Nicola Marie Stock

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Verified

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• DPhil (Psychology); MSc (Health Psychology); MSc (Research Methods); BSc (Psychology & Mental Health)
• Associate Professor at University of the West of England, Bristol

Objective: To date, research investigating the psychological impact of craniofacial conditions has produced variability across outcomes. The aims of this article were to summarise the challenges which may contribute to this variability, and to offer alternative perspectives and approaches to guide future research and practice. Design: A comprehens...

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 outcomes. Utilizing available literature and clinical expertise across 6 centers, the present article summarizes key psychosocial issues for the benefit of no...

Background: A cleft in the lip and/or the palate (CL/P) is considered to be a lifelong condition, yet relatively little is known about the long-term outcomes for patients. Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits. Objective: To explore the psychological adjustment and po...

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 these rare conditions, few studies have been conducted into parents’ emotional responses to health-care experiences. The aim of the present study was to investig...

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 craniosynostosis in adulthood, alongside a psychoeducational booklet. Design: The resources were developed...

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 the United Kingdom in the 3 JLA priorities most closely related to Clinical Psychology. It then builds upon the original prioriti...

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 lack of their involvement in formal research and publications could mean that their voices are insuf...

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 part to this review, available literature on this topic has grown considerably. The aim of the pres...

Abstract: 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 aim was to develop an evidence-based booklet to promote psychological health in families...

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 caregivers’ early feeding experiences. Design and Materials: US-based caregivers of children with CFM (...

Craniofacial microsomia (CFM) and microtia psychosocial research in the U.S. is primarily with English-speaking participants. Given that 19% of the U.S. is Latinx and there is a higher prevalence of CFM in Latinx populations, this study aims to describe psychosocial experiences related to CFM among Spanish-speaking Latinx caregivers to better infor...

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’ well-being. To address this gap, the NIH-funded ‘Craniofacial microsomia: Accelerating Research and...

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 related care, along with a review of its risk and protective factors. Findings from studies of PMTS in...

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 treatment decisions. Evidence from the wider health literature indicates this transition can be cha...

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, highlighting the importance of patient-reported outcome measures. Previously the Satisfaction with Appea...

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, understanding of the psychological health and healthcare experiences of individuals with CFM and their caregi...

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 with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to in...

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 more involved in medical decisions. The National Institute for Clinical Excellence (NICE) has publish...

Objective While knowledge of the psychosocial impact of craniofacial conditions is growing, literature regarding the impact on parents remains limited. Parents of children born with a health condition may be at risk of experiencing a range of psychosocial challenges. This study conducted an initial investigation of psychosocial adjustment of parent...

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 the psychosocial impact of these injuries on children and their caregivers. A multicentre burns cohor...

This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Studies (N = 64)...

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 explore the impacts of the pandemic on CL/P care provision for new families from the perspectives of pro...

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 themes emerged: “Managing emotions: A dynamic process,” “Through another lens: External reminders of di...

To date, limited research has been carried out into the psychological impact of having a diagnosis of Apert syndrome (AS) and the life experiences of families living with this condition. The aim of the current study was to explore psychological adjustment to AS from the perspectives of young people, and their parents, with the broader goal of infor...

Recent research indicates that parents of children with craniosynostosis may be at risk of emotional distress. Yet, parents may not be accessing the support they need to cope with common challenges. The aim of this project was to develop a research-informed booklet to promote psychological health in new families, and to assess acceptability of the...

Background Although the United Kingdom (UK) cleft surgeons follow a similar training pathway, and cleft centers adhere to similar protocols regarding the timing of palate surgery and surgical technique, speech outcomes still vary between centers. Objective To explore the training experiences of consultant cleft lip and palate (CL/P) surgeons, perf...

Objectives Within current research, little is known about the long-term outcomes of craniosynostosis. A priority-setting exercise by UK charity Headlines Craniofacial Support identified 2 key questions in this area: (1) What are the long-term physical and psychological effects for individuals with syndromic and non-syndromic craniosynostosis? and (...

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. Further, novel demands brought about by the pandemic could have caused additional hardships. The aim of thi...

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 Pal...

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 Prog...

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 common barriers to delivering an optimal specialist service. Methods Individual interviews were conducte...

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 were to explore adults’ motivations, experiences, and self-perceived outcomes in relation to medical ta...

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...

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...

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 that contribute to such outcomes, and there is a lack of consensus about which screening tools may b...

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 (CFM) and their families in order for providers to gain insight into patient and family needs and exp...

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 physic...

Background: Consensus regarding optimal outcome measurement has been identified as one of the most important, yet most challenging developments for the future of cleft lip and/or palate (CL/P) services. In 2011, a process began to adopt a shared conceptual framework and to identify a set of core outcome measures for the comprehensive assessment of...

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-report...

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 care is a risk factor for poor parental adjustment and family functioning. Yet, knowledge is lacking i...

The field of body image and appearance research and practice is progressing; however, there is still work to be done to ensure broad societal impact. This article consolidates reflections from a range of established and early career experts in the field of appearance and body image, with a focus on stimulating and guiding future agenda setting and...

Objective A diagnosis of a congenital craniofacial condition can have a significant impact on the psychological well-being of the affected family. As the first health professionals likely to come into contact with families, nonspecialists, such as diagnostic sonographers, midwives, and health visitors play a crucial role in facilitating familial ad...

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 clinicians working in cleft lip and/or palate (CL/P) services hold a wealth of knowledge and experience yet to be elicited. The aims of this study were to i...

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 Cleft Collective Birth Cohort Study, the current study aimed to examine the psychological impact of the diagnosis on parent and family functioning and to identi...

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 organizations. In 2011, the Cleft Lip and Palate Association received funding to implement a new regional serv...

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. Grandparents are becoming increasingly involved in the care of their grandchildren and may therefore have support needs of their own. The aim of the current...

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 understanding of children’s treatment experiences is limited. The objective of this study was to investigat...

Objective: In high-income countries, many cases of cleft lip are now identified at the 18-21 week pregnancy scan. The manner in which a diagnosis is communicated is vital for long-term parental wellbeing, yet previous studies have been indicative of parental dissatisfaction. The aims of the present study were to examine the experiences of parents w...

Objective: Long-term outcomes of patients born with a cleft lip and palate (CLP) are scarcely investigated. Yet, this patient group is of particular interest, as they can provide a valuable retrospective view upon their treatment experiences and psychological adjustment. Qualitative accounts may be especially useful in understanding the patient jo...

Genetic services for individuals affected by cleft lip and/or palate (CL/P) and their families are an important aspect of clinical care; yet debate exists as to how this service should be offered. This study explored the utility, acceptability, and delivery of genetic services from the perspectives of cleft-specialist clinicians, genetic counsellor...

Background: Receiving the news that their child has a health condition, such as a cleft lip and/or palate (CL/P), can have a considerable psychological impact on parents. Yet previous research has highlighted parental dissatisfaction and service-related issues. Aims: To investigate the experiences of parents of children born with CL/P in relation...

Fetal anomaly screening at 18–21 weeks now routinely includes cleft lip. If detected, the manner in which the diagnosis is communicated can considerably influence prospective parents’ decision-making in regard to further testing and termination of pregnancy (TOP). Given the known psychological impact of an antenatal diagnosis of cleft lip on prospe...

This study describes stressors, resources, and recommendations related to craniofacial microsomia (CFM) care from the perspective of caregivers of children with CFM and adults with CFM in order to inform improved quality of healthcare delivery. A mixed method design was used with fixed-response and open-ended questions from an online survey in Engl...

Background: As a growing paradigm of health research, trainee collaboratives can influence clinical practice through the generation of cost-effective multicentre audit and research projects. The aims of the present article are to outline and discuss the establishment of a multidisciplinary collaborative in the context of cleft lip and/or palate (CL...

Introduction: In the UK, one in 600-700 infants are born with a cleft lip and/or palate (CL/P). Previous research has identified patients with CL/P to be at high risk of long-term oral health issues. Yet, few of these patients are currently accessing community dental care. Aims: To assess patients’ dental treatment experiences and their suggestion...

A substantial body of research has demonstrated the challenges commonly facing people with visible differences (disfigurements) and explored the potential benefits offered by specialist psychosocial support and intervention for those who are negatively affected. However, little is known about the availability of such support in Europe for people wh...

Objective Craniofacial microsomia (CFM) is primarily characterized by underdevelopment of the ear and mandible, with several additional possible congenital anomalies. Despite the potential burden of care and impact of CFM on multiple domains of functioning, few studies have investigated patient and caregiver perspectives. The objective of this stud...

Satisfaction with appearance is of central importance for psychological well-being and health. For individuals with an unusual appearance, such as congenital craniofacial anomalies (CFA), appearance evaluations could be especially important. However, few, if any papers have presented a comprehensive synthesis of the factors found to affect subjecti...

Background: Since the implementation of centralized services in the United Kingdom for those affected by cleft lip and/or palate (CL/P), several studies have investigated the impact of service rationalization on the delivery of care. While large-scale quantitative studies have demonstrated improvements in a range of patient outcomes, and smaller s...

Background: More than two billion people worldwide now use social networking sites (SNSs), with an increasing number of users accessing these sites to obtain health information and engage in emotional support. Yet, investigation of SNSs in the context of cleft lip and/or palate (CL/P) has been scarce. Methods: Real-time data posted during two wee...

Background: Efforts to increase the evidence base in speech and language therapy are often limited by methodological factors that have restricted the strength of the evidence to the lower levels of the evidence hierarchy. Where higher graded studies, such as randomized controlled trials, have been carried out, it has sometimes been difficult to ob...

Aim: This study aimed to explore the experiences of clinical research nurses recruiting patients in a large specialist care-based cohort study. Background: Longitudinal studies are vital to better understand the aetiology and moderators of health conditions. This need is especially salient for congenital conditions, such as cleft lip and/or pala...

Background: During the school years, a cleft of the lip and/or the palate (CL/P) may pose a risk to educational achievement. To further understand this multifaceted association, and to offer suggestions as to how young people’s educational experiences might be improved, qualitative investigation is warranted. Design: Semi-structured telephone inter...

Background: Recognition of the challenges inherent in psychology research related to cleft lip and/or palate (CL/P) and other craniofacial conditions (CFA) is far from novel; yet these challenges continue to limit progress within the field. The aim of the present article was to illustrate these challenges by utilising data extracted from two recent...

Background: Cleft lip and/or palate (CL/P) poses many challenges for those affected throughout the school years, with recent studies pointing to a trend in poor educational outcomes. Previous research has highlighted the important role that teachers play in supporting young people with chronic health conditions, yet studies in the field of CL/P sug...

While cleft lip and/or palate (CL/P) has been a focus for psychological research for a number of years, investigation of adjustment to other, rarer craniofacial anomalies (CFAs) has been scarce. Yet, many features of the journey experienced by patients with CL/P could also have relevance for those affected by other CFAs, and vice versa. This brief...

Having an appearance-altering condition and dealing with other people's reactions can be distressing. Skin camouflage techniques are designed to disguise the condition, and in doing so, reduce anxiety and boost confidence. But could there be disadvantages to ‘blending in’? Nicola Stock looks at the use of skin camouflage services and their impact o...

Objective: A congenital craniofacial anomaly (CFA) is expected to impact upon several domains of psychological, emotional and social functioning, yet no recent reviews have comprehensively summarised the available literature. Further, existing reviews tend to draw upon literature in the field of cleft lip and palate, and do not give substantive att...

During adolescence, romantic relationships are a key developmental milestone. Coupled with the increasing salience of appearance and social acceptance, adolescents with an appearance-altering condition may feel particularly vulnerable when it comes to romantic relationships. This study aimed to explore the prevalence of romantic experiences among a...

During adolescence, romantic relationships are a key developmental milestone. Coupled with the increasing salience of appearance and social acceptance, adolescents with an appearance-altering condition may feel particularly vulnerable when it comes to romantic relationships. This study aimed to explore the prevalence of romantic experiences among a...

Background: One of the most common birth conditions in the world, little is known about the causes of cleft lip and/or palate (CL/P). Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors which contribute to psychological adjustment are poorly understood. The use of different...

Objective: To explore psychological functioning in children with a cleft at age 10 from a broad perspective, including cognitive, emotional, behavioral, appearance-related, and social adjustment. High-risk groups were identified within each area of adjustment to investigate whether vulnerable children were found across domains or whether risk was l...

Previous research in both the general population and in those with a visible facial difference has identified potential associations between teasing, dissatisfaction with appearance and emotional distress. However, most studies are based on cross-sectional and retrospective methodology, restricting the interpretation of findings. The present study...

In our beauty-obsessed world, where incessant dissatisfaction with appearance is considered to be ‘normal’, it can seem as though those with ‘good looks’ are the ones who have it all. But is it the case that being beautiful can get you further in life? Nicola Stock explores the human fascination with keeping up appearances and highlights the impact...

Objective: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of...

Background: Sibling relationships are among the most unique social connections, significantly affecting psychosocial adjustment. Previous reviews in the fields of chronic illness and disability have concluded that unaffected siblings of children with long-term conditions are at risk of poorer psychological functioning as a consequence. Much resear...

Objective: Explore psychological functioning in adolescents with a cleft at age 16 from a broad perspective, including cognitive, emotional, behavioral, appearance-related, and psychosocial adjustment. High-risk groups were identified within each area of adjustment to investigate whether vulnerable adolescents were found across domains or whether...

Background: Psychological adjustment to cleft lip/palate is multifaceted, and can fluctuate over time and across different situations. Consequently, a comprehensive understanding of adjustment is difficult to capture, and the challenge of achieving consensus among researchers and clinicians regarding key constructs and processes is considerable. Nu...

Background: One of the key challenges facing young adults with CL/P is decision-making around starting a family, due to the increased likelihood of their own child being diagnosed with CL/P. Should this occur, a second key challenge is how to deal with their child's diagnosis and subsequent treatment. Objective: To explore the views, experiences a...

Background: Despite the use of multidisciplinary services, little research has addressed issues involved in the care of those with cleft lip and/or palate across disciplines. The aim was to investigate associations between speech, language, reading, and reports of teasing, subjective satisfaction with speech, and psychological adjustment. Design:...

Objective: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. Design: We searched six databases including MEDLINE and EMBASE to June 2013, and checked bibliographies. We included studies that evaluated any psychological intervention...

Background: Growing up with a cleft lip and/or palate presents a number of challenges for those affected and their families. Understanding why some individuals cope well while others struggle is key to psychological research in this field. A better appreciation of the factors and processes that contribute to psychological adjustment to cleft lip an...

Objective: To explore the impact of having a child born with a cleft lip and/or palate from the father's perspective. Design: Individual qualitative telephone interviews. Participants: A total of 15 fathers of children born with cleft lip and/or palate were recruited throughout the U.K. via advertisements. Results: Supported by a number of subtheme...

Background This article investigates the prevalence of conditions that affect cognitive and/or psychosocial functioning in 10-year-old children born with a cleft lip and/or palate (CL/P) and explores how the presence of such additional difficulties may affect the reporting of outcomes in psychological research. Design Cross-sectional data derived...

Around the world, men and women of all cultures and ethnicities are being exposed to Western appearance ideals. Paired with a lack of representation of black and minority ethnic (BME) men and women in the mainstream media, the public's appreciation of ethnic diversity is being threatened. Nicola Stock examines the growing trend of appearance-alteri...

Background: In spite of studies reporting a relatively high frequency of additional conditions in children with a cleft lip and/or cleft palate (CL/P), almost no research has focused on this clinically important subgroup. The objective of this study was to compare psychosocial adjustment in children with CL/P with and without an additional conditi...

A cleft of the lip and/or the palate and its treatment can pose challenges in many domains of life, including several areas of psychological and social functioning. To date, research exploring the psychosocial ramifications of clefting has produced complex and contrasting results. A recent literature review by Stock and Rumsey (2011) highlighted so...

One in five people have an appearance that is considered 'different' to the normal population. This can have a profound impact on the lives of those affected and their families and partners. Nicola Stock, Research Associate at the Centre for Appearance Research explores the challenges associated with facial disfigurement and stresses the importance...

Visible facial differences (VFDs) can pose a number of psychosocial challenges for those affected by them. In particular, the experience of being stigmatised may have a harmful effect on the psychological adjustment of the individual concerned. This is especially pertinent for young people, who are at an agewhere appearance becomes increasingly cen...