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All Outputs (111)

Embarking on a treatment journey: Experiences of caregivers of young children with craniofacial microsomia (2025)
Journal Article

Caregiver psychosocial adjustment can be impacted by their children’s early treatment for craniofacial microsomia (CFM). A deeper understanding of caregiver early experiences is needed to advance family-centered clinical care. This study aimed to des... Read More about Embarking on a treatment journey: Experiences of caregivers of young children with craniofacial microsomia.

The psychosocial impact of cleft lip and/or palate on caregivers and individuals in low- and middle-income countries: A narrative review (2025)
Journal Article

Low- and middle-income countries (LMICs) represent the highest incidence, morbidity, and Disability Adjusted Life Years for cleft lip and/or palate (CL/P) globally. Most cleft care models now include psychosocial support, yet the psychosocial impacts... Read More about The psychosocial impact of cleft lip and/or palate on caregivers and individuals in low- and middle-income countries: A narrative review.

Understanding the psychological impact of medical care experiences on adults with craniofacial conditions: A pilot survey of traumatic stress symptoms and resilience (2025)
Journal Article

Craniofacial conditions often require extensive medical care and surgeries throughout childhood and adolescence. However, there is limited research investigating the psychological effects of craniofacial care including risks for medical traumatic str... Read More about Understanding the psychological impact of medical care experiences on adults with craniofacial conditions: A pilot survey of traumatic stress symptoms and resilience.

Understanding the impact of a cleft camp in Aotearoa New Zealand on sociability, self-esteem and confidence (2025)
Journal Article

Objective: Although camps have been offered previously for cleft and craniofacial conditions, few have been evaluated empirically. This study sought to determine whether a community-led camp peer support event led to improved sociability and self-est... Read More about Understanding the impact of a cleft camp in Aotearoa New Zealand on sociability, self-esteem and confidence.

Combining speech language therapy and clinical psychology for adolescents and adults with CL/P: A pilot clinic in New Zealand (2025)
Journal Article

Objective: This pilot study sought to determine whether adolescent and adult patients benefit from weekly cleft-specific Speech Language Therapy (SLT) services, and to understand how concurrent psychology clinic services influence patient-reported ou... Read More about Combining speech language therapy and clinical psychology for adolescents and adults with CL/P: A pilot clinic in New Zealand.

Surgical decision-making regarding hearing and ear reconstruction in craniofacial microsomia: Exploring caregiver narratives (2025)
Journal Article

Treatment decision-making is an integral but complex part of healthcare, particularly in the context of craniofacial surgeries. The aim of the current study was to explore caregiver narratives to inform future surgical care delivery and best practice... Read More about Surgical decision-making regarding hearing and ear reconstruction in craniofacial microsomia: Exploring caregiver narratives.

Cleft lip and palate research in the United Kingdom: Advances in clinical psychological knowledge and future directions (2025)
Journal Article

In 2012, the James Lind Alliance (JLA) worked with individuals with cleft lip and/or palate (CL/P), their families and clinicians to identify priority areas for future research. This article reviews progress conducted in [country] in the three JLA pr... Read More about Cleft lip and palate research in the United Kingdom: Advances in clinical psychological knowledge and future directions.

Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting (2024)
Journal Article

Background Inclusivity in research priority setting is fundamental to capturing the opinion of all stakeholders in a research area. Globally, experienced healthcare workers often have deep insights that could impactfully shape future research, and a... Read More about Addressing barriers to global multidisciplinary stakeholder inclusivity: Lessons from global orofacial cleft research priority setting.

“I can't provide what my child needs”: Early feeding experiences of caregivers of children with craniofacial microsomia (2024)
Journal Article

Purpose: Craniofacial microsomia (CFM) is a congenital condition that can be associated with feeding challenges in infants. As part of the larger ‘Craniofacial microsomia: Accelerating Research and Education (CARE)’ program, this study described care... Read More about “I can't provide what my child needs”: Early feeding experiences of caregivers of children with craniofacial microsomia.

A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia (2024)
Journal Article

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families’ treatment experiences or the impact of CFM on caregivers’... Read More about A conceptual thematic framework of psychological adjustment in caregivers of children with craniofacial microsomia.

Assessing appearance, speech, and hearing (dis)satisfaction in individuals with cleft lip and/or palate: A contribution to general population norms (2024)
Journal Article

Background: Individuals with cleft lip and/or palate (CL/P) may grow up with a visible facial difference, alongside speech and/or hearing challenges. Self-perceptions are stronger predictors of psychosocial adjustment than objective assessments, high... Read More about Assessing appearance, speech, and hearing (dis)satisfaction in individuals with cleft lip and/or palate: A contribution to general population norms.

“When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis (2024)
Journal Article

Objective: Despite growing recognition that congenital craniofacial conditions have lifelong implications, psychological support for adults is currently lacking. The aim of this project was to produce a series of short films about living with cranios... Read More about “When I was younger, my story belonged to everyone else”: Co-production of resources for adults living with craniosynostosis.

“It’s on your shoulders now” Transitioning from child-to-adult UK cleft lip/palate services: An exploration of young adults' narratives (2024)
Journal Article

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... Read More about “It’s on your shoulders now” Transitioning from child-to-adult UK cleft lip/palate services: An exploration of young adults' narratives.

Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program (2023)
Journal Article

Objective: Craniofacial microsomia (CFM) is a broad clinical term used to describe a congenital condition most commonly involving the underdevelopment of the external ear, mandible, soft tissues, and facial nerve. Despite medical advances, understand... Read More about Establishing an international interdisciplinary research network in craniofacial microsomia: The CARE Program.