The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study.

INTRODUCTION: The organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient-oriented convergent parallel mixed-methods approach. METHODS: We captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach. RESULTS: Most participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person-centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support. CONCLUSION: It is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.

Impact of the COVID-19 pandemic on Canadian transplant journeys: a mixed methods study.

BACKGROUND: Navigating the organ donation and transplantation system in Canada can be challenging for individuals on transplant journeys. Although it is likely that the COVID-19 pandemic has further contributed to these challenges, the experiences of individuals during the pandemic in Canada have not been well elicited. OBJECTIVE: To illuminate how the COVID-19 pandemic has impacted individuals on transplant journeys in Canada. DESIGN: Convergent parallel mixed-methods study. SETTING: Canada. PARTICIPANTS: Adult patients, caregivers, and donors on transplant journeys across Canada. DATA COLLECTION: Eight focus groups and an online survey between May and November 2021. Focus group transcripts were analysed using an inductive conventional content analysis approach. Survey data were analysed using descriptive statistics. The study was guided by individuals with lived experience of organ donation and transplantation. RESULTS: A total of 830 participants completed three COVID-19 related survey questions, with 21 participating in the focus groups. Survey results: over 50% of patients and caregivers reported that the pandemic impacted their access to their healthcare team, their mental health (60% and 65%, respectively) and their comfort going out in public (80% and 75%, respectively). Although many donors reported several factors that impacted their transplant journey, the impact appeared to be greater for patients and caregivers. Qualitative results: three themes emerged from the qualitative data that contextualise participant's experiences: compounding isolation, disruption amid uncertainty and unforeseen benefits. CONCLUSION: The COVID-19 pandemic has exacerbated many of the challenges that individuals on transplant journeys experience. It will be critical for transplant programmes to consider these factors in future care provision.

Australian consumer perspectives on dialysis: first national census.

AIM: The percentage of people in Australia who undertake home dialysis has steadily decreased over the past 40 years and varies within Australia. Consumer factors related to this decline have not previously been determined. METHODS: A 78-question survey was developed and piloted in 2008 and 2009. Survey forms were distributed to all adult routine dialysis patients in all Australian states and territories (except Northern Territory) between 2009 and 2010. Of 9223 distributed surveys, 3250 were completed and returned. RESULTS: 49% of respondents indicated they had no choice in the type of dialysis and 48% had no choice in dialysis location. Respondents were twice as likely to receive information about haemodialysis (85%) than APD (39%) or CAPD (41%). The provision of education regarding home modalities differed significantly between states, and decreased with increasing patient age. Additional nursing support and reimbursement of expenses increased the proportion of those willing to commence dialysis at home, from 13% to 34%. State differences in the willingness to consider home dialysis, the degree of choice in dialysis location, the desire to change current dialysis type and/or location, and the provision of information about dialysis were identified. CONCLUSION: The delivery of pre-dialysis education is variable, and does not support all options of dialysis for all individuals. State variances indicate that local policy and health professional teams significantly influence the operation of dialysis programs.

How Australian nephrologists view home dialysis: results of a national survey.

AIM: Australia's commitment to home dialysis therapies has been significant. However, there is marked regional variation in the uptake of home haemodialysis (HD) and peritoneal dialysis (PD) suggesting further scope for the expansion of these modalities. METHODS: Between 1 April and 5 August 2009, Australian nephrologists were invited to complete an online survey. Seventy-six questions were asked covering characteristics of the dialysis units, responders' experience, adequacy of facilities and support structures, attitudes to the use of home HD and PD and issues impeding the increased uptake of home dialysis. RESULTS: Completed surveys were received and analysed from 71 respondents; 27 from Heads of Units (35% response rate) and 44 (16%) from other nephrologists. There was strong agreement that HD with long hours was advantageous and that this was most easily accomplished in the home. PD was not considered to be an inferior therapy. A 'PD first' policy existed in 34% of Renal Units. The most commonly reported impediments to expanding home dialysis services were financial disadvantage for home HD patients, and lack of physical infrastructure for training, support and education. Areas of concern for expanding home dialysis programmes included psychiatry support, access to respite care and home visits, and lack of support from medical administration and government. The majority of nephrologists would recommend home dialysis to more patients if these impediments could be overcome. CONCLUSION: This survey identified support from nephrologists for the expansion of home dialysis in Australia and highlighted important barriers to improving access to these therapies.