title: Perspectives of adolescent siblings of children with Down syndrome who have multiple health problems.
abstract: Authors of this qualitative descriptive study interviewed 21 adolescent siblings of children with Down syndrome (DS) who also had additional health problems rated as requiring extensive care by parents. Analysis revealed positive/negative aspects of the experience; however, participants emphasized the positive rather than negative experiences and focused more on the fact that the child had DS rather than health problems requiring additional care. Most said they would not change anything about their experience and did not believe the child with DS would ever live independently. They did, however, acknowledge their family was affected by the caregiving needs of the child which often required extra vigilance or specific care depending on the health problem. Information gained can help improve understanding of adolescent sibling perceptions about living with a child with DS who also requires additional care because of ongoing health problems so more appropriate and individualized nursing interventions can be provided.
authors.affiliation: Tricity Medical and Urgent Care, Pleasant Grove, UT, USA.
authors.forename: Carol
authors.initials: C
authors.lastname: Graff
authors.forename: Barbara
authors.initials: B
authors.lastname: Mandleco
authors.forename: Tina Taylor
authors.initials: TT
authors.lastname: Dyches
authors.forename: Catherine R
authors.initials: CR
authors.lastname: Coverston
authors.forename: Susanne Olsen
authors.initials: SO
authors.lastname: Roper
authors.forename: Donna
authors.initials: D
authors.lastname: Freeborn
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology; D002648:Child; D019988:Children with Disabilities / Q000523:psychology; D004314:Down Syndrome / Q000150:complications*; D022143:Family Nursing / Q000379:methods*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology; D036301:Qualitative Research; D012801:Sibling Relations; D035781:Siblings / Q000523:psychology*; D012923:Social Class; D012944:Social Support; D055815:Young Adult