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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 “It’s the toughest part of the job really. When you have experience you will prioritise this, because it’s a big priority, because it’s something that parents remember.” Consultant Paediatrician, Informing Families focus groups 41

Informing Families Consultation and Research Report CHAPTER 3 CONSULTATION AND RESEARCH STRATEGY A key requirement in the development of national best practice guidelines for how families are informed of their child’s disability was to identify how disclosure currently takes place in the Irish context. In order to explore all aspects of existing practice a consultation and research strategy was developed, with the aim of balancing at each stage two perspectives; the views and experiences of families of children with disabilities, and the views and experiences of staff members in hospitals, community care and disability services. The research sought to identify and maintain those aspects of good practice already in place and to consult all stakeholders on recommendations for best practice going forward, and in so doing to address the following research questions: 1. How are families in Ireland today informed of their child’s disability? 2. What is currently working well in how families are informed in Ireland? 3. What areas of the current process do families feel need improvement? 4. What areas of the current process do professionals feel need improvement? 5. What do families and professionals recommend should be included in future best practice for disclosing disability? 6. What are the support and training needs of professionals involved in informing families? 7. Validation of existing best practice recommendations for the Irish context The programme of work began with the following elements: Start-up Phase 1. Initial Exploratory Research 2. Literature Review Informed by the knowledge gathered in this initial phase, the following developments were agreed: Consultation Phase: 3. Seven Focus Groups with parents of children with disabilities 4. Fifteen Focus Groups with professional disciplines who communicate the diagnosis to parents or support parents immediately thereafter Research Phase: 5. National Questionnaire Survey disseminated to 584 parents of children with disabilities 8 6. National Questionnaire Survey disseminated to 1588 professionals The details of how this research strategy evolved are outlined in this chapter. The information gained through all of the strands was analysed, collated, and used to inform and develop guidelines which then were then endorsed by the National Steering Committee of the Informing Families Project. Aims and Objectives The objectives of the research and consultation programme undertaken were: ● to provide a sound evidence base for the Guidelines developed ● to gather data and recommendations from key stakeholders ● to ensure that the policies recommended are in line with international best practice and appropriate for implementation in an Irish context. 8 For details on how samples sizes were determined, please see Chapter 5, pages 78-85. 42

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