Decision‐making process to undergo surgery among adolescent patients with cleft lip and/or palate

Purpose: This article reviews the literature focused on the psychological effects of craniofacial care for patients and their families. It provides an overview of pediatric medical traumatic stress (PMTS) associated with craniofacial conditions and related care, along with a review of its risk and protective factors. Findings from studies of PMTS in craniofacial populations are also reviewed. Conclusions: The article concludes with strategies for identifying, addressing, and preventing medical traumatic stress in the context of craniofacial care. Specific implications for speech-language pathologists are also shared with respect to ways of minimizing risks for medical traumatic stress in craniofacial care. Future directions are also delineated and include strategies to improve screening and support for patients with craniofacial conditions and their families, along with the development of interventions aimed at increasing resilience.

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“It's On Your Shoulders Now” Transitioning from Child-to-Adult UK Cleft Lip/Palate Services: An Exploration of Young Adults’ Narratives

McWilliams,

Thornton,

Hotton

et al. 2024

The Cleft Palate Craniofacial Journal

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Objectives Treatment for cleft lip and/or palate (CL/P) in the United Kingdom is administered on a standardised pathway from diagnosis to early adulthood, with options to be re-referred in later life. At age 16, patients become responsible for their treatment decisions. Evidence from the wider health literature indicates this transition can be challenging and that this population may require additional support. The present study explored young people's experiences of transition to adult care in the context of CL/P services, with the aim of identifying support needs and informing future service delivery. Design Individual semi-structured interviews were conducted with 15 individuals with CL/P (aged 17–25 years) to explore transition experiences. Interviews lasted an average of 69 min and data were analysed using reflexive thematic analysis. Results Four themes, with subthemes, were identified: 1) Readiness for Transition covered feelings of preparedness and how health professionals approached transition; 2) Making Decisions as an Adult described concerns and considerations when making treatment decisions; 3) Finding and Using Support, reflected the roles of caregivers and peers in developing self-advocacy; and 4) Reflections on Transition Care offered insight into how care could be improved. Conclusion Individuals born with CL/P may experience challenges in becoming responsible for their own care and treatment decisions. The findings of this study indicate that a dedicated transition protocol may be beneficial, such that adolescents are prepared to confidently access and manage their care into adulthood. Opportunities for improvements in transition planning and provision are discussed.

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Decision‐making process to undergo surgery among adolescent patients with cleft lip and/or palate

Cited by 3 publications

References 26 publications

Treating Secondary Cleft Lip Deformity: Surgical Technique and Outcome

Treating Secondary Cleft Lip Deformity: Surgical Technique and Outcome

Pediatric Medical Traumatic Stress in Individuals With Craniofacial Conditions

“It's On Your Shoulders Now” Transitioning from Child-to-Adult UK Cleft Lip/Palate Services: An Exploration of Young Adults’ Narratives

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