“I am worried she won’t live that long:” Voices of adolescent well-siblings of individuals living with complex congenital heart defects.
Well-siblings of individuals with chronic illnesses face unique stressors which can adversely affect their mental health outcomes. There is limited research regarding experiences of well-siblings living with individuals diagnosed with complex congenital heart defects (CCHD). Using a phenomenological...
| Publicado en: | Children's Health Care pp. 1 - 26 |
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| Autores principales: | , , , |
| Formato: | Journal Article |
| Publicado: |
Taylor & Francis Ltd
Dec2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=181722888&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 181722888 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 02739615 7LJ jtl: Children's Health Care issn: 02739615 maglogo: N pubinfo: dt: Dec2024 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 181722888 10.1080/02739615.2024.2433967 181722888 ppf: 1 ppct: 25 formats: fmt: @attributes: type: P tig: atl: “I am worried she won’t live that long:” Voices of adolescent well-siblings of individuals living with complex congenital heart defects. aug: au: Bernardino, A. Desai, P. P. Brimhall, A. S. Sang, C. J. Jr. affil: East Carolina University sug: ab: Well-siblings of individuals with chronic illnesses face unique stressors which can adversely affect their mental health outcomes. There is limited research regarding experiences of well-siblings living with individuals diagnosed with complex congenital heart defects (CCHD). Using a phenomenological approach this qualitative study explored the lived experiences of six 12–17-year-old, non-Hispanic white well-siblings of individuals living with CCHD. The participants lived in southeastern United States. Data were collected using two semi-structured interviews, a health literacy questionnaire, and two standardized mental health screening tools. Three overlapping themes were developed from the data, namely viewpoint of daily life, understanding of the sibling’s heart diagnosis, and well-sibling’s social support. Results suggested that the participants had varied levels of understanding of their sibling’s CCHD, perceived differential parental treatment, and reported feelings of rivalry and jealousy. They worried about adverse health outcomes for their sibling with CCHD, including worrying about their death. Mothers and close friends were identified as sources of support. This study confirmed that experiences of well-siblings are layered, complex, and could be impacted by a range of factors including their health literacy and support from family, friends, and professionals. This study raises more questions and implications for future research are provided. pubtype: Academic Journal doctype: Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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