Journal of Holistic Nursing

 

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Journal of Holistic Nursing, Vol. 20, No. 3, 279-304 (2002)
DOI: 10.1177/089801010202000307

Factors Associated with Quality of Life in Adolescents with Spina Bifida

Kathleen J. Sawin, D.N.S., C.P.N.P., F.A.A.N.

Virginia Commonwealth University and Children’s Hospital

Timothy J. Brei, M.D.

Riley Hospital for Children and Indiana University

Constance F. Buran, D.N.S., C.N.S.

Riley Hospital for Children

Philip S. Fastenau, Ph.D.

Indiana University Purdue University Indianapolis

Adolescents with complex neurological conditions such as spina bifida require a holistic approach to their health care. Quality of Life (QOL) and the factors associated with QOL are important and understudied variables for these adolescents. A sample of 60 adolescents and their parents was interviewed to determine a) the adolescent’s and family’s QOL, b) condition/adolescent/family factors associated with QOL measures, and c) the relationship between adolescent and parent ratings on QOL measures. QOL was moderately high in these families. Few condition measures were related to QOL. However, several adolescent and family factors were significantly related to both overall QOL and health-related quality of life. There was no difference between adolescents and their parents on overall adolescent and family QOL items. Holistic practitioners need to be aware of areas perceived positively and negatively by these adolescents and their families as well as factors associated with outcomes.


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