Parents' experience having a child diagnosed with more than one genetic disorder
Genetic disorders are defined as disorders that are caused wholly or partly by genetic factors. While the effect of having a child diagnosed with a single genetic disorder has been extensively studied, to our knowledge, no published studies have described the psychosocial impact that having a child diagnosed with co-occurring genetic disorders has on parents. In the presented study, semi-structured interviews were conducted with five parents with children diagnosed with two distinct genetic disorders. These interviews explored the experiences of the parents and the challenges that arise as a result of this unique situation. Interview transcripts were analyzed using the qualitative method of interpretative phenomenological analysis (IPA). Results indicated that these parents share some experiences similar to those previously reported by parents of children with a single genetic condition, such as emotions around the diagnosis, impact on relationships with family and friends and changes in values and view on life. However, the findings also elicited some novel experiences and challenges faced by families of children with more than one genetic diagnosis. These challenges included frustration toward healthcare providers as a result of parents’ opinions not being heard, delay in the initial diagnosis and difficulty balancing the medical management of two distinct conditions. Describing and analyzing the experiences of parents raising a child with multiple genetic disorders may help to provide guidance for healthcare professionals to better understand and effectively address issues faced by these families.