Researching unheard voices: Parents caring for their adult children who have learning disabilities

Abstract

The intention of this article is to convey the importance of research with ‘hard to reach’ populations and utilise the outcomes from a qualitative (Doctor of Philosophy) study completed in 2017. Important issues, which involved both social workers located within an adults’ multi-disciplinary team (MDT) and parents who supported their (adult) children with learning disabilities, are discussed throughout. The White Paper Valuing People (Department of Health, 2001) is briefly discussed in relation to the impetus towards supporting parents and informal carers. Furthermore, the notion of health and social care integration and its progress is also highlighted, with a focus upon how progress (or not) has had an effect upon parents supporting an (adult) child with learning disabilities. Creative methods of parental engagement are revealed, which highlight the complexities of supporting a son or a daughter with learning disabilities. Stanfield’s (2000) Four-level Framework has been utilised as the basis for data generation and the analysis of the findings. The ‘lived experiences’ of parents who received statutory services are presented as five individual case studies, which discuss their sons’ and daughters’ support arrangements. The Mental Capacity Act, 2005 has been referred to in this article as the underpinning legislation which brought about changes for the parents and the circumstances of their children. Consequently, the parents discussed their changing relationships with social workers as a result of using this legislation. All the parents (n=5) illustrated the significance of social workers’ support and how their input had made a positive difference to their lives. The findings from this research study were shared with social workers and allied health professionals located within the learning disabilities service. The purpose was to present ‘new knowledge’ about the lives of parents receiving multi-disciplinary services.

Keywords: social workers, multi-disciplinary team, learning disabilities, adults, parents, Mental Capacity Act, 2005