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.
Long-term outcomes in individuals with cleft : designing and evaluating community and clinic-based interventions in Aotearoa New Zealand. (2025)
Author: Kenny Ardouin
Thesis: University of Canterbury Doctoral (PhD) Thesis
Abstract:
Cleft lip and/or palate (cleft) is increasingly recognised as a long-term condition with implications across the lifespan. However, comparatively little is known about the long-term impacts of cleft from the perspective of the people who live with the condition. This is particularly true in New Zealand (NZ) where research to understand the experiences, needs, and wishes of adults is lacking. Additionally, the healthcare services for cleft, such as speech language therapy (SLT), are not yet provisioned or sufficiently resourced to deliver care across the lifespan. Psychological support services which are commonly found in some international cleft services, are either absent or insufficient in NZ. Resourcing constraints extend to community-led peer support services in NZ which deliver support for parents of infants and young children, but do not currently offer opportunities for older children and adults to interact and access peer support.The work presented in this PhD programme seeks to understand the longer-term holistic effects of cleft on physical, psychological, and social functioning in New Zealand adolescents and adults. The programme then uses this information to design, deliver, and evaluate a series of clinic and community-based interventions intended to provide holistic, affirming, and oftentimes preventative care to enhance speech, psychological, and social function in this population. This thesis presents four novel studies, two book chapters, and two collaborative ‘Perspectives’ articles, as part of a doctoral programme of research. The first study pilots the introduction of routine patient-reported outcome measures into NZ hospital cleft care services and evaluates cleft team clinician perspectives of the same. The second study collates clinician insights into the process of patient transition from paediatric to adult care. In a collaboration between a university clinic and hospital cleft team, a hybrid SLT and clinical psychology clinic for adolescents and adults is piloted in the third study. The final study utilises collaboration with a community support organisation to implement a multiday residential camp intervention for 10-18 year olds across NZ.In addition, and in recognition of the inclusion of individuals with lived experience as integral to the success of any intervention or research project, a perspectives article on lived experience representation in the design, implementation, and evaluation of research is presented prior to the first intervention study. A book chapter on shared decision-making builds upon this by considering the role of clinicians, patients (and often family) in the determination of individual treatment pathways. Recognising that speech language therapists may not have exposure to working with adults with cleft during their training, a book chapter is presented offering guidance for speech language therapists working with this population based on research findings from this doctoral programme and review of the literature. Finally, the second perspectives article focusses on lived experience dissemination of research findings, and details evidence-based considerations for meaningfully incorporating researchers, clinicians, and others with lived experience at cleft and craniofacial conferences.The collective findings from this PhD programme highlight the importance of the availability of cleft care and community support services at any age, and the need for resourcing to provide effective, tailored adolescent and adult services. In conducting interventions and research across hospital, university, and community settings, this doctoral thesis demonstrates the value of comprehensive wrap-around support delivered collaboratively. Practical recommendations for cleft team services, community organisations, clinical training programmes, and government health policy makers are presented to support the ongoing development of a programme of services for the benefit of individuals with cleft across the lifespan, within New Zealand and beyond.
Understanding the Impact of a Cleft Camp in Aotearoa New Zealand on Sociability, Self-Esteem, and Confidence (2025)
Authors: Kenny Ardouin, Nicola Stock, Tika Ormond, Phoebe Macrae
Journal: Cleft Palate Craniofacial Journal
Abstract:
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-esteem among camp attendees.
Design: A mixed methods study was employed. Standardized measures were administered prior to camp, immediately after camp, and 2 weeks after returning home from camp. Qualitative data were collected using focus groups on the final day of camp.
Setting: A nationwide 3-day camp in Auckland, New Zealand, organized in partnership between the University of Canterbury and Cleft New Zealand.
Participants: Twenty-seven people with cleft aged 10 to 18 attended the camp, of whom, 22 participated in the research study.
Main Outcome Measures: The Rosenburg Self-Esteem Scale, Harter Sociability Scale, and Body Image Life Disengagement Questionnaire were analyzed using descriptive statistics and t tests to compare data across timepoints and to normative data. Focus group data were analyzed using conventional content analysis.
Results: Many camp participants were already well-adjusted prior to camp and therefore did not demonstrate improvements in quantitative measures over time. Contrastingly, those who scored below the norm at baseline demonstrated significant gains in self-esteem and sociability. Focus group data demonstrated that people felt less isolated, more confident, and more knowledgeable about cleft after attending camp.
Conclusions:Residential camps for youth with cleft offer a valuable peer support experience and can result in measurable benefits to young people’s sociability and self-esteem, alongside qualitatively reported gains. Offering cleft and craniofacial camps as part of a comprehensive youth program is indicated.
Combining Speech Language Therapy and Clinical Psychology for Adolescents and Adults With CL/P: A Pilot Clinic in New Zealand (2025)
Authors: Kenny Ardouin, Tika Ormond, Nicola Stock, Phoebe Macrae
Journal: Cleft Palate Craniofacial Journal
Abstract:
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 outcomes.
Methods: Twelve patients (12 y+) with cleft-related speech concerns were seen at the University of Canterbury Speech and Psychology clinics in 2023. Patients elected to receive SLT and psychology services in-person, online, or a combination of both. Patient-reported outcome measures of speech function, intelligibility and acceptability, speech distress, and psychological and social function were completed before therapy, midway, immediately post, and 3 months post their 4- to 8-week block of treatment. Quantitative data were analyzed using descriptive statistics. Patients and clinicians completed exit interviews to understand their clinic experience. Interviews were analyzed using conventional content analysis.
Results: Participants reported improved speech function, intelligibility, and acceptability following the clinic. Participants also conveyed improvements in speech distress and in psychological and social functions, which peaked after receiving psychology services. Patient exit interviews suggested positive clinic experiences and that the intensity saw improvements realized in a short timeframe. Facilitators and barriers to the clinic’s success were identified. Clinicians gained confidence working with patients with CL/P and valued the cross-discipline working opportunity.
Conclusions: Cleft-specific SLT services and routine psychological care should be available across the lifespan, and with regular frequency. Accessibility options enhanced engagement with the clinic. Regular multidisciplinary working between SLTs and psychologists facilitates clinical success, and university clinics can provide a valuable adjunct to hospital CL/P services. Ongoing clinical training opportunities such as collaborative clinics to gain experience working with CL/P are warranted.
Cleft Team Clinicians’ Perspectives on the Process of Patient Transition from Childhood to Adulthood in New Zealand (2024)
Authors: Maia Rose Entwistle, Phoebe Macrae, Kenny Ardouin
Journal: Cleft Palate Craniofacial Journal
Abstract:
Objective: This study sought to understand cleft team clinician experiences of transitioning patients from pediatric to adult cleft care services in New Zealand.
Design: The qualitative study conducted 4 interviews and 4 focus groups with Cleft Team clinicians either in person or over Zoom. Data were analyzed using inductive thematic analysis to identify themes.
Participants: Twelve Cleft Team clinicians from 4 Health New Zealand cleft services.
Results: Patients are treated by the same clinicians both before and after transition, however, changes at age 16 include gaining treatment decision-making autonomy, inpatient stays within general plastic surgery wards, and evolving life experiences outside of the hospital. Clinicians reported unmet psychosocial needs of patients and their families, and difficulties experienced by patients returning to cleft services as adults. The development of peer support networks between adolescents and young adults who have experiences of cleft care is also recommended.
Conclusions: Ongoing cleft care provision and expansion of services are recommended. Furthermore, future studies to understand patients’ perspectives of transition are paramount, and incorporating patient voice into any proposed interventions is essential. Potential supports for families of patients with a cleft should also be further investigated, and the application of international standards would promote increased consistency and collaboration between the practice of Cleft Team clinicians around the world.
Involving Experts by Experience in Craniofacial Research (2024)
Authors: Amanda Bates, Kenny Ardouin, Danielle McWilliams
Journal: Cleft Palate Craniofacial Journal
Abstract: Many areas of health research increasingly involve end users of research (typically patients and their families/caregivers) in study design, management, and dissemination. Beyond recruiting patients as research participants, the shift is towards engaging patients, parents and caregivers as active partners on the research team, who are recognised and valued as ‘experts-by-experience’ (EbyE). Currently, involving EbyE is not routine in global craniofacial research. This paper highlights the value of EbyE involvement, addresses how to incorporate EbyE at all stages of research and discusses key considerations in facilitating positive experiences for EbyE.
Invited Review: “I’ve Just Seen a Face” (2024)
Authors: Kenny Ardouin
Journal: Cleft Palate Craniofacial Journal
Abstract: I’ve Just Seen a Face is a new resource produced by author Amy Mendillo and is designed for parents of children with cleft lip and/or palate to help them to navigate the first year of life. In this invited article, Kenny Ardouin provides an overview of the book, and offers perspective on the content contained within, including potential issues for professionals working with cleft to consider. The review ends with recommendations for likely beneficiaries of the book, as well as considerations for additional future versions of the book.
A Keynote Address: A Guide to Supporting Conference Speakers with Lived Experience of Cleft Lip and/or Palate (2023)
Authors: Kenny Ardouin, Danielle McWilliams, Amanda Bates
Journal: Cleft Palate Craniofacial Journal
Abstract: Although the value of diversity within academia and society is increasingly recognised, the role of speakers with lived experience at cleft and craniofacial conferences remains inconsistent. This perspectives article shares reflection from three academics with lived experience of cleft discussing the value of including lived experience speakers routinely within conferences and outlining common challenges and barriers to the involvement of “experts-by-experience”. Key considerations and recommendations are offered to help conference organisers and delegates to make the most of the lived experience perspective, while ensuring the conference experience is positive for lived experience speakers.
The Development, Deployment, and Evaluation of the CLEFT-Q Computerized Adaptive Test: A Multimethods Approach Contributing to Personalized, Person-Centered Health Assessments in Plastic Surgery (2023)
Authors: Conrad Harrison, Inge Apon, Kenny Ardouin, Chris Sidey-Gibbons, Anne Klassen, Stefan Cano, Karen Wong Riff, Andrea Pusic, Sarah Versnel, Maarten Koudstaal, Alexander C Allori, Carolyn Rogers-Vizena, Marc C Swan, Dominic Furniss, Jeremy Rodrigues
Journal: Journal of Medical Internet Research
Background: Routine use of patient-reported outcome measures (PROMs) and computerized adaptive tests (CATs) may improve care in a range of surgical conditions. However, most available CATs are neither condition-specific nor coproduced with patients and lack clinically relevant score interpretation. Recently, a PROM called the CLEFT-Q has been developed for use in the treatment of cleft lip or palate (CL/P), but the assessment burden may be limiting its uptake into clinical practice.
Objective: We aimed to develop a CAT for the CLEFT-Q, which could facilitate the uptake of the CLEFT-Q PROM internationally. We aimed to conduct this work with a novel patient-centered approach and make source code available as an open-source framework for CAT development in other surgical conditions.
Methods: CATs were developed with the Rasch measurement theory, using full-length CLEFT-Q responses collected during the CLEFT-Q field test (this included 2434 patients across 12 countries). These algorithms were validated in Monte Carlo simulations involving full-length CLEFT-Q responses collected from 536 patients. In these simulations, the CAT algorithms approximated full-length CLEFT-Q scores iteratively, using progressively fewer items from the full-length PROM. Agreement between full-length CLEFT-Q score and CAT score at different assessment lengths was measured using the Pearson correlation coefficient, root-mean-square error (RMSE), and 95% limits of agreement. CAT settings, including the number of items to be included in the final assessments, were determined in a multistakeholder workshop that included patients and health care professionals. A user interface was developed for the platform, and it was prospectively piloted in the United Kingdom and the Netherlands. Interviews were conducted with 6 patients and 4 clinicians to explore end-user experience.
Results: The length of all 8 CLEFT-Q scales in the International Consortium for Health Outcomes Measurement (ICHOM) Standard Set combined was reduced from 76 to 59 items, and at this length, CAT assessments reproduced full-length CLEFT-Q scores accurately (with correlations between full-length CLEFT-Q score and CAT score exceeding 0.97, and the RMSE ranging from 2 to 5 out of 100). Workshop stakeholders considered this the optimal balance between accuracy and assessment burden. The platform was perceived to improve clinical communication and facilitate shared decision-making.
Conclusions: Our platform is likely to facilitate routine CLEFT-Q uptake, and this may have a positive impact on clinical care. Our free source code enables other researchers to rapidly and economically reproduce this work for other PROMs.
Understanding the long-term effect of speech differences in cleft lip and palate: a study of how cleft-related speech differences influence educational, vocational and social experiences in New Zealand adults (2022)
Authors: Kenny Ardouin
Thesis: MSc Thesis, University of Canterbury
The management of patients with orofacial cleft (OFC) often extends from diagnosis or birth well into adulthood and requires many different specialists within multidisciplinary teams (MDT). The aims of treatment are to restore form and function relating to hearing, speech, occlusion and facial aesthetics. People with OFCs that include the lip, alveolus and palate (cleft lip and palate (CLP)) require several different staged and coordinated surgical and non-surgical interventions, and the treatment pathway is associated with a heavy burden of care. Due to the extensive nature of the interaction with these patients, MDT members have opportunities to provide enhanced patient-centred care and support. This case report provides an overview of the current knowledge of the aetiology of OFC and the management of these patients. It provides a unique perspective from one of the coauthors who has a unilateral CLP (UCLP) and reports on his treatment experiences and long-term treatment outcomes. By having a better understanding of the impact of UCLP and treatment provided, MDT members can not only provide improved clinical treatment but also offer improved patient experiences for those with craniofacial anomalies, in particular, an increased awareness of the psychosocial challenges, they endure throughout their treatment pathway and beyond.
Background: The largest group of people living with repaired cleft lip and/or palate are adults. Previous research has identified that cleft-related differences and concerns can persist well into adulthood, and cleft is therefore gaining increasing recognition as a lifelong condition. Although the physiological impact of cleft on speech is well understood, the social and psychological impacts of cleft-related speech differences are less explored. The aim of this study was to examine self-reported perceptions of cleft-related speech differences in adulthood, and their educational, vocational and social impacts on New Zealand adults.
Method: Drawing upon previous international literature, a mixed-methods study was designed. This primarily involved individual semi-structured qualitative interviews with adults born with cleft. Interviews lasted between 30-60 minutes, and were followed with a form containing five quantitative standardised measures. A total of 17 participants aged between 18 and 84 participated in the study between August and November 2020. Sixteen participated using Zoom video conferencing software, and one participant opted for a face-to- face interview. Qualitative data were analysed using thematic analysis, while quantitative data were analysed using descriptive statistics.
Results: Most participants perceived themselves to have some ongoing speech concerns arising from their cleft, with participants overall reporting their speech acceptability to be poorer than their speech intelligibility. While most people identified ongoing cleft related speech concerns, a proportion of these also reported cleft related appearance concerns. Four overarching themes associated to cleft-related speech differences were identified. The first theme explored participants’ perceptions of speech differences and speech language therapy (SLT). The remaining themes focussed on the impact of cleft-related speech differences on 1) educational and vocational experiences, 2) social and interpersonal experiences, and 3) emotional wellbeing. Cleft-related speech differences impacted on participants’ educational and vocational experiences in a myriad of ways, including choosing to opt out of opportunities and being subjected to discrimination, as well as positively influencing their choice of vocation. Overall, participants reported their social competence to be lower than that of the general population despite reporting healthy relationships with friends and family. Participants typically reported establishing new friendships and romantic relationships to be difficult. Finally, emotional wellbeing concerns were prevalent in the cohort, with access to psychology support services having been limited. Conclusion: Responses from this self-selecting cohort indicated that cleft-related speech concerns and/or the psychological impact of previous or current cleft-related speech concerns may persist well into adulthood. The lack of access by some in the cohort to speech language therapy services growing up, as well as the lack of access to psychological services by almost all of the cohort are areas worthy of further attention. Recommendations for clinicians and charitable services working in cleft care are offered, in addition to recommendations for future health policy, which would standardise access to cleft care across New Zealand. Further research both locally and internationally is recommended to better understand the long-term impact of cleft-related speech differences, and to evaluate the efficacy of any interventions implemented as a result of this study.
Long-term treatment outcomes from the perspective of a patient with unilateral cleft lip and palate (2022)
Authors: Peter Fowler, Kenny Ardouin, Jennifer Haworth, Leslie Snape
Journal: British Medical Journal Case Reports
The management of patients with orofacial cleft (OFC) often extends from diagnosis or birth well into adulthood and requires many different specialists within multidisciplinary teams (MDT). The aims of treatment are to restore form and function relating to hearing, speech, occlusion and facial aesthetics. People with OFCs that include the lip, alveolus and palate (cleft lip and palate (CLP)) require several different staged and coordinated surgical and non-surgical interventions, and the treatment pathway is associated with a heavy burden of care. Due to the extensive nature of the interaction with these patients, MDT members have opportunities to provide enhanced patient-centred care and support. This case report provides an overview of the current knowledge of the aetiology of OFC and the management of these patients. It provides a unique perspective from one of the coauthors who has a unilateral CLP (UCLP) and reports on his treatment experiences and long-term treatment outcomes. By having a better understanding of the impact of UCLP and treatment provided, MDT members can not only provide improved clinical treatment but also offer improved patient experiences for those with craniofacial anomalies, in particular, an increased awareness of the psychosocial challenges, they endure throughout their treatment pathway and beyond.
Orthognathic Surgery: My Experience of Transitioning to Adult Cleft Care (2021)
Author: Kenny Ardouin
Journal: Cleft Palate-Craniofacial Journal
Kenny Ardouin grew up in East Sussex in the United Kingdom (UK), before moving to New Zealand, which he now considers home. Having been born with a cleft lip and palate, Kenny has a personal and professional dedication to the field. He served as CEO of the charitable organization Cleft New Zealand and recently completed 3.5 years as the Adult Services Manager for the Cleft Lip and Palate Association in the UK. Kenny works as a speech and language therapist, and is studying a Master’s degree part-time, focused on the psychological impact of speech differences in adolescents and adults born with a cleft. Kenny is also a radio broadcaster and editor and a freelance public speaker. In this heartfelt and informative invited editorial, Kenny reflects on how his treatment journey unfolded as a young adult and offers key learning points for all health professionals wanting to become more person-focused in their clinical practice.
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)
Authors: Kenny Ardouin, Nicky Davis, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Factors Associated With Psychological Adjustment in Adults With Cleft Lip and/or Palate: Findings From a National Survey in the United Kingdom (2021)
Authors: Bruna Costa, Kenny Ardouin, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Treatment Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom (2021)
Authors: Kenny Ardouin, David Drake, Sandip Popat, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Interpersonal Relationship Experiences in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom (2021)
Authors: Kenny Ardouin, Matt Hotton, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Physical Health in Adults Born With Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom (2021)
Authors: Kenny Ardouin, Sinead Davis, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Emotional Wellbeing in Adults Born with Cleft Lip and/or Palate: A Whole of Life Survey in the United Kingdom (2020)
Authors: Kenny Ardouin, Jess Hare, Nicola Stock
Journal: Cleft Palate-Craniofacial Journal
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.
Kenny Ardouin 