Psychological Adjustment in Apert Syndrome:Parent and Young Person Perspectives


Objective : To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of informing care, and support for this population. Method : Four young people (2 male) aged 11 to 15 years and their mothers were interviewed in their homes using a semistructured interview guide and photo-elicitation methods. Transcripts were analyzed using Interpretive Phenomenological Analysis. Results : Three superordinate themes were identified from the data: (1) Acceptance and Adjustment: A Cyclical Journey; (2) A Barrier to Adjustment: Navigating Treatment; and (3) Facilitating Adjustment: Social Support. Families described adjustment as a cyclical process, which was sensitive to change, particularly in the context of ongoing medical treatment. Families also utilized many resources, particularly in the form of social support, to adjust to the challenges of AS and build resilience. Conclusions : The findings of this study have important implications for the implementation of patient-centered care within designated craniofacial treatment centers, which should at a minimum include the provision of reliable information throughout the treatment pathway, additional support from health professionals at key times of transition, and the coordination of support across medical teams, and other key organizations in the child's life.

Publication DOI:
Divisions: College of Health & Life Sciences > School of Psychology
College of Health & Life Sciences > Aston Institute of Health & Neurodevelopment (AIHN)
College of Health & Life Sciences
Additional Information: © Sage 2021. The final publication is available via Sage at
Uncontrolled Keywords: apert syndrome,parental perception,psychosocial adjustment,quality of life,social support,Oral Surgery,Otorhinolaryngology
Publication ISSN: 1545-1569
Last Modified: 29 May 2024 07:21
Date Deposited: 05 Jan 2022 11:03
Full Text Link:
Related URLs: https://journal ... 556656211069817 (Publisher URL)
http://www.scop ... tnerID=8YFLogxK (Scopus URL)
PURE Output Type: Article
Published Date: 2021-12-30
Published Online Date: 2021-12-30
Accepted Date: 2021-12-01
Authors: Netherton, Jennifer
Horton, Jo
Stock, Nicola M
Shaw, Rachel (ORCID Profile 0000-0002-0438-7666)
Noons, Peter
Evans, Martin J



Version: Accepted Version

| Preview

Export / Share Citation


Additional statistics for this record