Nephrologists’ experiences with patient participation when long-term dialysis is required

Abstract

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.

Preference‐based patient participation for most, if not all: A cross‐sectional study of patient participation amongst persons with end‐stage kidney disease

“…Healthcare legislation and policies prescribe that healthcare professionals must involve patients in their care, on the patient's terms, 1 , 2 although healthcare professionals have been found to overestimate patients' readiness to enact healthcare. 39 Staff in dialysis care may favour engaging patients in the sense of performing part of or the full dialysis 12 , 40 as this has been found to reinforce a sense of control and thus enhance the individual's well‐being. 41 Yet, ESKD has a slow yet declining progression, 20 and one size does not fit all: Living with this condition might challenge one's self‐esteem and hamper long‐term engagement.…”

Self-Participation Experiences among Well-Adapted Hemodialysis Patients

“…However, previous studies have focused on empowerment [ 2 , 15 , 16 , 17 , 18 , 19 ] and self-management [ 15 ], healthcare professional perspectives of patient participation [ 12 , 16 , 20 , 21 ], as well as working-age HD adults experiences of participation [ 10 ]. Thus, the present study was designed as a qualitative study that describes the perspective of well-adapted hemodialysis patients regarding their self-participation experience.…”

Patient engagement during the transition from nondialysis‐dependent chronic kidney disease to dialysis: A meta‐ethnography

“…In contrast to the paternalistic model, patient engagement plays a central role in decision‐making from the informed approach. Healthcare professionals provided tailored information and evidence on the benefits and risks of the treatment options, which enabled patients to make informed decisions 59 . Patients are fully responsible for deliberating on the information and making a final decision on their own.…”

“…From the initiation of dialysis, patients must keep regular dialysis. Patients were encouraged to take part in the planning and practice of their care and treatment, including planning and complying with the dialysis schedule, calculating the amount of fluids that would be extracted during each dialysis session, and the self‐manipulation of dialysis machine at home 59,62,63 …”