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

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.

Engaging patients in designing a transmural allied health pathway: A qualitative exploration of hospital‐to‐home transitions

“…Each patient has specific needs, and professionals must continually assess them to ensure that they provide comprehensible information at the right moment. Our findings confirmed the findings of previous studies that also emphasised that access to information is an essential element in the transitional decision‐making process and that the type of information needed, how it is delivered, and when should be tailored to patients' individual preferences, which is consistent with our results 34–36 . Furthermore, it is well established that patient recall is generally very low.…”

“…A qualitative study on transitional care decision‐making from the perspective of older people distinguished two subgroups of patients. The first subgroup did not want to be involved in making decisions related to their care and preferred relying on their formal care providers, whereas the second subgroup felt they were given no choice and that the transitional care decisions were forced upon them 34 . Kraun et al, therefore, pointed out that patients have different preferences that must be considered 34 .…”

“…The first subgroup did not want to be involved in making decisions related to their care and preferred relying on their formal care providers, whereas the second subgroup felt they were given no choice and that the transitional care decisions were forced upon them 34 . Kraun et al, therefore, pointed out that patients have different preferences that must be considered 34 . These findings suggest that listening to patient preferences and involving family members is crucial to providing person‐centred care.…”

“…34 Kraun et al, therefore, pointed out that patients have different preferences that must be considered. 34 These findings suggest that listening to patient preferences and involving family members is crucial to providing person-centred care. Future research should focus on incorporating these factors and clarifying the role of allied health professionals to enhance the integration and continuation of care during the hospital-to-home transition.…”

“…Our findings confirmed the findings of previous studies that also emphasised that access to information is an essential element in the transitional decision-making process and that the type of information needed, how it is delivered, and when should be tailored to patients' individual preferences, which is consistent with our results. [34][35][36] Furthermore, it is well established that patient recall is generally very low. Kessels and collegues found that, in general, up to 80% of the information given by healthcare professionals was forgotten, and this is confirmed by more recent studies, meaning that finding adequate interventions to address this continues to be a challenge.…”