TY - JOUR
T1 - Perspectives of Caregivers on Access to Health Care for Children with CKD
AU - Guha, Chandana
AU - Khalid, Rabia
AU - Mallitt, Kylie Ann
AU - van Zwieten, Anita
AU - Francis, Anna
AU - Kim, Siah
AU - Teixeira-Pinto, Armando
AU - Aquino, Martha
AU - Bernier-Jean, Amelie
AU - Johnson, David W.
AU - Hahn, Deirdre
AU - Reidlinger, Donna
AU - Ryan, Elizabeth G.
AU - Mackie, Fiona
AU - McCarthy, Hugh
AU - Varghese, Julie
AU - Kiriwandeniya, Charani
AU - Howard, Kirsten
AU - Larkins, Nicholas
AU - Macauley, Luke
AU - Walker, Amanda
AU - Howell, Martin
AU - Caldwell, Patrina
AU - Woodleigh, Reg
AU - Jesudason, Shilpanjali
AU - Carter, Simon
AU - Kennedy, Sean
AU - Alexander, Stephen
AU - McTaggart, Steven
AU - Craig, Jonathan C.
AU - Hawley, Carmel M.
AU - Wong, Germaine
AU - Jaure, Allison
AU - NAVKIDS2 trial steering committee
AU - Tong, Allison
AU - Mallard, Alistair
AU - Pascoe, Elaine
AU - Vergara, Liza
AU - Irving, Michelle
PY - 2024/11
Y1 - 2024/11
N2 - Introduction: Inequitable access to health care based on demographic factors such as ethnicity, socioeconomic status and geographical location has been consistently found in children with chronic kidney disease (CKD). However, little is known about the perspectives of caregivers on accessing health care. We described caregivers’ perspectives on accessing health care for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas.Methods: Caregivers of Australian children aged 0 to 16 years, across all CKD stages, from low socioeconomic status backgrounds, and/or residing in rural or remote areas, purposively sampled from 5 centers, participated in semi structured interviews on accessing health care. Transcripts were analyzed thematically.Results: From 32 interviews, we identified 6 themes: lack of agency undermining ability to seek care (obscurity of symptoms, uncertain and confused about care processes, and vulnerable and unable to advocate), losing trust in clinicians (confused by inconsistencies and ambiguities in advice, and distressed by lack of collaborative care), exasperated by organizational rigidity (frustrated by bureaucratic roadblocks, lack of access to specialist care in rural and remote settings, and inadequacies of support programs), compounding burden of caregiving (unsustainable financial pressure, debilitating exhaustion, and asymmetry of responsibility), intensifying strain on family (uprooting to relocate, sibling stress and neglect, and depending on family support), building resilience and stability (empowerment through education and confidence in technical and medical support). Conclusions: Caregivers of children with CKD from disadvantaged backgrounds feel disempowered and vulnerable when accessing care for their child. Strategies are needed to improve access to health care for families who are socioeconomically or geographically disadvantaged.
AB - Introduction: Inequitable access to health care based on demographic factors such as ethnicity, socioeconomic status and geographical location has been consistently found in children with chronic kidney disease (CKD). However, little is known about the perspectives of caregivers on accessing health care. We described caregivers’ perspectives on accessing health care for children with CKD from socioeconomically disadvantaged backgrounds and/or rural or remote areas.Methods: Caregivers of Australian children aged 0 to 16 years, across all CKD stages, from low socioeconomic status backgrounds, and/or residing in rural or remote areas, purposively sampled from 5 centers, participated in semi structured interviews on accessing health care. Transcripts were analyzed thematically.Results: From 32 interviews, we identified 6 themes: lack of agency undermining ability to seek care (obscurity of symptoms, uncertain and confused about care processes, and vulnerable and unable to advocate), losing trust in clinicians (confused by inconsistencies and ambiguities in advice, and distressed by lack of collaborative care), exasperated by organizational rigidity (frustrated by bureaucratic roadblocks, lack of access to specialist care in rural and remote settings, and inadequacies of support programs), compounding burden of caregiving (unsustainable financial pressure, debilitating exhaustion, and asymmetry of responsibility), intensifying strain on family (uprooting to relocate, sibling stress and neglect, and depending on family support), building resilience and stability (empowerment through education and confidence in technical and medical support). Conclusions: Caregivers of children with CKD from disadvantaged backgrounds feel disempowered and vulnerable when accessing care for their child. Strategies are needed to improve access to health care for families who are socioeconomically or geographically disadvantaged.
KW - access
KW - caregivers
KW - chronic kidney disease
KW - healthcare
KW - pediatric
UR - http://www.scopus.com/inward/record.url?scp=85205223730&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1170021
U2 - 10.1016/j.ekir.2024.08.029
DO - 10.1016/j.ekir.2024.08.029
M3 - Article
AN - SCOPUS:85205223730
SN - 2468-0249
VL - 9
SP - 3177
EP - 3189
JO - Kidney International Reports
JF - Kidney International Reports
IS - 11
ER -
