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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| Format: | Article |
| Language: | English |
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MDPI AG
2023-02-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/10/2/324 |
| _version_ | 1797621702187810816 |
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| author | Nina Kubiak Chiara Fehrenbach Jenny Prüfe Julia Thumfart |
| author_facet | Nina Kubiak Chiara Fehrenbach Jenny Prüfe Julia Thumfart |
| author_sort | Nina Kubiak |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-03-11T08:59:40Z |
| format | Article |
| id | doaj.art-23ea3a3b4e744176a79a0471491ff060 |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-11T08:59:40Z |
| publishDate | 2023-02-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-23ea3a3b4e744176a79a0471491ff0602023-11-16T19:49:10ZengMDPI AGChildren2227-90672023-02-0110232410.3390/children10020324Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease ExperienceNina Kubiak0Chiara Fehrenbach1Jenny Prüfe2Julia Thumfart3Department of Pediatric Respiratory Medicine, Immunology and Critical Care Medicine and Cystic Fibrosis Center, Charité Universitätsmedizin Berlin, 13353 Berlin, GermanyDepartment of Pediatric Gastroenterology, Nephrology and Metabolic Diseases, Charité Universitätsmedizin Berlin, 13353 Berlin, GermanyPaediatrics II and III, University Hospital Essen, 45147 Essen, GermanyDepartment of Pediatric Gastroenterology, Nephrology and Metabolic Diseases, Charité Universitätsmedizin Berlin, 13353 Berlin, GermanyChronic 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.https://www.mdpi.com/2227-9067/10/2/324palliative carechronic kidney diseasechildren |
| spellingShingle | Nina Kubiak Chiara Fehrenbach Jenny Prüfe Julia Thumfart Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience Children palliative care chronic kidney disease children |
| 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 | palliative care chronic kidney disease children |
| url | https://www.mdpi.com/2227-9067/10/2/324 |
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