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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Table 5.78 -

Table 5.78 - Recommendations for Organisation and Planning Informing Families Consultation and Research Report Organisation n= Strongly Agree Neutral Disagree Strongly Agree Disagree Staff members share information, so that parents do not have to give the same history or information to many different people 228 70.2% 23.5% 1.3% 0.4% 0.4% Staff members coming on to new shifts are informed that parents have been given the news that their child has a disability 224 76.5% 17.6% – – – The GP is informed about the child’s disability by those giving the news to the parents 227 72.3% 18.5% 4.6% – – The Public Health Nurse is informed about the child’s disability by those giving the news to parents 226 62.6% 20.2% 10.5% 1.7% – If the diagnosis has been given in the maternity hospital and the mother is staying overnight, a partner or a family member/friend is offered the choice to stay also 221 61.8% 19.3% 11.8% – – The family are offered the choice of accommodation on their own, after the diagnosis 220 46.6% 24.8% 21.0% – – Parents are offered a follow-up appointment within a maximum of two weeks to discuss the diagnosis. 225 57.1% 30.7% 5.5% 1.3% – 5.3.11. Policies and Training The sections examined thus far from the professional questionnaire explored the breadth of disciplines who inform families and the service settings in which they work, along with the particular details of the last time that they were involved in disclosing a child’s disability. This final section of data from the professional questionnaire examines the support and training needs of professionals as they relate to informing families of their child’s disability, examining this area in a more general sense, rather than focusing on one disclosure event. Existing Guidelines for Informing Families of their Child’s Disability A sizeable majority of respondents to the professional questionnaire indicated that they were unaware of any guidelines already in place dealing with the practice of informing families of their child’s disability. Of those who were aware of guidelines already in place, all who responded indicated that they worked within the recommendations of these guidelines. Table 5.79 - Awareness and practice of existing guidelines Guidelines for informing families Are you aware of any guidelines within n= Yes No Missing your current agency or organization? 219 12.2% 79.8% 19 …If yes, do you work within these guidelines? 26 89.7% – 3 133 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Formal Training Received Professionals were asked to indicate the areas related to disclosure of a child’s disability in which they had received training, at both the undergraduate/postgraduate levels, and in work based training. The most prevalent formal training received by the respondents was in communication skills, with over half the respondents receiving communication skills training at undergraduate/postgraduate level and almost a third receiving work-based training. In both the undergraduate/postgraduate and work based settings approximately one quarter of respondents had received training specifically in relation to informing families of their child’s disability. Table 5.80 - Professionals’ undergraduate/postgraduate training in specific areas Undergraduate/Postgraduate training n= Percentage Communication skills 133 55.9% Breaking difficult news 84 35.3% Informing families of their child’s disability 61 25.6% Disability awareness 94 39.5% Adaptive/bereavement training 83 34.9% Table 5.81 - Professionals’ work-based training in specific areas Work-based training n= Percentage Communication skills 78 32.8% Breaking difficult news 72 30.3% Informing families of their child’s disability 62 26.1% Disability awareness 70 29.4% Adaptive/bereavement training 67 28.2% Relevance of training When professionals were asked about the relevance of various aspects of training in relation to informing families of their child’s disability, the response rate achieved was particularly high relative to the response rate for many other questions across the survey, with a sizeable majority indicating that each of the items noted; communication skills, breaking difficult news, informing families of their child’s disability, disability awareness, and adaptive/bereavement training were all relevant to their posts. Table 5.82 - Relevance of training in specific areas Relevance of training n= Relevant Not Don’t How relevant to your post do you consider training in the following areas to be? Relevant know Communication skills 224 93.3% – 0.8% Breaking difficult news 221 85.7% 3.8% 3.4% Informing families of their child’s disability 220 80.7% 7.1% 4.6% Disability awareness 218 84.9% 3.8% 2.9% Adaptive/bereavement training 220 82.1% 6.3% 3.8% 134

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