Equitable and accessible informed healthcare consent process for people with intellectual disability: a systematic literature review

Abstract

ObjectiveTo identify factors acting as barriers or enablers to the process of healthcare consent for people with intellectual disability and to understand how to make this process equitable and accessible.Data sourcesDatabases: Embase, MEDLINE, PsychINFO, PubMed, SCOPUS, Web of Science and CINAHL. Additional articles were obtained from an ancestral search and hand-searching three journals.Eligibility criteriaPeer-reviewed original research about the consent process for healthcare interventions, published after 1990, involving adult participants with intellectual disability.Synthesis of resultsInductive thematic analysis was used to identify factors affecting informed consent. The findings were reviewed by co-researchers with intellectual disability to ensure they reflected lived experiences, and an easy read summary was created.ResultsTwenty-three studies were included (1999 to 2020), with a mix of qualitative (n=14), quantitative (n=6) and mixed-methods (n=3) studies. Participant numbers ranged from 9 to 604 people (median 21) and included people with intellectual disability, health professionals, carers and support people, and others working with people with intellectual disability. Six themes were identified: (1) health professionals’ attitudes and lack of education, (2) inadequate accessible health information, (3) involvement of support people, (4) systemic constraints, (5) person-centred informed consent and (6) effective communication between health professionals and patients. Themes were barriers (themes 1, 2 and 4), enablers (themes 5 and 6) or both (theme 3).ConclusionsMultiple reasons contribute to poor consent practices for people with intellectual disability in current health systems. Recommendations include addressing health professionals’ attitudes and lack of education in informed consent with clinician training, the co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability.PROSPERO registrationCRD42021290548.

Principles for Service Delivery: Best Practices for Cervical Screening for Women with Disabilities

“…Providing co-produced materials will also enhance the appropriateness of the information used. 70 Where the woman does not have the capacity to consent, someone else “responsible” will have to do so on her behalf, or the family and health-care worker can use a best interest decision-making process to agree how to proceed. In some cases, an independent advocate may be provided to ensure the best interests of the individual are fulfilled.…”

“…Consequently, health-care workers require training on disability so that they have the right knowledge, skills and attitudes to provide high quality services to people with disabilities. 70 , 73 The curriculum should include training on: awareness of rights and needs of women with disabilities with respect to cervical cancer screening, the ability to use reasonable accommodations, alternative communication options and approaches to taking consent for people with intellectual impairments. Information to aid stigma reduction should also be included, such as challenging assumptions that women with disabilities are asexual and therefore do not require cervical cancer screening.…”

Working together with people with intellectual disability to make a difference: a protocol for a mixed-method co-production study to address inequities in cervical screening participation

“…The increased rates of sexual assault and abuse for women and girls with disability exposed by the Royal Commission ( 21 ), highlight the necessity of approaches to prevent triggering and re-traumatisation through cervical screening which could potentially lead to the re-experiencing of thoughts, feelings or sensations experienced at the time of such a traumatic event or circumstance in a person’s past ( 39 ). In addition to training in trauma-informed care, a recent systematic review shows that clinician training is central to addressing healthcare providers’ attitudes to and lack of education in informed consent for people with intellectual disability ( 32 ). Extension of the Family Planning Australia Supporting Decision-making Tool ( 48 ) as part of the co-produced healthcare provider training materials will contribute to filling this gap with implications for informed consent beyond cervical screening to other healthcare procedures.…”

“…Extension of the Family Planning Australia Supporting Decision-making Tool ( 48 ) as part of the co-produced healthcare provider training materials will contribute to filling this gap with implications for informed consent beyond cervical screening to other healthcare procedures. The systematic review also recommends co-production of accessible information resources and further inclusive research into informed consent for people with intellectual disability to make this process equitable and accessible ( 32 ). The ScreenEQUAL cervical screening resource for people with intellectual disability, together with supporting materials for families and support people and healthcare provider training materials, will help address these inequities and lay the foundations for an accessible informed consent process for cervical screening.…”

“…Second, the decision is not influenced or forced. Third, the person must have capacity to make the decision ( 31 , 32 ). To ensure valid consent, this process must be adjusted to fit the person’s needs so they can understand and express themselves well.…”