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

Lawrence, JA

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

Citation

who have learning disabilities. Social Work and Social Sciences Review, 19(3), 81-97. https://doi.org/10.1921/swssr.v19i3.1192

• Journal Article Type: Article
• Acceptance Date: Jun 6, 2018
• Online Publication Date: Oct 4, 2018
• Publication Date: Oct 4, 2018
• Deposit Date: Aug 14, 2018
• Publicly Available Date: Oct 4, 2020
• Journal: Social Work & Social Sciences Review
• Print ISSN: 0953-5225
• Publisher: Whiting and Birch
• Volume: 19
• Issue: 3
• Pages: 81-97
• DOI: https://doi.org/10.1921/swssr.v19i3.1192
• Publisher URL: https://journals.whitingbirch.net/index.php/SWSSR/article/view/1192/0
• Related Public URLs: https://journals.whitingbirch.net/index.php/SWSSR