Nicola Marie Stock

When There Is More than a Cleft: Psychological Adjustment When a Cleft Is Associated with an Additional Condition

Background In spite of studies reporting a relatively high frequency of additional conditions in children with a cleft lip and/or cleft palate (CUP), almost no research has focused on this clinically important subgroup. The objective of this study was to compare psychosocial adjustment in children with CUP with and without an additional condition. Design Cross-sectional data based on routine psychological assessments at age 10 years, with comparisons to national reference groups. Setting Centralized treatment, Norway. Participants Two hundred five children with CUP (participation rate: 80.1%) from three consecutive birth cohorts. Outcome measures The Strengths and Difficulties Questionnaire (self-report and parent report) and the Child Experience Questionnaire (self-report). Results Eighty-one children (39.5%) were identified as having at least one condition in addition to the cleft. These children reported significantly more psychosocial difficulties than children with a cleft alone. Differences between specific conditions were minor. Children with a cleft alone (n = 124) reported mean scores that were comparable to those reported by the reference group. There were no differences in adjustment between children with a visible versus a non-visible cleft. Conclusions The present study highlights the need for research to be conducted in children with CUP who have additional conditions to provide better knowledge and clinical care for a potentially vulnerable subgroup of children and their parents.

“It Doesn't All Just Stop at 18”: Psychological Adjustment and Support Needs of Adults Born With Cleft Lip and/or Palate

Background 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 Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits.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 possible support needs of a large number of adults born with CL/P from their own perspective. Design Fifty-two individual telephone interviews eliciting qualitative data. Results Qualitative analysis identified five themes. Participants reported a range of challenges in relation to discharge from the service, additional surgery as an adult, social and romantic relationships, higher education, vocational achievement, and access to psychological support. The findings imply that most adults with a cleft adjust well to these challenges and report many positive outcomes. For a minority of patients, issues attributed to the cleft may continue to cause distress in adulthood. Conclusions Adults with CL/P may require psychological support, information about the heritability of cleft, signposting and referrals from nonspecialists, support regarding further treatment, and opportunities to take part in research and activities. New issues arising in adulthood, such as entering the workplace, forming long-term relationships, and starting a family, may warrant both further investigation and additional support. Further work is needed to identify the factors that contribute to psychological distress and resilience, as well as the timing of particular points of risk and opportunity for personal growth.

Toward a Reconsideration of Inclusion and Exclusion Criteria in Cleft Lip and Palate: Implications for Psychological Research

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 from routine psychological assessments. Setting Centralized treatment, Norway. Participants Data on cleft type and additional conditions were collected for 754 children with CL/P from 11 consecutive birth cohorts. Data on psychological adjustment were collected for three consecutive birth cohorts (n = 169). Main Outcome Measures The Strengths and Difficulties Questionnaire (SDQ), completed by children and parents. Results A total of 240 children (32%) in the sample had an additional condition, such as developmental delay, attention deficit/hyperactivity disorder, or a specific language impairment or dyslexia. Analysis of SDQ scores using conventional exclusion criteria (approach 1) was compared with a second method (approach 2), which included all children and categorized them according to the presence or absence of additional conditions. Significant variation in profiles of psychosocial adjustment was found depending on the approach to exclusion. Conclusions The presence of additional conditions in a sample may affect results and subsequently the conclusions drawn in relation to the psychosocial adjustment of children born with CL/P. The present study emphasizes the importance of careful assessments and reporting of all associated conditions, in order to improve the understanding of the impact of a cleft and the consequences of associated conditions in this population.

Living with a cleft: Psychological challenges support and intervention

Psychological adjustment to living with a cleft and its treatment is now understood to be both complex and labile. While many adjust well, this population has an increased risk for a range of poorer psychological outcomes compared with their peers. Adjustment is multifactorial, involving a complex interplay of psychological and social factors. Psychological care should be available across the lifespan to meet the changing needs of patients and their families over time. Interventions should be developed and evaluated in order to optimise psychological, social and educational outcomes.

Psychological adjustment to cleft lip and/or palate: A narrative review of the literature.

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 the literature is needed in light of the rapidly expanding and changing field. Design: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015. Main outcome measures: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined. Results: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges. Conclusions: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.

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 fathers 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 childrens diagnosis and treatment.

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. Result 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.

Risk and Protective Factors at Age 10: Psychological Adjustment in Children With a Cleft Lip and/or Palate

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 limited to specific areas of adjustment. Methods Retrospective chart review from psychological assessments at age 10 (N – 845). The effects of gender, cleft visibility, and the presence of an additional condition were investigated. Results were compared with large national samples. Measures Personality Inventory for Children, Child Experience Questionnaire, Strengths and Difficulties Questionnaire, Satisfaction With Appearance scale. Result The factor affecting psychological adjustment on most domains was the presence of an associated condition in addition to the cleft. As expected, no support was found for cleft visibility as a risk factor, while there were some gender differences related to emotional difficulties and attention. Correlation analyses of risk groups pointed to an association between social experiences and emotional adjustment and between social and behavioral adjustment; whereas, dissatisfaction with appearance was not related to any other domains of risk at age 10. Conclusions The results point to the importance of early screening and assessment of children born with a cleft to identify possible associated conditions and offer adapted and appropriate treatment and care. Future research should investigate how protective factors could counteract potential risk in children with a cleft.

The Effectiveness of Psychosocial Intervention for Individuals with Cleft Lip and/or Palate:

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 research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. Results Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. Conclusions The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.

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.