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

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. 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. 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. Five databases were searched: PubMed, EMBASE, Web of Science, PsycINFO, and CINAHL. 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. 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. 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).