Dyadic shared decision-making in dialysis: An interpretive phenomenological inquiry

Caregiver and family engagement in dialysis decisions varies over the end-stage kidney disease treatment trajectory, with family preferences as primary consideration factors for patients starting dialysis. This interpretive phenomenological study explores how dialysis patients and their partners experience dialysis decisions.

Thirteen patient-decision partner dyads (26 participants) were interviewed together about their experience with dialysis decision-making. A 5-step iterative process of data analysis occurred concurrently with data collection.

The patients received in-center hemodialysis (n = 6) and home dialysis (peritoneal dialysis or home hemodialysis (n = 7). Decision partner relationships included romantic partners (n = 9) and either parent, sibling, or friend (n = 4). Fifty-7 percent of participants were White; 46% of patients were women, and 76% of decision partners were women. Three interrelated themes were identified: Their body, but not their life; Seeking semiliberation, and Decision-making is caring.

Dyads were attuned to patient autonomy while managing the collateral effects of dialysis. Shifting the paradigm of dialysis treatment decisions from promoting patient autonomy to dialogues exploring relational autonomy helps providers balance the competing demands of incentivized standards to promote home dialysis with patients and their decision partners realities. (PsycInfo Database Record (c) 2023 APA, all rights reserved).