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Working alongside older people with a learning disability: informing and shaping research design
- Authors:
- HERRON Daniel, PRIEST Helena M., READ Sue
- Journal article citation:
- British Journal of Learning Disabilities, 43(4), 2015, pp.261-269.
- Publisher:
- Wiley
Background: There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities. Materials and Methods: Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed. Results: These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia. Conclusion: Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations.
Invited commentary on Bigby and Frawley's reflections on the challenges of doing inclusive research as part of the “Making Life Good in the Community” study
- Author:
- ALM Norman
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 35(2), June 2010, pp.62-63.
- Publisher:
- Taylor and Francis
This paper discusses the paper by Bigby and Frawley in this journal issue on the involvement of a person with intellectual disability as a co-researcher in a large multimethod study. This commentary applauds the project for taking a leap into unknown territory, and then to be so honest in recognising that the intended aims were not met. It points out that the list of requirements normally needed for researchers may not be appropriate for someone with learning difficulties. An approach that might work in involving someone with learning difficulties as a research associate is to design a niche in the project which suits their specific capabilities. This paper goes on to describe some of their own research group’s attempts to involve people with a disability in research into developing a range of assistive technology systems intended to benefit them. In particular it describes the involvement of older users and older users with dementia in iterative design methods to continually comment on and test a series of hopefully improving prototypes.
Consensus statement of the International Summit on Intellectual Disability and Dementia on valuing the perspectives of persons with intellectual disability
- Authors:
- WATCHMAN Karen, et al
- Journal article citation:
- Journal of Intellectual Disabilities, 23(2), 2019, pp.266-280.
- Publisher:
- Sage
- Place of publication:
- London
The International Summit on Intellectual Disability and Dementia covered a range of issues related to dementia and intellectual disability, including the dearth of personal reflections of persons with intellectual disability affected by dementia. This article reflects on this deficiency and explores some of the personal perspectives gleaned from the literature, from the Summit attendees and from the experiences of persons with intellectual disability recorded or scribed in advance of the two-day Summit meeting. Systemic recommendations included reinforcing the value of the involvement of persons with intellectual disability in (a) research alongside removing barriers to inclusion posed by institutional/ethics review boards, (b) planning groups that establish supports for dementia and (c) peer support. Practice recommendations included (a) valuing personal perspectives in decision-making, (b) enabling peer-to-peer support models, (c) supporting choice in community-dwelling arrangements and (d) broadening availability of materials for persons with intellectual disability that would promote understanding of dementia. (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)
Engagement of people with long-term conditions in health and social care research: barriers and facilitators to capturing the views of seldom-heard populations
- Authors:
- BEADLE-BROWN Julie, et al
- Publisher:
- Quality and Outcomes of Person-centred Care Policy Research Unit
- Publication year:
- 2012
- Pagination:
- 56
- Place of publication:
- Canterbury
Explores the recent literature on barriers and facilitators to including seldom heard groups as participants in research. Eighteen databases were identified for the final search, and 83 papers included in the review. These predominantly focused on four categories as being difficult to reach or engage in research: intellectual disability, older adults, in particular those with dementia, mental health conditions and minority ethnic groups. Almost half the papers reviewed focused on those with intellectual disabilities. A key barrier to inclusion was the assumptions made by various people (researchers, gatekeepers, ethics committees, funders and so on) involved at each stage of the research process, including research design, ethics and recruitment. The paper suggests that there has been limited progress in developing methods to systematically include these groups in recent years and that there is a need for more research exploring the use of alternative techniques for eliciting responses. (Edited publisher abstract)
Understanding and addressing underrepresentation in a postal survey of social care users
- Authors:
- SMITH Nick, MALLEY Juliette
- Publisher:
- Quality and Outcomes of Person-centred Care Policy Research Unit
- Publication year:
- 2012
- Pagination:
- 91
- Place of publication:
- Canterbury
This report draws together the findings of a review of postal surveys, examining the potential causes of underrepresentation and looking at methods of improving representation, such as such as the Adult Social Care Survey (ASCS). Evidence from postal surveys is increasingly being used in England to monitor and improve the performance of social care services. This review has highlighted that it is not only the characteristics of users but the behaviour of the organisation delivering the survey that can affect response rates. It outlines a range of approaches when participation is not possible and highlights four key methods that can be used to enable participation in postal surveys: recognising that the study information section of a postal survey can be a barrier to participation if it does not appear to be relevant to the respondent; adapting the questionnaire to reflect the 'individualised' needs of the participant, such as versions in other languages and Easy Read versions for adults with learning disabilities; employing alternative methods of data collection, such as face-to-face or telephone interview, alongside the postal survey; and encouraging or even providing support to complete the survey. (Edited publisher abstract)
User participation in health and social care research: voices, values and evaluation
- Editors:
- NOLAN Mike, et al, (eds.)
- Publisher:
- Open University Press
- Publication year:
- 2007
- Pagination:
- 232p., bibliog.
- Place of publication:
- Maidenhead
User participation in research is still in its relative infancy with many practical, ethical, moral, methodological and philosophical questions unanswered. This text gathers together an international set of authors to explore these issues and begin to forge some practical solutions to each of these concerns. The book includes contributions on the use and application of narrative approaches, intervention and evaluation research, methodological development and quality thresholds. It provides a practical framework for all groups wishing to undertake research based on the principles and values of user participation. The book is structured around ten original case studies which explore the use of participatory methods in practice with a variety of groups across diverse health, social care and community settings. These include older people, including those with dementia, people with learning disability, mental health service users and their carers, and children and young people. Unique and often groundbreaking studies from Australia, Sweden, the UK, and the USA are used to illustrate application of theory to research practice.