Family Voices: Life for Family Carers of People with Intellectual Disabilities in Ireland Darren D. Chadwick*, Hasheem Mannan † , Edurne Garcia Iriarte ‡ , Roy McConkey § , Patricia O’Brien ¶ , Frieda Finlay ‡ , Anne Lawlor ‡ and Gerry Harrington ‡ *School of Applied Sciences, The University of Wolverhampton, Wolverhampton, UK; † Centre for Global Health, Trinity College Dublin, Dublin, Ireland; ‡ National Institute for Intellectual Disability, Trinity College Dublin, Dublin, Ireland; § Institute of Nursing Research, University of Ulster, Belfast, UK; ¶ Centre for Disability Studies, The University of Sydney, Sydney, NSW, Australia Accepted for publication 19 October 2012 Background Families in Ireland remain the main providers of support for people with Intellectual disabilities, and the aim of this study was to map their life experiences whilst involving their family members as co-researchers. Materials and Method This qualitative, participatory study involved 10 focus groups attended by 70 parents and siblings of people with intellectual disabilities. Data were analysed using thematic analysis. Results Caring for a family member with intellectual disabilities was found to be a dynamic and adaptive process. The well-being of the family and the challenges they face throughout their lives was the central theme identified. This was affected by: the availability of appropriate supports for families and having to advocate for them, communication and relationships with services and professionals, the availability of information and attitudes towards disability and governmental support. Conclusions Strategies are suggested as to how services can better support family carers in Ireland in their role. These include families being provided with flexible and timely support for families at critical times; being offered services, support, entitlements and information without having to fight for them; knowing that their family member with intellectual disabilities is well cared for, listened to and provided with opportunities to develop and be part of the community; and carers being shown respect, listened to and involved in decisions. Keywords: family carers, focus groups, intellectual disability, Ireland, participatory research, wellbeing Introduction The majority of people with intellectual disabilities in Ireland are supported by family care givers (Kelly et al. 2010). Recent research has suggested that despite a considerable amount of investment between 1999 and 2009 few more independent living arrangements were developed in Ireland (Kelly & McConkey 2012). In the current climate of economic austerity, cuts in disability services are occurring in Ireland as elsewhere (Health Services Executive 2012). It is possible that reduced placement availability and service support may lead to more people remaining in the care of their families and families having greater difficulty accessing services. It is important to learn more about the lives, needs and supports of these family carers. A recent review has indicated that more research is needed to better understand the changes across the lifespan of families and the relationship of family members to the school, community, workplace, out of home residence and respite providers of the family member with intellectual disabilities (Families Special Interest Research Group of IASSID 2012). This expanded knowledge could enable human services to move to being of service to families and persons with intellectual disabilities rather than giving a service to families (Fergusson & O’Brien 2005). By understanding more about families, services will be better informed and can become better equipped to provide services that meet their needs. Family lives have been extensively researched outside of Ireland. With regard to services, previous studies © 2012 Blackwell Publishing Ltd 10.1111/jar.12003 Journal of Applied Research in Intellectual Disabilities 2013, 26, 119–132 Published for the British Institute of Learning Disabilities