Aim and objective To explore how working‐age adults experience patient participation in hospital haemodialysis. Background End‐stage kidney disease is a progressive, chronic condition imposing patients with high treatment burdens and low health‐related quality of life. Patients face multiple medical decisions related to living with kidney failure. Given their frequent interaction with health services, patient participation may be of special value. Design Qualitative design with a narrative approach. Methods In 2018, eleven patients aged 35–64 years undergoing hospital haemodialysis participated in individual interviews. All interviews were analysed using a narrative approach. Reporting followed the Consolidated criteria for Reporting Qualitative Research guidelines. Findings The patients’ narratives of participation comprised three themes following their healthcare trajectory: Informed, but not involved in treatment choices; Duality of care and control; and Frail trust reflecting collaborative deficiencies. The patients received good information about dialysis, but were not involved in choice of treatment modality. Professional work, as well as the nature of treatment, contributed to restricted patient autonomy. Patients’ trust suffered from collaborative deficiency generating delays in their treatment trajectories, and patients extended their responsibility into the coordination of transitions as a way of coping with these issues. Conclusions The study identified challenges related to patient involvement and interdisciplinary collaboration. Involving patients through dialogue and acknowledging their experiences, preferences and lifestyles may strengthen the mutual patient–professional understanding of treatment. Despite increased focus on seamless trajectories, patients face obstacles regarding interdisciplinary collaboration and coordination of health services. Relevance to clinical practice The findings indicate a want of individually customised care for people requiring dialysis. Patients need to be involved in the choice of treatment modality as well as decisions related to the current treatment. Information must include potential consequences of the different treatment modalities. Health services need to strengthen collaboration in order to secure treatment continuity and patient involvement.

Background For individuals in need of dialysis, patient participation is important when determining care goals and in decision making regarding dialysis modality. Nephrologists hold a key role in delivering evidence-based healthcare that integrates patient preferences and values throughout the trajectory, and their experiences with patient participation are important for improving health care. The aim of this study was to explore nephrologists’ experiences with patient participation in different phases of the end-stage renal disease trajectory for working-age individuals who require dialysis. Methods This explorative study comprised interviews with ten nephrologists from four different dialysis units in Central Norway. We analysed the interviews by applying an interpretive phenomenological approach. Results Nephrologists had varied experiences with patient participation throughout the different phases of the treatment trajectory. During decision making on the dialysis modality, nephrologists emphasised patients’ choices in two approaches. In the first approach, they expected patients to choose the modality based on the provided information, which could be actively steered. In the second approach, they recognised the patients’ values and lifestyle preferences through shared decision-making. Within hospital haemodialysis, nephrologists considered patients’ self-care activities equivalent to patient participation, seeing self-care as a source of patient empowerment. They identified divergent patient–professional values and organisational structures as barriers to patient participation. Conclusion Our study shows that nephrologists have different approaches to patient participation in different phases of the end-stage renal disease trajectory. Individual understanding as well as organisational structures are important factors to address to increase patient participation in end-stage renal disease care. Shared decision making, in which patient values are balanced against biomedical treatment targets, allows for mutual agreement between patients and healthcare professionals concerning medical plans and minimises the potential for patient–professional tensions.

Aim To develop knowledge of nurses’ perceptions of participation for patients treated with haemodialysis and their next of kin. Design A qualitative study with a hermeneutic approach. Methods The data were collected in 2015 through focus groups with 13 nurses in Central Norway. Results The nurses reported that patient participation ranging from non‐involvement to shared decision‐making was related to whether dialysis was initiated as acute or scheduled. The restrictions required in chronic haemodialysis limited participation. The next of kin were not involved. The nurses highlighted interventions on both the individual and system levels to strengthen participation. Conclusion Dialysis units should develop strategies for participation related to individual needs and design treatment in cooperation with patients and their families, ensuring involvement early in the clinical pathway. Further research is needed on issues related to next of kin, including their desired level of involvement.

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Background Cancer patient pathways (CPPs) were implemented in Norway in 2015–2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision‐making. This study investigates how patients enrolled in a CPP experienced shared decision‐making. Methods This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. Findings This study showed how participating in a standardized CPP provided different possibilities for shared decision‐making. The patients' narratives of shared decision‐making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. Conclusion Standardized CPPs provided patients with predictability and safety. Shared decision‐making was possible when the cancer diagnoses supported preference‐sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision‐making needs to be discussed for each specific CPP. Patient or Public Contribution A service user representative from the Norwegian Cancer Society participated in designing this study.