title: Risk and protective influences in the lives of siblings of youths with spina bifida.
abstract: The impact of childhood chronic health conditions like spina bifida (SB) is a shared family experience. However, the lived experience of siblings is not well known. One hundred and fifty-five brothers and sisters of a child with SB responded to an open-ended question included in an anonymous self-administered mail questionnaire designed to enhance awareness of how adolescent siblings experience this chronic condition. Content analysis performed by interdisciplinary authors identified four domains--Rewards and Consequences of Spina Bifida, Journey Toward Acceptance of Spina Bifida, Emotional Climate of Siblings, and Qualities of the Social Environment--that depict emotional complexity in response to the diverse risk and protective influences present in the lives of siblings. By bolstering the siblings' strengths and resources found in their adaptive coping mechanisms, spirituality, cohesive family ties, and supportive peer friendships, social workers and other health care professionals may help them to successfully navigate the intense and confusing emotions that may naturally spring from the challenges and opportunities associated with SB.
authors.affiliation: School of Social Work, University of Maryland, Baltimore, MD 21201, USA. mbellin@ssw.umaryland.edu
authors.forename: Melissa H
authors.initials: MH
authors.lastname: Bellin
authors.forename: Pamela J
authors.initials: PJ
authors.lastname: Kovacs
authors.forename: Kathleen J
authors.initials: KJ
authors.lastname: Sawin
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000367:Age Factors; D002648:Child; D002908:Chronic Disease; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D018802:Patient-Centered Care; D010865:Pilot Projects; D011581:Psychological Tests; D011594:Psychometrics; D012306:Risk; D035781:Siblings / Q000523:psychology*; D012938:Social Perception; D012944:Social Support; D016135:Spinal Dysraphism / Q000523:psychology* / Q000628:therapy; D011795:Surveys and Questionnaires