Search results for ‘Subject term:"learning disabilities"’ Sort:
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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.
Shadowing as a qualitative research method for intellectual disability research: opportunities and challenges
- Authors:
- VAN DER WEELE Simon, BREDEWOLD Femmianne
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 46(4), 2021, pp.340-350.
- Publisher:
- Taylor and Francis
Background: While qualitative research on intellectual disability is on the rise, researchers have frequently reported that their methods bring methodological and ethical challenges. The authors advance shadowing as an alternative method to respond to these concerns. Method: The authors draw on their experiences with shadowing on the basis of two separate studies respectively, involving 28 and 17 people with intellectual disabilities. Results: Four distinct advantages of shadowing are presented: it is flexible, gives unique insight in daily life experiences, can aid in giving “voice” to people with intellectual disabilities, and can aid in the pursuit of inclusive research. Three challenges of shadowing research were also identified, relating to ethical approval, privacy and role confusion. Conclusions: Shadowing is a promising method for intellectual disability research, as it allows researchers to garner data virtually inaccessible with other methods. It is particularly useful for research questions about everyday life and interpersonal relationships. (Edited publisher abstract)
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)
Inclusive research: an Irish perspective
- Authors:
- SALMON Nancy, AOIFE Barry, HUTCHINS Enid
- Journal article citation:
- British Journal of Learning Disabilities, 46(4), 2018, pp.268-277.
- Publisher:
- Wiley
Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, 2006) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change. Method: This study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland. Results: Thematic analysis using Atlas.ti software yielded three themes: “Continuum of inclusive research,” “Value of inclusive research” and “Power relations within inclusive research.” Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors. Conclusions: This study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted. (Publisher abstract)
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
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)
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)
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)
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)
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
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)