Healthcare decision-making by adults with learning disabilities: ongoing agendas, future challenges

Keywood, Kirsty; Flynn, Margaret

doi:10.1016/j.mppsy.2009.09.006

Cited by 7 publications

(5 citation statements)

References 1 publication

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“…And new recommendations for the return of incidental findings, announced very recently, suggest that an "opt-out" option should be offered to patients before testing. We argue that, instead of reasoning in terms of abstract/general obligations, a more practical approach is to develop sufficiently rich informed consent procedures so as to allow patient and families to fully express their preferences regarding unsolicited information and the modalities of communication of such information [57]. There is however an urgent requirement to develop a tool to improve the information given to patients and their families.…”

Section: Rethinking Informed Consent In Terms Of Enhanced Patient Parmentioning

confidence: 99%

Ethical Issues Raised by the Clinical Implementation of New Diagnostic Tools for Genetic Diseases in Children: Array Comparative Genomic Hybridization (aCGH) as a Case Study

Julia¹,

Soulier²

2015

J Clinic Res Bioeth

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High throughput genetic technologies offer the opportunity to gain precision in the diagnosis of numerous diseases and to better understand their molecular basis. However they bring new practical and ethical challenges, some of which are foreseeable and therefore amenable to the timely adoption of strategies to ensure that they are introduced and used in a just and beneficial manner. One way of foreseeing these challenges is to examine technologies that have already been transferred from research to the clinical setting in order to identify the ethical issues and develop strategies to move forward in an ethical way. One such model for new genetic technologies is Array Comparative Genomic Hybridization (aCGH), which has been gradually adopted in recent years as a standard technique in clinical genetics. CGH challenging current clinical practice regarding the detection and diagnosis of human chromosome abnormalities in intellectual disability (ID) and congenital malformations in children. Experience with aCGH has shown that it delivers an unprecedented volume of information for patients, counsellors, and health care providers but it also raises specific ethical challenges which can serve as signposts for potential issues with future, even more detailed, genetic technologies. These issues are described and illustrated through case histories, and their consequences for the patient-clinician relationship in genetic consultation are discussed. The consequences of employing this technology, as compared to the more traditional genetic diagnostic methods used in cases of intellectual disability are categorised into issues linked to 1) the vulnerable nature of patients who are mostly children, mentally retarded people or "future parents"; 2) the way in which information is controlled at each stage of the process, as a function of its potential relevance to the clinical condition being diagnosed, 3) the information related to conditions other than ID or "incidental findings" that become the rule with high throughput technologies. The issues highlighted by the clinical scenarios discussed here can be expected to occur with even greater frequency in the future as whole exome and whole genome sequencing are introduced. Building on our experience with the transfer and adoption of aCGH into clinical genetics, we have developed a grid of points to be considered when translating such technologies from research to clinic.

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Section: Rethinking Informed Consent In Terms Of Enhanced Patient Parmentioning

confidence: 99%

Ethical Issues Raised by the Clinical Implementation of New Diagnostic Tools for Genetic Diseases in Children: Array Comparative Genomic Hybridization (aCGH) as a Case Study

Julia¹,

Soulier²

2015

J Clinic Res Bioeth

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“…In which case, such persons are deemed not to have the necessary 'mental capacity' (5)(6)(7)(8)(9)(10). Now the law states that all adults are presumed competent to make their own health care decisions.…”

Section: Making Decisions-the Lawmentioning

confidence: 99%

The palliative care experiences of adults with learning disabilities/intellectual disability: The implications for ethical decision making

Flynn¹,

Salomons²,

Salomons³

et al. 2009

International Journal on Disability and Human Development

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This paper presents some of the ethical challenges facing services supporting adults with learning disabilities/intellectual disability with life-limiting conditions and arises from a qualitative investigation of the preparation for, and responses to their deaths. The study highlights the problems and differential responses of health and social care professionals to consent and ostensible treatment refusal and gives rise to concern that the principles promoting people's choices are in danger of being distorted to justify giving up too soon or too easily. The paper presents ideas about how health and social care professionals might work toward better outcomes.

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“…[23] However, people with intellectual disability currently experience inequitable and inaccessible informed consent processes. [19,24] To address this health gap, we must first understand the factors that contribute to inequitable and inaccessible consent. To the best of our knowledge, the only current review of informed consent for people with intellectual disability is a scoping review by Goldsmith et al (2008).…”

Section: Introductionmentioning

confidence: 99%

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

Dunn

Strnadová

Scully

et al. 2023

Preprint

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Objective To identify the factors that act as barriers to, or enablers of, proper informed consent for healthcare interventions for people with intellectual disability. Design Systematic literature review. No funding sources or conflicts of interest are reported. Data sources Databases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science, and CINAHL (last searched January 2022). Additional articles were obtained from an ancestral search of included articles and hand-searching of three journals. Eligibility criteria Included studies must examine the informed consent process for a healthcare intervention, be published from 1990 onwards, available in English, and be original research published in a peer-reviewed journal, and participants must be adults and relevant stakeholders (including people with intellectual disability, health professionals, carers or support people, or relevant professionals). Synthesis of results Inductive thematic analysis using a six-phase method was used to identify factors affecting informed consent. The QualSyst tool was used to assess quality and biases of included studies. Results Twenty-three studies were included, published from 1999 to 2020, with a mix of qualitative (n=12), quantitative (n=6) and mixed-methods (n=4) studies. Study sizes ranged from 13 to 604 (median 23), and participants included people with intellectual disability, health professionals, carers and support people, and other professionals working with people with intellectual disability. Six themes were identified: health professionals' attitudes towards and lack of education about informed consent, provision of health information, involvement of carers and other support people, systemic constraints, specific care needs due to patient-related factors, and effective communication between health professionals and patients. Limitations included the heterogeneity of studies, the focus on people with mild intellectual disability only, lack of reflexivity, and limited use of inclusive co-design research methods (n=5). Conclusions Health professionals' attitudes and lack of training in informed consent for people with intellectual disability is a major barrier to proper healthcare informed consent for people with intellectual disability. The lack of accessible health information provided for people with intellectual disability also prevents proper informed consent and decision-making. Other factors are the involvement of carers and support people, inherent systemic constraints, failure to meet specific care needs of people with intellectual disability, and ineffective communication by health professionals. Further research, particularly using inclusive co-design methods, is needed to understand these factors. Practical solutions to address these barriers, such as creating accessible information resources and training health professionals, are needed to support improved proper healthcare informed consent for people with intellectual disability. Systematic review registration PROSPERO number CRD42021290548

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Healthcare decision-making by adults with learning disabilities: ongoing agendas, future challenges

Cited by 7 publications

References 1 publication

Ethical Issues Raised by the Clinical Implementation of New Diagnostic Tools for Genetic Diseases in Children: Array Comparative Genomic Hybridization (aCGH) as a Case Study

Ethical Issues Raised by the Clinical Implementation of New Diagnostic Tools for Genetic Diseases in Children: Array Comparative Genomic Hybridization (aCGH) as a Case Study

The palliative care experiences of adults with learning disabilities/intellectual disability: The implications for ethical decision making

Exploring the Barriers and Enablers for the Equitable and Accessible Informed Healthcare Consent Process for People with Intellectual Disability: A Systematic Literature Review

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