Patients and informal caregivers in the lead: a qualitative study on the experiences of patients, informal caregivers, and healthcare professionals with involvement in treatment, e-health and self-management programs.

BACKGROUND: A significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients' and informal caregivers' ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy's activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals. METHODS: We conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis. RESULTS: Patients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care. CONCLUSION: Stakeholders' experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.

Unravelling Low-Value Care Decision-Making: Residents' Perspectives on the Influence of Contextual Factors.

BACKGROUND: Several initiatives have been developed to target low-value care (i.e. waste) in decision-making with varying success. As such, decision-making is a complex process and context's influence on decisions concerning low-value care is limitedly explored. Hence, a more detailed understanding of residents' decision-making is needed to reduce future low-value care. This study explores which contextual factors residents experience to influence their decision-making concerning low-value care. Methods: We employed nominal group technique to select four low-value care vignettes. Prompted by these vignettes, we conducted individual interviews with residents. We analyzed the qualitative data thematically using an inductive-deductive approach, guided by Bronfenbrenner's social-ecological framework. This framework provided guidance to 'context' in terms of sociopolitical, environmental, organizational, interpersonal, and individual levels. RESULTS: In 2022, we interviewed 19 residents from a Dutch university medical center. We identified 33 contextual factors influencing residents' decision-making, either encouraging or discouraging low-value care. The contextual factors resided in the following levels with corresponding categories: (1) environmental and sociopolitical: society, professional medical association, and governance; (2) organizational: facility characteristics, social infrastructure, and work infrastructure; (3) interpersonal: resident-patient, resident-supervising physician, and resident-others; and (4) individual: personal attributes and work structure. CONCLUSION: This paper describes 33 contextual factors influencing residents' decision-making concerning low-value care. Residents are particularly influenced by factors related to interactions with patients and supervisors. Furthermore, organizational factors and the broader environment set margins within which residents make decisions. While acknowledging that a multi(faceted)-intervention approach targeting all contextual factors to discourage low-value care delivery may be warranted, improving communication skills in the resident-patient dynamics to recognize and explain low-value care seems a particular point of interest over which residents can exercise an influence themselves.