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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

APPENDIX V Figures

APPENDIX V Figures Figure 2.1 - National Federation of Voluntary Bodies Integrated Assessment Interventions Model Data from Parent Questionnaires Figure 5.1 - Child’s gender Figure 5.2 - Child’s age at time of response Figure 5.3 - Diagnosis came at one time or evolved over time Figure 5.4 - Age of child at time of diagnosis Figure 5.5 - Age of parent at time of diagnosis Figure 5.6 - Location for disclosure Figure 5.7 - Timeframe of written information provision Figure 5.8 - Length of time before follow-up appointment Figure 5.9 - Satisfaction of parents with how they were first informed Figure 5.10 - Overall satisfaction of parents if told on more than one occasion Data from Professional Questionnaires Figure 5.11 - Length of time qualified in stated discipline Figure 5.12 - Length of time practicing in stated discipline Figure 5.13 - Length of time since the professional last informed a family Figure 5.14 - Stage of diagnosis the professional was involved in disclosing Figure 5.15 - Time of diagnosis - child aged less than 1 year Figure 5.16 - Time of diagnosis - child aged 1 year or more Figure 5.17 - Location for disclosure Figure 5.18 - Initiation of disclosure discussion Figure 5.19 - Length of time before follow-up appointment Figure 5.20 - Professional’s satisfaction with disclosure Figure 5.21 - Professional’s view of parents’ satisfaction with disclosure Informing Families Consultation and Research Report 171

ACKNOWLEDGEMENTS Informing Families Consultation and Research Report We would like to express our particular thanks to the many families who so generously shared their experiences of being told of their child’s disability, and the numerous professionals who described their experiences in communicating this news to families and supporting them thereafter. Without these contributions this report would not have been possible. Given the wide-ranging contributions from families and professionals into the project, there were a large number of people who assisted in many different ways; in providing expert advice on accessing groups of individuals; in distributing questionnaires, facilitating contacts for focus groups; and in providing support contacts for parents who participated. The contribution of these people, who are too numerous to mention, is hugely appreciated. Our thanks are also particularly due to the Informing Families Project Steering Committee who have guided the research and consultation over the past three years. The contribution of the Health Services National Partnership Forum was critical to the success of the Informing Families Project. Their support, both financially, and through the significant contributions of Tess O’Donovan and Marie O’Haire in facilitating all fifteen professional focus groups is gratefully acknowledged. Dr. Suzanne Guerin from the School of Psychology, and Dr. Bairbre Redmond from the School of Applied Social Science in University College Dublin provided the Informing Families Project team with expert validation of the research design and statistical sampling employed in the consultation and research phases of the project, along with providing valuable guidance and support during the analysis and write-up phases, for which we express sincere thanks. The following groups’ contributions are gratefully acknowledged: • The Early Services Teams in the National Federation of Voluntary Bodies member organisations, Enable Ireland, the Central Remedial Clinic, the National Council for the Blind of Ireland and Cork Deaf Association. The Department of Education and Science (Visiting Teachers for the Deaf) • The professional bodies and trade unions who provided support for the focus groups and questionnaire dissemination (a list of which can be found on pages 50 and 85) • St. Michael’s House Research Ethics Committee • St. John of God Hospitaller Services Provincial Ethics Committee • The Library Staff in St. Michael’s House and St. John of God Hospitaller Services • The National Federation of Voluntary Bodies Research Ethics Committee • The Health Research Board • The HSE, and in particular Dr. Mary Hynes and Mr. James O’Grady • The staff members in Cork University Hospital and Cork University Maternity Hospital, • The Early Services teams of Ability West (especially Dóchas); St. Michael’s House; and the Brothers of Charity, Galway and Limerick, who provided advice and guidance at the initial exploratory phase of the research, and in particular Mary O’Connor (St. Michael’s House) A special word of thanks to my colleagues in the National Federation of Voluntary Bodies, to Brian O’Donnell for his constant support throughout the project; to Maria Walls for her key role in shaping the development of research project and her guidance and support throughout; to Edel Tierney for her advice, support and expert contributions, and to Jillian Sexton, Breda Casey, Caroline Looney, Mary Barrett, Maria McMahon, Eamon Naughton, Brian Donohoe, Carla Ward and Brendan Dolan for their assistance and support. Sincere thanks, also to Oliver Donohoe for his valuable guidance and support. To my family - warm thanks for their love and constant encouragement. To the numerous people who assisted in so many ways with the development of the Guidelines, many thanks. Alison Harnett, Informing Families Project Co-ordinator National Federation of Voluntary Bodies. 172

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