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Journal article

Tales of hidden lives: a critical examination of life history research with people who have learning difficulties

Author:
GOODLEY Danny
Journal article citation:
Disability and Society, 11(3), September 1996, pp.333-348.
Publisher:
Taylor and Francis,

Explores the use of life history research with people who have learning difficulties. A number of strengths and weaknesses associated with the life history as a method of imparting live experiences are examined. Particular emphasis is given to the dilemmas that researchers may face in explicating the life histories of informants labelled as having learning difficulties. With reference to literature on narrative-based research and by drawing upon their own research experiences, the author argues that life histories reaffirm the personal in social theorising, whilst providing a methodology in which individual and social worlds may be drawn together. Also draws attention to dilemmas that arise in making links between an individual's life history and social theory, and looks at problems relating to uses of bias and power. In research involving people with learning difficulties, it is concluded that life histories cogently expose the experiences of people so-labelled and therefore deserve further usage albeit with critical assessment.

Journal article

A feasibility study into the measurement of physical activity levels of adults with intellectual disabilities using accelerometers and the International Physical Activity Questionnaire

Authors:
DAIRO Yetunde M., COLLETT Johnny, DAWES Helen
Journal article citation:
British Journal of Learning Disabilities, 45(2), 2017, pp.129-137.
Publisher:
Wiley-Blackwell

Background: Few studies have measured physical activity (PA) levels of adults with intellectual disabilities using both objective and subjective methods, but none included individuals with profound intellectual disabilities. To inform effective measurement of PA across the disability spectrum, this study explored: the feasibility of measuring PA levels using the International Physical Activity Questionnaire-short version (IPAQ-s) and a wrist-worn 7-day accelerometer; examined the level of agreement between instruments/raters; and established the recruitment rate. From the literature reviewed, no study has investigated these issues. Materials and Methods: Two-hundred adults with intellectual disabilities from a local authority lists in UK were invited to participate. Participants were administered an accelerometer for seven days and the IPAQ-s (self and carer-reported). Results: Twenty participants with mild to profound intellectual disabilities (20–70 years) were recruited. The response rate was significantly different between home (16%) and residential homes (4%): χ2(1) = 7.7, p < .05. All participants completed the IPAQ-s but only 15 completed 7-day accelerometer. Self and carer-reported PA had perfect agreement on IPAQ-s, and agreements between instruments using PA guidelines was substantial (k = 0.6, p < .05). However, mean moderate-vigorous PA min/week differed between measures at 145 and 207 from IPAQ-s and accelerometer respectively. Conclusions: Recruitment demonstrated a need for better engagement with residential homes. While both the IPAQ-s and accelerometers can be used to evaluate PA levels, the IPAQ-s was more acceptable and carer report was accurate, but it underestimated absolute moderate-vigorous PA levels. These findings indicate that IPAQ-s can be used to measure PA levels, including in those with profound intellectual disabilities. (Publisher abstract)

Journal article

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)

Journal article Full text available online for free

Participatory research, people with intellectual disabilities and ethical approval: making reasonable adjustments to enable participation

Authors:
NORTHWAY Ruth, HOWARTH Joyce
Journal article citation:
Journal of Clinical Nursing, 24(3-4), 2015, pp.573-581.
Publisher:
John Wiley and Sons

Aims and objectives: The aim of this paper is to explore how making reasonable adjustments to the process of securing ethical approval for research can facilitate the meaningful involvement of people with intellectual disabilities as members of a research team. This is achieved through critical reflection upon the approach taken within one participatory research study whose objective was to explore how people with intellectual disabilities understand abuse. Background: Internationally participatory research studies (in which active involvement of community members in all stages of the research process is sought) are becoming increasingly common in the context of health care and, more specifically, within research involving people with intellectual disabilities. However, whilst it is acknowledged that participatory research gives rise to specific ethical challenges, how (or if) involvement in securing ethical approval is facilitated, is not discussed in most research reports. The significance of this paper is that it seeks to address this gap by exploring how meaningful participation can be promoted by making reasonable adjustments. Methods: Within the study, the research team worked in collaboration with the ethics committee to identify potential barriers that could prevent the participation of members of the research team who had intellectual disabilities. Reasonable adjustments (such as redesigning forms) were made to the processes involved in securing ethical approval. Conclusions: This study demonstrated that it is possible to ensure that ethical standards are upheld and the requirements of ethics committees met whilst also facilitating the meaningful involvement of people with intellectual disabilities. Relevance to clinical practice: The reasonable adjustments approach explored within this paper can be translated into the context of clinical practice: making changes to the way that services are delivered can promote greater involvement of people with intellectual disabilities in their own health care. (Publisher abstract)

Journal article

The power of difference in inclusive research

Author:
WOELDERS Susan
Journal article citation:
Disability and Society, 30(4), 2015, pp.528-542.
Publisher:
Taylor and Francis,

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography the authors reflect on these aspects and the challenges along the way. They conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks. (Edited publisher abstract)

Journal article

Co-researching with people who have intellectual disabilities: insights from a national survey

Authors:
O'BRIEN Patricia, McCONKEY Roy, GARCIA-IRIARTE Edurne
Journal article citation:
Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.65-75.
Publisher:
Wiley-Blackwell

In undertaking a national study exploring what life was like in Ireland for people with intellectual disabilities, a community of practice was developed involving a core group of co-researchers: five people with intellectual disabilities, four university researchers and three service support staff. An additional cadre of 15 co-researchers with intellectual disabilities was recruited to undertake data gathering and analysis with 23 focus groups involving 168 participants. The research experience was documented through oral feedback, progress reports, minutes and a project review. The key learning is documented arising from the setting up of an inclusive advisory group and implementation of each of six research steps. The study demonstrates feasibility and the added value of university co-researchers recruiting and developing skills together with co-researchers with intellectual disabilities. Topics for further research and development are identified. (Edited publisher abstract)

Journal article

Building an inclusive research community: the challenges and benefits

Authors:
NIND Melanie, VINHA Hilra Gondim
Journal article citation:
Learning Disability Today, 13(3), May/June 2013, pp.22-24.
Publisher:
Pavilion
Place of publication:
Hove

Summarises the approach and findings of a research project designed to build cacpacity for inclusive research among individuals and systems. The research involved a series of focus groups of participant researchers with learning disabilities; participant researchers with and without learning disabilities; and one group of academic participant-researchers with experience of collecting data from or with people with learning disabilities. The main themes from the groups were then analysed. A model was then developed highlighting different ways of working together based on whether the greatest emphasis lay on support, negotiation or independence. The project also highlights how inclusive research can improve research quality as it can ask questions other research cannot answer and has improved access to participants and communities. (Original abstract)

Book Full text available online for free

Structured observational research in services for people with learning disabilities

Author:
MANSELL Jim
Publisher:
NIHR School for Social Care Research
Publication year:
2011
Pagination:
31p.
Place of publication:
London

The authors review structured observational research, primarily in services for people with learning disabilities. Observational research is of particular value where people using services are unable to answer interviews or questionnaires about their experiences, and where proxy respondents may not be sufficiently accurate sources of data. The review illustrates the use of observational data in assessing and improving the quality of services. Drawing on the published research evaluating services for people with learning disabilities, it deals with the question of what to observe and how to define it so that the information gathered is valid and reliable. It discusses sampling in order to obtain representative information, considers the practical steps that have to be taken in order to make observations in services, and, using examples from the research literature, it shows how to analyse and present observational data.

Journal article

Focus groups with people with learning disabilities

Authors:
KAEHNE Axel, O'CONNELL Clare
Journal article citation:
Journal of Intellectual Disabilities, 14(2), June 2010, pp.133-145.
Publisher:
Sage
Place of publication:
London

This article begins by commenting on the role of focus groups in qualitative research. It then reviews the current literature on focus groups in learning disability research and provides an overview of four aspects that may impact on the usefulness of the focus group method with respondents with learning disabilities.

Journal article

Meta-analysis of deinstitutionalisation adaptive behaviour outcomes: research and clinical implications

Authors:
HAMELIN Jeffrey P., et al
Journal article citation:
Journal of Intellectual and Developmental Disability, 36(1), March 2011, pp.61-72.
Publisher:
Informa Healthcare

In this study, a targeted meta-analysis is conducted on adaptive behaviour outcome studies examining individuals with intellectual disability. Database searches identified 351 potentially relevant articles, and 23 studies were finally selected and compared. A table summarises the characteristics and outcomes for the studies included. 16 were American in origin, 4 were Australian, 2 were Canadian, and one originated in the UK. The article presents and discusses the results of the analysis, noting that the data from the analysis clearly illustrated the general habilitative effects associated with deinstitutionalisation and community living. The authors concluded that adaptive skills and behaviours are instrumental in the successful adjustment of individuals with intellectual disability to new environments and responsibilities. They suggest that more research is needed to identify specific factors that augment habilitation for adults with intellectual disabilities living in the community.

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