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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report 1. Initial exploratory research During 2004, meetings were held with parents of children with disabilities and with professionals from disciplines in various service settings. These meetings were held in order to gain an overview of the broad picture in Ireland today, to ascertain which professional disciplines are involved in informing parents that their child has a disability; how the news is told; and any issues currently standing in the way of consistent implementation of best practice. The broad picture emerging anecdotally from the initial meetings was a lack of consistency across the country in terms of practice and policy. It appeared that written guidelines were rarely in place, and that many staff members had not had specific training in communicating the diagnosis of a child’s disability sensitively. Parents who had heard the news in a range of settings (from those who received a diagnosis at the maternity hospital, to those with evolving diagnoses, and those with no diagnosis as yet), reported varying experiences - some in which good practice was evident; others with distressing accounts of how concerns about their child were first communicated. The initial interviews undertaken found a very wide range of professional disciplines involved in disclosing the news of disability to parents in Ireland. The interviews found that staff members responsible for communicating the diagnosis include members of various medical disciplines; most commonly Paediatricians. In the case of sensory disabilities it was suggested that the diagnosis may be made by an Ophthalmologist, ENT Consultant, or Audiologist. Midwife-led clinics in the ante-natal setting are often the first stage at which a concern is raised during pregnancy. Some Midwives may communicate the concern directly and refer on to the Obstetrician, while the Obstetrician will be the first point of contact for the family in other areas. In the community setting the Area Medical Officer or GP may pick up concerns and refer on to specialised services. Within community services and disability service-providers parents are often told by Psychologists and various professional therapists working on multi-disciplinary assessment teams such as Social Workers, Occupational Therapists, Physiotherapists, and Speech and Language Therapists. Support for the family who have been given the diagnosis is provided by a range of professionals, often including midwives, nurses, social workers and other members of the multi-disciplinary team. The above is just an example of the myriad of settings and professionals who may be involved in sharing the news, as identified by the initial research, and is by no means an exhaustive list. Parents often first suspected the news of their child’s disability from interactions with staff members other than those who might be responsible for providing a formal diagnosis. In one case reported during the initial interviews, a father who was waiting outside an operating theatre while his wife was having a Caesarean-section was told by a hospital porter that his baby had Down Syndrome. Some other parents had sensed that something was wrong at the time of birth from the body language of all staff members present. These examples underlined the importance of including in the research all staff members that may be involved in the process, regardless of whether their direct responsibility includes communicating the news. Valuable information emerged from these initial meetings, identifying systemic issues (e.g. lack of appropriate physical environments in which to communicate the news, a shortage of Developmental Paediatricians, etc.) as well as practice issues, hindering good informing. It became clear from these interviews that the research of the Informing Families Project would need to examine systemic practice, education and training, resource and policy issues, to find mechanisms to support professionals in successful implementation and adoption of best practice. 2. Literature Review Examining existing research from Irish and international sources was a vital strand of the development of recommendations for best practice in informing families. As already discussed, an important finding to emerge from the literature review was a lack of Irish research in this area. There had been several reports (e.g. Redmond, 2000; South Western Area Health Board & Rush, 2003) referring to the experiences of families receiving the news of their child’s disability. However there had been just one significant piece of recent Irish research focussing specifically on the area of policy and practice in informing families of their child’s disability. This study; Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care (Doyle, 2004), was conducted by the then Eastern Regional Health Authority (ERHA), and examined practice within the maternity hospitals and early intervention services in the former ERHA region. The report found a lack of written guidelines or standard policy across the maternity hospitals and services studied. It made 23 specific recommendations for the implementation of improvements in practice. During the period of initial project investigation it was found that this study had not been replicated around the country, and that there was no clear picture in existing research of practice on a national level. 9 9 With the inception of the Informing Families Project the HSE took the decision to provide the research of the Report of the Maternity and Intellectual Disability Review Group on Integrated Patient Care directly to the Informing Families Project, so that a coherent strategy taking into account both projects could be formulated. Therefore the Informing Families Project builds on the research begun in the ERHA study. 43 3. CONSULTATION AND RESEARCH STRATEGY

Informing Families Consultation and Research Report Development of research strategy Following the set-up phase of the Project Steering Committee, the initial interviews with parents and professionals and the literature review, the Steering Committee of the Informing Families project met in December of 2004 and discussed the research strategy for the project in the light of this initial work. Several strands from the exploratory research came together to lead to the definition of the project scope. In summary: - As discussed above the literature review revealed only one existing piece of recent Irish research (Doyle, 2004) dealing specifically with the area of informing families of their child’s disability. There was therefore a need to undertake research to examine and validate the local findings of the ERHA report on a national basis. - As there was a paucity of existing Irish research, there was a consequent need to validate guidelines which had emerged in international research, for the Irish context. - There was a need to give a stronger voice to the experiences of parents within the Irish research, as little had been reported thus far of how parents experienced diagnosis. - The early project investigation had indicated anecdotally that parents were reporting a range of dissatisfactory experiences that demonstrated an urgent need for policy guidance and staff support across the range of locations in which the informing of families takes place. - The broad scope of professionals that deliver the news in Ireland, identified in the initial exploratory research, meant that there was a need for consultation to be undertaken with a wide and complex range of disciplines in order to successfully capture current practice and to identify the supports and training required by professionals to facilitate implementation. - Systemic issues emerged, and needed to be fully identified and addressed in order to ensure that the guidelines produced would be viable, to inform successful implementation. - A review of existing Irish policy and strategy documents revealed that the Informing Families project was seeking to fulfil a policy remit that has been specifically expressed, and yet unmet since Needs and Abilities in 1990, and reiterated in subsequent documents such as A Strategy for Equality (The Report of the Commission on the Status of People with Disabilities, 1996), and Towards an Independent Future (The Review Group on Health and Personal Social Services for People with Physical and Sensory Disabilities, 1996). Having examined these points the Steering Committee recommended a comprehensive consultation and research programme to fully explore all of the relevant issues. The resulting strategy led to the setting up of focus groups with parents and professionals, and the undertaking of the National Questionnaire Survey of Parents and Professionals to gather quantative data about the existing context and to validate a suggested set of best practice recommendations emerging from the focus groups and literature review. As described above, the full consultation and research programme therefore comprised: ● Initial Exploratory Research ● Literature Review ● Focus Groups with Parents ● Focus Groups with Professionals ● National Questionnaire Survey of Parents ● National Questionnaire Survey of Professionals ● Collaboration with other groups Chapters 4 and 5 of this report provide details of the methodology and results from the Focus Groups and National Questionnaire Surveys. Collaboration with other groups The Informing Families Project aimed to link with other agencies wherever cooperation and partnership created added benefits. In addition to the connections made with a wide range of service providers, professional bodies and trade unions during the research and consultation phases, links were also forged with the Hospice Friendly Hospitals Project in Ireland; the Department of Psychology and the School of Applied Social Science in UCD, and the Right From the Start group in the UK. The Hospice Friendly Hospitals Project, (supported by the HSNPF and run by the former HSE North Eastern Region in partnership with the Irish Hospice Foundation) was initiated by the Irish Hospice Foundation in order to address issues of dying, death and bereavement in acute hospitals. A number of common concerns apply to this process and the process of informing families of a child’s disability. The Informing Families Project and the Hospice Friendly Hospitals Project worked on a number of collaborative initiatives to address these areas; looking in particular at the need for sustainable communications skills training 44

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