Perspectives of Patients, Families, and Health Care Professionals on Decision-Making about Dialysis Modality—the Good, the Bad, and the Misunderstandings!

Abstract

♦ Objectives: This study explored the factors influencing decision-making about dialysis modality, integrating the perspectives of patients, their families, and health care professionals within an Asian population. The study further sought to understand the low penetration rate of peritoneal dialysis (PD) in Singapore. ♦ Methods: A sample of 59 participants comprising pre-dialysis patients, dialysis patients, caregivers, and health care professionals (HCPs) participated in semistructured interviews to explore the decision-making process and their views about various dialysis modalities. Data were thematically analyzed using NVivo9 (QSR International, Doncaster, Australia) to explore barriers to and facilitators of various dialysis modalities and decisional support needs. ♦ Results: Fear of infection, daily commitment to PD, and misperceptions of PD emerged as barriers to PD. Side effects, distance to dialysis centers, and fear of needling and pain were barriers to hemodialysis (HD). The experiences of other patients, communicated informally or opportunistically, influenced the preferences and choices of patients and family members for a dialysis modality. Patients and families value input from HCPs and yet express strong needs to discuss subjective experiences of life on dialysis (PD or HD) with other patients before making a decision about dialysis modality. ♦ Conclusions: Pre-dialysis education should expand its focus on the family as the unit of care and should provide opportunities for interaction with dialysis patients and for peer-led learning. Barriers to PD, especially misperceptions and misunderstandings, can be targeted to improve PD uptake.

Do Dialysis Decision AIDS Improve Treatment Decision-Making?

“…In contrast to other studies, 3,8 the YoDDA evaluation found the views of family and professionals were important in treatment decision-making, but not the views of other patients. Forty-five percent of referred patients in the intervention group were given the YoDDA booklet with a by-center variation of 14%-49%.…”

Anxiety and depression in patients with end-stage renal disease: impact and management challenges – a narrative review

“…30 In contrast, other studies have noted that depression and anxiety in patients on PD are equal or even higher than those reported for patients on HD. 25,31 By virtue of PD being a home-based dialysis technique, individuals may feel sustained distress over the daily responsibility of their own health and well-being or medicalization of home environment that may act as constant reminder of their ill health.…”

Caregivers of Patients on Haemodialysis

“…However, they do not usually receive the available information needed [18]. Thus, pre-dialysis programmes need to be designed for caregivers in order to help them make informed decisions about the dialysis method their patient will follow [1].…”

“…A large proportion of family members take full responsibility for making decisions about the dialysis method the patients will follow, taking into consideration the opportunity to maintain their lifestyle and the possible risk of the therapy. They also take into account their priorities and their capability to manage home haemodialysis [1]. However, sometimes family caregivers have to take diicult decisions, such as interruption of dialysis therapy or referring their patients to hospice services [18].…”

“…Haemodialysis has been proved to be the most common treatment method worldwide for chronic renal failure (CRF) [1]. However, patients on dialysis have a variety of psychological disorders due to complications and restrictions of the treatment [2].…”