TY - JOUR
T1 - Patients’ Perspectives on Access to Dialysis and Kidney Transplantation in Rural Communities in Australia
AU - Scholes-Robertson, Nicole
AU - Gutman, Talia
AU - Howell, Martin
AU - Craig, Jonathan C.
AU - Chalmers, Rachel
AU - Tong, Allison
PY - 2022/3
Y1 - 2022/3
N2 - Introduction: This study aimed to describe the perspectives of patients from rural communities on access to all forms of kidney replacement therapy to inform strategies to address such inequity. Methods: Semistructured interviews were conducted. Transcripts were thematically analyzed. Results: There were 28 participants, of whom, 14 (50%) were female and 5 (17%) Aboriginal or Torres Strait Islander. The mean distance to a nephrologist was 107 km, and transplant center was 447 km. We identified the following 5 themes: encumbered by transportation hardship (burdening of family and friends, frustration at lack of transportation options, heightened vulnerability to road trauma, unrelenting financial strain); deprived of treatment and care (isolated from centralized services, unresolved psychological distress, vulnerable without care, disadvantaged by limited options); confused by multiple information sources (despair at fragmented care, fear of unfamiliar health settings and treatments); compounding economic consequences (depletion of income/leave, coping with unexpected expenses); and the looming threat of relocation (devastated by displacement, resigned to periods of separation, uncertainty in sourcing appropriate accommodation). Conclusion: Patients with chronic kidney disease (CKD) in rural communities face profound economic, logistical, and psychological obstacles to accessing dialysis and transplant, leaving them feeling vulnerable and confused. To achieve equity of access and improved health outcomes for rural patients with CKD, barriers to dialysis, transplantation, and psychological services in this population require addressing through policy and alternate models of health service delivery, in consultation with rural communities and those families affected by CKD.
AB - Introduction: This study aimed to describe the perspectives of patients from rural communities on access to all forms of kidney replacement therapy to inform strategies to address such inequity. Methods: Semistructured interviews were conducted. Transcripts were thematically analyzed. Results: There were 28 participants, of whom, 14 (50%) were female and 5 (17%) Aboriginal or Torres Strait Islander. The mean distance to a nephrologist was 107 km, and transplant center was 447 km. We identified the following 5 themes: encumbered by transportation hardship (burdening of family and friends, frustration at lack of transportation options, heightened vulnerability to road trauma, unrelenting financial strain); deprived of treatment and care (isolated from centralized services, unresolved psychological distress, vulnerable without care, disadvantaged by limited options); confused by multiple information sources (despair at fragmented care, fear of unfamiliar health settings and treatments); compounding economic consequences (depletion of income/leave, coping with unexpected expenses); and the looming threat of relocation (devastated by displacement, resigned to periods of separation, uncertainty in sourcing appropriate accommodation). Conclusion: Patients with chronic kidney disease (CKD) in rural communities face profound economic, logistical, and psychological obstacles to accessing dialysis and transplant, leaving them feeling vulnerable and confused. To achieve equity of access and improved health outcomes for rural patients with CKD, barriers to dialysis, transplantation, and psychological services in this population require addressing through policy and alternate models of health service delivery, in consultation with rural communities and those families affected by CKD.
KW - access
KW - dialysis
KW - qualitative research
KW - rural
KW - transplantation
UR - http://www.scopus.com/inward/record.url?scp=85120699040&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1190850
UR - http://purl.org/au-research/grants/NHMRC/1169149
UR - http://purl.org/au-research/grants/NHMRC/1106716
U2 - 10.1016/j.ekir.2021.11.010
DO - 10.1016/j.ekir.2021.11.010
M3 - Article
AN - SCOPUS:85120699040
VL - 7
SP - 591
EP - 600
JO - Kidney International Reports
JF - Kidney International Reports
SN - 2468-0249
IS - 3
ER -