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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

5.2.6. Rating

5.2.6. Rating of Suggested Elements of Best Practice Informing Families Consultation and Research Report Respondents to both the parent and professional questionnaires were informed that the Informing Families Project had carried out focus groups with families whose children had received a diagnosis of disability, and with professionals who are involved in communicating a diagnosis of disability to families. From these focus groups and from a review of the international literature, suggested recommendations were made for how the news should be given to families in Ireland in the future. Respondents were invited to rate these suggested elements of practice, with options ranging on a five-point scale from ‘Strongly Agree’ to ‘Strongly Disagree’. The tables from pages 99 to 102 below indicate the level of agreement with each of the 46 elements of practice, broken down into the categories used throughout this report to describe the various aspects of disclosure. A high level of agreement with the recommendations was recorded, with almost all of recommendations being rated as ‘Strongly Agree’ by the majority of parents. The exceptions which were not strongly agreed with by a majority include the suggestion that the child should be present at disclosure (Setting/Location and People Present) and the recommendations that parents are asked how much information they wish to receive and when they would like to receive it (Information & Support). When the ‘Strongly Agree’ and ‘Agree’ responses are combined for the recommendation regarding the presence of the child, the total comes to just 38.6%. However when the responses from ‘Strongly Agree’ and ‘Agree’ are combined for the latter two recommendations noted above, the combined levels of agreement were 82% and 80.5% respectively. Table 5.24 - Recommendations for Setting/Location & People Present Setting/Location & n= Strongly Agree Neutral Disagree Strongly People Present Agree Disagree In future when parents are told of their child’s disability… …the news is given in a private place with no interruptions 175 91.3% 2.2% 0.5% 0.5% 0.5% Both parents are present when the diagnosis is given 179 82.1% 6.5% 7.1% 0.5% 1.1% If only one of the parents is present, the choice of a family member or friend to be present is given 179 73.4% 17.4% 4.9% 0.5% 1.1% During the consultation, the child is present 176 28.3% 10.3% 35.3% 13.6% 8.2% The parents have seen the child before the diagnosis is given 176 64.1% 16.8% 13.6% 0.5% 0.5% The parents have spent time with the child before the diagnosis is given 178 59.8% 17.9% 16.3% 1.6% 1.1% The diagnosis is given by a senior staff member 179 76.1% 12.0% 6.5% 1.1% 1.6% There is an extra staff member present as a support after the news is given 178 56.5% 21.7% 13.6% 2.7% 2.2% No extra staff members are present for training purposes 175 56.0% 8.7% 19.0% 3.8% 7.6% 99 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Table 5.25 - Recommendations for Communication Communication n= Strongly Agree Neutral Disagree Strongly Agree Disagree The child is referred to respectfully; by name and not diagnosis 178 88.6% 6.5% 1.1% – 0.5% Parents concerns are acknowledged 179 87.5% 8.7% 0.5% – 0.5% Parents are listened to with respect, empathy and understanding 178 89.1% 7.1% – – 0.5% Parents concerns are followed up 180 87.0% 8.7% 1.1% 0.5% 0.5% Positive, realistic messages are given with the diagnosis 177 75.0% 16.8% 2.7% 1.1% 0.5% Staff members giving the news use simple, understandable language 179 83.7% 12.0% 1.1% – 0.5% The reaction of parents is acknowledged and supported 180 81.0% 15.8% 0.5% – 0.5% The diagnosis is not rushed and parents are given time to ask questions 179 87.0% 8.2% 1.6% – 0.5% Parents are told what will happen next (e.g. tests) 179 83.7 12.0% 1.1% – 0.5% Staff members are aware of all aspects of their communication, including body language and possible interpretations 178 76.6% 16.3% 3.3% – 0.5% All medical terminology is explained 179 85.3% 10.9% 0.5% – 0.5% Table 5.26 - Recommendations for Training Training n= Strongly Agree Neutral Disagree Strongly Staff members are trained in Agree Disagree communication skills Staff members are trained in good practice for informing families of their 178 80.4% 15.2% 0.5% – 0.5% child’s disability Staff members have a good 177 82.1% 13.0% 0.5% – 0.5% understanding of disability 178 83.2% 12.5% 0.5% – 0.5% Table 5.27 - Recommendations for Referral Referral n= Strongly Agree Neutral Disagree Strongly Agree Disagree Parents are referred to early services as soon as possible 172 84.8% 6.5% 1.1% 0.5% 0.5% Parents are given information about the service they are referred to 171 81.0 10.9% – 0.5% 0.5% 100

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