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Narratives of Patient Participation in Haemodialysis
journal contributionposted on 20.01.2021, 23:57 authored by Tone Andersen‐Hollekim, Marit Solbjor, Marit Kvangarsnes, Torstein Hole, Bodil J Landstad
© 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd 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.
The study received funding from More and Romsdal Hospital Trust.
JournalJournal of Clinical Nursing
Pagination13p. (p. 2293-2305)
Rights StatementThe Author reserves all moral rights over the deposited text and must be credited if any re-use occurs. Documents deposited in OPAL are the Open Access versions of outputs published elsewhere. Changes resulting from the publishing process may therefore not be reflected in this document. The final published version may be obtained via the publisher’s DOI. Please note that additional copyright and access restrictions may apply to the published version.
Science & TechnologyLife Sciences & BiomedicineNursingdecision-makinghealthcare trajectorynarrationpatient participationrenal dialysisworking-age adultsSHARED DECISION-MAKINGSTAGE RENAL-DISEASETHEMATIC SYNTHESISDIALYSISPERCEPTIONSINVOLVEMENTCAREKNOWLEDGEBARRIERSCHOICEHumansKidney Failure, ChronicRenal DialysisAdaptation, PsychologicalDecision MakingQualitative ResearchQuality of LifeAdultMiddle AgedPatient ParticipationFemaleMalePatient Preference