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People with life-limiting diseases, who are no longer receiving active or curable treatment, often state their preferred place of care and death as the home. This requires coordinating a multidisciplinary approach, using available health and social care services to synchronize care. Family caregivers are key to enabling home-based end-of-life support; however, the 2 elements that facilitate success – coordination and family caregiver – are not necessarily associated as being intertwined or one and the same. This narrative review explores family caregiver experiences of coordinating end-of-life care in the home setting.
Methods
Studies were identified systematically following the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A search of 5 databases (CINAHL, AMED, MEDLINE, Joanna Briggs Institute for Systematic Reviews, and the Cochrane Database) was conducted using Medical Subject Headings search terms and Boolean operators. Seven hundred and eighty papers were screened. Quality assessment was conducted using the JBI Critical Appraisal Checklist for Qualitative Research. Characteristics of included studies were extracted using the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) extraction tool.
Results
Ten qualitative studies were included. A meta-aggregative approach was used to assemble findings and categories extracted from the included papers, which led to identification of 3 overall themes: (1) family caregiver identity, (2) strategies for care, and (3) practicalities of care.
Significance of results
Research suggests there should be a designated care coordinator to support people nearing the end of life at home. However, this review shows that family caregivers intrinsically take on this role. Their experiences, frequently share commonalities across different cultures and regions, highlighting the universal nature of their challenges. Difficulties associated with providing home-based care are evident, but the undertaking of care coordination by relatives highlights a need for a change in approach. Future studies could explore the impact of having a designated “facilitator” or single point of contact for families, as well as the development of tailored communication strategies.
To examine the feasibility of implementing nine behavioural economics-informed strategies, or ‘nudges’, that aimed to encourage home dinner vegetable intake among low-income children.
Design
Caregivers were assigned six of nine strategies and implemented one new strategy per week (i.e. 6 weeks) during three dinner meals. Caregivers recorded child dinner vegetable intake on the nights of strategy implementation and rated the level of difficulty for assigned strategies. Baseline data on home vegetable availability and child vegetable liking were collected to assess overall strategy feasibility.
Setting
Participants’ homes in a large Midwestern metropolitan area, USA.
Pairwise comparisons showed that child dinner vegetable intake for the strategy ‘Serve at least two vegetables with dinner meals’ was greater than intake for each of two other strategies: ‘Pair vegetables with other foods the child likes’ and ‘Eat dinner together with an adult(s) modelling vegetable consumption’. Overall, caregivers’ mean rating of difficulty for implementing strategies was 2·6 (1=‘not difficult’, 10=‘very difficult’). Households had a mean of ten different types of vegetables available. Children reported a rating ≥5 for seventeen types of vegetable on a labelled hedonic scale (1=‘hate it’, 5–6=‘it’s okay’, 10=‘like it a lot’).
Conclusions
Behavioural economics-informed strategies are feasible to implement during dinner meals, with some strategies differing by how much they influence vegetable intake among low-income children in the home.
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