{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T19:03:10Z","timestamp":1778007790463,"version":"3.51.4"},"reference-count":24,"publisher":"MDPI AG","issue":"2","license":[{"start":{"date-parts":[[2023,2,8]],"date-time":"2023-02-08T00:00:00Z","timestamp":1675814400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Stiftung Kinderf\u00f6rderung von Playmobil"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as procedures for acute life-threatening complications, or to relieve physical and psychosocial suffering. The exact needs of patients or parents have not yet been investigated. To assess needs in supportive palliative care, we conducted a monocentric qualitative interview study. We included patients 14 to 24 years old as well as parents of younger children (below 14 years) with CKD \u2265 stage 3. In total, fifteen interviews were conducted. Data were analyzed with a deductive and descriptive approach using qualitative content analysis as described by Mayring. Sociodemographic data and basic information of disease were collected using questionnaires. In contrast to caregivers, adolescents and young adults do not express worries about their own mortality or reduced life expectancy. Rather, they report about their limitations to everyday life associated with the disease, especially in the areas of school and work. They wish to live a normal life. Caregivers are concerned about the future and the disease trajectory. They also describe difficulties in balancing the management of the disease with other responsibilities such as work and healthy siblings\u2019 needs. Patients and caregivers appear to need a chance to talk about their everyday struggles and disease-related fears and concerns. Talking about their concerns and needs may help deal with their emotions and facilitate acceptance of their situation characterized by a life-limiting disease. Our study confirms the need for psychosocial support in pediatric nephrology to address the needs of the affected families. This can be offered by pediatric palliative care teams.<\/jats:p>","DOI":"10.3390\/children10020324","type":"journal-article","created":{"date-parts":[[2023,2,8]],"date-time":"2023-02-08T06:00:05Z","timestamp":1675836005000},"page":"324","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Do We Need Palliative Care in Pediatric Nephrology? Patients\u2019 and Caregivers\u2019 Disease Experience"],"prefix":"10.3390","volume":"10","author":[{"given":"Nina","family":"Kubiak","sequence":"first","affiliation":[{"name":"Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine and Cystic Fibrosis Center, Charit\u00e9 Universit\u00e4tsmedizin Berlin, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chiara","family":"Fehrenbach","sequence":"additional","affiliation":[{"name":"Department of Pediatric Gastroenterology, Nephrology and Metabolic Diseases, Charit\u00e9 Universit\u00e4tsmedizin Berlin, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7565-295X","authenticated-orcid":false,"given":"Jenny","family":"Pr\u00fcfe","sequence":"additional","affiliation":[{"name":"Paediatrics II and III, University Hospital Essen, 45147 Essen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Thumfart","sequence":"additional","affiliation":[{"name":"Department of Pediatric Gastroenterology, Nephrology and Metabolic Diseases, Charit\u00e9 Universit\u00e4tsmedizin Berlin, 13353 Berlin, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2023,2,8]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1445","DOI":"10.1007\/s11136-018-1789-4","article-title":"Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life","volume":"27","author":"Splinter","year":"2018","journal-title":"Qual Life Res."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"2153","DOI":"10.1007\/s00467-015-3159-6","article-title":"Anxiety, depression, resilience and quality of life in children and adolescents with pre-dialysis chronic kidney disease","volume":"30","author":"Moreira","year":"2015","journal-title":"Pediatr. 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[11th ed.].","DOI":"10.1007\/978-3-531-92052-8_42"},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"e20182102","DOI":"10.1542\/peds.2018-2102","article-title":"Caregiver Experience in Pediatric Dialysis","volume":"143","author":"Wightman","year":"2019","journal-title":"Pediatrics"},{"key":"ref_16","doi-asserted-by":"crossref","unstructured":"Levy Erez, D., Meyers, M.R., Raman, S., Thomas, M., Furth, S., Forrest, C.B., and Denburg, M. (2022). When Dialysis \u201cBecomes Life\u201d: Pediatric Caregivers\u2019 Lived Experiences Obtained From Patient-Reported Outcomes Measures. Front. 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Therapie-Handbuch\u2014Nephrologie, Urban & Fischer."}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/10\/2\/324\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T18:28:13Z","timestamp":1760120893000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/10\/2\/324"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,2,8]]},"references-count":24,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2023,2]]}},"alternative-id":["children10020324"],"URL":"https:\/\/doi.org\/10.3390\/children10020324","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,2,8]]}}}