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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

159 Informing Families

159 Informing Families Consultation and Research Report “I think, having worked in hospitals where there was a designated parent’s area, and having worked in hospitals where that isn’t present, you can really see the advantage of having it there. Just having a warm environment with simple things - a kettle and some tea make a huge difference. As well as that it gives you an area in which you are comfortable to deliver the news because you are used to that environment – it’s somewhere that is familiar.” Trainee Paediatrician, Informing Families focus groups

Informing Families Consultation and Research Report CHAPTER 7 NEXT STEPS - IMPLEMENTATION PLANNING The development of National Best Practice Guidelines for informing families of their child’s disability was based on comprehensive consultation and research, with the aim of ensuring that they are evidence-based, and applicable within the current Irish context in which families are told the news of their child’s disability. However, international experience indicates that if the Guidelines are published and circulated without the back-up of a clear implementation strategy, the recommendations will remain just that (Fallowfield & Jenkins, 2004), and the needs identified clearly through the research, and in policy documents such as Needs and Abilities (1990) and A Strategy for Equality (1996) over the past seventeen years will remain unaddressed. Throughout the national and international literature a recurring point of concern has been the lack of evaluation of communication skills and ‘breaking bad news’ training in general (Fallowfield & Jenkins, 2004; Girgis & Sanson-Fisher, 1998) and of guidelines for disclosure of disability in particular (Baird et al, 2000; South Western Area Health Board & Rush, 2003). With this in mind, the Informing Families Project made a proposal to the Health Services National Partnership Forum in May 2006 for a new phase of the project; to implement the Guidelines on a pilot basis over a two year period in the Cork Region and to evaluate the outcomes for parents and professionals of the implementation of this programme. Along with local implementation the wider aim will be to gather learning points for national roll-out beginning in 2008. This proposal received full funding support from the Health Services National Partnership Forum to proceed. Objectives: The key objectives of the Cork Project are: ● To pilot the implementation of the National Best Practice Guidelines ● To evaluate if the Guidelines ensure improved outcomes for families and professionals ● To research the key factors leading to the successful implementation of the Guidelines ● To develop a template to guide national implementation of the Guidelines The work plan required to achieve the above objectives will be agreed by a local Steering Committee bringing together key stakeholders including parents and professionals, and management from across hospital, disability and community services in the region. 160

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