A self-management intervention for people with multiple sclerosis: The development of a programme theory in the field of rehabilitation nursing.

BACKGROUND: People with multiple sclerosis (PwMS) have recurrent stays in rehabilitation clinics because of progressive disease. Nurses are key players in supporting PwMS through self-management interventions. However, little is known about the effectiveness, or sustainability of nursing interventions. The aim of this study was to develop a nurse-led self-management intervention and its programme theory for PwMS in one Swiss rehabilitation clinic. METHODS: On the basis of the Medical Research Council framework, we developed a theory-based programme for a nurse-led intervention. As key element of the intervention, we created a consulting guidance. RESULTS: As part of the programme theory, we created a systematic plan (action model) to illustrate how contextual resources (e.g., skills of the MS nurse and responsibilities of the multidisciplinary team) need to be coordinated. The change model shows how changes in the intervention lead to the achievement of outcomes (e.g., increased self-efficacy). The consulting guidance was refined by PwMS and four Swiss MS experts. CONCLUSIONS: An initial programme theory is a solid foundation for the next phases of the theory-based evaluations to refine the programme theory and sustainable implementation of the intervention.

"I would stress less if I knew that the nurse is taking care of it": Multiple Sclerosis inpatients' and health care professionals' views of their nursing-experience and nursing consultation in rehabilitation-a qualitative study.

BACKGROUND: Nurses play a crucial role in the multidisciplinary team in the rehabilitation of multiple sclerosis (MS) patients. However, little is known about patients' and health care professionals' (HCP) experiences (physicians, therapists) with nurses in rehabilitation. The aim of this qualitative study is (i) to describe the rehabilitation nursing care from the perspective of MS patients and HCPs and their view of a nursing consultations (ii) to elaborate similarities and differences of patients' and HCP's views. METHODS: We used a qualitative approach and selected the participants purposively. We conducted semi-structured individual MS patient (n = 15) and two focus groups interviews with HCPs (n = 8) in an inpatient rehabilitation clinic in Switzerland. We analysed the data using a structuring content analysis approach. First, we analysed patients' and HCPs' perspectives separately. Afterwards we elaborated similarities and differences descriptively. RESULTS: Main categories of patients' perspectives were "need for nursing care" and "relationship between nurses and MS patient". MS patients have mentioned the following points according to a nursing consultation: (i) nurses as advocates, (ii) involvement of relatives (iii) peer groups (iv) contact person. "Nurses in their scope of practice", "nurses as a part of the multidisciplinary team" and "the specifications in the treatment of MS patients" were main categories of HCPs' perspective. MS patients and HCPs demonstrated similarly the importance to have a nurse as a contact person in the multidisciplinary team and the need to integrate a nurse-led peer group in a nursing consultation. While HCPs prefer that relative always be included in nursing consultations, patients provided reasons when inclusion was not desirable. CONCLUSION: The results indicate that continuity in the nursing care for MS patients could contribute to a trusting nurse-patient relationship. This facilitates nurses to create a deeper understanding of MS patients and their needs in daily rehabilitation. The need for MS patients to share their concerns and receive scientifically proven knowledge from peers could addressed with a nurse-led peer group.