Capacity building and intellectual disability health services: an Evidence Check

Sax Institute
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2017, pp. 1 - 76
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This report presents the findings of an Evidence Check on capacity building and intellectual disability health services. The NSW Ministry of Health commissioned the University of Technology Sydney (UTS) Faculty of Health’s Centre for Health Services Management to conduct a rapid review that sought to identify and analyse the available evidence on methods to improve the capacity of healthcare services and systems to respond to the needs of people with intellectual disabilities (PWID). The Evidence Check was conducted in three phases. Phase 1 was essentially a proof of concept search to identify whether there was enough evidence available to proceed. Phase 2 was a systematic scoping review including a primary analysis of any existing reviews addressing the provision of healthcare to PWID. The third phase is a review and analysis of single studies not covered by the preceding reviews and of the grey literature from selected countries. This report provides an analysis of a meta review of 35 systematic or comprehensive literature reviews identified in the first phase of the project. The research team crosschecked the remaining studies with the reviews, identifying 35 studies that were included and an additional 69 that were not. These additional studies were reviewed separately for this report along with an overview of the grey literature. There is abundant evidence of the higher health risks and lower quality of care provided to PWID. There is also universal acknowledgement of the limited amount of research available that address strategies for the improvement of healthcare for PWID. The evidence that is available, however, points to several potential areas of capacity building, including structural responses, role definitions and development, communicative strategies, clinical, ethical/research and environmental responses. The provision of adequate care to PWID is complex because of both the complexity of many intellectual disability conditions and a longstanding failure to respond adequately to the needs and concerns of individuals that have them. As a result, any form of capacity building requires a holistic systems approach that acknowledges the shortfalls — and potential improvements — at every point of interaction with health systems and services. There is continued tension between the development and provision of specialists and generalist services. This tension does not arise out of an either one-or-the-other paradigm, rather it emerges from an understanding that due to the current shortfall in service provision and the preferences of PWID, both will be needed. Areas of particular focus in the literature are: palliative care; sexual and reproductive health; preventative and cancer screening; and mental and forensic health services. There is a continued need for the evaluation and capacity building in children’s services, both generalist and specialist. A clear starting point, therefore, is the mapping of exemplar journeys to identify individual, group and systems vulnerabilities both for PWID in general and for specific individuals with intellectual disabilities (ID), for example, those with dual diagnoses, pregnant women and older people. This mapping process also provides a way of understanding the current and changing roles of support staff (ie paid assistants) and carers for PWID, and their own interactions with healthcare systems.
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