Narratives of patient participation in haemodialysis.
decision-making
healthcare trajectory
narration
patient participation
renal dialysis
working-age adults
Journal
Journal of clinical nursing
ISSN: 1365-2702
Titre abrégé: J Clin Nurs
Pays: England
ID NLM: 9207302
Informations de publication
Date de publication:
Jul 2020
Jul 2020
Historique:
received:
21
10
2019
revised:
16
01
2020
accepted:
07
02
2020
pubmed:
12
3
2020
medline:
21
10
2020
entrez:
12
3
2020
Statut:
ppublish
Résumé
To explore how working-age adults experience patient participation in hospital haemodialysis. 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. Qualitative design with a narrative approach. 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. 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. 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. 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.
Sections du résumé
AIM AND OBJECTIVE
OBJECTIVE
To explore how working-age adults experience patient participation in hospital haemodialysis.
BACKGROUND
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
METHODS
Qualitative design with a narrative approach.
METHODS
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
RESULTS
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
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
CONCLUSIONS
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.
Types de publication
Journal Article
Langues
eng
Pagination
2293-2305Subventions
Organisme : Møre and Romsdal Hospital Trust
Informations de copyright
© 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
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