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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 Training needs Over half of the professionals responded that there are training needs for themselves as individuals, for their team or department and for their main employer in relation to the process of informing families of a child’s disability. The highest level of agreement corresponded with the need for training for the respondent’s team/department. Table 5.83 - Training needs for informing families Training needs Do you feel there are training needs related to informing families of a child’s disability… n= Yes No Missing For yourself? 212 65.1% 23.9% 26 For your team/department? 195 69.3% 12.6% 43 For your main employer? 164 60.5% 8.4% 74 Debriefing structures The majority of professionals involved who responded to the questionnaire (73.5%) indicated that there were no formal structures in place for staff to debrief after giving a family the news that their child has a disability, or supporting a family who have been given this news. Of this majority, almost three quarters (72.6%) would like to see such a facility provided. For those who noted that there already were formal structures in place, 70.3% reported using these facilities. Format for guidelines The final question of the professional questionnaire related to the respondents preferred formats for the best practice guidelines. The professionals were asked to specify their preferences from a list of potential formats that the guidelines could be presented in. There was a relatively low response rate to this question; however of those who specified, the formats most frequently chosen were ‘Training Course with Peers’, which over half the respondents chose, and ‘Interdisciplinary Training Course’, which just under half the respondents recommended. The focus on training here is in keeping with the findings of the ‘Training Needs’ section above, in which respondents indicated the highest level of indication for training needs as being within their team/department. Table 5.84 - Format of Guideline policies and training Policies and Training n= Percentage Report 40 16.8% Training course with peers 138 58.0% Checklist 68 28.6% Training CD-ROM 59 24.8% Protocols 87 36.6% Poster/laminated sheet of information 34 14.3% Online training course 42 17.6% Online information resource pack 62 26.1% Interdisciplinary training course 115 48.3% Printed information resource pack 89 37.4% Role play/experiential training 76 31.9% Missing 58 24.4% 135 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report 5.4 Summary of Parent and Professional Response to Recommendations The following section sets out the combined level of agreement with each recommendation, using the average of the parent and professional results in each case. When the opinions of parents and professionals were combined there was only one recommendation which did not receive majority agreement; the recommendation that the child should be present for the disclosure. Table 5.85 - Setting/Location & People Present Setting/Location & People Present Parent Professional Amalgamated Agree & Agree & Agreement Strongly Strongly Percentage Agree Agree In future when parents are told of their child’s disability… …the news is given in a private place with no interruptions 93.5% 95.4% 94.5% Both parents are present when the diagnosis is given If only one of the parents is present, the choice of a 88.6% 90.3% 89.5% family member or friend to be present is given 90.8% 92.4% 91.6% During the consultation, the child is present 38.6% 28.6% 33.6% The parents have seen the child before the diagnosis is given 81.0% The parents have spent time with the child before the 74.8% 77.9% diagnosis is given 77.7% 75.6% 76.7% The diagnosis is given by a senior staff member There is an extra staff member present as a support 88.0% 84.9% 86.5% after the news is given 78.3% 84.0% 81.2% No extra staff are present for training purposes 64.7% 37.4% 51.1% Communication Table 5.86 - Communication Parent Professional Amalgamated Agree & Agree & Agreement Strongly Strongly Percentage Agree Agree The child is referred to respectfully; by name and not diagnosis 95.1% 95.8% 95.5% Parents concerns are acknowledged Parents are listened to with respect, empathy 96.2% 96.2% 96.2% and understanding 96.2% 95.8% 96.0% Parents concerns are followed up 95.7% 95.8% 95.8% Positive, realistic messages are given with the diagnosis Staff members giving the news use simple, 91.8% 94.1% 93.0% understandable language 95.7% 95.4% 95.6% The reaction of parents is acknowledged and supported The diagnosis is not rushed and parents are given time 96.7% 95.8% 96.3% to ask questions 95.1% 95.0% 95.1% Parents are told what will happen next (e.g. tests) Staff members are aware of all aspects of their communication, including body language 95.7% 95.4% 95.6% and possible interpretations 92.9% 93.7% 93.3% All medical terminology is explained 96.2% 94.5% 95.4% 136

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