Transitional care decision‐making through the eyes of older people and informal caregivers: An in‐depth interview‐based study

Abstract

Abstract Background Older people with multifaceted care needs often require treatment and complex care across different settings. However, transitional care is often inadequately managed, and older people and their informal caregivers are not always sufficiently heard and/or supported in transitional care decision‐making. Objective To explore older people's and informal caregivers' experiences with, views on, and needs concerning empowerment in transitional care decision‐making. Methods A qualitative descriptive study was conducted in the TRANS‐SENIOR consortium's collaborative research using semistructured in‐depth interviews between October 2020 and June 2021 in Flanders, Belgium. A total of 29 people were interviewed, including 14 older people and 15 informal caregivers who faced a transition from home to another care setting or vice versa. Data were analysed according to the Qualitative Analysis Guide of Leuven. Findings Five themes were identified in relation to the participant's experiences, views and needs: involvement in the decision‐making process; informal caregivers' burden of responsibility; the importance of information and support; reflections on the decision and influencing factors. Conclusions Overall, older people and informal caregivers wished to be more seen, recognised, informed and proactively supported in transitional care decision‐making. However, their preferences for greater involvement in decision‐making vary and are affected by several factors that are both intrinsic and extrinsic. Therefore, healthcare systems might seek out age‐tuned and person‐centred empowerment approaches focusing on older people's and informal caregivers' empowerment. For future studies, we recommend developing specific strategies for such empowerment. Patient or Public Contribution Older persons' representatives were involved in designing the TRANS‐SENIOR programme of research, including the current study. Healthcare professionals and nursing care directors were involved in the study design and the selection and recruitment of participants.

Keywords

• decision‐making
• empowerment
• home care
• nursing home
• patient participation
• transitional care