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

Abstract

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

It is up to healthcare professionals to talk to us in a way that we can understand: informed consent processes in people with an intellectual disability

“…Much of the efforts to making health information accessible focus on producing information in ‘easy read’ format, which consists of short, simple sentences with accompanying pictures. However, there is a lack of high-quality research evaluating the effectiveness of easy read information, despite the frequency of its use 12–14…”

“…The paper by Dunn and colleagues [15] in this issue of BMJ Quality & Safety, is welcome new contribution to the literature, furthering our understanding of how to make the process of obtaining healthcare consent for people with an intellectual disability more equitable and accessible. The authors identified the barriers and enablers to obtaining healthcare consent by analysing 23 studies in a systematic review of the literature.…”

The need for co-educators to drive a new model of inclusive, person-centred and respectful co-healthcare with people with intellectual disability

“…People with intellectual disability continue to experience high levels of stigma, resulting in a denial of equal rights, psychological distress ( 14 , 15 ), and a disproportionately high risk of physical, sexual, emotional, financial, and disability-related abuse ( 16 , 17 ). This extends to healthcare settings, and GeneEQUAL co-researchers shared their adverse and often traumatic experiences of neglect and abuse, including not having the opportunity to make their own healthcare decisions, being ignored when they present with a support person, and feeling pressured to provide consent ( 18 ). In Australia, the 2023 Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Disability Royal Commission) found ongoing systemic neglect and abuse of people with intellectual disability within the health system ( 19 ).…”