Waiting for the next Shoe to Drop: The Experience of Parents of Children with Fanconi Anemia
| Autor: | Heather Zierhut, Dianne M. Bartels |
|---|---|
| Rok vydání: | 2011 |
| Předmět: |
Adult
Male Parents medicine.medical_specialty Coping (psychology) Genetic counseling Disease Young Adult Social support Professional-Family Relations Surveys and Questionnaires Adaptation Psychological medicine Humans Parent-Child Relations Child Psychiatry Genetics (clinical) business.industry Public health Stressor Infant Newborn Infant Social Support Disabled Children Self Concept Fanconi Anemia Child Preschool Female business Psychosocial Stress Psychological Qualitative research |
| Zdroj: | Journal of Genetic Counseling. 21:45-58 |
| ISSN: | 1573-3599 1059-7700 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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