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All Outputs (80)

“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.

Feasibility and acceptability of the promoting resilience in stress management-parent (PRISM-P) intervention for caregivers of children with craniofacial conditions (2023)
Journal Article

Objectives: Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children wit... Read More about Feasibility and acceptability of the promoting resilience in stress management-parent (PRISM-P) intervention for caregivers of children with craniofacial conditions.

Transitioning from child to adult cleft lip and palate services in the United Kingdom: Are the NICE Guidelines reflected in young adults’ experiences? (2022)
Journal Article

Cleft lip and/or palate (CL/P) is one of the most common congenital conditions worldwide. Individuals born with CL/P will embark on a long-term treatment pathway throughout childhood and often into adulthood. As they grow older, young people become m... Read More about Transitioning from child to adult cleft lip and palate services in the United Kingdom: Are the NICE Guidelines reflected in young adults’ experiences?.

Facilitators and barriers to delivering an optimal specialist service: An example from cleft lip and/or palate care (2022)
Journal Article

Background/Aims Despite published standards of care, inequities and variations in specialist care delivery in the UK have been identified. Using cleft lip and palate services as an example, this study aims to identify potential facilitators and commo... Read More about Facilitators and barriers to delivering an optimal specialist service: An example from cleft lip and/or palate care.

Exploring parents’ attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study (2022)
Journal Article

Background: Burn injuries affect more than 60,000 children every year in the UK, with many experiencing scarring as a result. Scarring can be highly variable, and research is required to explore the factors that may influence variability, as well as... Read More about Exploring parents’ attitudes towards a multicentre cohort study of children with burns injuries: A qualitative interview study.

Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades (2022)
Journal Article

Objective: This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. Design: A narrative review of papers January 2000 to July 2021 related... Read More about Psychosocial and health-related experiences of individuals with microtia and craniofacial microsomia and their families: Narrative review over two decades.

The impact of the Covid-19 pandemic on cleft lip and palate service delivery for new families in the United Kingdom: Medical and community service provider perspectives (2022)
Journal Article

Objectives Professionals in the United Kingdom providing care to new families affected by cleft lip and/or palate (CL/P) had to adapt to ensure families’ needs were met during a time of uncertainty due to Covid-19. The aims of this study were to exp... Read More about The impact of the Covid-19 pandemic on cleft lip and palate service delivery for new families in the United Kingdom: Medical and community service provider perspectives.

Isolation, uncertainty and treatment delays: Parents’ experiences of having a baby with cleft lip/palate during the Covid-19 pandemic (2021)
Journal Article

Objectives: Previous literature finds that having a child with a cleft lip and/or palate (CL/P) may pose social and emotional challenges for parents. For parents of children born during the Covid-19 pandemic, such challenges may be heightened. Furthe... Read More about Isolation, uncertainty and treatment delays: Parents’ experiences of having a baby with cleft lip/palate during the Covid-19 pandemic.