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Background: People with intellectual disabilities are living longer, with increasingly complex needs and their family caregivers may have a broad scope of unmet needs. Aims: To identify the most common needs of family caregivers, to identify gaps in the literature, and distinguish the information needs of family caregivers of people with intellectual disabilities who require palliative care. Methods: This two phase literature review used five electronic databases (CINAHL, PsycINFO, Medline, Cochrane and Pubmed). Phase 1 involved a review of systematic reviews of the needs of family caregivers across healthcare settings. Phase 2 explored the commonly reported information needs from phase 1, in relation to family caregivers of people with intellectual disability who require palliative care. There was no research explicit to the information needs of these family caregivers. Findings: This review reveals potential information needs which may exist, guided by the palliative caregiving literature; alluding to information needs surrounding the disease, finances, and psychological or practical support. Conclusion: It is surmised that a greater scope of informational need exists for this population and further research is pertinent for international healthcare settings. [ABSTRACT FROM AUTHOR]

Background: Palliative care day services provide a safe environment for people with palliative care needs, enabling them to access a range of services while acting as a respite services for family caregivers. Viewed as marginal services, they are often under resourced and under researched. The aim of this study was to understand how palliative day care services contribute to client care from the perspective of management and hospice multidisciplinary teams. Methods: A descriptive qualitative study, using six focus groups conducted with staff at three United Kingdom hospices in England, Scotland and Northern Ireland. Thirty-five participants were recruited, including management and staff. Discussions were transcribed and analysed thematically. Results: Four key themes emerged: (1) variations of care, beyond heterogeneity of patients; (2) unclear referrals and inconsistent patient population; (3) recognising strengths and challenges and (4) an uncertain future. A major focus of group discussions was the model of care and the benefits of the service, however the importance of demonstrating services' effectiveness and value for money was highlighted. Conclusions: Management and hospice staff believed day-services to be a helpful introduction to palliative care, providing both social and medical support. Economic pressures and patient demand were influencing them to move from a social model to a hybrid model. Further research is needed to understand the effectiveness of the service. [ABSTRACT FROM AUTHOR]