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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

“I think hope is an

“I think hope is an ingredient that isn’t quantifiable, but there’s that balance between giving a positive message but yet not minimising the seriousness of a condition… and not minimising the future but leaving that space that they can hope.” Psychologist, Informing Families focus groups 77 Informing Families Consultation and Research Report

Informing Families Consultation and Research Report CHAPTER 5 NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS Evidence from focus groups undertaken with parents as part of the Informing Families Project suggested that practice was, in some cases, causing additional distress for parents during the already stressful experience of learning of their child’s disability. Focus groups with professionals indicated that many staff members found the process of delivering a diagnosis of disability or supporting a family who had been given this news a challenging and emotional experience. Professionals stated that more training, education and support is required and that systemic issues such as resource availability and a lack of appropriate private environments are hindering the implementation of best practice. In order to effect changes in national practice, and given the lack of existing Irish research it was deemed necessary to conduct further research to explore these issues. In order to gather systematic statistical data it was decided to undertake a National Survey Questionnaire of parents and professionals further exploring the above qualitative evidence through quantitative research. 5.1 Questionnaire Survey Methodology Aim: The aim of the National Questionnaire Survey was to provide a sound statistical basis for the development of guidelines, training and education for informing families of their child’s disability. In so doing the ultimate goal is to ensure improved outcomes for families through the implementation of best practice, and to provide improved support, guidance, education and training for professionals who inform and support families at the time of diagnosis. Objectives: The objectives of the National Questionnaire Survey were: ● To identify current practice in how families from around the country are told that their child has a disability and; ● To consider best practice recommendations which emerged from the international literature and from the findings of the focus groups This was done through a postal questionnaire survey to parents of children with physical, sensory and intellectual disabilities and autistic spectrum disorders and to professionals involved in informing or supporting families receiving a diagnosis. Research questions: In order to provide quantitative data to support or refute the hypothesis that there is an absence of consistent best practice in place in Ireland and to explore the recommendations for improved practice in the future, the research questions informing the questionnaire design, in keeping with the research questions of the overall Informing Families study, were as follows: ● How are families in Ireland today informed of their child’s disability? ● What is currently working well in how families are informed in Ireland? ● What areas of the current process do families feel need improvement? ● What areas of the current process do professionals feel need improvement? ● What do families and professionals recommend should be included in future best practice for disclosing disability? ● What are the support and training needs of professionals involved in informing families? ● Rating of suggested best practice recommendations from the literature and the focus group consultation. Research Instrument used As previously discussed, the Right From the Start group was a team set up in the UK in 1994 with the specific goal of improving practice when families are told of their child’s additional needs. The survey questionnaire circulated to families through the Informing Families Project used as its starting point a questionnaire developed by the Right from the Start group to gather data on how families experience the disclosure of disability in the UK. 13 This was then adapted for the Irish context, and additional questions were added to allow comparison with data collected in a number of important studies from the literature review (eg. Quine & Rutter, 1994; Sloper & Turner, 1993). The majority of the adapted questionnaire for parents contained closed questions, with 8 open questions, and a rating page which allowed participants to assess a list of 46 best practice recommendations collated from the international literature and the initial results of the Informing Families parent and professional focus groups. Participants were asked whether they agreed that each recommendation should be implemented, by choosing from a 5-point Likert scale that ranged from ‘Strongly Agree’ to ‘Strongly Disagree’. The questionnaire contained sixteen pages, with an option at the end for participants to attach further pages if they wished to provide additional information. 13 Permission was obtained from the Right From the Start group. 78

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