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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Table 5.28 -

Table 5.28 - Recommendations for Information & Support Informing Families Consultation and Research Report Information & Support n= Strongly Agree Neutral Disagree Strongly Agree Disagree Parents are asked how much information they wish to receive 171 47.8% 34.2% 7.1% 1.6% 2.2% Parents are asked when they would like to receive information 171 49.5% 31.0% 9.2% 2.2% 1.1% An interpreter is provided if English is not the first language of the parents 169 71.2% 17.4% 2.7% – 0.5% Staff members check that parents have understood what has been discussed 170 69.0% 20.1% 2.2% 0.5% 0.5% Parents are given a written summary of the consultation 169 66.8% 14.7% 8.2% 1.6% 0.5% Parents are not left alone for a long period without support 171 63.0% 16.3% 8.7% 3.8% 1.1% Parents are given time alone together to absorb the news 170 69.0% 18.5% 3.8% – 1.1% Parents are given written information (leaflets, books etc.,) about their child’s disability/diagnosis 170 70.7% 16.8% 3.8% – 1.1% The written information given to parents is in their first language 170 76.1% 13.0% 2.2% 0.5% 0.5% Parents are given the option of information about support groups 172 64.7% 25.0% 2.7% 0.5% 0.5% Parents are given the option of contact with other families 170 51.6% 28.3% 11.4% 0.5% 0.5% Parents are offered the option of counselling 172 53.8% 31.0% 7.6% 0.5% 0.5% Parents are offered contact with a social worker/liaison person 171 59.2% 26.1% 6.0% 0.5% 1.1% Parents are kept up to date at all times, with honest information 171 75.5% 15.2% 1.6% – 0.5% 101 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Missing 4.9% Don’t know 7.6% Very Dissatisfied 19.6% Dissatisfied 7.6% Table 5.29 - Recommendations for Organisation and Planning Organisation & Planning 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 171 75.0% 13.0% 2.7% 1.1% 1.1% Staff members coming on to new shifts are informed that parents have been given the news that their child has a disability 172 77.7% 12.5% 2.7% – 0.5% The GP is informed about the child’s disability by those giving the news to the parents 171 72.8% 17.9% 1.6% – 0.5% The Public Health Nurse is informed about the child’s disability by those giving the news to parents 172 69.0% 17.4% 4.3% 1.6% 1.1% 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 170 73.4% 14.1% 3.3% 0.5% 1.1% The family are offered the choice of accommodation on their own, after the diagnosis 171 63.6% 16.8% 9.8% 1.6% 1.1% Parents are offered a follow-up appointment within a maximum of two weeks to discuss the diagnosis. 172 78.8% 12.0% 2.2% – 0.5% 5.2.7. Parental Satisfaction with Disclosure Satisfaction with first disclosure of child’s disability Following the questions relating to aspects of how they had received their child’s diagnosis, parents were asked to indicate how satisfied they were with how they were informed, the first occasion that they had been given information about a concern or diagnosis. The responses to this question are set out in Figure 5.9 below. Sixty-seven parents (36.4%) were either ‘Satisfied’ or ‘Very Satisfied’ with how they had been informed. Fifty parents (27.2%) were either ‘Dissatisfied’ or ‘Very Dissatisfied’. Figure 5.9 – Satisfaction of parents with how they were first informed Very Satisfied 10.3% Neither Satisfied nor Dissatisfied 23.9% Satisfied 26.1% 102 Neither Satisfied nor Dissatisfied Dissatisfied Very Dissatisfied Don’t know Missing Very Satisfied Satisfied

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