Transitions in care: What can family-members of people who struggle with substance use teach us about care-integration? Findings from the German AnNet Study

摘要

Introduction : Substance use disorders (SUD) account for high shares of healthcare spending in Germany. Hikes in multi-morbidities and unmet social-needs create complex service-needs and increasingly require transitions between various social and healthcare settings as integral part of support-networks. Under the shift to integrated and patient-centered healthcare, the scientific awareness of the importance of involving family-members (FMs) as participants in addiction-care steadily grew. Whereas studies report family-members’ exposure to higher levels of stress and unpredictability which can lead to decreased well-being, very little attention has been given to how FMs experience participation in addiction-care and care-transitions in the wider context of their own support-needs and care and life-goals. Methods : Between March 2016 and March 2017 in-depth interviews and focus groups with 81 FMs have been conducted and analyzed in accordance with grounded theory methodology. Because of the exploratory nature of the investigation, only a few preconceived themes were brought to the analysis. An open-ended interview guide was used with questions incorporating the eight dimensions of care as identified by the Picker Commonwealth Program for Patient-Centered Care (e.g., access, coordination, involvement of family members, preparation for discharge, transitions in care etc.) to gain better insight into care-transitions and support-needs from a FM perspective. Outcomes : Building upon and complementing the existing literature on provider and organization perspectives on integrated-care, which often focus on a specific setting (e.g., primary or specialty care), disease (e.g., legal or illegal drug use), or pathway element (e.g., transition to care), findings add a FM perspective on support-networks and transitions. Crossing care-boundaries within and between health, health-related, and social care services, FM accounts highlight on a systemic and service level how barriers to integration are not only based in different funding mechanisms and organizational capacities, but also in fragmented care systems and ideological differences; and underexplored pathways among addiction services, primary care, and mental health and social services, leading to support overlaps and collaboration gaps. Consequentially, family members are often left to navigate healthcare transitions, locate resources, and manage patient care with limited information and support.