Applying the <scp>M</scp>ental <scp>C</scp>apacity <scp>A</scp>ct to research with people with learning disabilities

Jepson, Marcus

doi:10.1111/bld.12122

Cited by 15 publications

(29 citation statements)

References 25 publications

(28 reference statements)

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“…It is becoming clear from international scholarship, and from legislative changes in other jurisdictions, that supported decision-making under the CRPD requires something more substantive than the version set out in the MCA [16][17][18][19][20][21][22]. At present, the chapter on supporting decision-making in the MCA Code of Practice [23] (pp.…”

Section: Social Context: Disabled People's Decision-making Rightsmentioning

confidence: 99%

Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

Harding

Taşcıoğlu

2018

Societies

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The right to equal recognition before the law, protected by Article 12 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), mandates the use of supported decision-making practices to enable disabled people, particularly those with intellectual and/or psychosocial disabilities, to enjoy their legal capacity. Finding ways to translate this theoretical mandate into practice poses a number of particularly challenging socio-legal issues, which this research seeks to address. The English Mental Capacity Act 2005 (MCA) sets out a right to support with decision-making (s.1(3)), underpinned by a presumption of capacity (s.1 (2)). Qualitative interviews with intellectually disabled people, their supporters, and care and support professionals were undertaken to explore how disabled people make decisions in their everyday lives, the kinds of support they need, and the strategies for supported decision-making used in practice. Analysis of these interviews suggests that a range of supported decision-making techniques have been developed in practice and are effective in supporting everyday preferences and some life choices. Paradoxically, it appears that as decisions become more complex, the support available to disabled people reduces. Specifically, much less support is available for more difficult decisions around finances, healthcare and legal matters. We argue that the reasons for this are due to a web of regulatory, social and policy issues. We conclude that implementing the right to enjoy legal capacity through supported decision-making will require a combination of regulatory reform, social change and policy amendment.

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Section: Social Context: Disabled People's Decision-making Rightsmentioning

confidence: 99%

Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

Harding

Taşcıoğlu

2018

Societies

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“…Issues and dilemmas encountered while undertaking the research process are discussed here. These are accessing (Jepson, ) and recruiting participants (Goldsmith & Skirton, ), concern with obtaining informed consent and assessing capacity to consent to participate in the research (Carey & Griffiths, ), and collecting data, including providing support during the interview while discussing sensitive issues and aftercare (Tuffrey‐Wijne, ).…”

Section: Introductionmentioning

confidence: 99%

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

Cithambaram

Duffy

Courtney

2018

Brit J Learn Disabil

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Accessible Summary• People with intellectual disabilities are living longer than ever before.• Although people with intellectual disabilities are living longer, they still suffer from many illnesses. This may reduce their lifespan, and they may die earlier than other people and therefore require good end-of-life care whatever age they die.• Views and opinions of people with intellectual disabilities are important in determining what is good care at the end of life.• Ethical and practical guidelines in relation to recruitment, obtaining consent, and having conversation around sensitive issues are clearly discussed in this paper. AbstractBackground: In recent times, people with intellectual disabilities are increasingly included in research studies; however, their participation in sensitive research such as palliative and end-of-life care is less frequent. The reasons for not including people with intellectual disabilities in these kinds of research studies are issues in relation to obtaining consent, difficulty of recruiting, and engaging and collecting relevant information. This paper aimed to provide insight into how people with intellectual disabilities could be proactively included in research which is sensitive to their unique needs.Method: This study included 13 people with mild and moderate intellectual disabilities and explored their end-of-life care needs from their perspectives. After obtaining appropriate ethical approval, the research process was commenced. Applying the constructive grounded theory approach, data were collected and analysed by using the constant comparative method. A story from the book Am I Going to Die was used to enhance the understanding of the concepts of death and dying while collecting data.Findings: Participants with intellectual disabilities were recruited by establishing a close relationship with service providers. Capacity to consent and informed consent were fostered by carefully explaining the research process through easy-to-read information, and the data collection process was successfully completed by having a person-centred approach.Conclusion: People with intellectual disabilities can be successfully included in research. This is possible when their diverse needs are carefully considered, and appropriately developed protocols which meet their needs in relation to their capacities and abilities are utilised. This approach requires a flexible and inclusive research process. | 71CITHAMBARAM eT Al.

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“…Following Jepson (), it was anticipated that researchers might raise concerns about the risk of fluctuating capacity during the course of a study. This issue is rarely mentioned in the survey responses; one reason for this may be because the respondents report that many of the studies had excluded participants who lacked capacity.…”

Section: Discussionmentioning

confidence: 99%

“…Accordingly researchers carry an ethical and legal responsibility when obtaining informed consent to judge the capacity of participants and the quality of the consent itself. However, for studies involving adults with intellectual disabilities, there are difficulties in putting these guidelines into practice: Jepson () reports that judgements about capacity can fluctuate when recruiting potential participants with intellectual disabilities who for example exhibit good social communication strategies but have underlying difficulties with memory, or alternatively need further time to communicate their thoughts.…”

Section: Introductionmentioning

confidence: 99%

Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research

Hamilton

Ingham

McKinnon

et al. 2017

Brit J Learn Disabil

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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. AbstractBackground: 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 NHSpatients with intellectual disabilities and/or autism were invited to participate in a 22item 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 | 231 HAMILTON eT AL.

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Applying the Mental Capacity Act to research with people with learning disabilities

Cited by 15 publications

References 25 publications

Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

Supported Decision-Making from Theory to Practice: Implementing the Right to Enjoy Legal Capacity

End‐of‐life care research on people with intellectual disabilities: Challenges for proactive inclusion in an Irish context

Mental capacity to consent to research? Experiences of consenting adults with intellectual disabilities and/or autism to research

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