Search results for ‘Subject term:"learning disabilities"’ Sort:
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Research with and by people with learning disabilities
- Author:
- DURELL Shirley
- Journal article citation:
- Nursing Times, 112(6/7), 2016, pp.15-18.
- Publisher:
- Nursing Times
People with learning disabilities are not actively involved in research, but inclusive studies can generate findings that are representative of this group of people. This article explores the development of inclusive learning disability research by tracing its background and influences, identifying key characteristics and highlighting some of the challenges in its application. It demonstrates how inclusive research can give people with learning disabilities a voice that will help to inform practice. (Edited publisher abstract)
To what extent are people with intellectual disabilities (ID) active partners in focus group research? A literature review
- Author:
- WRIGHT Rosa
- Journal article citation:
- Groupwork, 26(1), 2016, pp.59-75.
- Publisher:
- Whiting and Birch
Zarb’s (1992) criteria were used to inspect the emancipatory potential met in six pieces of focus group research and the level of collaboration and inclusion for people with ID as ‘active partners’ in research. Selected post-2010 research was sourced from a search of online databases pertinent to nursing, social work and ID. The exercise found that control mostly lies in the hands of academics and clinicians. Research is carried out with people with mild to moderate intellectual disabilities while those with more complex needs are excluded. Power relationships are not closely examined. It is possible to involve people with ID in research using adapted methods and disabled researchers. Firstly, the idea of power and control for active involvement of participants with ID in focus groups is examined. Then recent research is explored through comparative analysis and a discussion. The author concludes that researchers should account more fully for their own positions of power in the medical or social model of disability. Researchers should offer opportunities for criticism and account for the products of research. Turning abstract concepts into concrete examples may benefit participants with intellectual disabilities. (Publisher abstract)
Negotiating with gatekeepers in research with disadvantaged children: a case study of children of mothers with intellectual disability
- Authors:
- COLLINGS Susan, GRACE Rebekah, LLEWELLYN Gwynnyth
- Journal article citation:
- Children and Society, 30(6), 2016, p.499–509.
- Publisher:
- Wiley
Child-oriented researchers have long recognised children's right to be heard in research about their lives and, as experts about childhood, their perspectives should inform social policy and research. While it is encouraging that more children are consulted about matters of importance to them, some children's voices remain silenced. When researchers have to liaise with adults, such as parents and social workers, to recruit children, these adults make decisions about who participates. An account of recruiting children of mothers with intellectual disability, a potentially disadvantaged group, is presented. The reasons for gatekeeping and the implications of this are explored. (Publisher abstract)
Sharing the focus: engaging with support workers to include people with communication needs in research
- Authors:
- LUTZ Deborah, FISHER Karen R., ROBINSON Sally
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, p.138–145.
- Publisher:
- Wiley
Inclusive research is an increasing expectation to value and include people's voice in research and evaluations intended to benefit them. The active participation of people with communication support needs can be difficult due to the practical constraints of evaluations. One technique is to engage with workers who are familiar with the person, but this introduces risks, such as substituting voice and conflict of interests. The authors examine the effectiveness of this technique in ethnographic interviews by applying Nind's framework of core ideas in inclusive research (disrupting hierarchy; maximising participation and competence; enhancing authenticity; empowerment; accessibility, authorship and readership; and ethical considerations) to an evaluation of Australian disability services. The authors found that where support workers had a trusted relationship with the person, they could help them to choose to participate, consent and communicate their views. Disrespectful relationships introduced ethical risks during and after the interviews, which needed to be anticipated and safeguarded against. (Edited publisher abstract)
Doing research together: a study on the views of advisors with intellectual disabilities and non-disabled researchers collaborating in research
- Authors:
- PUYALTO Carol, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(2), 2016, p.146–159.
- Publisher:
- Wiley
Background: Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods: Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis. Results: The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions: The study provides a better understanding of inclusive research processes by taking into account participants' view (Publisher abstract)
Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges
- Author:
- WATCHMAN Karen
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.190–198.
- Publisher:
- Wiley
Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognised and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome. (Publisher abstract)
Fumblings and faux pas: reflections on attempting to engage in participatory research with people with an intellectual disability
- Authors:
- DOROZENKO Kate P., BISHOP Brian J., ROBERTS Lynne D.
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.197-208.
- Publisher:
- Taylor and Francis
Background: Reflexivity is fundamental to developing methodologically and ethically sound research and is particularly important for researchers exploring experiences of oppression. Method: The authors offer reflections on the process of engaging in participatory research with people with an intellectual disability (ID). A reflexive journal was maintained throughout the duration of a research project that used photovoice and conversational interviewing to explore the identities and social roles of 18 members of an advocacy agency for people with ID.Results Challenges and tensions arose throughout the research process, including difficulties reproducing “ideal” participatory research, issues of informed consent, and tensions surrounding the beneficiaries of the research. Broader social processes were mirrored in interactions with the members, and damaging stereotyped identities were unknowingly imposed. Conclusions: Self-awareness and critical reflection is necessary to ensure that the existing power relations in traditional disability research (and wider society) are not replicated during the research process. (Edited publisher abstract)
‘So often they do not get recruited’: exploring service user and staff perspectives on participation in learning disability research and the barriers that inhibit it
- Authors:
- CROOK Bradley, et al
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.130-137.
- Publisher:
- Wiley
The importance of making research participation accessible for people with learning disabilities is emphasised in government and NHS research strategies. This evaluation explored the realities of this goal from the perceptions of people with learning disabilities and clinicians within an NHS learning disability service. People with learning disabilities participated in a focus group (n = 5), and clinicians completed a questionnaire (n = 34), to explore each groups’ experience of research, and identify barriers that may prevent people with learning disabilities from participating. People with learning disabilities engaging in research was seen as essential to increase knowledge of learning disabilities, as well as promote development of appropriate services. Barriers to participation included ability, ethical considerations, practicalities and restriction by ‘gatekeepers’. Clinicians also felt a lack of resources and support prevented them from fulfilling their roles within research. Implications and recommendations are discussed. (Publisher abstract)