Views
5 years ago

chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report mention just such two examples, 189 of 190 respondents in a study by Quine and Pahl were mothers (Quine and Pahl, 1987), while 92% of respondents in a study undertaken by the UK Downs Syndrome Association were mothers. (Downs Syndrome Association, 2006) A relatively low response rate was recorded from participants from Ulster (3.3% of parents, and 5.5% of professionals). With regards to the professional questionnaire, although it was not possible to sample each of the 27 disciplines in a manner that would provide statistically representative samples, in keeping with the theory of theoretical generalisability (Sim, 1998), the study does provide significant data on the experiences of professionals who are similar to the group who responded, and provides the most comprehensive current Irish databank of information regarding professional’s practice in relation to informing families of their child’s disability. While concerns do exist about the limitations of the study as detailed above, the size of the study also means that a large number of parents and professionals have contributed their understanding, experiences and opinions to the recommendations. The triangulation of results, and the high level of agreement between parents and professionals on the aspects of practice put forward through the National Questionnaire Survey, which match closely with the recommendations of the international literature, supports the rationale for implementation of the Guidelines, and provides confidence in the data. 6.3 Conclusions Conclusions Analysis of the data of the Informing Families Project indicates the need for specific supports to be put in place in order to support the 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 chid’s disability. The measures relating to how families are informed 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) ● International research 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 parentprofessional relationship thereafter (Cunningham, 1994; Sloper & Turner, 1993) ● Previous Irish research (Doyle, 2004) indicated a lack of consistent guidelines or local policies in place to guide professionals breaking the news to families that their child has a disability. The results of the focus groups of the Informing Families Project and the Informing Families Professional Questionnaire support this finding and indicate that professionals working in disclosure of disability or supporting families who receive the diagnosis would welcome clear guidelines and training in best practice. ● The results of the Informing Families national questionnaire survey indicate that there is good practice in place in many locations and that many parents indicate a high level of satisfaction with how they have been given their child’s diagnosis. The results of the focus groups, and the areas of deficit highlighted through the national questionnaire survey indicate that where there are deficits in practice, they impact on families and professionals significantly, thereby reinforcing the need to build on the good practice already in place and provide consistent policies that ensure good practice is replicated in all locations. ● Existing Irish research (Redmond, 2000, WHB, 2003) and the results 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 147 6. COLLATION AND ANALYSIS OF RESULTS

Informing Families Consultation and Research Report on appropriate Internet sites for parents seeking information about a particular diagnosis; and dispersed and confusing information regarding benefits and entitlements. The information needs of parents, and of professionals seeking information to provide to parents requires widespread and equitable access to accurate, up to date and appropriate information and interpretation services. ● 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. ● Focus groups with professionals identified that the process of giving families the news that their child has a disability, or supporting the family immediately thereafter, is an emotional and challenging one, and that they have a requirement for support in this area. Professionals indicated that there is a need for training, supervision, and the introduction of local policies to guide practice on the front line. ● Through the focus group consultation and questionnaire survey, parents and professionals indicated the clear need for continuity of care to be provided within service settings (e.g. where more than one medical or social care team are involved in providing the diagnosis) and across settings (e.g. when families are discharged from hospital settings into the community, or are awaiting referral to Early Services). A named liaison person is required to provide continuity of care and co-ordinate the team approach in these situations, to avoid the very distressing vacuum that many parents and professionals described following discharge before reaching Early Services, and the mixed messages that were often received when internal teams did not effectively communicate. ● The range of disciplines involved in providing first information to families of children who have a disability is extremely broad, and encompasses professionals from across hospital, community, and disability services. The broad range of disciplines involved, many of whom are in mainstream rather than disability-specific services, means that clear planning and ownership of tasks within the disclosure and support process; interdisciplinary training; and a structured approach to dissemination of best practice is necessary. ● Existing strategies for implementing best practice in informing families of their child’s disability in the UK were found through evaluation to have been ineffective when one third of key staff members were unaware of the guidelines (Fallowfield & Jenkins, 2004), indicating the need for a comprehensive communications strategy to accompany the dissemination and implementation of best practice guidelines. International experience, and the non-implementation of existing policy recommendations, indicates that if Best Practice Guidelines are published and circulated without the back-up of a clear implementation strategy, the recommendations will remain just that, and the needs identified clearly over the past seventeen years will remain unaddressed. This report therefore recommends the implementation of the following evidence-based best practice guidelines, and the undertaking of a coordinated, adequately resourced approach to implementation which is integrated across hospital, community, and disability service settings. The National Best Practice Guidelines for Informing Families of their Child’s Disability fall into two sections; Guiding Principles and Best Practice Recommendations. The Guiding Principles apply regardless of the circumstances of disclosure. The Recommendations are non-prescriptive, and in addition to being informed by the above principles will require adaptation to the circumstances of disclosure, including: ● Hospital / community / disability service setting / family home ● Ante-natal diagnosis 20 / diagnosis at birth / evolving diagnosis ● Physical / sensory / intellectual / multiple disabilities and autistic spectrum disorders ● Unexpected event / predicted disclosure following assessment or tests The recommendations were finalised through triangulating the data from the focus groups, national questionnaire survey, and the national and international literature. Any recommendation which was indicated in at least two of those three strands of the research was adopted for inclusion. The recommendations have been categorised into the broad areas which emerged throughout the various stages of research in the project and which are listed below: ● Setting/Location and People Present at Disclosure ● Communication 20 Joan Lalor et al (2007) have conducted Irish research into the specific elements of practice that relate to disclosing a concern or diagnosis during pregnancy. A further reading list in this regard can be found on page 164 of the Reference section. 148

Best Practice Guidelines - National Federation of Voluntary Bodies
presentation - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Open hearts - National Federation of Voluntary Bodies
Next Steps Project - National Federation of Voluntary Bodies
friendships and taboos - National Federation of Voluntary Bodies
Annual Report 2011 - National Federation of Voluntary Bodies
Annual Report 2008 - National Federation of Voluntary Bodies
Annual Report 2005 - National Federation of Voluntary Bodies
Questions re final document - National Federation of Voluntary Bodies
Toward Having a Good Life - National Federation of Voluntary Bodies
Achieve More 2 - National Council for Voluntary Organisations
annual report 2006 annual report 2006 - National Federation of ...
Fish friers Review - Mar / Apr 2012 - Issue 2 - National Federation of ...
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Information document - National Federation of Voluntary Bodies
People Connecting - National Federation of Voluntary Bodies
plain english Cover2 - National Federation of Voluntary Bodies
co-researcher handbook - National Federation of Voluntary Bodies
Reading list - National Federation of Voluntary Bodies
Community Participation - National Federation of Voluntary Bodies
NEXT STEPS PROJECT - National Federation of Voluntary Bodies
Reading list - National Federation of Voluntary Bodies
Easy to read programme - National Federation of Voluntary Bodies