Search

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.

Objectives: People with intellectual disabilities are living longer, and many require palliative care. There is a lack of evidence regarding information needs which may exist for their family caregivers. This study aimed to determine the informational needs of family caregivers of people with intellectual disabilities who require palliative care.Methods: A qualitative, exploratory design was underpinned by the Transactional Model of Stress and Coping and the Transformative Paradigm. The study involved five Health and Social Care (HSC) Trusts and two Hospices in one region of the United Kingdom. Family caregivers (n = 10) participated in individual interviews. HSC professionals' (n = 28) perceptions of informational needs were explored within focus groups (n = 6).Results: Family caregivers reported information needs chiefly concerning the disease, financial entitlements, and practical support which could change over the disease trajectory. Findings evidence the expertise of long-term family caregivers, prior to the end of life. Palliative care and intellectual disability teams acknowledged their role to work in partnership and facilitate access to information. Recommendations were mapped onto a co-designed logic model.Significance Of Results: New insights into the specific informational needs of this family caregiving population. A co-designed logic model presents these needs and how they may be addressed. Central co-ordinators have been advocated for these caregivers. This model could have international applicability for similar family carers, supporting people with other disabilities or cognitive impairment, and should be further explored. [ABSTRACT FROM AUTHOR]

Qualitative research is conducted using methods such as one-to-one interviews and focus groups, and incorporates an element of subjectivity. In learning disability research, this subjectivity could be considered a positive attribute, enabling researchers to consider context, emotions and observations when interpreting data. Reflexivity can be used by researchers to manage their thoughts, feelings and preconceptions when undertaking research in emotive contexts. It has also been identified that providing evidence of reflexivity increases the trustworthiness and rigour of qualitative research. In this article the author presents a personal account of how using reflexivity enhanced research they were conducting and improved the rigour of its conduct and reporting. The article also details the role of reflexivity in learning disability practice and makes recommendations for how this could be implemented. [ABSTRACT FROM AUTHOR]