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.
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.
Authors: María Inmaculada Fernández-Ávalos; María Nieves Pérez-Marfil; Rosario Ferrer-Cascales; Francisco Cruz-Quintana; Violeta Clement-Carbonell; Manuel Fernández-Alcántara Journal: Int J Environ Res Public Health Date: 2020-11-23 Impact factor: 3.390