Search results for ‘Subject term:"learning disabilities"’ Sort:
Results 1 - 9 of 9
Characteristic interviews, different strategies:methodological challenges in qualitative interviewing amomng respondents with mild intellectual disabilities
- Author:
- SIGSTAD Hanne Marie Hoybraten
- Journal article citation:
- Journal of Intellectual Disabilities, 18(2), 2014, pp.188-202.
- Publisher:
- Sage
- Place of publication:
- London
Conducting qualitative research interviews among individuals with intellectual disabilities, including cognitive limitations and difficulties in communication, presents particular research challenges. One question is whether the difficulties that informants encounter affect interviews to such an extent that the validity of the results is weakened. This article focuses on voluntary informed consent and the specific challenges with the greatest effects on such interviews. The discussion shows that complementary and meaningful descriptions from informants imply the need to employ alternative strategies and methods that may, in other contexts, challenge the traditional understanding of what is acceptable in research. (Publisher abstract)
Capacity of people with intellectual disabilities to consent to take part in a research study
- Authors:
- DYE Linda, HARE Dougal Julian, HENDY Steve
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 20(2), March 2007, pp.168-174.
- Publisher:
- Wiley
Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated. A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used: Control (n = 34) – consent information was presented followed by the questionnaire; Section (n = 34) – consent information was broken into sections and the appropriate questions were asked following each section; Photograph (n = 34) – consent information was accompanied by six colour photographs, followed by the questionnaire. Participants also completed measures of memory ability, verbal ability and non-verbal problem-solving ability. Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent. The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.
The research provisions of the Mental Capacity Act 2005
- Author:
- PARKER Camilla
- Journal article citation:
- Tizard Learning Disability Review, 14(1), February 2009, pp.43-49.
- Publisher:
- Emerald
The Mental Capacity Act 2005 establishes a legal framework for making decisions on behalf of people who lack capacity to make such decisions for themselves. It also sets out the circumstances in which it is lawful to carry out research in relation to people who lack capacity to agree to participate in such research. This article considers these provisions (sections 30–34) and relevant guidance, in particular Chapter 11 of the Mental Capacity Act 2005 Code of Practice in relation to adults aged 18 or over.
Doing research on people with learning disabilities, cancer and dying: ethics, possibilities and pitfalls
- Authors:
- TUFFREY-WIJNE Irene, BERNAL Jane, HOLLINS Shelia
- Journal article citation:
- British Journal of Learning Disabilities, 36(3), September 2008, pp.185-190.
- Publisher:
- Wiley
There has been increasing recognition of the fact that people with learning disabilities can and should be involved as active participants in research. However, in the area of cancer and palliative care, they continue to be protected and excluded from contributing to expanding our knowledge base and the shaping of care provision. This paper explores the issues involved in including people with learning disabilities as participants in research around cancer, death and dying. It stems from the authors' own experience of conducting research around cancer and palliative care, where people with learning disabilities were the key informants. Methodological issues include the choice of methodology and problems around recruiting a sample. Ethical issues include informed consent, participants' requests to forego anonymity, observation of sub-optimal care and issues around the boundaries between the roles of researcher and clinician.
Ethical challenges of life story research with ex-prisoners with intellectual disability
- Author:
- ELLEM Kathleen
- Journal article citation:
- Disability and Society, 23(5), August 2008, pp.497-509.
- Publisher:
- Taylor and Francis
This paper outlines the ethical considerations when engaging in life story research with ex-prisoners with intellectual disability. Based on a study conducted in Queensland, Australia, the authors explore some of the challenges that have arisen through the lens of principle-based ethics. The significant disadvantage experienced by ex-prisoners with intellectual disability warrants further attention by social researchers, and care must be taken not to further harm this group through the research process. Issues pertaining to the broad ethical concepts of integrity, justice, respect for persons and beneficence are examined to identify the degree to which they can guide the actions of the life story researcher. Examples are given as to how the researcher responded to difficulties as they arose and the authors discuss ways forward from a principle-based approach.
‘I’m a researcher!’: working together to gain ethical approval for a participatory research study
- Authors:
- HAM Maria, et al
- Journal article citation:
- Journal of Learning Disabilities, 8(4), December 2004, pp.397-407.
- Publisher:
- Sage
In any research team individuals will bring different experiences and expertise to the study, but if research is to be truly participatory then there must be the opportunity for all of the research team to be involved in all stages of the research process if they so wish. This includes the stage of seeking and gaining ethical approval. To date, however, there does not appear to have been anything published about how people with intellectual disabilities can be supported to actively participate in this stage of the research process. This article seeks to address this gap. Preparing for the ethics committee, and gaining ethical approval, constitute an important learning experience. The authors hope that in sharing this with others that they will be able to learn from this experience and that the opportunities for other people with intellectual disabilities to become involved in research will increase.
A vacuum in a minefield: ethnical dilemmas in research with learning disabled people
- Author:
- FRIAR Jeremy
- Journal article citation:
- Management Issues in Social Care, 7(1), January 2000, pp.19-26.
- Publisher:
- OLM Systems
The article looks at some basic assumptions about social research and then in more detail at the ethical questions surrounding informed consent, privacy and the role of the researcher, in the context of research with people with learning difficulties.
Interviewing people with learning disabilities about sensitive topics: a discussion of ethical issues
- Author:
- McCARTHY Michelle
- Journal article citation:
- British Journal of Learning Disabilities, 26(4), 1998, pp.140-145.
- Publisher:
- Wiley
Discussion ethical issues in the context of the author's PhD research, interviewing women with learning disabilities about their sexual experiences. The ethical concerns addressed include seeking informed consent, establishing confidentiality and anonymity, as well as reciprocity and identification between the researcher and researched. Argues for the development of clear principles of good practice.
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)