Premium
Experiences of siblings of patients with Fanconi anemia
Author(s) -
Hutson Sadie P.,
Alter Blanche P.
Publication year - 2007
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.20913
Subject(s) - medicine , psychosocial , sibling , worry , qualitative research , fanconi anemia , disease , focus group , family medicine , psychiatry , anxiety , developmental psychology , psychology , pathology , genetics , social science , business , marketing , sociology , biology , dna repair , gene
Background 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). Procedure 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. Results 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. Conclusions 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.