Narratives of patient participation in haemodialysis

Abstract

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.

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

“…Living with a long‐term condition, such as ESKD, is often associated with acquiring extensive recognition of the bodily manifestations of the illness 32 . However, patients may find it difficult to share such experiences, 4,33 particularly if they are not requested or considered appropriate, for example a third of the study participants had experienced less conditions than preferred to partake in terms of sharing their symptoms or having explanations to their symptoms (Figure 4). Rather, a mutual sense of trust and engagement is needed to build confidence in discussing such issues 10,34 .…”

Interest and perceived capability of self‐care in haemodialysis units

“…TA B L E 2 HD-SCALE and per cent difference between scores The healthcare system itself can often be one of the most formidable challenges to patient participation (Andersen-Hollekim et al, 2020;Kammerer et al, 2007). Our study found that overall nurses underestimated the degree to which patients were interested in performing haemodialysis tasks.…”

“…This may imply that increased patient involvement can be beneficial even within facility or hospital‐based haemodialysis units. Nevertheless, dialysis units tend to have an atmosphere of dependency and passivity (Andersen‐Hollekim et al, 2020; Fotheringham et al, 2017), which would appear to contribute to the acceptance of non‐participation of patients by both patients and staff (Angel & Frederiksen, 2015).…”

In Defense of Patient Autonomy in Kidney Failure Care When Treatment Choices Are Limited

“…However, research suggests that clinicians may overestimate the level of distress that will result from the disclosure of bad news to patients, and underestimate the probability that patients may be aware of, or learn the news from other sources. [34][35][36][37] Patients may in fact be more distressed because of the secrecy surrounding the disclosure and/or the manner and timing of eventual revelations.…”