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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

5.3.10. Rating

5.3.10. Rating of Suggested Elements of Best Practice Informing Families Consultation and Research Report As with the parent questionnaire, professionals were presented with the suggested list of recommendations which emerged from the focus group consultation of the Informing Families Project, and the national and international literature. Professionals were given identical rating tables to those presented in the parent questionnaires, and as with the parent questionnaire there were high levels of agreement with the suggested recommendations. The results for each category are set out in Tables 5.73 to 5.78 below. In keeping with the parent rating results, the presence of the child during the consultation was not ‘Agreed’ or ‘Strongly Agreed’ with by the majority of professional respondents. The only other element which did not receive a majority of agreement from professional respondents when the ‘Agree’ and ‘Strongly Agree’ categories were combined was the recommendation that ‘No extra staff are present for training purposes’. Table 5.73 - Recommendations for Setting/Location & People Present Setting/Location & People Present n= Strongly Agree Neutral Disagree Strongly In future when parents are told of their child’s disability… …the news is given in a private place Agree Disagree with no interruptions Both parents are present when the 227 92.9% 2.5% – – – diagnosis is given If only one of the parents is present, the choice of 226 76.1% 14.3% 4.6% – – a family member or friend to be present is given 226 69.3% 23.1% 2.5% – – During the consultation, the child is present The parents have seen the child before the 217 13% 15.5% 37% 17.2% 8.4% diagnosis is given The parents have spent time with the child 210 55% 19.7% 13.4% – – before the diagnosis is given 212 55.5% 20.2% 13.0% 0.4% – The diagnosis is given by a senior staff member There is an extra staff member present as a 223 69.7% 15.1% 7.6% 1.3% – support after the news is given No extra staff are present for training 223 61.3% 22.7% 8.8% 0.8% – purposes 220 23.1% 14.3% 22.3% 26.9% 5.9% Table 5.74 - Recommendations for Communication Communication n= Strongly Agree Neutral Disagree Strongly Agree Disagree The child is referred to respectfully; by name and not diagnosis 228 92.0% 3.8% – – – Parents concerns are acknowledged 229 91.6% 4.6% – – – Parents are listened to with respect, empathy and understanding 228 92.4% 3.4% – – – Parents concerns are followed up 228 88.7% 7.1% – – – Positive, realistic messages are given with the diagnosis 227 81.1% 13.0% 1.3% – – Staff members giving the news use simple, understandable language 227 86.6% 8.8% – – – The reaction of parents is acknowledged and supported 228 86.1% 9.7% – – – The diagnosis is not rushed and parents are given time to ask questions 226 86.6% 8.4% – – – Parents are told what will happen next (e.g. tests) 227 81.5% 13.9% – – – Staff members are aware of all aspects of their communication, including body language and possible interpretations 226 78.6% 15.1% 1.3% – – All medical terminology is explained 226 84.9% 9.7% 0.4% – – 131 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report Table 5.75 - Recommendations for Training Training n= Strongly Agree Neutral Disagree Strongly Agree Disagree Staff members are trained in communication skills 228 77.3% 17.2% 0.8% – 0.4% Staff members are trained in good practice for informing families of their child’s disability 228 78.2% 16.4% 0.8% 0.4% – Staff members have a good understanding of disability 227 75.2% 19.7% 0.4% – – Table 5.76 – Recommendations for Information & Support Information & Support n= Strongly Agree Neutral Disagree Strongly Agree Disagree Parents are asked how much information they wish to receive 225 36.1% 38.7% 11.3% 8.0% 0.4% Parents are asked when they would like to receive information 225 39.9% 38.7% 11.8% 3.8% 0.4% An interpreter is provided if English is not the first language of the parents 227 81.9% 12.2% 1.3% – – Staff members check that parents have understood what has been discussed 228 79.4% 15.5% 0.8% – – Parents are given a written summary of the consultation 226 45.4% 23.5% 21.0% 4.6% 0.4% Parents are not left alone for a long period without support 226 51.7% 36.1% 5.5% 0.8% 0.8% Parents are given time alone together to absorb the news 225 60.1% 28.6% 5.9% – – Parents are given written information (leaflets, books etc.,) about their child’s disability/diagnosis 224 58.8% 29.8% 5.5% – – The written information given to parents is in their first language 225 66.4% 24.4% 3.8% – – Parents are given the option of information about support groups 226 62.6% 30.7% 1.7% – – Parents are given the option of contact with other families 221 52.1% 29.8% 11.8% 0.4% 0.4% Parents are offered the option of counselling 225 55.9% 28.2% 9.7% 0.4% 0.4% Parents are offered contact with a social worker/liaison person 227 61.3% 26.9% 7.1% – – Parents are kept up to date at all times, with honest information 227 75.6% 19.3% 0.4% – – Table 5.77 - Recommendations for Referral Referral n= Strongly Agree Neutral Disagree Strongly Parents are referred to early services as Agree Disagree soon as possible Parents are given information about the service 228 79.0% 16.0% 0.8% – – they are referred to 228 77.7% 17.6% 0.4% – – 132

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