{"title":"\"我怎么办?\":与患有危及生命或生命垂危疾病的兄弟姐妹共同生活的兄弟姐妹的生活经历。","authors":"Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger","doi":"10.1080/17482631.2024.2321645","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves.</p><p><strong>Method: </strong>This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials.</p><p><strong>Results: </strong>One overall theme, \"What about me?\", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own.</p><p><strong>Conclusion: </strong>The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.</p>","PeriodicalId":51468,"journal":{"name":"International Journal of Qualitative Studies on Health and Well-Being","volume":"19 1","pages":"2321645"},"PeriodicalIF":2.1000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10898268/pdf/","citationCount":"0","resultStr":"{\"title\":\"\\\"What about me?\\\": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition.\",\"authors\":\"Trine Brun Kittelsen, Charlotte Castor, Anja Lee, Lisbeth Gravdal Kvarme, Anette Winger\",\"doi\":\"10.1080/17482631.2024.2321645\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves.</p><p><strong>Method: </strong>This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials.</p><p><strong>Results: </strong>One overall theme, \\\"What about me?\\\", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own.</p><p><strong>Conclusion: </strong>The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.</p>\",\"PeriodicalId\":51468,\"journal\":{\"name\":\"International Journal of Qualitative Studies on Health and Well-Being\",\"volume\":\"19 1\",\"pages\":\"2321645\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2024-12-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10898268/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"International Journal of Qualitative Studies on Health and Well-Being\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/17482631.2024.2321645\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/2/25 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"NURSING\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"International Journal of Qualitative Studies on Health and Well-Being","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/17482631.2024.2321645","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/2/25 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"NURSING","Score":null,"Total":0}
"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition.
Background: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves.
Method: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials.
Results: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own.
Conclusion: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
期刊介绍:
International Journal of Qualitative Studies on Health and Well-being acknowledges the international and interdisciplinary nature of health-related issues. It intends to provide a meeting-point for studies using rigorous qualitative methodology of significance for issues related to human health and well-being. The aim of the International Journal of Qualitative Studies on Health and Well-being is to support and to shape the emerging field of qualitative studies and to encourage a better understanding of all aspects of human health and well-being.