Patient, Caregiver, and Provider Perspectives on Improving Information Delivery in Hemodialysis: A Qualitative Study

Abstract

Background: Patients with kidney failure are exposed to a surfeit of new information about their disease and treatment, often resulting in ineffective communication between patients and providers. Improving the amount, timing, and individualization of information received has been identified as a priority in in-center hemodialysis care. Objective: To describe and explicate patient, caregiver, and health care provider perspectives regarding challenges and solutions to information transfer in clinical hemodialysis care. Design: In this multicenter qualitative study, we gathered perspectives of patients, their caregivers, and health care providers conducted through focus groups and interviews. Setting: Five Canadian hemodialysis centers: Calgary, Edmonton, Winnipeg, Ottawa, and Halifax. Participants: English-speaking adults receiving in-center hemodialysis for longer than 6 months, their caregivers, and hemodialysis health care providers. Methods: Between May 24, 2017, and August 16, 2018, data collected through focus groups and interviews with hemodialysis patients and their caregivers subsequently informed semi-structured interviews with health care providers. For this secondary analysis, data were analyzed through an inductive thematic analysis using grounded theory, to examine the data more deeply for overarching themes. Results: Among 82 patients/caregivers and 31 healthcare providers, 6 main themes emerged. Themes identified from patients/caregivers were (1) overwhelmed at initiation of hemodialysis care, (2) need for peer support, and (3) improving comprehension of hemodialysis processes. Themes identified from providers were (1) time constraints with patients, (2) relevance of information provided, and (3) technological innovations to improve patient engagement. Limitations: Findings were limited to Canadian context, English speakers, and individuals receiving hemodialysis in urban centers. Conclusions: Participants identified challenges and potential solutions to improve the amount, timing, and individualization of information provided regarding in-center hemodialysis care, which included peer support, technological innovations, and improved knowledge translation activities. Findings may inform the development of interventions and strategies aimed at improving information delivery to facilitate patient-centered hemodialysis care.

Ethnic Differences in Health Literacy, Self-Efficacy, and Self-Management in Patients Treated With Maintenance Hemodialysis

“…In the case of the latter, information is broken down into smaller "chunks" and reviewed over multiple sessions. 29 This is supported by a qualitative study, by Ferreira da Silva et al, 31 which analyzed interview data of patients from 5 Canadian hemodialysis centers receiving in-center hemodialysis, their caregivers, and health providers. The researchers explored the barriers and solutions to delivery of information related to hemodialysis and identified patients felt overwhelmed with the amount of information they received when first initiating hemodialysis which made it difficult to retain.…”

“You need a team”: perspectives on interdisciplinary symptom management using patient-reported outcome measures in hemodialysis care—a qualitative study

“…Participants were offered alternative interview formats, and those wishing to proceed may have chosen this format for their own comfort or convenience. Other studies have used similar interview approaches during hemodialysis without compromising data quality [ 49 , 60 , 61 ]. Future research should explore the implications of PROM use for caregivers, application of the study’s PROM resources outside of the hemodialysis setting (e.g., with patients’ primary care physicians), and preferences for and influence of different PROM types on interdisciplinary hemodialysis care.…”

Peer support for people starting dialysis without preparation – a non-randomised controlled feasibility trial

“…This study demonstrated that peer support can be given to and is valued by people who present late to RRT. People often feel overwhelmed when commencing dialysis, even when planned and controlled [10], and when setting up this trial there were concerns that late presenters would feel too overwhelmed or physically unwell to welcome or bene t from peer support. However, acceptability, de ned as 'the extent to which people receiving a healthcare intervention consider it to be appropriate, based on anticipated or experienced cognitive and emotional responses to the intervention' [24], has been demonstrated: consent rates were high and patient-reported measures encouraging.…”

“…Peer support -the provision of informational and emotional support by people with experience of kidney disease to others sharing the condition -might be one such intervention. Late-presenters feel overwhelmed and struggle to take in complex new information; although both NICE and UK Renal Association guidelines emphasise how important education and decision support is for late-presenters [1,2] many renal teams lack time and skills to educate optimally [10]. Peer supporters offer information about living with kidney disease which is jargon-free and at a level easily understood by lay-people [11], potentially providing a valuable adjunct to standard education.…”