Risk and Protective Factors for Psychological Distress in Families Following a Diagnosis of Cleft Lip and/or Palate.

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 identify risk and/or protective factors contributing to parental adjustment in order to inform future psychological intervention. METHODS: Parent-reported questionnaire data were extracted for 1163 parents (644 mothers and 519 fathers). Outcome measures included the PedsQL-Family Impact Module, the Perceived Stress Scale, the Hospital Anxiety and Depression Scale, and a condition-specific tool designed by the Psychology Clinical Excellence Network. RESULTS: Overall, findings suggest that parents adjust well to the diagnosis. Factors found to be protective against psychological distress for both mothers and fathers included a positive life orientation, satisfaction with health care, and relationship satisfaction. Close friendships were also protective against depression in mothers. Risk factors for mothers included the presence of a prior mental health condition, and stressful life events during pregnancy. Risk factors for fathers included being older at the time of conception, and recently being absent from work. CONCLUSIONS: Findings suggest a need for appropriate psychological screening of both parents following a diagnosis of CL/P and emphasize the importance of coordinated multidisciplinary care for psychological health. Preventative models of intervention to strengthen familial relationships and build resilience require further investigation.

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate at Age 8+ Years.

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 psychological adjustment. OBJECTIVES: The aim of the current article is to outline the collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to CL/P from the age of 8 years onward. RESULTS: A conceptual framework and corresponding parent- and self-reported outcome measures for use at ages 8, 10, 12, 15, 18, 20, and 25 years have been agreed upon by clinicians, researchers, and patient and parent representatives. All measures have been evaluated according to their psychometric properties, clinical utility, ability to produce meaningful longitudinal data, and a range of pragmatic considerations. CONCLUSIONS: Although the collaborative process has been challenging and has required ongoing dedication from multiple stakeholders, consistency in data collection over time will allow for key research questions in CL/P to be addressed, both in the United Kingdom (UK) and internationally. The process has also demonstrated the clinical utility of the measures and the potential for the gradual integration of the measures into clinical practice. UK progress has sparked global interest, and the adaptation of the framework and its corresponding measures for worldwide use is now a prominent focus.

The Contribution of a Charitable Organization to Regional Cleft Lip and Palate Services in England and Scotland.

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 service across England and Scotland, with the aim of increasing support at a local level. The Centre for Appearance Research at the University of the West of England were commissioned to conduct an independent evaluation of the service over 7 years. METHODS: A pragmatic, mixed-methods approach was utilized to assess the impact of the service from the perspective of charity volunteers; children, young people, and adults with CL/P; caregivers; and clinicians. Feedback forms were distributed to stakeholders at a variety of events, and qualitative feedback was collected via focus groups and an online survey. RESULTS: The majority of participants indicated they had gained access to a local support network, felt more able to cope with CL/P-related challenges, and felt more confident in themselves. Qualitative investigation provided further support for these findings and highlighted additional benefits of the regional service for clinical teams. CONCLUSIONS: The evaluation provides encouraging evidence toward the contribution of a relatively small charitable organization in the context of cleft care. The importance of a pragmatic approach to community-based evaluation and the benefits of collaborative working between researchers and the charitable sector were also highlighted.

Using Photo-Elicitation to Explore Families' Experiences of Burn Camp.

A qualitative study using photo-elicitation was conducted to investigate the experiences of family members attending a residential burn camp. Six families were provided with cameras and asked to take photographs of their time at camp. They were subsequently interviewed about their experiences of camp, using their photographs as prompts. Thematic analysis of interview transcripts identified three main themes: benefits for the family as a whole (new activities and experiences and lasting impacts), benefits for the child (having fun without feeling different), and benefits for the parent/carer (support from those who understand). This is the first study to specifically investigate the experience of the whole family at a burn camp and suggests that attendance may offer a number of benefits for parents/carers and children. Photo-elicitation was an effective method for encouraging participants to recall and discuss their time at camp, and should be considered in future burns research.

Efficacy of psychosocial and physical activity-based interventions to improve body image among women treated for breast cancer: A systematic review.

OBJECTIVE: Body image concerns warrant attention among women who have undergone treatment for breast cancer, due to their significant consequences for psychological and physical health, and interpersonal relationships. This paper systematically reviews the effectiveness of interventions on body image outcomes among this group, in order to inform health care provision and strategic directions for research. METHODS: Fourteen electronic databases were searched for articles published between 1992 and 2017 that evaluated interventions with women who had undergone treatment for breast cancer in controlled trials with at least one body image measure. Data were extracted and studies were assessed for their methodological quality using the Cochrane Collaboration tool for assessing risk of bias. RESULTS: Twenty-one articles evaluating 26 interventions met inclusion criteria. Nine interventions significantly improved body image at either post-test or follow-up (ds = 0.15-1.43), with none reporting sustained effects across all time points. Effective interventions comprised psychotherapy, psychoeducation, or physical activity, were delivered at different treatment stages and mostly adopted a multisession, face-to-face, group format. However, only 4 interventions were evaluated within methodologically rigorous studies and are therefore recommended for use by health professionals aiming to improve the body image of women at different stages of treatment for breast cancer. CONCLUSIONS: To advance the field, we recommend a less biomedical disease- and treatment-focused approach to interventions, and instead a more biopsychosocial theoretical approach targeting broader modifiable psychosocial influences upon body image. Replication and randomised controlled trials of greater rigour are also required to improve the methodological quality of studies.

Setting up a cohort study in speech and language therapy: lessons from The UK Cleft Collective Speech and Language (CC-SL) study.

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 obtain sufficient power to detect a potential effect of intervention owing to small sample sizes or heterogeneity in the participants. With certain clinical groups such as cleft lip and palate, systematic reviews of intervention studies have shown that there is no robust evidence to support the efficacy of any one intervention protocol over another. AIMS: To describe the setting up of an observational clinical cohort study and to present this as an alternative design for answering research questions relating to prevalence, risk factors and outcomes from intervention. METHODS: The Cleft Collective Speech and Language (CC-SL) study is a national cohort study of children born with cleft palate. Working in partnership with regional clinical cleft centres, a sample size of over 600 children and 600 parents is being recruited and followed up from birth to age 5 years. Variables being collected include demographic, psychological, surgical, hearing, and speech and language data. MAIN CONTRIBUTION: The process of setting up the study has led to the creation of a unique, large-scale data set which is available for researchers to access now and in future. As well as exploring predictive factors, the data can be used to explore the impact of interventions in relation to individual differences. Findings from these investigations can be used to provide information on sample criteria and definitions of intervention and dosage which can be used in future trials. CONCLUSIONS: The observational cohort study is a useful alternative design to explore questions around prevalence, risk factors and intervention for clinical groups where robust research data are not yet available. Findings from such a study can be used to guide service-delivery decisions and to determine power for future clinical trials.

Recruiting to cohort studies in specialist healthcare services: Lessons learned from clinical research nurses in UK cleft services.

AIMS AND OBJECTIVES: 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 palate, where establishing large, comprehensive data sets from birth is vital to improve understanding and to inform interventions. Various barriers exist in recruiting patients to large cohort studies. The role of clinical research nurses embedded within health settings has grown over past decades to facilitate data collection, yet challenges remain. DESIGN: Qualitative descriptive study. METHODS: Individual semi-structured interviews with 12 clinical research nurses based in 10 National Health Service cleft services across the UK, recruiting to the Cleft Collective Birth Cohort Study. RESULTS: Of seven emergent themes, three highlighted challenges to recruiting patients, another three described facilitative factors, and one theme overlapped challenges and facilitators. Challenges included the life circumstances of potential participants; language barriers; and limited clinical research nurse time for study. Facilitative factors included integrating research into clinical practice; patient information shared with clinical research nurses; and support from the university-based research study team. The theme "Method of data collection" related to both challenges and facilitators. CONCLUSIONS: The qualitative data from clinical research nurses recruiting to a large birth cohort study provide helpful practical detail for specialist healthcare teams, specialist nurses, clinical research nurses and researchers looking to optimise recruitment and data collection in longitudinal studies. RELEVANCE TO CLINICAL PRACTICE: The findings suggest the importance of specialist clinical services and research study teams cooperating to embed research into everyday clinical practice, without compromising care. This should facilitate patients' willingness to participate in important research like the Cleft Collective study and provide them with a positive experience of research.

Toward a Conceptual and Methodological Shift in Craniofacial Research.

OBJECTIVE: To date, research investigating the psychological impact of craniofacial conditions has produced variability across outcomes. The aims of this article were to summarize the challenges that may contribute to this variability, and to offer alternative perspectives and approaches to guide future research and practice. DESIGN: A comprehensive evaluation of papers exploring adjustment to congenital craniofacial conditions was conducted. Methodological approaches and underlying conceptual issues were identified and summarized. RESULTS: The conceptual limitations identified include inherent challenges pertaining to the multifactorial and fluctuating nature of adjustment, a lack of consensus regarding the primary constituents of a positive outcome, scant use of appropriate models and theories, and a predominant focus on "deficits" over "strengths." The methodological shortcomings identified include a lack of representative samples, biomedical inclusion/exclusion criteria, inconsistency in measurement, a relative absence of the patient perspective, variability in approaches to data analysis and interpretation, and the failure to draw on knowledge from other disciplines and related fields of health research. Findings are believed to be relevant to all disciplines involved in craniofacial research and practice. CONCLUSIONS: Existing literature remains markedly affected by a range of conceptual and methodological challenges, despite these challenges being identified 25 years ago. The present article proposes that a shift in the way we conceptualize and study craniofacial conditions is needed, in order to construct a comprehensive understanding of adjustment to craniofacial conditions, and to address the key unanswered questions important to all stakeholders.

Centralization of Cleft Lip and Palate Services in the United Kingdom: The Views of Adult "Returners".

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 studies have reported on the benefits and challenges of centralization from the views of health professionals, little research has attempted to capture the patient perspective. Furthermore, few studies have investigated the views of adult "returners" who have undergone treatment both pre- and postcentralization. METHODS: Qualitative data relevant to the subject of this article were extracted from 2 previous larger studies carried out between January 2013 and March 2014. A total of 16 adults born with CL/P contributed data to the current study. These data were subjected to inductive thematic analysis. RESULTS: The findings suggest that centralization of CL/P services has considerably enhanced the patient experience. Specifically, the overall standard and coordination of care has improved, service delivery has become more patient centered, and access to professional psychological support and peer support has greatly improved patients' capacity to cope with the associated emotional challenges. CONCLUSIONS: The data collected provide additional insight into the impact of centralization from the perspective of a largely unexplored patient population. In combination with other literature, these findings are also relevant to future efforts to centralize other specialist services around the world.

The psychosocial experiences of breast cancer amongst Black, South Asian and White survivors: do differences exist between ethnic groups?

BACKGROUND: Very little UK-based research has examined breast cancer-related experiences of Black and Minority Ethnic populations, and we do not know whether the psychosocial impact of diagnosis and treatment in this group is any different to that of White women. Therefore, this study examined similarities and differences amongst Black, South Asian and White breast cancer survivors. METHODS: A quantitative, cross-sectional survey was conducted; 173 breast cancer survivors (80 White, 53 South Asian and 40 Black) completed a questionnaire, which assessed psychological functioning, social support, body image and beliefs about cancer. RESULTS: Significant differences (p < 0.05) were reported between White and South Asian participants: compared with White women, South Asian participants reported higher levels of anxiety and depression, poorer quality of life and held higher levels of internal and fatalistic beliefs pertaining to cancer. Black and South Asian women reported higher levels of body image concerns than White women, and held stronger beliefs that God was in control of their cancer. South Asian women turned to religion as a source of support more than Black and White women. CONCLUSION: This study enhances current understanding of the experience and impact of breast cancer amongst Black and South Asian women, and demonstrates similarities and differences between the ethnic groups. The findings highlight implications for healthcare professionals, particularly in relation to providing culturally sensitive care and support to their patients. Copyright © 2016 John Wiley & Sons, Ltd.

Perspectives of health professionals on the psychosocial impact of an altered appearance among adolescents treated for cancer and how to improve appearance-related care.

An altered appearance can impact the psychosocial well-being of adolescent cancer patients, yet patient reports imply a dearth of appearance-related support. Using a two-phase qualitatively driven mixed method design, 62 health professionals from a range of UK oncology care settings provided data relating to their views on the impact of appearance changes on adolescent patients (aged 12-18 years), of delivering appearance-related care, and their training needs. Integrated findings were divided into two main outcomes. The first comprises health professionals' perceptions of the psychosocial and behavioral impacts of appearance-related distress in their patients and their experiences of interventions that prevent or ameliorate appearance concern. The second illustrates personal barriers (among health professionals, adolescents, and parents) and organizational barriers that inhibit the delivery of appearance-related support, together with suggestions about how these may be overcome. The needs of patients are extensive and varied, but due to the barriers identified can be poorly addressed. Nonetheless, some practitioners are utilizing a variety of interventions supported by theory and/or evidence of their success in other clinical areas. Recommendations are made for the content, design, and coordination of interventions for adolescents and for the content of education programs to meet the training needs identified by participants.

Body Image and Quality of Life in Adolescents With Craniofacial Conditions.

OBJECTIVE: To evaluate body image in adolescents with and without craniofacial conditions and to examine relationships between body image and quality of life. DESIGN: Case-control design. SETTING: A pediatric hospital's craniofacial center and primary care practices. PARTICIPANTS: Seventy adolescents with visible craniofacial conditions and a demographically matched sample of 42 adolescents without craniofacial conditions. MAIN OUTCOME MEASURE: Adolescents completed measures of quality of life and body image including satisfaction with weight, facial and overall appearance, investment in appearance (importance of appearance to self-worth), and body image disturbance (appearance-related distress and impairment in functioning). RESULTS: Adolescents with craniofacial conditions reported lower appearance investment (P < .001) and were more likely to report concerns about facial features (P < .02) compared with nonaffected youth. Females in both groups reported greater investment in appearance, greater body image disturbance, and lower weight satisfaction compared with males (P < .01). Within both groups, greater body image disturbance was associated with lower quality of life (P < .01). The two groups did not differ significantly on measures of quality of life, body image disturbance, or satisfaction with appearance. CONCLUSIONS: Body image and quality of life in adolescents with craniofacial conditions are similar to nonaffected youth. Relationships between body image and quality of life emphasize that appearance perceptions are important to adolescents' well-being regardless of whether they have a facial disfigurement. Investment in one's appearance may explain variations in body image satisfaction and serve as an intervention target, particularly for females.

A systematic review of interventions on body image and disordered eating outcomes among women in midlife.

OBJECTIVE: Body dissatisfaction and disordered eating are widely recognized as issues that warrant attention among women in midlife, particularly the development and delivery of effective interventions. This article systematically reviews existing research on interventions among midlife women on body image and disordered eating outcomes, in order to inform intervention delivery and provide strategic directions for future research. METHOD: Fourteen electronic databases were searched for articles published between 1992 and 2015 that evaluated interventions with nonclinical samples of women (M age 35-55 years) in controlled trials with at least one body image measure. Data were extracted and evaluated, and the methodological quality of studies was assessed using the Cochrane Collaboration tool for assessing risk of bias. RESULTS: From 7,475 records identified, nine articles evaluating 11 interventions met the inclusion criteria. Seven interventions significantly improved body image at post-test (d's = 0.19-2.22), with significant improvements on disordered eating achieved by two of these interventions (d's = 0.90-1.72). Sustained improvements were achieved by three interventions that employed a multisession, therapeutically based, group intervention format; two with sustained body image and disordered eating improvements, and one with sustained body image improvements only (d's = 0.55-1.21; 2 weeks to 6 months). Methodological quality varied between studies. DISCUSSION: To date, three interventions have demonstrated sustained improvements and are indicated for practitioners aiming to improve body image and disordered eating among women in midlife. Replication and more rigorous randomised controlled trials are required to enhance the methodological quality of intervention studies in this field.

The Psychosocial Impact of Cleft Lip and/or Palate on Unaffected Siblings.

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 research has investigated the psychosocial impact of CL/P on affected individuals and their parents, yet comparatively little is known about the impact on other close family members. OBJECTIVE: To gain a better understanding of the experience of unaffected siblings of children born with CL/P, with a view to informing service provision and support. DESIGN: Individual qualitative interviews conducted over the telephone/Internet with five siblings and eight parents, including five sibling-parent pairs from the same family. RESULTS: Thematic analysis identified three key themes applicable across both parent and sibling interviews: perceptions of positive and negative impacts, factors affecting the degree of impact, and support for families. CONCLUSIONS: This study provides insight into a population that is often overlooked in the context of cleft care. The analysis identified a number of sibling support and information needs, along with suggestions of how to incorporate support for siblings in practice. The findings suggest that an inclusive approach to health care encompassing all members of the family is essential for optimal familial adjustment.

Adults' Narratives of Growing up With a Cleft Lip and/or Palate: Factors Associated With Psychological Adjustment.

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 and/or palate (CL/P) from the patient perspective would be of value to both researchers and clinicians. Design Qualitative data elicited from individual interviews with 52 adults born with CL/P. Results Inductive thematic analysis identified three main themes: "background" factors (age, gender, sexual orientation, culture, additional conditions, socioeconomic status, and adoption), "external" factors (treatment autonomy, familial coping and support, salience, public understanding, psychological input, and peer support), and "internal" psychological factors (perceptions of difference, noticeability and teasing, social confidence, internalization of beauty ideals, valence, expectations of treatment, responding to challenges, social comparisons, acceptance, faith, dispositional style, and recognition of strengths and positive growth). Conclusions The number and breadth of factors identified in this study are testament to the importance of psychology in the field of CL/P and may offer guidance in relation to developing and assessing the value of psychological interventions. There is a clear role for psychologists in tackling appearance-related concerns, designing materials, supporting patient decision making, and improving social interaction, as well as providing specialist psychological support. The findings illustrate the potential degree of individual variation in perspectives and offer insight into the conflicting results found within current literature.

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate.

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. Numerous measures have been used in research and clinical audit, resulting in conflicting findings and difficulties in evidencing the value of psychological intervention. The launch of the world's largest cleft lip/palate cohort study has provided an opportunity to standardize data collection across the United Kingdom. OBJECTIVE: To describe the collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to cleft lip/palate. RESULTS: Extensive work based on existing literature and clinical experience has resulted in a conceptual framework comprising six domains of adjustment and corresponding risk/protective factors that are measureable across key developmental time points. Driven by this framework, a core pack of standardized measures has been selected according to psychometric properties, clinical utility, and pragmatic considerations. CONCLUSIONS: To date, these measures have been implemented within a UK-wide longitudinal cohort study (at diagnosis, 18 months, 3 years, 5 years, and 8 years) and adopted into the national routine clinical audit protocol for cleft lip/palate at age 5. Further data collection points will follow as the cohorts age. Over time, consistency in data collection will allow researchers to address some of the key unanswered questions in relation to psychological adjustment to cleft lip/palate.

Opportunities and Challenges in Establishing a Cohort Study: An Example From Cleft Lip/Palate Research in the United Kingdom.

BACKGROUND: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders. OBJECTIVE: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate. RESULTS: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families. CONCLUSIONS: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.

Shared Surgical Decision Making and Youth Resilience Correlates of Satisfaction With Clinical Outcomes.

The aim of this study was to identify factors associated with youth satisfaction with surgical procedures performed to address oral cleft or craniofacial conditions (CFCs). It was hypothesized that youth mental health, participation in decision making, perceived consequences of living with a CFC, and coping strategies would be associated with satisfaction with past surgeries. A total of 203 youth between the ages of 11 and 18 years (mean age = 14.5, standard deviation = 2.0, 61% male participants, 78% oral cleft) completed a series of questionnaires measuring depression, self-esteem, participation in decision making, condition severity, negative and positive consequences of having a CFC, coping, and satisfaction with past surgeries. Multiple regression analysis using boot-strapping techniques found that youth participation in decision making, youth perception of positive consequences of having a CFC, and coping accounted for 32% of the variance in satisfaction with past surgeries (P < 0.001). Youth age, sex, and assessment of condition severity were not significantly associated with satisfaction with surgical outcome. Depression, self-esteem, and negative consequences of having a CFC were not associated with satisfaction with past surgeries. Youth should be actively involved in the decision for craniofacial surgery. Youth who were more satisfied with their surgical outcomes also viewed themselves as having gained from the experience of living with a CFC. They felt that having a CFC made them stronger people and they believed that they were more accepting of others and more in touch with others' feelings because of what they had been through.

Starting a Family: The Experience of Parents With Cleft Lip and/or Palate.

BACKGROUND: One of the key challenges facing young adults with cleft lip and/or palate is making decisions about starting a family, because there is an increased likelihood of their own child being diagnosed with cleft lip and/or palate. 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 and possible support needs of this unique group of parents in order to inform the services provided by nonspecialist Health Professionals, cleft teams, and genetic counselors. DESIGN: Individual telephone interviews eliciting qualitative data. RESULTS: Qualitative thematic analysis identified five themes. Accessing accurate information and appropriate support around heritability presented a significant challenge. Parents described feelings of responsibility and distress at their child's diagnosis, as well as a number of factors that had helped or hindered their adjustment. Parents also described ways in which their own experiences had impacted their parenting style and how becoming a parent had changed the way they felt about their own cleft. CONCLUSIONS: Young adults' understanding of what it means to grow up with cleft lip and/or palate may impact their decision to start a family and their experiences of having children. Possible methods of supporting prospective parents through this potentially difficult stage will be discussed.

Parenting a child with a cleft: the father's perspective.

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 subthemes, four overarching themes were identified: variations in care and support; appraisals of the cleft; perceptions of treatment; and looking back and moving forward. CONCLUSIONS: Fathers reported experiences comparable to those previously reported by mothers, in addition to a number of further support and information needs. PARTICIPANTS played a key role in supporting their families through the treatment process, yet fathers are underrepresented in the research literature. Recommendations are made for the adequate inclusion of fathers in future research and in relation to methods of support for fathers through their children's diagnosis and treatment.