Experiences of belonging for people with profound disabilities
Research type
Research Study
Full title
Valuing people now? A qualitative ethnographic study exploring everyday experiences of belonging in the lives of adults with profound and multiple learning disabilities.
IRAS ID
273877
Contact name
Alexandra Kaley
Contact email
Sponsor organisation
Lancaster University
Duration of Study in the UK
1 years, 7 months, 31 days
Research summary
Recent approaches to improving the health and wellbeing of people with learning disabilities has involved a shift in emphasis towards personalised care, community based support and meaningful inclusion or ‘belonging’. The personalisation agenda sought to transform the lives of all disabled people. However, it was acknowledged in the Government White Paper Valuing People Now (2009) that people with profound and multiple learning disabilities (PMLD) have largely remained absent from this agenda. Indeed, people with PMLD continue to lead very segregated and institutionalised lives, with limited opportunities to participate and be included in their communities. Anecdotal evidence suggests that person-centred and community based support can create meaningful opportunities for social inclusion and belonging. However, very few studies have sought to directly involve people with PMLD in research about their experiences of belonging, or the support they receive. This reflects a wider pattern of social exclusion in the lives of people with PMLD. Given the gap in the current evidence base, this small-scale preliminary study shall:
• Pilot the use of qualitative ethnographic methods with people with PMLD, to explore everyday experiences of belonging in the lives of these individuals;
• Conduct in-depth qualitative interviews with family members, carers and advocates who provide support to people with PMLD to gain their perspectives on what it means to ‘belong’ as a person with PMLD in contemporary UK society;
• Identify the nonverbal communication repertoires of participants with PMLD, to develop possible strategies for effectively including people with PMLD in qualitative ethnographic research about their experiences of belonging.These explorations shall inform the development of a major grant application, which proposes to use concept of belonging as a theoretical framework through which to explore the impact of UK government's personalisation agenda (and corresponding emphasis on the shift from day services to community lives) on the lives and experiences of people with PMLD.
REC name
Wales REC 7
REC reference
19/WA/0356
Date of REC Opinion
16 Jan 2020
REC opinion
Further Information Favourable Opinion