There is limited research exploring the knowledge and experiences of genetic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults with intellectual disability and eight support people were interviewed in this inclusive research study. The transcribed interviews were analysed using inductive content analysis. The findings were discussed in a focus group with ten adults with intellectual disability and in three multi-stakeholder advisory workshops, contributing to the validity and trustworthiness of the findings. Five main themes emerged: (i) access to genetic healthcare services is inequitable, with several barriers to the informed consent process; (ii) the experiences and opinions of people with intellectual disability are variable, including frustration, exclusion and fear; (iii) genetic counselling and diagnoses can be profoundly impactful, but translating a genetic diagnosis into tailored healthcare, appropriate support, peer connections and reproductive planning faces barriers; (iv) people with intellectual disability have a high incidence of exposure to trauma and some reported that their genetic healthcare experiences were associated with further trauma; (v) recommendations for a more respectful and inclusive model of genetic healthcare. Co-designed point-of-care educational and consent resources, accompanied by tailored professional education for healthcare providers, are required to improve the equity and appropriateness of genetic healthcare for people with intellectual disability.
There is limited research exploring the knowledge and experiences of genomic healthcare from the perspective of people with intellectual disability. This study, conducted in New South Wales (Australia), addresses this gap. Eighteen adults with intellectual disability and eight support people were interviewed in this inclusive research study. The transcribed interviews were analysed using inductive content analysis. Five main themes emerged: (i) access to genomic healthcare services is inequitable, with several barriers to the informed consent process; (ii) the experiences and opinions of people with intellectual disability are variable, with some feeling frustrated, excluded and frightened; (ii) genomic counselling and diagnoses can be profoundly impactful, but many faced barriers translating a genomic diagnosis into tailored healthcare, appropriate support, peer connections and reproductive planning; (iv) people with intellectual disability have a high incidence of exposure to trauma and can find genomic healthcare emotionally triggering; (v) recommendations for a more respectful and inclusive model of genomic healthcare. Co-designed point-of-care educational and consent resources accompanied by tailored professional education for healthcare providers are required to improve the equity and appropriateness of genomic healthcare for people with intellectual disability.
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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