Medical Stress Reactions and Personal Growth in Parents of Children With a Rare Craniofacial Condition

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.

Children with a rare congenital genetic disorder: a systematic review of parent experiences

“…(not specified) Bruns & Schrey [ 59 ]* USA Trisomy 9, 13, 18 20 40–370 months Thematic analysis? (not specified) Cardinali et al [ 29 ] Italy Several 15 N/A Grounded theory Currie & Szabo [ 30 ]** Canada Several 15 < / = 15 years Interpretetive thematic analysis Currie & Szabo [ 31 ]** Canada Several 15 < / = 11 years Hermeneutical phenemenology Currie & Szabo [ 49 ]** Canada Several 15 < / = 11 years Hermeneutic phenomenology Feragen et al [ 32 ] Norway Congenital craniofacial anomaly (CFA) 48 One year–18 years Inductive thematic analysis Germeni et al [ 50 ] Italy Bartter syndrome 13 N/A Thematic analysis Gerstein et al [ 33 ] United States Urea cycle disorders 35 0—> 18 Thematic content analysis Gilmore et al [ 34 ] Australia …”

“…More specifically, parents reported diagnostic delays [ 27 , 29 , 50 ], and health care professionals that could not provide the information they needed about the rare condition once diagnosis was set [ 27 , 30 , 34 – 36 , 39 , 48 ]. Parents did not receive the guidance normally provided within the health care system [ 27 , 33 , 41 – 43 ], which could lead to a loss of trust and confidence in those who are meant to be the experts [ 32 , 46 , 51 , 52 ]. Other consequences of a lack of knowledge within the health care system could be the unintended consequence of delaying treatment [ 27 , 37 ].…”

“…The lack of knowledge within the health care system led to many unknowns due to a delayed or complicated diagnostic and treatment process with several consultations [ 27 , 30 , 31 , 38 – 41 , 47 – 49 , 53 , 54 ]. The diagnostic process and first phase of the child’s life had therefore been demanding for many parents [ 32 , 40 , 48 , 53 , 56 ]. The longer and more complex the diagnostic process, the more stress the parents felt [ 50 ].…”

“…Parents described how having a child with a rare condition had an impact on the whole family, siblings included [ 29 , 32 , 33 , 38 , 41 , 44 , 45 , 48 , 50 , 52 , 53 , 55 , 58 , 59 ].…”

Research on Family Health and Children and Youth With Special Health Care Needs

“…Concerns regarding medical trauma and post-traumatic stress disorder from a child's illness are discussed. 9 Parents have been noted to have higher rates of anxiety and depression than the general population. 10 Parents who report having significant and undersupported care responsibilities for their child may experience caregiver strain, which contributes to poor quality of life.…”