Background
Evidence suggests that parents with intellectual disabilities can be “good enough” parents with appropriate support that focuses on the whole family. This paper brings together theories of vulnerability with an ethics of care approach to reflect on challenges for practitioners in supporting parents, drawing upon data from a study carried out in Scotland.
Method
An online survey was administered to practitioners in three settings, and follow‐up interviews were carried out with key informants.
Results
Pockets of good practice existed but a number of barriers to supporting families remained. These related to a lack of accessible information, difficulties in identifying and engaging with families at an early stage and poor joint working across agencies.
Conclusion
The study concludes by arguing that practitioners' constructions of families as “vulnerable” reflects negatively on their perceived capacity to parent, creating further barriers in accessing appropriate support and reducing expectations of success.
People with an intellectual disability experience high levels of social exclusion and a range of health inequalities. Increased inclusion and participation in healthcare decision making have been identified as key to promoting inclusion in health and social care. However, achieving these objectives requires increased recognition of the communication and health literacy needs of individuals with an intellectual disability and consideration of the appropriateness of the information currently provided. In this article, we report the results of a pre-COVID-19 qualitative study exploring the provision and use of accessible information to support the healthcare inclusion of individuals with an intellectual disability. A total of 35 clinicians participated in focus group discussions, and 10 people with intellectual disabilities and 10 carers were interviewed regarding their experiences of using accessible health-related information. Qualitative data analysis using a framework approach highlighted the crucial role of communication partners when using accessible information, deficits in current National Health Service (NHS: UK’s publicly funded health care system) information provision in the UK, and possible broader relevance of accessible resources. The implications of these findings for the provision of accessible information in a post-COVID-19 environment are explored, and recommendations are made for the increased integration and theory-driven research to inform the provision, content, and use of health-related information, especially the provision of online information, in the future.
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