Barriers and facilitators for coherent rehabilitation among people with inflammatory arthritis – a qualitative interview study

Abstract

Background People with chronic diseases have contact with several different professionals across hospital wards, municipality services and general practice and often experience lack of coherence. The purpose was to explore perceived barriers and facilitators to coherent rehabilitation pathways for health care users with inflammatory arthritis and how coherence can be improved. Methods Semi-structured individual interviews were conducted before a planned inpatient rehabilitation stay, 2-3 weeks and 4-6 months after discharge. Thematic reflexive analysis guided the analysis of data. Concepts of person-centred care, complex adaptive systems and integrated care were applied in the interpretations. Results In all, 11 participants with IA were included. There was one overarching theme, The importance of a person-centred approach, illuminating the significance of professionals who respect healthcare user’ preferences. To use a person-centred approach, demands professionals who are interested in exploring the persons own values, preferences and experiences and incorporate these when planning care and rehabilitation.Connected to the overarching theme, three sub-themes were derived; 1) Experiences of empowerment and dis-empowerment, covering that most want to be in control and act themselves, but felt overwhelmed and lost energy and they tended to give up; 2) Experiences of communication and coordination, encompass how people feel forced to take on coordination and communication tasks themselves although they do not always feel qualified for this. Some asked for a coordination person and 3) Facing everyday life after discharge, covering how initiatives taken by professionals were not always experienced as helpful after discharge. Some gave up and some tried to find alternative paths themselves. Conclusion Professionals taking a person-centred approach facilitated coherent rehabilitation pathways. This encompassed care with respect for individual needs and professionals who empowered patients to self-management. Furthermore, to be aware that interprofessional communication and coordination need to take place both between professional within the same department, between departments and between professionals in different sectors. After discharge, some patients were challenged in their everyday life when trying to follow the advice from the professionals. Professionals, who do not use a person-centred approach, hinder coherence. Patients thus feel compelled to take on communication and coordination tasks.

Development of a complex Interdisciplinary Nurse-coordinated SELf-MAnagement (INSELMA) intervention for patients with inflammatory arthritis

“…The developed INSELMA intervention is currently being tested in a feasibility study in accordance with the description of complex interventions [ 39 , 40 ].…”

“…Based on a previous study on barriers to and facilitators of coherence in rehabilitation [ 39 ], we planned to train experienced rheumatology nurses as coordinators in the INSELMA intervention, to ensure continuity and coherence across the different professionals involved as well as across primary and secondary health care. We also planned for the intervention to start with an initial assessment, goal-setting, and action planning [ 28 , 33 ].…”

“…The management of IA requires coordination and information between the patient, their relatives, and various HPs in primary and secondary care [ 27 , 35 ]. However, patients often experience a lack of coherence across both specialties and primary and secondary care related to insufficient communication and coordination between the HPs involved [ 36 – 39 ].…”