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Belonging and reciprocity amongst people with intellectual disabilities: a systematic methodological review
- Authors:
- FULTON Lauren, KINNEAR Deborah, JAHODA Andrew
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(4), 2021, pp.1008-1025.
- Publisher:
- Wiley
Background: Social inclusion has been explored using a wide range of theories and methods. Belonging and reciprocity have been identified as key components of social inclusion. This systematic methodological review identifies and evaluates the theoretical frameworks and qualitative approaches adopted to explore belonging and reciprocity in the lives of adults with intellectual disabilities. Method: A systematic search was conducted across ten databases. Screening and quality appraisal were carried out independently by two researchers, and data were extracted to provide detailed accounts of the theories and methods employed. Results: Seventeen papers met inclusion criteria. Clear conceptualisations of belonging and reciprocity were lacking, and these concepts were rarely the focus of the research. Theoretical and methodological shortcomings across this literature were identified and discussed. Conclusions: More nuanced conceptualisations of belonging and reciprocity may be helpful in future research, to better capture the context and meaning of individual lives and relationships. (Edited publisher abstract)
The while of participation: a systematic review of participatory research involving people with sensory impairments and/or intellectual impairments
- Authors:
- RIX Jonathan, et al
- Journal article citation:
- Disability and Society, 35(7), 2020, pp.1031-1057.
- Publisher:
- Taylor and Francis
This paper reports on the first systematic review of literature associated with participatory research involving people identified with sensory impairments and/or intellectual impairments. It was initiated as part of ARCHES, an European Union-funded heritage project. The review sought to examine processes and activities used for organising participatory research involving people identified with sensory and/or intellectual impairments. 54 papers were included, involving studies from 14 countries and varying numbers of participants across different time scales. Insights were gained into use of advisory groups, organisation and support, collecting and analysing data, sharing findings and activity types. Emergent themes enabled an identification of the while of participation. The while represents the tensions, outcomes and component parts which are evident within the multiple moments that span an experience of participatory research. Participation is not about types of activity but how any activity is undertaken. (Edited publisher abstract)
A synthesis of the evidence on peer research with potentially vulnerable adults: how this relates to dementia
- Authors:
- DI LORITO Claudio, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 32(1), 2017, pp.58-67.
- Publisher:
- Wiley
Background: This study aims to identify the benefits, the risks and the practical challenges and to develop a model of good practice in peer research with people with dementia. Methods: The review conducted searches on PsycInfo, PubMed and Google Scholar for empirical investigations or discussion papers on peer research. Given the limited literature in the field of dementia, studies with groups who share similar demographics (older people), experience of stigma (mental health service users) and exclusion from research (people with learning disabilities) were included. No restrictions on language and publication date were applied. Analysis: Three themes were identified: the potential benefits, the potential risks and the practical challenges of peer research. The authors the developed a model of good practice. The European Working Group of People with Dementia reviewed the authors' paper and added to the findings. Results: Seven papers were included in the evidence synthesis. Potential benefits of peer research included enriched data and empowering people with dementia. Potential risks included power differentials between researchers and issues of representativeness. The practical issues for good practice included the training of peer researchers, defining involvement and roles, working with cognitive impairment and considering resource implications. The European Working Group of People with Dementia emphasised the importance of equality issues. Conclusion: Involving people with dementia in peer research can generate several benefits, including empowerment and opportunities for inclusion for the peer researchers and the research participants living with dementia, challenging academics' traditional views on research processes and gathering enhanced research data. There remains a need for further research on the impact of peer research in dementia studies. (Edited publisher abstract)