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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 The father of a baby boy is told on the day of the birth that the baby has to go to the intensive care unit to have his blood sugars monitored: “The nurse meets me at the door, takes [the baby] in, leaves me in the waiting room, it’s tiny, about the size of a confession box. I’m standing there for about ten minutes, getting worried at this stage because it’s the intensive care unit. The nurse walks back out and hands me his clothes. So I nearly dropped dead on the spot. The clothes that I dressed him in three hours ago when he was born. She handed them back to me and said ‘Sit down there the doctor will be out to talk to you.’ Don’t panic… Where’s the baby, don’t panic…. I was pacing up and down… I walked out to walk into the intensive care unit because at this stage I’d had enough, then I walked back then another foot then eleven foot. I was just about to go in and say ‘What the hell’s going on,’ when the doctor walked out. I said, ‘Is he alright?’ He said ‘He’s fine’. ‘How are the blood sugars?’ ‘Yeah the blood sugars will be fine but there’s something else.’ I said ‘What is it?’ Then he pussyfooted around. I said ‘Tell me what it is. I need to know. If you tell me I can start dealing with it. If you keep me guessing I’m going to be thinking the worst.’ So he said, you’ve noticed his eyes haven’t you?’ I said I hadn’t seen anything wrong with them. He said ‘Well it looks to me like Down Syndrome’… I said ‘What’s that?’ He said ‘Well now he mightn’t have, we have to do tests to confirm.’ I said ‘What percentage do you think?’ And he wouldn’t tell me. I said ‘Look doc, do me a favour tell me what percent …in your opinion, I’m not going to hold you to it, I’m just looking for a guide.’ He said ‘I’m 80%.’ I said ‘Grand. He has Down Syndrome. Now what is it?’” Father, Informing Families Parent Focus Groups 19

Informing Families Consultation and Research Report CHAPTER 1 INTRODUCTION In 2004 the National Federation of Voluntary Bodies, with the support of the Health Services National Partnership Forum (HSNPF) 3 , began a project to develop national best practice guidelines for how families are told of their child’s disability. The project was initiated in response to feedback from many parents to National Federation member organisations, that the news of their child’s disability had been conveyed insensitively, or in inappropriate environments; and that their experience of being told the news had caused additional distress at the time of disclosure. Similarly, feedback from professionals delivering the news indicated that they felt there was an absence of training and clear guidance available to support those undertaking the sensitive and challenging task of giving a family the news that their child has a disability. Project Initiation The project work began in April 2004 with the employment of a Project Co-ordinator. A Steering Committee was formed to guide the study and to facilitate contacts for research 4 . It is chaired by Dr. John Hillery (President of the Medical Council of Ireland 2004-2007, and Consultant Psychiatrist with intellectual disability service providers Stewart’s Hospital and St. Raphael’s, St. John of God Hospitaller Services), and has representation from key groupings such as parents, disability service providers, the HSNPF, the Health Services Executive (HSE), the Department of Health and Children, the Royal College of Physicians of Ireland, the National Federation of Voluntary Bodies and nominees from the professional bodies and trade unions of various disciplines involved in informing families 5 . Project Aims The aim of the Informing Families Project has been to develop evidence-based National Best Practice Guidelines, education, and training; on appropriate procedures to inform families of their child’s disability when communicating a diagnosis or concern. The fundamental goals of implementing these Guidelines are: 1. To ensure improved outcomes for families being told of their child’s disability, through the implementation of best practice. 2. To provide improved support, guidance, education and training for professionals in the important and sensitive task of delivering this news. It was agreed by the project team, and in discussions with the Department of Health and Children, that the scope of the project would include the disclosure of physical, sensory, intellectual and multiple disabilities, and autistic spectrum disorders. As disclosure can take place in a variety of locations and settings, (and indeed across settings in many cases) the research and consultation explored practice across the range of hospital, community, and disability service settings in which parents may receive the news. It is intended that the Guidelines will be applicable in this variety of settings and will take account of the liaison that must take place across settings when parents need to access services which cross organisation and sectoral boundaries. In order to ensure that the Guidelines would be informed by wide ranging consultation and partnership with all key stakeholders, and that they would be grounded in evidence-based research, the Informing Families Steering Committee directed the undertaking of a comprehensive consultation and research programme. This process included: Stage 1 ● A national and international literature review Stage 2 ● Seven consultative focus groups with parents of children with disabilities (physical, sensory, intellectual, multiple disabilities and autistic spectrum disorders), from around Ireland. ● Consultative focus groups with 15 disciplines of professionals involved in communicating to parents the news that their child has a disability, or in supporting them immediately thereafter. Stage 3 ● A National Questionnaire Survey disseminated to 584 parents of children with disabilities ● A National Questionnaire Survey disseminated to 1588 professionals in 27 disciplines who provide the news to families of their child’s disability, or support families who have just received a diagnosis. These elements took place in stages, each of which informed the stages which followed. The development of this programme of research and its methodology is set out in further detail in Chapter 3 of this report. All above strands of consultation and research were analysed and collated to form the National Guidelines presented in this report. The National Guidelines will be implemented at a local level in the Cork region on a pilot basis starting in 2007, the learning from which will be rolled out nationally from 2008 onwards with the support of the HSNPF and the HSE. 3 For further information on these two organisations, please see Appendix I on Page 165 of this document. 4 Please see Page 165 - Appendix II - Steering Committee Terms of Reference 5 Please see Page 166 - Appendix III – Steering Committee Membership 20

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