Older peoples' and informal caregivers' experiences, views, and needs in transitional care decision-making: a systematic review

Background: Older people often experience multiple care transitions. These care transitions are critical and stressful moments for both older people and their informal caregivers alike and can have a negative effect on long-term outcomes. Greater attention needs to be paid to the involvement of older people and their informal caregivers in the process of decision-making when it comes to transitional care. Objective: To provide an overview of older people's and their informal caregivers' experiences with decision-making, particularly when facing a transition from home to an institution for medical treatment or long-term care, or vice versa. Design: A systematic literature review, perfomed within the scope of the TRANS-SENIOR network and reported according to the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines. Data sources: Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL. Review methods: This review included qualitative empirical reports that were published from the inception of the respective databases up to April 2020. The search strategy was based on five main concepts: ‘old age’, ‘informal caregivers’, ‘Involvement in decision-making’, ‘transitional care’, and ‘home’ as a location for the start or the end of the transition. All abstracts and full texts were screened double-blind, following specific eligibility criteria. Data extractions were performed by two independent reviewers and the quality of studies was assessed. Findings: We included a total of 22 studies. The most relevant themes from the experiences of older people reported were: a) feelings of reduced autonomy and increased dependency, b) preferences for involvement in decision-making c) the influence of healthcare professionals, and d) support from informal caregivers. The most relevant themes from the experiences of informal caregivers were: a) informal caregivers' involvement in the decision-making process, b) the burden of responsibility, and c) barriers to decision-making. Overall, the experiences of older people and their informal caregivers varied considerably and were sometimes contradictory. Conclusions: When facing care transitions, older people express feelings of reduced autonomy and increased dependency. Their preference regarding involvement in decision-making varies considerably and their decisions are influenced by healthcare professionals and the support from informal caregivers. Informal caregivers find it important to be involved in the decision-making process, even though they experience the burden of responsibility and report specific difficulties relating to decision-making. Future studies should focus on methods by which to empower older people and informal caregivers in transitional care decision-making. This systematic review has been registered in Prospero (CRD42020167961).