Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is importa...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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MDPI AG
2022-04-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/9/5/641 |
| _version_ | 1797500800241500160 |
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| author | Ulrika Kreicbergs Stefan Nilsson Margaretha Jenholt Nolbris Malin Lövgren |
| author_facet | Ulrika Kreicbergs Stefan Nilsson Margaretha Jenholt Nolbris Malin Lövgren |
| author_sort | Ulrika Kreicbergs |
| collection | DOAJ |
| description | Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6–14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school—a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death—not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling’s palliative care needs. |
| first_indexed | 2024-03-10T03:09:03Z |
| format | Article |
| id | doaj.art-c92551009b1341748b363bfec1a298ac |
| institution | Directory Open Access Journal |
| issn | 2227-9067 |
| language | English |
| last_indexed | 2024-03-10T03:09:03Z |
| publishDate | 2022-04-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj.art-c92551009b1341748b363bfec1a298ac2023-11-23T10:30:15ZengMDPI AGChildren2227-90672022-04-019564110.3390/children9050641Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care NeedsUlrika Kreicbergs0Stefan Nilsson1Margaretha Jenholt Nolbris2Malin Lövgren3Department of Caring Sciences, Palliative Research Center, Marie Cederschiöld University, P.O. Box 11189, 100 61 Stockholm, SwedenInstitute of Health and Care Sciences, University of Gothenburg Centre for Person-Centered Care, Sahlgrenska Academy, P.O. Box 457, 405 30 Gothenburg, SwedenInstitute of Health and Care Sciences, University of Gothenburg Centre for Person-Centered Care, Sahlgrenska Academy, P.O. Box 457, 405 30 Gothenburg, SwedenDepartment of Caring Sciences, Palliative Research Center, Marie Cederschiöld University, P.O. Box 11189, 100 61 Stockholm, SwedenSiblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6–14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school—a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death—not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling’s palliative care needs.https://www.mdpi.com/2227-9067/9/5/641siblingsbereavementpalliative carecommunicationemotions |
| spellingShingle | Ulrika Kreicbergs Stefan Nilsson Margaretha Jenholt Nolbris Malin Lövgren Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs Children siblings bereavement palliative care communication emotions |
| title | Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs |
| title_full | Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs |
| title_fullStr | Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs |
| title_full_unstemmed | Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs |
| title_short | Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs |
| title_sort | using communication tools to explore young siblings experiences of having a brother or sister with pediatric palliative care needs |
| topic | siblings bereavement palliative care communication emotions |
| url | https://www.mdpi.com/2227-9067/9/5/641 |
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