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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 Employment type A range of responses was reported in relation to respondents’ employment types, showing a spectrum of professionals with differing terms of employment. The majority of respondents indicated that ‘permanent contract’ best described their current post. The next most common type of employment of the professionals in the report was ‘self-employed’. Table 5.34 - Employment type of professionals Type of Post n= Percentage Permanent Contract 196 82.4% Self-Employed 15 6.3% Training Post 10 4.2% Temporary Contract 7 2.9% Locum 4 1.7% Other 3 1.3% Missing 3 1.3% Role of professional in disclosure process Over half of the professionals (57.6%) involved in this study had responsibility for informing families of a child’s diagnosis, or a concern about same. 71% of the respondents indicated that they were responsible for supporting families when they have been given the news that their child has a disability. There was cross-over present in the responses to this question, indicating that many professionals define their role in this process as both informing and subsequently supporting parents. Frequency of involvement Wide variance in the frequency of involvement in disclosure was reported from staff members who described their role as being responsible for initially disclosing the diagnosis; some of whom are involved in this process very regularly – over 35 times per year, while others only occasionally communicate this kind of news to families. Almost half (49.7%) note the frequency of informing families at between 1 and 9 times, and almost a fifth undertake this task more than 35 times per year, as can be seen in Table 5.35 below. Table 5.35 - Frequency of involvement for staff responsible for informing Number of times staff responsible for informing gave the news to families in the past year n= Percentage Never in the last year 6 4.4% 1-4 times 36 26.3% 5-9 times 32 23.4% 10-14 times 19 13.9% 15-19 times 7 5.1% 20-24 times 4 2.9% 25-29 times 2 1.5% 30-34 times 2 1.5% 35+ times 25 18.2% Other 3 2.2% Missing 1 0.7% Total 137 100% 107 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Similarly, there was a spread of responses reported by staff members who noted their role as supporting families when they have been given their child’s diagnosis, in relation to the frequency of their involvement in the disclosure process. Both tables also show that there are many professionals informing families of their child’s disability who encounter this task only occasionally in their day to day work. Table 5.36 - Frequency of involvement for staff members supporting families Number of times staff members responsible for supporting families involved in disclosure in the past year n= Percentage Never in the last year 7 4.0% 1-4 times 45 25.6% 5-9 times 37 21.0% 10-14 times 26 14.8% 15-19 times 10 5.7% 20-24 times 10 5.7% 25-29 times 1 0.6% 30-34 times 4 2.3% 35+ times 26 14.8% Other 1 0.6% Missing 9 5.1% Total 176 100% Just over one third of the professionals in this study (34.9%) manage staff members with responsibility for informing or supporting families at the time of diagnosis of a child’s disability. There was a wide variety of service settings reported in which these those respondents who manage staff practice; across hospital, disability and community service settings. 5.3.2. Child and Family Details The following section sets out the child and family details of the cases described in the professional questionnaire responses. In order to mirror the parent questionnaire in its exploration of various aspects of disclosing a child’s disability, professionals were asked to think of the last time they had been involved in either communicating the news or supporting families who were receiving the news. When analysing the results it was necessary to remove a number of answers of one respondent as this portion of the questionnaire was filled out in relation to the professional’s practice in general and referred to the generality of cases seen instead of the last case in which they were involved. It is important to acknowledge that staff members who supported families who had received their child’s diagnosis may often not have been present at the actual time of disclosure but perhaps became involved shortly afterwards, or were responsible for confirming and repeating information for family members after the event. This factor in how families are informed contributes to the fact that there are many ‘missing’ respondents in the following sections describing the actual disclosure event. Most recent time professional informed a family As was seen above when professionals estimated how often they are involved, there are varying levels of frequency with which staff members encounter the disclosure process in relation to a child’s disability, and the following table supports this finding, in showing that the most recent time that professionals recalled communicating this news varied from within the past week to as much as 3 years previously. The largest group of respondents (13.9%) had informed a family within the previous week. 108

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