My Publications

Below is a repository of links to published articles for which I am a named author. Some are open access, while others will need a library subscription to access. If you are unable to access an article for your personal use, please get in touch so that I can send you a copy.

Emotional Wellbeing in Adults Born with Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom

Authors: Kenny Ardouin, Jess Hare, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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 population. The aim of the current study was to build on this previous work by investigating the self-reported emotional well-being of adults born with CL/P in the United Kingdom.
Design: An online, mixed methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received between July and October 2018. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics and independent t tests.
Results: Almost half of the sample reported a diagnosis of a mental health condition. Scores on standardized measures indicated significantly lower global self-worth, higher levels of fear of negative appearance evaluation, and lower self-perceived job competence compared to normative data. Scores of overall body esteem were in line with the general population. Most participants had not received psychological support from their regional CL/P team and 41% were unaware of their entitlement to treatment from the National Health Service.
Conclusions: Individuals with CL/P may be at risk of emotional distress persisting into adulthood. The integration of routine psychological support from an early age is highly recommended, as is information for young adults about to complete routine treatment. Comprehensive psychological screening for adults returning to the service later in life is also strongly advised.

Link to Journal Article

Physical Health in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom

Authors: Kenny Ardouin, Sinead Davis, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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, and psychological well-being. The aim of the present study was to examine the self-reported physical health of a national sample of adults born with CL/P.
Design: Drawing upon previous literature, an online, mixed-methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received between July and October 2018. Qualitative data were analyzed using inductive content analysis, while quantitative data were analyzed using descriptive statistics.
Results: A considerable proportion of participants reported one or more co-morbid conditions, including common health concerns, difficulties related to language and/or learning, unresolved speech and/or hearing issues, problems with vision, breathing difficulties, and concerns related to eating and drinking. Many participants were unaware of their entitlement to specialist treatment, and some had experienced difficulties accessing specialist services through their general practitioner (GP).
Conclusions: Individuals with CL/P may be at risk of physical health issues persisting into adulthood. The monitoring of physical symptoms from an early age is recommended, as is a routine physical assessment for adults returning to the CL/P service later in life. Education for both GPs and adults is warranted. Future studies could investigate the wider prevalence of co-morbid conditions in CL/P, in order to better understand the longer-term health burden.

Link to Journal Article

Interpersonal Relationship Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom

Authors: Kenny Ardouin, Matt Hotton, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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 self-reported interpersonal experiences of a national sample of adults born with CL/P.
Design: An online survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research. Data from 181 participants were included in the present study, collected between July and October 2018. Qualitative data were analysed using inductive content analysis, while quantitative data were analyzed using descriptive statistics and independent t tests.
Results: Most participants reported having good relationships with family members and existing friends with similar patterns of marriage as the general population. However, some experienced difficulties initiating new friendships and romantic relationships. Participants described bullying and discrimination in adulthood, most often in public settings and the workplace. Participants reported lower satisfaction with intimate relationships and less secure attachment compared to the general population. Concerns regarding the heritability of CL/P and its impact on the decision to have a family were also reported.
Conclusions: Individuals with CL/P are at risk of negative social experiences, which if not appropriately addressed may impact psychological well-being in adulthood. The findings illustrate the importance of routine psychosocial support from childhood onward to help individuals with CL/P build social skills, self-esteem, and social confidence and to develop mutually fulfilling friendships and intimate relationships. Additionally, societal campaigns to raise awareness and target discrimination may be helpful.

Link to Journal Article

Treatment Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom

Authors: Kenny Ardouin, David Drake, Sandip Popat, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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 require complex decision-making and can invoke psychological distress. The aim of this study was to gain a better understanding of ongoing treatment-related support needs by examining self-reported treatment experiences of a sample of adults born with CL/P.
Design: An online, mixed-methods survey was designed by the Cleft Lip and Palate Association in collaboration with the Centre for Appearance Research at the University of the West of England. A total of 207 eligible responses were received. Qualitative data were analysed using inductive content analysis, while quantitative data were analyzed using descriptive statistics.
Results: Although participants were satisfied with surgical and dental/orthodontic outcomes overall, many reported ongoing difficulties. Some stated they would seek further treatment while others felt conflicted about risks and benefits. Some had refused treatment, citing treatment fatigue, anxiety, and/or concerns that treatment would be unsuccessful. More than 40% of participants were unaware of their entitlement to cleft-related treatment provided by the National Health Service, and many others had experienced difficulties accessing care.
Conclusions: Although advances in health care may offer opportunities for adults to improve their quality of life, treatment decisions should be weighed with the support of a clinical psychologist where available. Guidance for young adults considering future treatment is also recommended. Finally, training and resources for local practitioners may improve general awareness of CL/P services and increase access to specialist care for adults with ongoing CL/P-related concerns.

Link to Journal Article

Factors Associated With Psychological Adjustment in Adults With Cleft Lip and/or Palate: Findings From a National Survey in the United Kingdom

Authors: Bruna Costa, Kenny Ardouin, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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 adjustment in adults born with CL/P.
Design: A survey was designed and distributed by the Cleft Lip and Palate Association in collaboration with the University of the West of England. There were 207 eligible responses (95% completed online) received between July and October 2018. Dependent variables included the Body Esteem Scale for Adolescents and Adults, Harter’s Self Perception Profile for Adults (Global Self-Worth, Social Competence, and Intimacy subscales), the Fear of Negative Appearance Evaluation Scale, and the Revised Adult Attachment Scale. Independent variables were the Revised Life Orientation Test, biodemographic data, and self-reported single-item questions.
Results: Factors associated with positive adjustment included reports of a happy childhood, talking about CL/P with family, close friendships, comfort in public spaces, satisfaction with appearance, and a positive life orientation. Psychological distress was associated with a desire for further surgery to improve appearance and/or function.
Conclusions: Several factors were identified that may influence psychological adjustment in adults with CL/P. Throughout childhood, family-centered practice to support family cohesion and an open dialogue about CL/P is indicated, as is support for young people to develop social confidence. For adults returning to the cleft service, treatment options for appearance and/or functional concerns should be explored, with access to psychological support when indicated. Interventions to increase optimism, resilience, and self-acceptance may also be warranted throughout the life span.

Link to Journal Article

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

Authors: Kenny Ardouin, Nicky Davis, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal

Abstract

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 developed by the Cleft Lip and Palate Association as part of its 3-year community-based Adult Services Programme; an Adults Conference, a series of panel discussions (“Cleft Talk”) streamed in podcast/video format, and a Leaver’s Pack of resources for adults wishing to
return to cleft care.
Methods: Feedback from attendees of the Adults Conferences (2018-2019) was collected using specifically developed evaluation forms. Streaming metrics and social media interactions were extracted for Cleft Talk panel discussions (2019-2020). The Leaver’s Pack was piloted in 2020, using an online evaluation form. Specialist health professionals were invited to provide feedback or
participate in a one-to-one interview regarding their perceived impact of the program.
Results: All 3 interventions across the different modalities received support from participating adults, demonstrating potential to meet adults’ needs across the life span. Health professionals also offered support for the program, viewing the interventions as a valuable adjunct to formal medical CL/P services.
Conclusions: This exploratory evaluation indicates that peer- and community-led interventions, in combination with ongoing access to specialist medical care, can have a range of positive impacts for adults with CL/P. There is scope for similar initiatives to be developed internationally and for individuals with other craniofacial conditions. Not-for-profit organizations are encouraged to
routinely evaluate their interventions to create a stronger evidence base for their valuable work.

Link to Journal Article