Patients’ experiences and perspectives of challenges and needs related to non‐myeloablative stem cell transplantation: involving patients in developing a targeted rehabilitation programme

Aims and objectives To explore patients’ experiences and perspectives of their challenges and needs regarding their return to everyday life after allogeneic nonmyeloablative haematopoietic stem cell transplantation (NMA‐HSCT). Background NMA‐HSCT can cure patients with malignant blood diseases, but during the following years, the majority of patients suffer from serious side effects and complications. Hence, it is a major challenge for patients treated with NMA‐HSCT to rehabilitate, maintain physical and psychosocial functioning and return to a life in restored balance. Design The design was qualitative using the interpretive description methodology, and the theoretical framework symbolic interactionism inspired the interview guide and analysis. Methods Between April to May 2017, five focus group interviews were conducted with 15 outpatients in a haematological ward in Denmark. The patients were treated with NMA‐HSCT 8–30 months prior to the interviews. The study adheres to the Consolidated Criteria for Reporting Qualitative Research guidelines. Results The impaired functioning was the overarching theme and seemed to be the trigger entailing rehabilitation needs related to the following main themes: realising decline, adapting to changes, the meaning of motivation and reliance on relations. These findings seemed to affect and influence the patients' struggle for a return to an everyday life like before being diagnosed or just before undergoing NMA‐HSCT. Conclusion This study adds to our understanding of important elements to consider when developing a targeted rehabilitation programme. Relevance to clinical practice Based on our findings, the rehabilitation programme should encompass: extensive variation regarding how to address the impaired functioning through individualised approaches, multimodal interventions, interventions through several months with varying intensity, an interdisciplinary team approach supporting motivation and visualisation of every progress by tangible goal setting, communication regarding hope and support, extended supportive care for patients living alone and finally increased adherence through social sessions with relatives and fellow patients.