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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

EXECUTIVE SUMMARY

EXECUTIVE SUMMARY Informing Families Consultation and Research Report Introduction In 2004 the National Federation of Voluntary Bodies, with support from the Health Services National Partnership Forum (HSNPF), 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. The development of the guidelines was guided by a Steering Committee 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). The Steering Committee has representation from key groupings such as parents, disability service providers, the HSNPF, the Health Services Executive, 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. 1 Project Aims The aim of the Informing Families Project was 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 The scope of the project included the disclosure of a child’s diagnosis of physical, sensory, intellectual, or multiple disabilities, and autistic spectrum disorders. The Guidelines that were produced relate to the diagnoses of a child’s disability whether that takes place during pregnancy, at birth, or in the case of a diagnosis which evolves over time. The Guidelines relate to disclosure of diagnosis in hospital, community and disability service settings. Methodology 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 review of relevant national and international literature, and an examination of the national policies relating to this area. ● Initial exploratory research with families and professionals. 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 The consultation and research strands explored disclosure practice across the range of hospital, community, and disability service settings in which parents may receive the news of their child’s disability. Each of the stages undertaken informed and led to the next stage, and the results of the consultation and research in the literature, focus groups and national questionnaire survey were collated and analysed to produce the National Best Practice Guidelines for Informing Families of their Child’s Disability. 1 Please see Page 166 - Appendix III – Steering Committee Membership. 7

Informing Families Consultation and Research Report Findings The findings of the consultation and research undertaken during the Informing Families Project indicate the need for specific supports to be put in place in order to support consistent and universal implementation of best practice guidelines for how families are informed of their child’s disability: ● Government Strategy and Policy documents from the past 17 years call for the introduction of specific measures to support best practice in how families are informed of their child’s disability. The measures relating to how families are informed of their child’s disability largely remain unimplemented. a. Needs and Abilities (1990) b. A Strategy for Equality (1996) c. Towards an Independent Future (1996) d. Quality and Fairness (2001) e. Disability Act & Sectoral Plans (2005) ● The importance of the disclosure process is clearly outlined in the International research, which indicates that the way in which families are given the news of their child’s disability has an impact on levels of distress and anxiety for the family, has a bearing on the attachment process, and can influence parent-professional relationships thereafter (Cunningham, 1994; Sloper and Turner, 1993). Cunningham also indicates that dissatisfaction with disclosure is not inevitable and that the introduction of good practice increases parental satisfaction with how they are told of their child’s disability (Cunningham, 1994). The disclosure process has implications for the child, for the family, for the staff members communicating the news, and for managers of staff members engaged in the process. Poor disclosure practice can impact on the welfare of the child when inadequate information leads to delays in accessing support (Hatton et al, 2003), and can also increase the risk of litigation (Fallowfield and Jenkins, 2004). Staff members may experience challenges in terms of the emotions and stresses that can be associated with communicating difficult news to the family. The provision of training and debriefing opportunities can be positive supports for staff members in this regard (Abel et al, 2001; Barnett et al, 2007). ● Analysis of the Informing Families Project national questionnaire survey indicated that levels of parental satisfaction with disclosure reported in the current study are in line with those found in the international literature, and indicate that practice in Ireland appears to lead to a similar levels of parental satisfaction to those experienced in other countries. What is very encouraging, also, is that the levels of dissatisfaction found in the current study are significantly lower than those reported in previous studies. These results demonstrate that there is a basis for good practice already in place in Ireland with many parents experiencing the disclosure process in a supported way, and many professionals currently employing appropriate strategies to ensure that parents receive the news in the best way possible. ● However, both the focus groups and the national questionnaire survey found that there were parents who expressed significant levels of dissatisfaction with how they were told, and professionals who expressed an urgent need for further support and training to assist in the application of best practice. These results clearly demonstrated that when there are deficits in practice the consequences for parental distress can be significant, and when professionals do not feel adequately trained or supported, it increases the stressful nature of the emotionally challenging task of communicating difficult news. Clearly then, there is a strong rationale for implementing guidelines that aim to ensure a more consistent approach to supporting parents and professionals. ● Through the focus group consultation with families of children with disabilities, parents spoke of the impact caused when poor practice caused additional stress at the time of diagnosis. Parents in the focus groups who were dissatisfied with how they had been told the news noted inappropriate physical environments in which the news is delivered, a lack of appropriate communication, a lack of continuity of care, and inconsistent provision of comprehensive, accurate and up to date information, as the areas requiring the most urgent need for improvements. ● Existing Irish research (Redmond, 2000; Western Health Board & Brothers of Charity Galway, 2003) and the findings of the Informing Families research indicate that there are significant deficits in the information currently provided to parents. There is a need for co-ordination of the information available to professionals for supply to parents, as a lack of ownership of information in local settings is currently leading to many parents receiving out of date leaflets, or not receiving recommended literature due to professionals not knowing it is available. The findings of the research indicated that deficits include a lack of information in mainstream settings about the services available in disability service settings; a lack of information in languages other than English; a lack of guidance on appropriate Internet sites for parents seeking information about a particular diagnosis; and dispersed and confusing information regarding benefits and entitlements. There is a need for widespread and equitable access to accurate, up to date and appropriate information and interpretation services. 8

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