Anna Stenson Zerpe: Having a child with non-syndromic craniosynostosis: Parents' experiences of care, need of support and perceived stress

Abstract

Objective: Being a parent of a child with a diagnosis of craniosynostosis that requires surgery can lead to anxiety and emotional distress. The general aim was to explore parents' experiences when their child is diagnosed with and treated for non-syndromic craniosynostosis. This was accomplished by investigating how parents perceived treatment, information, and participation in care, as well as their parental stress, symptoms of anxiety and depression, and health-related quality of life.

Methods: Study I investigated Swedish parents' (n=20) experiences of having a child with craniosynostosis and their perceptions of the care provided by conducting interviews and thematic analysis. Study II explored parents' (n=19) experiences of the time at the hospital and the year after discharge by conducting interviews and content analysis. Study III explored parents´ satisfaction with hospital care and factors that influenced their perception of quality of care using questionnaires (n=98) and interviews (n=19), employing a mixed method. Study IV assessed parents' perceived parental and psychological stress and health-related quality of life before and one year after surgery, using questionnaires (n=29).

Results: Parents rarely had previous knowledge about craniosynostosis. For this reason, the craniofacial team was highlighted as the most important source of information and support. Parents described the time in the hospital and after discharge as challenging but ultimately good, and support from family, peers, and the expert team was considered essential. Parents were generally satisfied with hospital care, and factors existed that either facilitated or impeded their experience of quality of care. No differences regarding parental stress, health-related quality of life, and psychological distress before and one year after the child's surgery were found, but there was an association between parental stress and symptoms of depression both before and one year after surgery.

Conclusions: This thesis provides an understanding of parents' experiences when having a child undergoing craniosynostosis surgery. Most parents were satisfied with the care provided, but areas of improvement were described. There appears to be an association between parental stress and symptoms of depression. The findings highlight that healthcare professionals should be more responsive to parents´ different care needs.