Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 10 of 11
Adulthood and people with mental handicaps: report of a research project
- Author:
- WALMSLEY Jan
- Journal article citation:
- Mental Handicap Research, 4(2), 1991, pp.141-154.
- Publisher:
- BIMH Publications
Describes a small project which used research interviews to discover the meaning of adulthood to the research participants, five adults with mental handicaps. The project set out to design a research process which would respect their status as adults. The paper focuses on the research process, and the merits and difficulties of the approach are discussed in the context of research methodologies which emphasise the need to redress the power imbalance inherent in more traditional methods.
Facilitating the inclusion of adults with intellectual disability as direct respondents in research: strategies for fostering trust, respect, accessibility and engagement
- Authors:
- McDONALD Katherine E., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 35(1), 2022, pp.170-178.
- Publisher:
- Wiley
Background: Adults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion. Method: this paper describes the multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. This study also assessed indicators of the quality of these strategies. Results: this study identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies. Conclusions: Researchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement. (Edited publisher abstract)
Challenges to conducting randomised controlled trials with adults with intellectual disabilities: experiences of international experts
- Authors:
- MULHALL Peter, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 34(3), 2021, pp.891-904.
- Publisher:
- Wiley
Background: Globally, conducting randomised controlled trials can be a complex endeavour. The complexity increases when including participants with cognitive or intellectual disabilities. A fuller understanding of the barriers and challenges that can be expected in such trials may help researchers to make their trials more inclusive for people with disabilities. Method: Semi‐structured interviews were conducted with twelve international trial experts. Results: Eight themes emerged relating to challenges linked to: 1) participant co‐morbidities, 2) participant ability levels, 3) ethics and consent, 4) the RCT methodology, 5) gatekeeping, 6) staff turnover, 7) lack of technical understanding and 8) attitudes and perceptions. Conclusion: Conducting trials with cognitively disabled participants can pose unique challenges although many can be overcome with ‘reasonable adjustments’. Challenges that are harder to overcome are attitudes and perceptions that people (professional staff, funding bodies, carers or fellow researchers) hold towards the utility of conducting trials with cognitively disabled populations. (Edited publisher abstract)
Co-production and pilot of a structured interview using Talking Mats® to survey the television viewing habits and preferences of adults and young people with learning disabilities
- Authors:
- BUNNING Karen, et al
- Journal article citation:
- British Journal of Learning Disabilities, 45(1), 2017, pp.1-11.
- Publisher:
- Wiley
Background: Capturing the views of people with learning disabilities is not straightforward. Talking Mats® has been used successfully to solicit the views of such individuals. The aim was to co-produce an interview schedule using Talking Mats® on the subject of television-viewing habits and preferences of adults and young people with learning disabilities. A secondary aim was to assess the feasibility of the tool prior to a larger scale survey. Materials and Methods: A co-production process was adopted for the development of the Talking Mats ® interview. Ten adults with learning disabilities were recruited as collaborators. Six people participated in an advisory group that met on six occasions. Four supplementary members reviewed the group's work separately. The collaborators generated vocabulary for the tool, selected the most meaningful graphic symbols and reviewed the categories of television programmes. A script to accompany the Talking Mats® procedure was developed and checked for linguistic complexity. The resulting tool was piloted with five participants. The procedure was video recorded and evaluated for procedural effectiveness. Findings: Review of the video recordings from the pilot study revealed that no participant scored below the minimum effectiveness rating of 12. Areas of difficulty that were noted included: time duration of interview, tangibility of symbols and currency of vocabulary. These triggered a number of recommendations for address in the larger scale survey (Publisher abstract)
Doing research inclusively: bridges to multiple possibilities in inclusive research
- Authors:
- NIND Melanie, VINHA Hilra
- Journal article citation:
- British Journal of Learning Disabilities, 42(2), 2014, pp.102-109.
- Publisher:
- Wiley
This article reports on a study of how people do research that matters to people with learning disabilities and that involves them and their views and experiences. The study was an attempt to bring together people doing inclusive research so that, collectively, practices could be taken stock of. This would add to the individual reports and reflections on approaches that are already available. In particular, the authors wanted to explore what quality means in inclusive research and how we might best achieve this. Focus groups were used to share and generate knowledge, and the authors recorded, transcribed and analysed the dialogue, looking for themes and answers to core questions. It was found that there are many different ways of doing research inclusively, and a model to describe this is proposed. Reflecting on the findings, the authors argue that it is important to keep a flexible vision of inclusive research and to keep learning and talking together. (Edited publisher abstract)
Adults with intellectual disabilities and their carers as researchers and participants in a RCT
- Authors:
- TURK Vicky, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(1), January 2012, pp.1-10.
- Publisher:
- Wiley
People with intellectual disabilities are rarely involved in research about their health, either as researchers or participants. This article describes how a project facilitated inclusion of adults with intellectual disabilities as researchers and participants in randomised controlled trial (RCT) research. The research study was an evaluation of the implementation of personal health profiles for people with intellectual disabilities and their carers, and was funded as part of a Department of Health consumers in research programme. It involved 4 teams of researchers, each comprising a researcher with intellectual disabilities, a supporting professional and a carer researcher. Researchers with intellectual disabilities and/or carers of people with intellectual disabilities gathered information through interviews with participants with intellectual disabilities and/or their carers. The article describes the context of the research, the design, how it was implemented and made accessible, recruitment, training and support, and research processes and outcomes. The authors discuss the project and conclude that the inclusion of people with intellectual disabilities as researchers and as participants was achieved through key factors including appropriate design, strong research partnerships and teamwork.
Evaluating a research training programme for people with intellectual disabilities participating in inclusive research: the views of participants
- Authors:
- FULLANA Judit, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(4), 2017, pp.684-695.
- Publisher:
- Wiley
Background: This article presents the results of evaluating a research training programme aimed at developing the skills of people with intellectual disabilities to actively participate in inclusive research. Methods: The present authors opted for a responsive approach to evaluation, using a combination of interviews, questionnaires and focus groups to gather information on the views of students, trainers and members of the research team regarding how the programme progressed, the learning achieved and participants’ satisfaction with the programme. Results: The evaluation showed that most of the participants were satisfied with the programme and provided guidelines for planning contents and materials, demonstrating the usefulness of these types of programme in constructing the research group and empowering people with intellectual disabilities to participate in research. Conclusions: The evaluation revealed that the programme had been a positive social experience that fostered interest in lifelong learning for people with intellectual disabilities. (Publisher abstract)
Development of Pict-O-Stat: violence – focus on experiences of violence and a survey that can be completed by the individuals themselves
- Authors:
- KRISTENSEN Kerstin, MOLLER Anders
- Journal article citation:
- Journal of Adult Protection, 19(3), 2017, pp.146-157.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to find a method that makes it possible for people with intellectual disabilities to independently contribute to population-based research in areas that is sensitive. It is important to be able to answer questionnaires independently in research areas that are sensitive because the informant maybe does not want to ask for help to answer a questionnaire about sexual violence, domestic violence, etc. Maybe they not even have talked to anyone about their experiences and then have to tell a staff/relative that helps them to complete the survey is probably unthinkable. Design/methodology/approach: To participate in a survey about sensitive issues independently the questions and the methods have to be adapted to the informant’s skills and needs. The questions written in “difficult Swedish” were transcribed into simple language and then tested whether the target group understood the words that describe violent acts. After adjustments another small group tested the method, an Audio Computer-Assisted Self-Interview (ACASI). After they had completed the survey informants were interviewed about what it was like to participate in the survey. Findings: Preliminary results show that it is possible to independently answer population-based questionnaires, even about sensitive issues, if the researcher offers the possibility to use a web-based ACASI. An ACASI can be used on accessible computers and tablets and can have the same questions that only have to be translated into both easy language and alternative format, such as questions with both text and images and listen to the questions read. Originality/value: Researchers can include people with intellectual disabilities, they just need to give them a chance. It is possible if they translate their questions into an easy language and include alternative format, i.e. using both text and images and be able to listen to the questions and answers, by, for example, using a web-based ACASI. (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)
Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research
- Authors:
- HAMILTON Jahanese, et al
- Journal article citation:
- British Journal of Learning Disabilities, 45(4), 2017, pp.230-237.
- Publisher:
- Wiley
Accessible Summary: The NHS Constitution states that all patients should have opportunity to take part in approved research. This study asked clinical researchers how they include people with intellectual disabilities and/or autism in research. Many barriers were identified that relate to making mental capacity judgements. Many researchers agreed new resources that support consent and capacity judgements for research would be helpful and gave some ideas about what could help. Background: Adults with intellectual disabilities and/or autism are often excluded from participating in health and healthcare research. Understanding study information, which is an important aspect of demonstrating capacity to give informed consent, can be a particular challenge. This study surveyed clinical researchers to discover: (i) their experiences of assessing mental capacity for research; (ii) what methods they used to facilitate the inclusion of adults with intellectual disabilities and/or autism; and (iii) their views about a proposal to develop new resources to facilitate mental capacity judgements with adults with intellectual disabilities and/or autism for informed consent for research. Methods: Clinical researchers in North East England who conduct research with NHS patients with intellectual disabilities and/or autism were invited to participate in a 22-item self-completed semi-structured questionnaire survey, either online or on paper. Results: Twenty-one clinicians completed the survey (response rate 30.4%). Participants reported on 18 research studies which included people with intellectual disabilities and/or autism. In many studies people who lacked capacity to give informed consent were excluded, and often shortcuts were taken in judging capacity. Limited adaptations to support capacity were used. Respondents welcomed the proposal of developing assistive resources that could support capacity judgements and informed consent to research. Conclusions: To improve access to research for people with intellectual disabilities and/or autism, researchers need robust methods to facilitate informed consent and mental capacity judgements. Future research should determine which assistive resources show potential to support informed consent and capacity decisions, and whether such resources could improve inclusion in research. (Edited publisher abstract)