics.<br />

• Clarification on the recommended doses of cotrimoxazole for infants on the PMTCT<br />

programme is necessary for clinic staff.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 81


Nutritional Supplementation<br />

• Infant formula should be available at all clinics all the time.<br />

• The message regarding feeding options should be clarified <strong>and</strong> simplified.<br />

VCT<br />

• Rapid test kits <strong>and</strong> confirmatory tests should be available at all clinics all the time.<br />

Referral System<br />

• Links between the hospital <strong>and</strong> clinics need to be strengthened.<br />

• The referral system must be tightened to reduce the number of patients who get lost.<br />

Follow Up at One Year<br />

• Infants of one year old should be tested at their clinic <strong>and</strong> not referred to the hospital. This<br />

would facilitate the follow up of children on the programme. In addition it would make it<br />

possible to measure more effectively the outcome of the programme.<br />

Clinic Services<br />

• The PMTCT programme should be more actively promoted at a clinic level, so that all<br />

mothers attending antenatal care are educated fully about the PMTCT programme.<br />

Coordination of the Programme (My suggestion)<br />

• To implement the recommendations of the staff which are listed above, quarterly<br />

coordination meetings should be instituted.<br />

DATA AVAILABLE FROM RIETVLEI HOSPITAL – March to September 2003<br />

Number of live births born Nevirapine given to<br />

mothers<br />

Nevirapine given to<br />

babies<br />

March 174 24 25<br />

April 172 27 33<br />

May 178 14 22<br />

June 209 20 30<br />

July 212 15 29<br />

August 171 10 20<br />

September 276 23 14<br />

Total 1392 133 173<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 82


APPENDIX B5: FACILITY SUB-STUDY REPORT:<br />

SUMMARY<br />

THEMES PAARL RIETVLEI<br />

VCT Lay Counsellors<br />

Lay Counsellors<br />

• Lay counsellors trained by a private psychologist for a month.<br />

• Lay counsellors trained for two weeks by VCT trainers from the sub-district.<br />

• Counsellors supported, supervised <strong>and</strong> monitored by an NGO. They work<br />

part-time only (usually only in the mornings).<br />

• Five lay counsellors are attached to each facility to provide counseling from<br />

8.00 – 16.00 on weekdays.<br />

• Once a month they have a debriefing session with a psychologist. • Lay counsellors supposed to be supported, supervised <strong>and</strong> monitored by<br />

• Two weeks before the start of the new financial year, funding of the NGO<br />

had not been confirmed by PAWC.<br />

the clinic sisters, but they have never been told how or what to supervise,<br />

support or monitor.<br />

• Remuneration is through the District Municipality, but has been problematic.<br />

The counsellors were last paid in 2003.<br />

• Personal sellers have recently started work. They promote VCT in the<br />

community. The sub-district HIV/AIDS Coordinator is to supervise <strong>and</strong><br />

monitor their work, but she is usually unavailable.<br />

Professional Nurses<br />

• PNs are not routinely trained in VCT.<br />

Testing using Rapid Test Kits:<br />

Tests Used<br />

Hospital: 1 st test = Abbott Clinic: 1 st test = Determine<br />

2 nd test = Parasheek 2 nd test = Parasheek<br />

Confirm = Elisa Confirm = Elisa<br />

Turn Around Time for an Elisa<br />

• Hospital: 1 – 2 days<br />

Professional Nurses<br />

• All PNs are trained in VCT. However, staff turnover is a problem. No<br />

sooner are all staff trained than someone leaves <strong>and</strong> more training has to be<br />

organized.<br />

• In the hospital a number of staff in the maternity ward have been trained, but<br />

due to staff rotation there can be times when no one in the maternity ward<br />

has VCT training.<br />

• As part of the VCT training staff are trained how to use rapid test kits.<br />

Additional training on the use of rapid test kits has been done.<br />

Testing:<br />

Tests Used<br />

Hospital: Not sure Clinic: 1 st test = 1 st Response<br />

2 nd test = Parasheek<br />

Confirm = Elisa<br />

Turn Around Time for an Elisa<br />

• Hospital: 1 – 2 days<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 83


THEMES PAARL RIETVLEI<br />

• Clinics: 2 – 4 weeks<br />

VCT<br />

VCT<br />

POLICIES<br />

AND<br />

GUIDELINES<br />

REFERRAL<br />

PATHWAY<br />

Stock outs of Rapid Test Kits<br />

• Never<br />

Patients in the Maternity Ward<br />

• All patients who have attended ANC have been told about the PMTCT<br />

programme. Those that agree to go on the programme have had VCT.<br />

• At all facilities the revised edition of the protocol in the Western Cape could<br />

be located by the staff.<br />

• All hospital staff were aware of the changes to the protocol since the<br />

introduction of the HAART programme.<br />

• The integration of the HAART <strong>and</strong> PMTCT programmes was a major<br />

concern to hospital staff as many patients do not arrive at the maternity<br />

ward with their ART tick sheet available, so that their adherence to ART<br />

treatment is unclear.<br />

• Although the clinic staff had the revised edition of the protocols none of<br />

them were aware of the changes since HAART began.<br />

• The referral pathway is complicated:<br />

- Pregnant women are all referred from their local clinic to TC Newman<br />

Hospital for ANC.<br />

- After delivery patients are discharged <strong>and</strong> have to go to the post-natal<br />

ward at TC Newman Hospital. PMTCT clients are referred from here to<br />

the “gynae ward” at TC Newman <strong>and</strong> eventually are referred to their<br />

local clinic<br />

• Transferring information between the hospital <strong>and</strong> clinics is both effective<br />

<strong>and</strong> efficient:<br />

- Small stickers or pieces of paper with all relevant information are<br />

• Clinics: 2 weeks<br />

• However, over December <strong>and</strong> January due to shortage of staff in the lab,<br />

the TAT was over a month.<br />

• Results for some tests “get lost”<br />

Stock outs of Rapid Test Kits<br />

• Have had stock outs of rapid test kits.<br />

• Last year when Parasheek test kits were brought in to replace the Abbott<br />

ones, no one taught the staff what to do, so no 2 nd tests were done for a<br />

couple of months.<br />

Patients in the Maternity Ward<br />

• Staff in the maternity ward say that many of the women who have attended<br />

ANC in the sub-district have not been told about the PMTCT programme or<br />

had VCT.<br />

• At all facilities a protocol or summarised version of the protocol could be<br />

located by the staff.<br />

• At two clinics staff did not know the correct dosage of cotrimoxazole which<br />

should be given to infants prophylactically.<br />

• The referral pathway is simple from the local clinic to the hospital for the<br />

delivery <strong>and</strong> then back to the local clinic.<br />

• Transferring information is less effective:<br />

- In referring pregnant women from the clinic to the hospital, ANC cards<br />

are marked with a code which identifies from which clinic the woman<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 84


THEMES PAARL RIETVLEI<br />

attached by the clinic staff to the ANC card for the information of the<br />

comes. This appears to work relatively well.<br />

maternity ward staff.<br />

- In referring children on the programme back to the clinic, RTHCs are<br />

- Similarly small stickers or pieces of paper with all relevant information<br />

are attached by the maternity ward staff to the RTHC <strong>and</strong> ANC card for<br />

the information of the clinic staff.<br />

marked with a code <strong>and</strong> a referral letter is written. However, no<br />

duplicate of this letter is kept so the referral relies on the patient. Often<br />

maternity ward staff see mothers returning to the hospital with sick<br />

children with this letter. Staff fear that stigma in the community<br />

contributes to mothers not taking their children back to the clinics.<br />

• Infants at one year are referred back to the hospital for a rapid test kit to<br />

determine whether they are HIV positive or not. No one could explain why<br />

this test is not done at a clinic level.<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 85


THEME PAARL RIETVLEI<br />

ROUTINE<br />

MONITORING AND<br />

EVALUATION<br />

HUMAN<br />

RESOURCES<br />

CO-ORDINATION,<br />

SUPPORT,<br />

SUPERVISION<br />

PHARMACEUTICAL<br />

SERVICES<br />

NUTRITIONAL<br />

SUPPLEMENTATION<br />

LABORATORY<br />

SERVICES<br />

• No information on transmission rate to children at 14 weeks<br />

• 86% of women delivering at hospital receive nevirapine<br />

• 99% of newborns administerd nevirapine<br />

• 100% of newborns given AZT since April 2004<br />

• 82% of women opting to formula feed<br />

• Hospital staff very knowledgeable about PMTCT programme.<br />

• All clinic staff were newly rotated at the time of the investigation so<br />

they were new to the PMTCT programme <strong>and</strong> have not received any<br />

training about the programme.<br />

• Clinic staff appear to “specialize” <strong>and</strong> the person allocated to<br />

PMTCT becomes an expert whilst others know very little about the<br />

programme.<br />

• No bimonthly PMTCT coordinating meeting held for five months.<br />

Meeting scheduled with agenda set for week after investigation<br />

• Newly appointed District HIV/STI/TB Coordinator <strong>and</strong> two PMTCT<br />

support staff (one in the hospital) have not received any training on<br />

PMTCT.<br />

• Supervision <strong>and</strong> support at facilities has been lacking over the last<br />

few months due to the replacement of the previous coordinator.<br />

• There has never been a shortage of a nevirapine or cotrimoxazole<br />

• Nevirapine tablets are not stocked at the clinics anymore<br />

• Is supplied to infants on the programme for 6 months<br />

• Never a shortage<br />

• Staff satisfied with quality<br />

• TAT for an ELISA 2 – 4 weeks<br />

• TAT for a PCR 1 – 3 weeks<br />

• No information on transmission rate to children at 12 months<br />

• 10% of women who delivered at Rietvlei hospital receive nevirapine<br />

• 12 % of newborns born at Rietvlei administered nevirapine<br />

• No other data available<br />

• Considerable training <strong>and</strong> support was provided when Rietvlei was launched<br />

as a pilot site. Provincial support has since dried up.<br />

• Training is provided regularly by the PMTCT trainer of the sub-district due to<br />

the rapid turnover of staff. This is however, very disruptive of services both<br />

in the maternity ward <strong>and</strong> in the clinics.<br />

• Clinic staff appear to “specialise” <strong>and</strong> the person allocated to PMTCT<br />

becomes an expert whilst others know very little about the programme.<br />

• PMTCT programme falling under HIV/AIDS directorate.<br />

• No support for PMTCT provided to clinics.<br />

• PMTCT coordinating meeting not held for 6 months. Present coordinator<br />

about to leave. A replacement has been identified.<br />

• No nevirapine tablets at clinics for a year<br />

• Nevirapine syrup has never been supplied to clinics (bottle is too big)<br />

• Is supplied to infants for 12 months.<br />

• Shortage last year for up to 8 months.<br />

• One clinic supplying 4 instead of the recommended 8 tins.<br />

• Staff not satisfied with quality<br />

• TAT 1 – 3 weeks<br />

• TAT over December a month <strong>and</strong> results got lost due to a shortage of staff<br />

in the lab<br />

Community Based Situation Analysis: <strong>Maternal</strong> & Neonatal Follow-up Care 86

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