Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia |
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Authors: | Heather A Zierhut Dianne M Bartels |
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Institution: | (1) Bone Marrow Transplantation Program, University of Minnesota Medical Center Fairview, Minneapolis, MN 55455, USA;(2) Department of Pediatrics, University of Minnesota Medical Center Fairview, 420 Delaware Street SE, MMC 484, Minneapolis, MN 55455, USA;(3) Center for Bioethics, University of Minnesota, Minneapolis, MN 55455, USA;(4) Department of Medicine, University of Minnesota, Minneapolis, MN 55455, USA |
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Abstract: | Fanconi Anemia (FA) is a rare genetic disease that generally affects children and results in bone marrow failure requiring
blood or marrow transplantation for survival. A unique feature of the condition is the long, often many years, waiting period
between genetic diagnosis and treatment. This qualitative study looked at the lived experience of parents confronting their
child’s diagnosis of FA. We aimed to describe factors which parents found helpful or detrimental during the waiting time period
and to recommend strategies to support families who will have these experiences in the future. Categories that emerged were:
parents’ emotional responses, thoughts about FA (which occurred daily for most parents), sources of stress, mechanisms of
coping, family dynamics and responses that were supportive and non-supportive. We found that most parents experience stress,
uncertainty, and active surveillance throughout the course of the illness. Healthcare professionals, and especially physicians,
were agents of both the most and least supportive experiences of parents. Parents described family centered team care as helpful
throughout the illness and health professional education as a priority need. |
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