{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,6]],"date-time":"2026-10-06T14:44:42Z","timestamp":1791297882981,"version":"4.1.0"},"reference-count":39,"publisher":"American Academy of Pediatrics (AAP)","issue":"2","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2019,2,1]]},"abstract":"<jats:sec>\n                  <jats:title>BACKGROUND AND OBJECTIVES:<\/jats:title>\n                  <jats:p>Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child\u2019s chronic illness. In this study, we seek to describe the experience of parental caregivers of children receiving chronic dialysis for end-stage kidney disease.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>METHODS:<\/jats:title>\n                  <jats:p>We performed semistructured interviews of primary caregivers of children with end-stage kidney disease receiving chronic peritoneal dialysis or hemodialysis for at least 8 weeks from March 2016 to April 2017 at 3 pediatric dialysis centers in the United States. We performed a thematic analysis to inductively derive and identify themes and subthemes related to positive and negative caregiver experiences.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>RESULTS:<\/jats:title>\n                  <jats:p>Thirty-five caregivers completed interviews. Four major themes were identified, each with several subthemes: (1) caregiver medicalization (subthemes: diagnosis and initiation, disease management, and the future), (2) emotional adjustment (initial and\/or acute phase, acceptance, personal growth, and medical stress and psychological burden), (3) pragmatic adaptation (disruption, adaptation of life goals and\/or sense of self, and financial impact), and (4) social adjustment (relationship opportunity, relationship risk, advocacy, family functioning, and intimate relationships). These themes and subthemes reflected a broad range of experiences from positive to severely burdensome.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>CONCLUSIONS:<\/jats:title>\n                  <jats:p>Caregivers of patients on dialysis report a broad range of positive and burdensome experiences. These results reveal a need for continued advocacy to support families with a child on dialysis and can be used to develop targeted measures to study and improve caregiver experience in this population.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1542\/peds.2018-2102","type":"journal-article","created":{"date-parts":[[2019,1,29]],"date-time":"2019-01-29T13:32:56Z","timestamp":1548768776000},"source":"Crossref","is-referenced-by-count":66,"title":["Caregiver Experience in Pediatric Dialysis"],"prefix":"10.1542","volume":"143","author":[{"given":"Aaron","family":"Wightman","sequence":"first","affiliation":[{"name":"Divisions of Nephrology,"},{"name":"Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, Washington;"},{"name":"Treuman Katz Center for Pediatric Bioethics, Seattle Children\u2019s Research Institute, Seattle, Washington;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cortney Taylor","family":"Zimmerman","sequence":"additional","affiliation":[{"name":"Section of Psychology, Nephrology Service, Department of Pediatrics, Texas Children\u2019s Hospital, Houston, Texas;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shari","family":"Neul","sequence":"additional","affiliation":[{"name":"Division of Hematology and Oncology, Department of Pediatrics, Vanderbilt University, Nashville, Tennessee; and"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine","family":"Lepere","sequence":"additional","affiliation":[{"name":"Treuman Katz Center for Pediatric Bioethics, Seattle Children\u2019s Research Institute, Seattle, Washington;"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"KristiLynn","family":"Cedars","sequence":"additional","affiliation":[{"name":"Division of Psychology, Department of Psychiatry and Behavioral Medicine, Children\u2019s Hospital of Wisconsin, Milwaukee, Wisconsin"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Douglas","family":"Opel","sequence":"additional","affiliation":[{"name":"Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, Washington;"},{"name":"Treuman Katz Center for Pediatric Bioethics, Seattle Children\u2019s Research Institute, Seattle, Washington;"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2019,2,1]]},"reference":[{"issue":"3","key":"2021121013282062300_B1","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2015-0980","article-title":"Outcome of patients initiating chronic peritoneal dialysis during the first year of life.","volume":"136","author":"Carey","year":"2015","journal-title":"Pediatrics"},{"issue":"2","key":"2021121013282062300_B2","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2006-1754","article-title":"Outcomes of dialysis initiated during the neonatal period for treatment of end-stage renal disease: a North American Pediatric Renal Trials and Collaborative Studies special analysis.","volume":"119","author":"Carey","year":"2007","journal-title":"Pediatrics"},{"issue":"8","key":"2021121013282062300_B3","doi-asserted-by":"crossref","first-page":"1456","DOI":"10.2215\/CJN.12741215","article-title":"Update on ethical issues in pediatric dialysis: has pediatric dialysis become morally obligatory?","volume":"11","author":"Wightman","year":"2016","journal-title":"Clin J Am Soc Nephrol"},{"issue":"4","key":"2021121013282062300_B4","doi-asserted-by":"crossref","first-page":"459","DOI":"10.3747\/pdi.2009.00265","article-title":"Attitudes of caregivers to management of end-stage renal disease in infants.","volume":"31","author":"Teh","year":"2011","journal-title":"Perit Dial Int"},{"issue":"1","key":"2021121013282062300_B5","doi-asserted-by":"crossref","first-page":"154","DOI":"10.1016\/S0022-3476(98)70199-4","article-title":"Attitudes of pediatric nephrologists to management of end-stage renal disease in infants.","volume":"133","author":"Geary","year":"1998","journal-title":"J Pediatr"},{"issue":"5","key":"2021121013282062300_B6","doi-asserted-by":"crossref","first-page":"1252","DOI":"10.1093\/ndt\/gfh100","article-title":"Decisions concerning potentially life-sustaining treatments in paediatric nephrology: a multicentre study in French-speaking countries.","volume":"19","author":"Fauriel","year":"2004","journal-title":"Nephrol Dial Transplant"},{"issue":"2","key":"2021121013282062300_B7","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1007\/BF00849289","article-title":"Ethical and legal considerations in the care of the infant with end-stage renal disease whose parents elect conservative therapy. 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