Views
5 years ago

chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

139 Informing Families

139 Informing Families Consultation and Research Report A mother describes the communication that took place when her baby was transferred to a paediatric hospital while she remained an in-patient in a regional hospital. “The communication between the [Regional Hospital] and [Paediatric Hospital] was just unreal. I had to ring, myself, every day. To get information was chaotic. If you would ring they would say ‘oh the doctor is not here, they’ll be around for their visits in the morning’. This went on. It was like it was a file you had sent up - it wasn’t like a person. And when you did get through you felt like you were bothering them. I was on to different doctors every day… I had had a ‘Section and had to get out of bed to make all of these phone calls.” Mother, Informing Families focus groups

Informing Families Consultation and Research Report CHAPTER 6 DISCUSSIONS AND CONCLUSIONS Introduction The data from the Informing Families study have described the experiences of 222 parents (184 through the national questionnaire survey and 38 through the focus groups) in being informed of their child’s disability. In addition, the experiences of 331 professionals (238 through the national questionnaire survey and 93 through the focus groups) in communicating the diagnosis of a child’s disability or supporting families who were receiving such a diagnosis were presented. In all, the direct contribution to the development of the Informing Families Best Practice Guidelines from these 553 individuals means that it is the most comprehensive Irish study to date carried out to ascertain how families are informed of their child’s disability and the required supports and guidance for implementation of best practice in this area. 6.1 Discussion of findings Addressing the research questions In discussing the detailed findings of the qualitative and quantitative research it is useful to revisit the research questions which informed the design of Informing Families study. The questions posed were as follows: 1. How are families in Ireland today informed of their child’s disability? 2. What is currently working well in how families are informed in Ireland? 3. What areas of the current process do families feel need improvement? 4. What areas of the current process do professionals feel need improvement? 5. What do families and professionals recommend should be included in future best practice for disclosing disability? 6. What are the support and training needs of professionals involved in informing families? 7. Validation of suggested best practice recommendations for the Irish context. Following data analysis it was identified that there was very close concurrence between the opinions and recommendations expressed by parents and professionals in the focus groups, and an extremely high level of agreement with the recommendations put forward through the parent and professional questionnaires. For this reason the questions have been collapsed in this final analysis to be discussed under the following headings: 1. How are families in Ireland today informed of their child’s disability? 2. What is currently working well in how families are informed in Ireland? 3. What areas of the current process do families and professionals feel need improvement? (These areas for improvement naturally lead to the recommendations of families and professionals for future best practice). 4. What are the support and training needs of professionals involved in informing families? 5. Validation of suggested best practice recommendations for the Irish context. The details of the findings are discussed in the following sections, based on the results which are brought together from the literature review, the consultative focus groups and the national questionnaire survey of parents and professionals. 1. How are families in Ireland today informed of their child’s disability? The literature review highlighted the importance of how families are informed of their child’s disability. The disclosure process has implications for the child, family, staff members communicating the news, and managers of staff members engaged in the process. Good disclosure practice can enhance the parent-professional relationship thereafter (Cunningham, 1994) and reduce parental dissatisfaction and anguish (Cunningham et al, 2002). Poor disclosure practice increases parental stress (Sloper and Turner, 1993), can impact on the welfare of the child when a lack of information leads to delays in accessing support, (Hatton et al, 2003) and can be associated with an increased risk of litigation (Fallowfield & 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 are positive supports that should be available for staff members in this regard. (Barnett et al, 2007; Abel, 2001) 140

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
Next Steps Project - National Federation of Voluntary Bodies
Open hearts - National Federation of Voluntary Bodies
Annual Report 2011 - National Federation of Voluntary Bodies
friendships and taboos - 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
Programme - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Annual Report 2010 - National Federation of Voluntary Bodies
Annual Report 2007 - National Federation of Voluntary Bodies
Equal Citizens - National Federation of Voluntary Bodies
Fed Vol-A4x4NL-61760 - National Federation of Voluntary Bodies
Spring 2012 - National Federation of Voluntary Bodies
NEEDS AND ABILITIES - National Federation of Voluntary Bodies
Programme FINAL - National Federation of Voluntary Bodies
Information document - National Federation of Voluntary Bodies
co-researcher handbook - National Federation of Voluntary Bodies