All Outputs (100)

“Will you still feel beautiful when you find out you are different?” Parents’ experiences, reflections, and appearance-focused conversations about their child’s visible difference (2021)
Journal Article

To investigate parents’ reflections and experiences of having a child born with an appearance-altering condition, interviews with 33 parents of children born with rare craniofacial conditions were analyzed using inductive thematic analysis. Three the... Read More about “Will you still feel beautiful when you find out you are different?” Parents’ experiences, reflections, and appearance-focused conversations about their child’s visible difference.

Factors associated with psychological adjustment in adults with cleft lip and/or palate: Findings from a national survey in the United Kingdom (2021)
Journal Article

Objectives: Research has identified adults born with cleft lip and/or palate (CL/P) to be at risk of poorer psychological outcomes compared to the general population. This study investigated factors that may contribute to positive and negative adjust... Read More about Factors associated with psychological adjustment in adults with cleft lip and/or palate: Findings from a national survey in the United Kingdom.

Expanding support services for adults born with cleft lip and/or palate in the United Kingdom: An exploratory evaluation of the cleft lip and palate association adult services programme (2021)
Journal Article

Background: The largest group of people living with repaired cleft lip and/or palate (CL/P) are adults. Previous research has identified unmet treatment and psychosocial needs, yet few interventions exist. This article outlines 3 interventions develo... Read More about Expanding support services for adults born with cleft lip and/or palate in the United Kingdom: An exploratory evaluation of the cleft lip and palate association adult services programme.

Facilitators and barriers to delivering an optimal specialist service in the United Kingdom: An example from cleft lip and palate care (2021)
Journal Article

Aim: Despite published standards of care, inequities and variations in specialist care delivery in the United Kingdom have been identified. Using cleft lip and palate (CL/P) care as an example, this study aimed to identify common barriers to deliver... Read More about Facilitators and barriers to delivering an optimal specialist service in the United Kingdom: An example from cleft lip and palate care.

‘My face in someone else’s hands’: A qualitative study of medical tattooing in women with hair loss (2021)
Journal Article

The psychological and social impact of hair loss and its ongoing treatment can be considerable. Medical treatments are not always successful, and alternative treatments, such as medical tattooing, are growing in popularity. The aims of this study wer... Read More about ‘My face in someone else’s hands’: A qualitative study of medical tattooing in women with hair loss.

Interpersonal relationship experiences in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom (2021)
Journal Article

Objectives: Previous research has suggested that adults with a cleft lip and/or palate (CL/P) may find their familial, friend, collegial, and/or romantic relationships impacted by their condition. Building on this prior work, this study examined the... Read More about Interpersonal relationship experiences in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom.

Treatment experiences in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom (2020)
Journal Article

Objectives: Adults with cleft lip and/or palate (CL/P) may report dissatisfaction with aesthetic and/or functional outcomes and express desire for further treatment. Although medical intervention can improve quality of life, surgical procedures requi... Read More about Treatment experiences in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom.

Parent-reported socioemotional and cognitive development in children with a cleft lip and/or palate at 18 months: Findings from a UK birth cohort (2020)
Journal Article

Background: One of the most common congenital conditions in the world, cleft lip and/or palate (CL/P) has been shown to potentially impact long-term physical and developmental outcomes in affected children. However, little is known about the factors... Read More about Parent-reported socioemotional and cognitive development in children with a cleft lip and/or palate at 18 months: Findings from a UK birth cohort.

Microtia and craniofacial microsomia: Content analysis of facebook groups (2020)
Journal Article

Objective An increasing number of patients use social media for health-related information and social support. This study’s objective was to describe the content posted on Facebook groups for individuals with microtia and/or craniofacial microsomia (... Read More about Microtia and craniofacial microsomia: Content analysis of facebook groups.

Physical health in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom (2020)
Journal Article

Objectives Previous research in the field of cleft lip and/or palate (CL/P) has indicated a high prevalence of common health concerns, functional difficulties, and additional conditions known to affect long-term physical health, cognitive development... Read More about Physical health in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom.

Emotional well-being in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom (2020)
Journal Article

Objectives: Previous research with adults born with cleft lip and/or palate (CL/P) has identified a range of concerns regarding mental health and quality of life, concluding that overall emotional functioning is poorer compared to the general populat... Read More about Emotional well-being in adults born with cleft lip and/or palate: A whole of life survey in the United Kingdom.

Satisfaction with health care in families following a diagnosis of cleft lip and/or palate in the United Kingdom (2019)
Journal Article

Objective: Having a child born with a cleft lip and/or palate (CL/P) poses several challenges for new parents and can have a significant psychological impact on the family as a whole. Previous research has indicated that dissatisfaction with health c... Read More about Satisfaction with health care in families following a diagnosis of cleft lip and/or palate in the United Kingdom.

Provision of care for families affected by craniofacial conditions: The views of nonspecialist health professionals (2019)
Journal Article

Objective: A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological wellbeing of the affected family. As the first health professionals likely to come into contact with families, non-specialists, such as... Read More about Provision of care for families affected by craniofacial conditions: The views of nonspecialist health professionals.

Facilitating Positive Psychosocial Outcomes in Craniofacial Team Care: Strategies for Medical Providers (2019)
Journal Article

© 2019, American Cleft Palate-Craniofacial Association. Objective: Psychosocial issues associated with craniofacial diagnoses and the ongoing burden of care can impact the quality of life of patients and families, as well as treatment adherence and o... Read More about Facilitating Positive Psychosocial Outcomes in Craniofacial Team Care: Strategies for Medical Providers.

Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom (2019)
Journal Article

© 2019, American Cleft Palate-Craniofacial Association. Objectives: The importance of psychosocial aspects of care has received growing recognition in recent years. However, the evidence base for psychosocial intervention remains limited. Specialist... Read More about Promoting Psychosocial Adjustment in Individuals Born With Cleft Lip and/or Palate and Their Families: Current Clinical Practice in the United Kingdom.

Medical Stress Reactions and Personal Growth in Parents of Children With a Rare Craniofacial Condition (2019)
Journal Article

© 2019, American Cleft Palate-Craniofacial Association. Background: The birth of a child with a congenital craniofacial anomaly (CFA) can have a profound psychological impact on the family. Despite the complexity and variability in treatment for thes... Read More about Medical Stress Reactions and Personal Growth in Parents of Children With a Rare Craniofacial Condition.

Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate (2019)
Journal Article

© 2019, American Cleft Palate-Craniofacial Association. Objectives: Despite the potential psychological impact of a diagnosis of cleft lip and/or palate (CL/P) on parents, few large-scale studies currently exist. Utilizing data extracted from The Cle... Read More about Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate.

The contribution of a charitable organisation to regional cleft lip and palate services in England and Scotland (2019)
Journal Article

Background: From diagnosis through to adulthood, a cleft lip and/or palate (CL/P) poses a number of challenges for those affected. Alongside the care provided by clinical teams, complementary information and support is offered by charitable organizat... Read More about The contribution of a charitable organisation to regional cleft lip and palate services in England and Scotland.

The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate (2019)
Journal Article

© 2019, American Cleft Palate-Craniofacial Association. Objective: The birth of a child with a cleft lip and/or palate (CL/P) can have a significant emotional and social impact on parents. Yet, the impact on the wider family is rarely investigated. G... Read More about The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate.

“Exposed and Vulnerable”: Parent Reports of Their Child’s Experience of Multidisciplinary Craniofacial Consultations (2019)
Journal Article

Objective: Childhood is a period of extensive socioemotional development, which can be impacted by the presence of a congenital craniofacial anomaly (CFA). Complex multidisciplinary treatment and long-term follow-up are normally required, yet underst... Read More about “Exposed and Vulnerable”: Parent Reports of Their Child’s Experience of Multidisciplinary Craniofacial Consultations.