Children's Perspectives on the Experiences of Their Siblings with Chronic Disorders.
Knowledge about the experiences of children with chronic disorders (CCD) is often based on parent-report. Obtaining self-report from CCD may be challenging due to cognitive impairments associated with many disorders. We explored siblings' perspectives on the experiences of their brothers and sisters...
| Publicado en: | Clinical Social Work Journal Vol. 47; no. 3; pp. 290 - 300 |
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| Autores principales: | , , , |
| Formato: | Artículo |
| Publicado: |
Springer Nature
Sep2019
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| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=138171050&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 138171050 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 00911674 CSW jtl: Clinical Social Work Journal issn: 00911674 maglogo: N pubinfo: dt: Sep2019 vid: 47 iid: 3 pid: 237 pub: Springer Nature artinfo: ui: 138171050 10.1007/s10615-019-00705-3 ppf: 290 ppct: 10 formats: fmt: – @attributes: type: T – @attributes: type: P size: 577KB tig: atl: Children's Perspectives on the Experiences of Their Siblings with Chronic Disorders. aug: au: Fjermestad, Krister W. Haukeland, Yngvild B. Mossige, Svein Vatne, Torun M. affil: Department of Psychology, University of Oslo, PO Box 1072, Blindern, 0316, Oslo, Norway Frambu Resource Centre for Rare Disorders, Siggerud, Norway su: Siblings Experience Chronic diseases Genetic disorders Intellectual disabilities Children with intellectual disabilities Chronically ill children Rare diseases sug: subj: Siblings Experience Chronic diseases Genetic disorders Intellectual disabilities Children with intellectual disabilities Chronically ill children Rare diseases keyword: Children Chronic disorders Qualitative analysis Rare disorders Children Chronic disorders Qualitative analysis Rare disorders ab: Knowledge about the experiences of children with chronic disorders (CCD) is often based on parent-report. Obtaining self-report from CCD may be challenging due to cognitive impairments associated with many disorders. We explored siblings' perspectives on the experiences of their brothers and sisters with CCD, which represent a unique intragenerational and peer-based viewpoint. Siblings of children with various genetic disorders involving physical and/or intellectual disabilities were recruited from family courses at a specialist center for rare disorders. Participants (N = 58; M age= 11.4 years, SD = 2.4; range 7 to 17 years; 69.0% girls) attended group sessions focused on siblings' diagnostic knowledge and emotional experiences. We conducted a thematic analysis following guidelines for consensual qualitative research of 20 videotaped and transcribed group sessions for 58 siblings of CCD. We interpreted siblings' perspectives as indicating considerable efforts to understand and reflect upon the state of mind of the CCD along the following main themes: Abilities; Intensions; Insight; Emotions; Personality, preferences and desires; and Normality versus difference. Siblings emphasized CCD's physical, cognitive, and social abilities, focusing more on strengths than limitations. A desire to be normal and lack of insight were common inferred reasons for problematic behavior displayed by the CCD. Siblings expressed fears of bullying of the CCD. In conclusion, siblings show psychologically complex insights into the experiences and mindsets of CCD and should be considered as informants in research and in informing practice interventions for CCD, alongside their parents. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
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