Cross-sectorial collaboration on policy-driven rehabilitation care models for persons with neuromuscular diseases: reflections and behavior of community-based health professionals

Abstract

Background Persons with neuromuscular diseases (NMDs) often experience complex rehabilitation needs due to the disease’s impact on their functioning and progression of their diseases. As a consequence of legislation and “policy power”, community-based health professionals function as gatekeepers to the rehabilitation trajectory for persons with NMDs in a field where the other professionals are the specialists. Aim To investigate community-based health professionals’ reflections on and behaviors regarding collaboration with a tertiary rehabilitation hospital in a cross-sectorial rehabilitation care model with the overall aim of providing high quality rehabilitation for persons with NMD. Methods The design is qualitative and uses interpretive description methodology and the theoretical lens of Edgar Schein’s three levels of organizational culture and leadership. An ethnographic fieldwork was conducted from September 1, 2019 to January 30, 2020. Eighty-four community-based health professionals were included and 17 of them were interviewed in four semi-structured focus group interviews ( n = 10) and seven individual interviews ( n = 7). In addition, 151 pages of observation data were generated. The study adheres to the COREQ guidelines. Results The analysis showed three themes of importance for the collaboration: Policy and legislation navigation represented that collaboration on rehabilitation was affected by legislation as a management tool with “the case” as the core element, and goal dilemmas. Cross-sectorial knowledge exchange promoted collaboration on coordinated and facilitated rehabilitation and knowledge sharing as a firm anchoring. Patient ownership negotiations implied collaboration was influenced by knowledge founded power and gatekeeping as a navigation tool. Conclusion Three levels of organizational culture and leadership were identified, and this overall structure guided the community-based health professionals in their work and in the complex organizational landscape of collaboration between disconnected healthcare systems. The findings provided insight into behavior and attitudes and the content and the values held by the professionals collaborating across sectors. Future collaboration in rehabilitation models should be multiprofessional and team based. The findings emphasize that it is imperative that managements and professionals strive to strengthen the structure of the collaborative team spirit because this will ensure well-planned, coordinated, and conducted rehabilitation for persons with NMD and enable and support future cross-sectorial collaboration in this rehabilitation model for these persons.

Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home

“…This study was conducted at the National Rehabilitation Center for Neuromuscular Diseases (RCFM), a highly specialized neuromuscular rehabilitation hospital at which around 3,500 people with NMD are registered—most of the people with NMDs living in Denmark ( Handberg & Werlauff, 2022 ; RCFM, 2017 , 2024 ). Participants were recruited from RCFM’s patient register by a purposive sampling ( Thorne, 2016 ).…”

Leadership and Negotiation in Public Health Management: A Systematic Review of the Literature

“…Understanding the dynamic nature of processes is an essential task for political leaders because they, as moral agents, are called upon to shape and mediate the processes related to their administration. Intersectoral knowledge exchange promotes collaboration and facilitates knowledge sharing for better health service performance (Handberg and Werlauff, 2022). Implementing change in health and care delivery services is often hampered by organisational micropolitics, where it becomes relevant for those leading change to develop and use political skills and behaviours to understand and mediate that policy (Mou et al, 2022).…”