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Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience

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 reli...

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Autores principales: Kubiak, Nina, Fehrenbach, Chiara, Prüfe, Jenny, Thumfart, Julia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9955394/
https://www.ncbi.nlm.nih.gov/pubmed/36832453
http://dx.doi.org/10.3390/children10020324
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author Kubiak, Nina
Fehrenbach, Chiara
Prüfe, Jenny
Thumfart, Julia
author_facet Kubiak, Nina
Fehrenbach, Chiara
Prüfe, Jenny
Thumfart, Julia
author_sort Kubiak, Nina
collection PubMed
description 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 ≥ 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’ 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.
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spelling pubmed-99553942023-02-25 Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience Kubiak, Nina Fehrenbach, Chiara Prüfe, Jenny Thumfart, Julia Children (Basel) Article 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 ≥ 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’ 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. MDPI 2023-02-08 /pmc/articles/PMC9955394/ /pubmed/36832453 http://dx.doi.org/10.3390/children10020324 Text en © 2023 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Kubiak, Nina
Fehrenbach, Chiara
Prüfe, Jenny
Thumfart, Julia
Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title_full Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title_fullStr Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title_full_unstemmed Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title_short Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
title_sort do we need palliative care in pediatric nephrology? patients’ and caregivers’ disease experience
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9955394/
https://www.ncbi.nlm.nih.gov/pubmed/36832453
http://dx.doi.org/10.3390/children10020324
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