Kristin Billaud Feragen1, Nicola Marie Stock2, Anita Myhre1, Bernt J Due-Tønnessen3. 1. Centre for Rare Disorders, Oslo University Hospital (Rikshospitalet), Oslo, Norway. 2. Centre for Appearance Research, University of the West of England, Bristol, England. 3. Department of Neurosurgery, Oslo University Hospital (Rikshospitalet), Oslo, Norway.
Abstract
BACKGROUND: The birth of a child with a congenital craniofacial anomaly (CFA) can have a profound psychological impact on the family. Despite the complexity and variability in treatment for these rare conditions, few studies have been conducted into parents' emotional responses to health-care experiences. The aim of the present study was to investigate parents' subjective experiences of their child's condition and treatment using an in-depth qualitative approach. METHODS: Individual semistructured interviews were conducted in person or over the telephone with 48 parents of children with a range of rare CFAs. Interviews were transcribed verbatim, translated into English, and analyzed using inductive thematic analysis. RESULTS: Participants reported physical and psychological symptoms that could be indicative of medical traumatic stress in relation to their child's diagnosis and treatment. Participants described feelings of powerlessness and the weight of being responsible for their child's care. Yet, participants also reported that as a result of their experiences, their perspective on life had changed and they had grown in self-confidence. CONCLUSIONS: The findings provide insight into the complex physical and psychological effects experienced by parents in response to their child's diagnosis and medical treatment, as well as an understanding of how these experiences may also result in personal growth over time. Implementation of trauma-informed evidence-based resources should be considered in craniofacial care and future research, particularly in regard to prevention and treatment of psychological distress.
BACKGROUND: The birth of a child with a congenital craniofacial anomaly (CFA) can have a profound psychological impact on the family. Despite the complexity and variability in treatment for these rare conditions, few studies have been conducted into parents' emotional responses to health-care experiences. The aim of the present study was to investigate parents' subjective experiences of their child's condition and treatment using an in-depth qualitative approach. METHODS: Individual semistructured interviews were conducted in person or over the telephone with 48 parents of children with a range of rare CFAs. Interviews were transcribed verbatim, translated into English, and analyzed using inductive thematic analysis. RESULTS:Participants reported physical and psychological symptoms that could be indicative of medical traumatic stress in relation to their child's diagnosis and treatment. Participants described feelings of powerlessness and the weight of being responsible for their child's care. Yet, participants also reported that as a result of their experiences, their perspective on life had changed and they had grown in self-confidence. CONCLUSIONS: The findings provide insight into the complex physical and psychological effects experienced by parents in response to their child's diagnosis and medical treatment, as well as an understanding of how these experiences may also result in personal growth over time. Implementation of trauma-informed evidence-based resources should be considered in craniofacial care and future research, particularly in regard to prevention and treatment of psychological distress.
Authors: Chaya N Murali; Seema R Lalani; Mahshid S Azamian; Christina Y Miyake; Hadley Stevens Smith Journal: Eur J Hum Genet Date: 2022-06-13 Impact factor: 5.351