Walking the Talk - VSO

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parents have every support necessary to realise girls’rights to education. This has been accomplished in someareas through the provision of cash transfers andpensions for families affected by HIV and AIDS. 207 Ifnecessary, these social protection interventions caninclude positive conditions so that families can claimfinancial support to allow their daughters to stay in school.Both primary and secondary care providers areincreasingly denied their right to recreation and leisuretime because of the overwhelming care responsibilitiesthey face. The intense time, financial and mentalcommitment of providing care also mean that careproviders often lose their right to participate incommunity activities or decision-making platforms. Thisis often exacerbated by the discrimination that careproviders face from some members of society, eitherbecause they are living with HIV and AIDS or becausethey are caring for someone else living with the illness.As highlighted in Chapter 2, women and girls’ politicalparticipation is crucial to improving health systems. Asmentioned earlier, the regulation of work performed bycare providers, including limits on the number ofpatients they support in a day and the numbers ofhours they work, would go a long way to ensure careproviders’ right to leisure and recreation. This wouldalso allow time for care providers to play a more visiblerole in community life, perhaps creating moreopportunity to break down stigma and discrimination.The physical and psychological impact ofproviding careIn addition to, and partly as a result of, the costs ofproviding care outlined above, women care providersexperience a wide range of psychological impacts fromtheir work that violate their right to favourableconditions of work. Caring for and then watching largenumbers of people die from AIDS-related illnessespushes most care providers to the extremes ofemotion, stress and depression. A care provider inSouth Africa recently explained the psychologicalimpact providing care can have:“I feel like a balloon, I am full of air in the morning andas the day goes by, the air disappears little by littleuntil what’s left is a crumpled piece of rubber.” 208This is a stark image of what is happening to individualcare providers in countries with high HIV and AIDSprevalence, where care providers have little or noaccess to counselling, support or training. In Lesotho,for example, 90% of community care providers arereported to be clinically depressed. 209 In the absence ofany external psychological support, care providers inSouth Africa report that they are talking to each other insupport groups and sharing experiences in order tocope. 210 Much more work needs to be done to providespecific counselling and psychosocial sessions for careproviders. Governments, specifically, must introduce orrevive mental health programmes at the primary carelevel to help community care providers deal with thepsychological stress of providing care.The scant training received by care providers exacerbatestheir stress. As noted before, lack of training can affect acare provider’s ability to claim a stipend (as is the case inSouth Africa), but it also significantly affects the standardof care received by the sick. Furthermore, it may placethe care provider herself at risk. Care providers cannotoperate effectively and safely if they are not well trained, ifthey are not properly supervised and mentored, and ifthey are not embedded within referral systems that allowthem to help people they are caring for get access socialand medical services. Although it is beyond the scope ofthis paper to detail the specific components of training, 211supervision and referral systems, it is absolutely essentialto clarify that the absence of such support will decreasethe quality of care provided, demoralise care providers,and lead to turnover and unsustainability.Most government training for care providers is basednear urban centres and frequently costs more moneyand time than a care provider or even a CBO canafford. There is sometimes peer-to-peer training amongsecondary care providers. However, this occurs lessoften with primary care providers, especially girls, whoseldom have access to support groups or other careproviders. Home-based care organisations have a dutyto ensure regular training on home-based care for allstaff by an accredited trainer. Care providers shouldhave full access to information on vertical transmission,post-exposure prophylaxis, adherence and treatmentliteracy. This training should also be targeted at primarycare providers by building secondary care providers’skills to provide outreach training to primary careproviders. For example, in Ahitipaluxene inMozambique, the carers receive on-the-job training fromthe nurse who works with them. Those who havereceived training mentioned that they feel moreappreciated and have greater confidence whileperforming their work duties:“It [the training] was very important. That iswhy I say that it is forbidden to forget whatwe learnt.” 212Even when care providers manage to acquire propertraining, their work is often physically dangerous46 Walking the talk putting women's rights at the heart of the HIV and AIDS response
ecause they do not have access to the equipmentthey need, such as home-based care kits. InMozambique, home-based care kits cost 2,000meticais each (US$78) – more than care providers earnin a month. 213 In Ethiopia, around 70% of respondentsin a recent study said that they do not receive a full kitfrom their associations and have to replace essentialitems such as soap and painkillers themselves. 214 Basicequipment such as gloves and home-based kitsincluding soap, detergent, disinfectants and antisepticsetc are essential and should be provided by thegovernment. Secondary care providers would alsobenefit from having a work uniform. Not only would thisenhance perceptions of their work as a profession, butit would increase their recognition and standing amonghospital staff.The stigma of HIV and AIDS also adds considerablestress to care providers, whether or not they themselvesare living with HIV and AIDS. Care providers sometimeshave to provide care to a patient secretly, so as not toexpose the patient to discrimination. Other careproviders report being isolated by their communities andcreating, in response, their own ‘families’ of careproviders and people living with HIV and AIDS. Societywidecampaigns to tackle stigma may tackle theproblem in the long-term but governments, donors andNGOs should also seek to develop or build the capacityof care providers’ associations and support groups,which create important peer support for care providers.It is amazing that despite these incredible levels ofstress and psychological trauma associated with caring,women care providers seem to be able to carry on.South African care givers, some of the few who doreceive a stipend for their work, report that there arethree things that help to keep them going:“One, despite being a very stressful job, caregiving gives them the satisfaction of being ableto help those in need. Second, it gives themsome form of financial resource, howevermeagre the stipend is. Third, it gives them skillsand the opportunity to hone them throughcontinuous practice.” However, it is “the popularsaying, ‘wathinta abafazi, wathinta imbokodo’(you strike a woman, you strike a rock) thatcomes to mind as probably the simplestexplanation of how these women keep onproviding care despite the odds.” 215As this chapter has shown, women and girls facerepeated violations of their rights when trying to accesscare and support services, and as a result of their roleas care providers. Donors, governments, multilateralorganisations and civil society all have a role to play inredressing these violations.5.5. Recommendations Donor governments1) Donors should increase support to countrygovernments to introduce social protectionmeasures, financial support for primary careproviders and build the capacity of grassrootswomen’s organisations, support groups andnetworks of women living with HIV and AIDS todevelop income-generation initiatives, microcreditschemes, local employment and education/training opportunities for women and girls.2) Donors should increase capacity-building supportto organisations of women and girls living with HIVand AIDS to enable them to develop skills aroundmanagement, leadership, group dynamics, teambuilding, community mobilisation, advocacy andself-empowerment. Support should also be givento official bodies with a male bias to increasefemale membership and leadership within theirorganisations.Walking the talk putting women's rights at the heart of the HIV and AIDS response 47
Page 1 and 2: Walkingthe talkPutting women's righ
Page 3 and 4: ContentsContents 1Glossary 2Definit
Page 5 and 6: DefinitionsUniversal Universal acce
Page 7 and 8: Gideon Mendel/Corbis/ActionAidAdero
Page 9 and 10: Prevention, treatment and care and
Page 11 and 12: Gideon Mendel/Corbis/ActionAidStree
Page 13: Figure 1: Number of women and men l
Page 17 and 18: marriage, harassment or other socie
Page 19 and 20: childcare arrangements or to take t
Page 21 and 22: Multilateral organisations1) The Jo
Page 23 and 24: and testing. A few of the strategie
Page 25 and 26: Box 2. The Climbing to Manhood Proj
Page 27 and 28: some of the problems facing women a
Page 29 and 30: Box 3. The Gender Violence Recovery
Page 31 and 32: 3.5. Recommendations Donor governme
Page 33 and 34: non-discrimination. Failure to do s
Page 35 and 36: Box 4. The power of ART in Nigeria:
Page 37 and 38: 3) The Global Fund to Fight AIDS, T
Page 39 and 40: support. While their efforts suppor
Page 41 and 42: first point of contact for any illn
Page 43 and 44: ‘care provider’, rather than th
Page 45 and 46: In some circumstances, the cost of
Page 47: The stipends can also be hard to ac
Page 51 and 52: HIV rally, Nairobi, Kenya.Jess Hurd
Page 53 and 54: 2) The Global Fund to Fight AIDS, T
Page 55 and 56: 39Women’s rights and universal ac
Page 57 and 58: 114www.who.int/hiv/topics/prophylax
Page 59 and 60: 191USAID/UNICEF/UNAIDS/World FoodPr

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