Post-discharge “continuum of care” clinical pathway (CP) for persons with severe neuro-disabilities – qualitative research to model needs-based community healthcare, capture the real-life care situation, and assess the appropriateness of the CP's concept with input from community- and hospital-based healthcare professionals

Objective To document opinions and experiences of representatives from three different interest groups regarding “needs-based healthcare” of people with severe neuro-disability requiring home-based specialized intensive care nursing (HSICN) and continued community-based rehabilitation efforts, to evaluate the appropriateness of an evidence- and guideline-based clinical pathway (CP) for trans-sectoral specialist support by regional outreach follow-up teams (ROFT) from inpatient neurological early rehabilitation (NER) and its implementation. Methods Qualitative exploratory study design: Semi-structured group-interviews with representatives of the three stakeholder groups, i.e., HSICN, therapists in the community (THER-C), and ROFT followed by a multi-stage analysis and interpretation process of their responses. Results Three interviews-sessions were conducted with a total of 11 group-representatives. A total of 301 individual responses (i) were documented. Based on their experience, the interview partners identified a multitude of relevant aspects for an appropriate needs-based healthcare (i = 80) of the specific clientele, as well as facilitators (i = 44) and barriers (i = 82) for its implementation. The appropriateness of the developed CP was largely confirmed (i = 20). Support by a ROFT (i = 33) was mostly positively evaluated. Additional aspects considered necessary for needs-based healthcare (i = 42) were articulated. Conclusion The proposed and implemented clinical pathway as a model of “needs-based healthcare” in the community for people with severe neuro-disability and the role of ROFT as an enabling specialist function supporting community healthcare were considered appropriate. The qualitative research identified several system-level constraints as barriers. Some were context-specific, i.e., remuneration for coordination time, fragmented funding streams, and incentives around decannulation/weaning. As presumably universally relevant design principles for the trans-sectoral care approach were identified: multiprofessional workforce capacity and minimum competency standards in the community, center-based specialist support for the community, case management, structured interprofessional exchange, shared documentation, and a potential role of telemedicine. The absence of patient and caregiver perspectives is a relevant limitation to be overcome by future research.