Are We Together in This? Relationship Experiences of Parents of Children with Craniofacial Anomalies.

Autor:	Myhre A; Centre of Rare Disorders, Division of Pediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway., Råbu M; Department of Psychology, University of Oslo, Oslo, Norway., Feragen KB; Centre of Rare Disorders, Division of Pediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
Jazyk:	angličtina
Zdroj:	The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association [Cleft Palate Craniofac J] 2024 Oct; Vol. 61 (10), pp. 1646-1656. Date of Electronic Publication: 2023 Jun 06.
DOI:	10.1177/10556656231180512
Abstrakt:	Objective: The birth of a child with a craniofacial anomaly (CFA) can have a profound psychological impact on the family and the parental relationship. The purpose of this study was to qualitatively investigate how a child's CFA condition affected parents' couple relationship. Setting: All patients with a CFA are followed-up by the National Unit for Craniofacial Surgery, a specialized and multidisciplinary team. Hence, participants were recruited within a centralized treatment setting. Design: We used a qualitative approach to explore the relationship experiences of parents of children with CFAs. The interviews were analysed using a hermeneutic-phenomenological approach. Participants: The study included 13 parents, nine mothers and four fathers of children with a range of different CFAs. At the time of the interview, 10 participants were married, one was cohabiting, and two were divorced. Results: Most participants perceived their partners as committed and engaged in caring for their affected child and involved in the family's everyday life, and described a strengthened relationship to their partner after the child with a CFA was born. However, some participants struggled in their relationships with their partners, and did not receive the comfort and support they needed during this critical time, leading to feelings of distance and loneliness. Conclusions: Craniofacial teams should be mindful of the importance of the environment surrounding the child, such as parental relationship and family function. Therefore, a comprehensive approach should be included in team-based care, and couples and families in need of extra support should be referred to relevant specialists. Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Databáze:	MEDLINE
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