Chandana Guha , Rabia Khalid , Kylie-Ann Mallitt , Anita van Zwieten , Anna Francis , Siah Kim , Armando Teixeira-Pinto , Martha Aquino , Amelie Bernier-Jean , David W. Johnson , Deirdre Hahn , Donna Reidlinger , Elizabeth G. Ryan , Fiona Mackie , Hugh McCarthy , Julie Varghese , Charani Kiriwandeniya , Kirsten Howard , Nicholas Larkins , Luke Macauley , Steve McTaggart
{"title":"照护者对患有慢性肾脏病的儿童获得医疗服务的看法","authors":"Chandana Guha , Rabia Khalid , Kylie-Ann Mallitt , Anita van Zwieten , Anna Francis , Siah Kim , Armando Teixeira-Pinto , Martha Aquino , Amelie Bernier-Jean , David W. Johnson , Deirdre Hahn , Donna Reidlinger , Elizabeth G. Ryan , Fiona Mackie , Hugh McCarthy , Julie Varghese , Charani Kiriwandeniya , Kirsten Howard , Nicholas Larkins , Luke Macauley , Steve McTaggart","doi":"10.1016/j.ekir.2024.08.029","DOIUrl":null,"url":null,"abstract":"<div><h3>Introduction</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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).</div></div><div><h3>Conclusions</h3><div>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.</div></div>","PeriodicalId":17761,"journal":{"name":"Kidney International Reports","volume":null,"pages":null},"PeriodicalIF":5.7000,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Perspectives of Caregivers on Access to Health Care for Children with CKD\",\"authors\":\"Chandana Guha , Rabia Khalid , Kylie-Ann Mallitt , Anita van Zwieten , Anna Francis , Siah Kim , Armando Teixeira-Pinto , Martha Aquino , Amelie Bernier-Jean , David W. Johnson , Deirdre Hahn , Donna Reidlinger , Elizabeth G. Ryan , Fiona Mackie , Hugh McCarthy , Julie Varghese , Charani Kiriwandeniya , Kirsten Howard , Nicholas Larkins , Luke Macauley , Steve McTaggart\",\"doi\":\"10.1016/j.ekir.2024.08.029\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Introduction</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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).</div></div><div><h3>Conclusions</h3><div>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.</div></div>\",\"PeriodicalId\":17761,\"journal\":{\"name\":\"Kidney International Reports\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":5.7000,\"publicationDate\":\"2024-11-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Kidney International Reports\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S2468024924019144\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"UROLOGY & NEPHROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Kidney International Reports","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S2468024924019144","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
Perspectives of Caregivers on Access to Health Care for Children with CKD
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.
期刊介绍:
Kidney International Reports, an official journal of the International Society of Nephrology, is a peer-reviewed, open access journal devoted to the publication of leading research and developments related to kidney disease. With the primary aim of contributing to improved care of patients with kidney disease, the journal will publish original clinical and select translational articles and educational content related to the pathogenesis, evaluation and management of acute and chronic kidney disease, end stage renal disease (including transplantation), acid-base, fluid and electrolyte disturbances and hypertension. Of particular interest are submissions related to clinical trials, epidemiology, systematic reviews (including meta-analyses) and outcomes research. The journal will also provide a platform for wider dissemination of national and regional guidelines as well as consensus meeting reports.