The experience of shared decision-making for patients with end-stage kidney disease undergoing haemodialysis and their families-A scoping review

Aim: To identify the experiences of shared decision-making (SDM) for adults with end-stage kidney disease undergoing haemodialysis (HD) and their family members.

Design: A scoping literature review.

Method: A scoping literature review, using Joanna Briggs Institute guidelines.

Data sources: Medline (OVID), EMBASE, CINAHL, Psych Info, ProQuest, Web of Science, Open grey and grey literature were searched covering years from January 2015 to July 2022. Empirical studies, unpublished thesis and studies in English were included. The scoping review was conducted using the Preferred Reporting Items for Systematic Meta analysis-scoping review extension (PRISMA-Scr).

Results: Thirteen studies were included in the final review. While SDM is welcomed by people undergoing HD, their experience is often limited to treatment decisions, with little opportunity to revisit decisions previously made. The role of the family/caregivers as active participants in SDM requires recognition.

Conclusion: People with end-stage kidney disease undergoing HD do and want to participate in the process of SDM, on a wide range of topics, in addition to treatment. A strategy is needed to ensure that SDM interventions are successful in achieving patient-driven outcomes and enhancing their quality of life.

Implications for clinical practice: This review highlights the experiences of people undergoing HD and their family/caregivers. There is a wide variety of clinical decisions requiring consideration for people undergoing HD, including considering the importance who should be involved in the decision-making processes and when decisions should occur. Further study to ensure nurses understand the importance, and influence of including family members in conversations on both SDM processes and outcomes is needed. There is a need for research from both patient and healthcare professional (HCP) perspectives to ensure that people feel supported and have their needs met in the SDM process.

Patient and public contribution: No patient or public contribution.