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

Abstract

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.

Participation Opportunities for Adults With Intellectual Disabilities Provided by Disability Services in One Australian State

“…A number of suggestions for how organizations can improve and enhance service user involvement have also been identified in the literature. These include strategies to improve communication with service users (Centre for Developmental Disability Studies, 2004; Ciulla Timmons & Whitney‐Thomas, 1998), allocate funds and resources specifically to support user participation (Carr, 2004; Mental Health Council of Australia and Craze Lateral Solutions, 2004), and the staff undertaking such processes (Crawford, Rutter, & Thelwall, 2003; Young & Chesson, 2006), families (Centre for Developmental Disability Studies, 2004), a clear purpose for the consultations that are linked to actions (Olsen et al., 1997), and provide feedback to users (Carr, 2004; Crawford et al., 2003; Doel et al., 2007). In the Australian situation, it has also been suggested that bringing in paid consumer and carer consultants, including indigenous and rural and remote consumers (Mental Health Council of Australia and Craze Lateral Solutions, 2004), would be an important enabler.…”

Using Nominal Group Technique to investigate the views of people with intellectual disabilities on end‐of‐life care provision

“…People with intellectual disabilities have historically been excluded from decision‐making about the delivery of services that affect their lives, generally based on the presumption that they are incapable of forming an opinion around their own problems and needs. Although there is growing emphasis in the Western world on inclusion, empowerment and self‐advocacy (Department of Health 2001, Marks & Heller 2003, Brandon 2005), reports of meaningful involvement of people with intellectual disabilities in the shaping of healthcare services remain scarce (Young & Chesson 2006).…”

Involucración de personas con discapacidad en proyectos tecnológicos de I+D+i: el caso de APSIS4all

“…El uso de fotografías ha demostrado ser muy útil en este caso: permiten situar al participante en el contexto de la investigación y pueden servir para orientar sus respuestas de manera más precisa (Young, 2006).…”