Outputs (12)

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.

Caring for a child with a cleft lip and/or palate: A narrative review (2024)
Journal Article

Raising a child with healthcare needs places additional demands on caregivers. In 2012, Nelson and colleagues authored a review of 57 papers pertaining to parents’ experiences of caring for a child with cleft lip and/or palate (CL/P). Thanks in large... Read More about Caring for a child with a cleft lip and/or palate: A narrative review.

Surgery for craniosynostosis: Developing a psychosocial booklet for families (2024)
Journal Article

Parents of children with craniosynostosis may experience psychological distress, particularly during intensive periods of treatment. Yet, recent research indicates parents may not be accessing the support they need to cope with common challenges. The... Read More about Surgery for craniosynostosis: Developing a psychosocial booklet for families.

Psychosocial experiences of Spanish-speaking parents of children with craniofacial microsomia (2024)
Journal Article

Craniofacial microsomia (CFM) and microtia psychosocial research in the US is primarily with English-speaking participants. Given that 19% of the US is Latino, and there is a higher prevalence of CFM in Latino populations, this study aims to describe... Read More about Psychosocial experiences of Spanish-speaking parents of children with craniofacial microsomia.

“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.

Pediatric medical traumatic stress in individuals with craniofacial conditions (2024)
Journal Article

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 r... Read More about Pediatric medical traumatic stress in individuals with craniofacial conditions.