Background Chronic kidney disease (CKD) is increasingly common amongst frail older patients with multiple health problems. These patients typically decide between kidney replacement therapy (KRT) with dialysis, which carries uncertain survival benefit with significant treatment burden, and conservative kidney management (CKM). A person-centred approach to this shared decision-making process is advocated. Family members are known to be important in these decisions. Nonetheless, data exploring family member perspectives are limited. We aimed to explore how older, frail and/or comorbid patients with CKD and their family members understand and approach decision-making regarding treatments for kidney failure.

Methods Semi-structured interviews were conducted, in person, in 2018-2019, with older patients with advanced CKD (≥80 years or ≥65 with evidence of frailty or comorbidity) and at least one family member per patient. Interview transcripts were analysed using inductive thematic analysis with constant comparison within and between family units. Meanings and concepts were discussed between study investigators, to generate a coding framework and develop major themes.

Results Ten patients and 12 associated family members were interviewed. Three major themes were identified: (1) “whose decision is it anyway?” concerns ownership of treatment decisions; (2) “on death, dying and uncertain futures” describes relational elements of participants’ thoughts of the future; and (3) “caring and being cared for” explores the importance of physical and emotional caring roles and love and care in relationships.

Conclusions Family members appear to have significant influence on older patients’ kidney failure treatment decisions, which can occur outside the shared decision-making support offered to patients. The inextricably intertwined daily lives of co-habiting patients and family members means that treatment decisions impact and depend upon both family members and patients. Kidney services should adopt a ‘family-centred’ (rather than individually ‘person-centred’) approach to decision-making support and must develop ways to embed this in clinical practice.

The authors have declared no competing interest.

Data collection was carried out by BH under funding from a National Institute for Health Research (NIHR) doctoral fellowship. RK is funded by a NIHR Academic Clinical Fellowship.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

Ethics committee of Surrey Research Ethics Committee gave ethical approval for this work.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

Raw interview data is potentially identifiable so is not made available. Please contact the corresponding author for further details.