This article is a US Government work and, as such, is in the public domain in the United States of America.
Experiences of siblings of patients with Fanconi anemia†
Version of Record online: 15 JUN 2006
Published 2006 Wiley-Liss, Inc.
Pediatric Blood & Cancer
Volume 48, Issue 1, pages 72–79, January 2007
How to Cite
Hutson, S. P. and Alter, B. P. (2007), Experiences of siblings of patients with Fanconi anemia. Pediatr. Blood Cancer, 48: 72–79. doi: 10.1002/pbc.20913
- Issue online: 17 NOV 2006
- Version of Record online: 15 JUN 2006
- Manuscript Accepted: 1 MAY 2006
- Manuscript Received: 8 FEB 2006
- National Cancer Institute Cancer Research Training Award (to S.P.H.)
- National Institute of Nursing Research T32 Pre-doctoral Training Award in Psychosocial Oncology (University Of Pennsylvania School Of Nursing) (to S.P.H.)
- American Cancer Society Doctoral Degree Scholarship in Cancer Nursing (to S.P.H.)
- Virginia Henderson Clinical Research Award, Sigma Theta Tau International (to S.P.H.)
- chronic disease;
- fanconi anemia;
- psychosocial aspects;
Clinical management of families with autosomal recessive genetic disorders focuses almost exclusively on the affected family members. However, clinically unaffected members of such families may also be severely troubled by the serious illness in a family member. The purpose of this study was to explore the experiences of healthy siblings of patients with a chronic genetic disease, Fanconi Anemia (FA).
We used a qualitative, descriptive design, which consisted of in-depth, semi-structured interviews. A convenience sample of nine siblings of patients with FA was recruited from a National Cancer Institute clinical research protocol, which targets families with inherited bone marrow failure syndromes. NVivo 2.0 software facilitated qualitative content analysis of the data.
Siblings' rich descriptions provided novel insights into the intricate hardships of living within a family in which a rare, life-threatening, chronic genetic illness in one member is the focus of daily life. Four major themes of the sibling experience emerged from the interview data: (1) containment, (2) invisibility, (3) worry, and (4) despair.
Our data suggest that unrecognized psychosocial issues exist for the apparently healthy siblings of patients with FA. This study explores the psychosocial consequences of living in a family with FA and one of only a few studies to explore the sibling experience of chronic illness using a contemporaneous approach. These findings support the need for an increased awareness among health care providers; future hypothesis driven investigation, and improved assessment of problems with potential psychological morbidity. Pediatr Blood Cancer 2007;48:72–79. Published 2006 Wiley-Liss, Inc.