Obtaining views on health care from people with learning disabilities and severe mental health problems

• Published in: British journal of learning disabilities 2006-03, Vol.34 (1), p.11-19
• Main Authors: Young, Anita F., Chesson, Rosemary A.
• Format: Article
• Language: English
• Subjects: Attitudes; Care evaluation; Health Services; informed consent; Interviews; Learning Disabilities; Learning disabled; Medical Care Evaluation; Medical service; Mental Disorders; Mental health services; Research Methodology; research methods; Research Tools; user involvement
• ISSN: 1354-4187; 1468-3156
• DOI: 10.1111/j.1468-3156.2005.00337.x

Summary Despite the rhetoric of involvement of people with learning disabilities in health care there is a dearth of research which examines the extent to which service users are included in evaluating their own care. This paper describes a study of methods for enabling people with learning disabilities and complex health needs to comment on the specialist inpatient care they received. Six service users consented to take part in interviews using analogue scales and photographs. The participants were able to engage in all elements of the interviews even though inclusion was more challenging because of additional health problems such as manic depression and paranoid psychosis. The suitability of research tools and approaches are discussed and barriers to inclusion identified. In this investigation a gap emerged between government policy of inclusion for everyone, and the realities of frontline practice where involvement was not achieved for some users with severe/profound disabilities. The study points to implications for increased resources, education and training if meaningful user involvement is to become established for individuals within routine practice.