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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report Overall satisfaction with disclosure, if parents told on more than one occasion The findings of the literature review suggested that parents could readily distinguish between their satisfaction or dissatisfaction with how they had been told of their child’s disability, and their feelings about the diagnosis itself. This concept was explored in the parent questionnaire through a second question on satisfaction levels, which asked parents how satisfied they had been with the disclosure of their child’s disability if told on more than one occasion. Variance from the previous satisfaction question would suggest that parents were judging their levels of satisfaction based on the various disclosure experiences that they had rather than their feelings about the diagnosis itself. Levels of reported overall satisfaction were higher for those who responded that they had received the diagnosis on more than one occasion, with 42.9% of those who answered this question being either ‘Satisfied’ or ‘Very Satisfied’. Levels of dissatisfaction were lower than those reported in the previous satisfaction question, with 13.5% of respondents indicating that they were either ‘Dissatisfied’ or ‘Very Dissatisfied’. The higher levels of satisfaction reported in this section may also indicate that there was better practice in place when the diagnosis came over time, but it is not possible from this data set to extrapolate what the contributing factors to this might be. Don’t Know 7.6% Figure 5.10 – Overall satisfaction of parents if told on more than one occasion Missing 19.6% Dissatisfied Very 9.2% Dissatisfied 4.3% Very Satisfied 10.3% Neither Satisfied nor Dissatisfied 16.3% Satisfied 32.6% 5.3 Professional Questionnaire Survey Results Response Rates As detailed in the methodology section of this report, 1588 questionnaires were sent to professionals in 27 disciplines identified through the parent questionnaire as being involved in either communicating the diagnosis of a child’s disability to the parents, or in supporting the family immediately after the diagnosis has been given. From the 1588 questionnaires sent to professionals 255 were returned. Although this represents a disappointing 16.1% response rate overall, the rate of response from each discipline varies, with those who are more usually involved in communicating the diagnosis or supporting families through this process answering more frequently. Paediatricians, which were the group most commonly mentioned by families as providing the news (reported at 37.6%) provided a 28.6% response rate to the professional questionnaire. Several other groups also demonstrated higher response rates, such as Social Workers (58%), Speech and Language Therapists (34%), Area Medical Officers (30%), Audiologists (26%), and Ultrasonographers (26%). Conversely it would seem that those who provide the diagnosis only sporadically responded less often. For instance just three cardiologists responded to the survey. However they did not complete the questionnaire because they felt that this was not a common feature of their practice, and others from various disciplines indicated that they only worked with adults. Questionnaires were eliminated from analysis for this reason in 17 cases and the remaining 238 questionnaires were then analysed Notes on data reporting In the following section of the report, which details the responses of professionals, the percentage rate reported for the answers to each of the questions is expressed as a percentage of all 238 cases rather than the percentage of only those who responded to the particular question, unless stated otherwise. As with the parent questionnaire, tables are presented with a total figure except where it was possible for respondents to tick more than one option. Results in tables are presented alphabetically. 103 Satisfied Neither Satisfied nor Dissatisfied Dissatisfied Very Dissatisfied Don’t Know Missing Very Satisfied 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 5.3.1. Characteristics of Professional Respondents The first portion of the questionnaire sought information on the various disciplines; service settings; levels of experience and qualification; and employment types of those who responded to the professional questionnaire. Current discipline of respondent At the beginning of the Professional Questionnaire respondents were asked to indicate their current professional discipline. Table 5.30 below shows that of those who responded to the questionnaire, the most frequently noted disciplines were Consultant Paediatricians and Social Workers. As reported earlier, some categorisation took place on the parent responses as to who had given the news, and similarly the list of disciplines listed below has been categorised, for the sake of clearer analysis. For example, ‘Obstetricians’, ‘OB/GYN’ and ‘Obstetrician/Gynaecologists’ who responded were categorised as ‘Obstetrician/Gynaecologist’ and Midwives and/or Radiographers performing obstetric ultrasounds were categorised as ‘Ultrasonographer’. Current Discipline Table 5.30 – Current discipline of respondents n= Percentage Area Medical Officer 15 6.3% Audiologist 12 5.0% Community Nurse (RNID) 5 2.1% Consultant ENT 1 0.4% Consultant Geneticist 1 0.4% Consultant Neurologist 1 0.4% Consultant Obstetrician/Gynaecologist 10 4.2% Consultant Paediatrician 30 12.6% Consultant Paediatrician/Neurologist 1 0.4% Consultant Psychiatrist 2 0.8% Consultant Radiologist 1 0.4% Eye Specialist (Ophthalmologist/Optometrist) 3 1.3% GP 7 2.9% Genetic Counsellor 1 0.4% Midwife 15 6.3% Neonatal Nurse 4 1.7% Nurse 4 1.7% Obstetrician/Gynaecologist 5 2.1% Occupational Therapist 9 3.8% Paediatric Nurse 16 6.7% Physiotherapist 5 2.1% Psychiatrist 2 0.8% Psychologist 20 8.4% Public Health Nurse 2 0.8% Social Worker 30 12.6% Speech and Language Therapist 17 7.1% Trainee Doctor 1 0.4% Trainee Obstetrician/Gynaecologist 3 1.3% Trainee Paediatrician 5 2.1% Ultrasonographer 9 3.8% Visiting Teacher for the Deaf 1 0.4% Total 238 100% Region The professional respondents were asked to indicate the regions of the country they were practicing in at the time of responding, and in line with the results of the parental study the most common region of practice was Leinster and the least common was Ulster. A number of respondents ticked more than one region, since it is possible to work across regions. These responses were captured and lead to the count obtained being higher than the number of respondents, however the percentages are reported as a proportion of all 238 cases to reflect the percentage of responding professionals who work in each region. 104

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