Parental Stress, Infant Feeding and Well-being in Families Affected by Cleft Lip and/or Cleft Palate: The Impact of Early Follow-up.

OBJECTIVE: To document the impact of early follow-up by specialized cleft nurses (SCNs) provided to families affected by cleft lip and/or palate (CL/P) and the status of parental stress, infant feeding and well-being. DESIGN: Prospective inclusion of a control group, which only received standard care, followed by an intervention group that also received early SCN follow-up. SETTING: The cleft lip and palate team at Oslo University Hospital, Norway. PARTICIPANTS: Seventy families (69 mothers and 57 fathers) distributed into an intervention group (n = 32) and a control group (n = 38). INTERVENTION: SCNs provided a consultation at the maternity ward and a follow-up conversation by phone or face-to-face at scheduled times for six months. OUTCOME MEASURES: Parental Stress Index (PSI), Perceived Stress Scale (PSS-14), feeding questionnaire, survey of infant diets, weight percentiles. RESULTS: The mothers reported higher stress scores than the fathers, but in the control group only in the PSI parent domain at T2 and T3 (P = .007, P = .018). Infants in the intervention group used pacifiers less frequently than in the control group (55.2% vs. 81.1%, P = .023). Otherwise, no significant differences were found between the groups. Overall, the infants received less breast milk than norms. CONCLUSION: Contextual strategies for early follow-up of families affected by clefts need to be developed, with an emphasis on involving fathers and those parents reporting elevated stress and/or feeding difficulties. There is a need for diagnosis-specific guidelines about the use of pacifiers as well as collaboration between the health professionals involved to increase breastmilk feeding.

Are We Together in This? Relationship Experiences of Parents of Children with Craniofacial Anomalies.

OBJECTIVE: The birth of a child with a craniofacial anomaly (CFA) can have a profound psychological impact on the family and the parental relationship. The purpose of this study was to qualitatively investigate how a child's CFA condition affected parents' couple relationship. SETTING: All patients with a CFA are followed-up by the National Unit for Craniofacial Surgery, a specialized and multidisciplinary team. Hence, participants were recruited within a centralized treatment setting. DESIGN: We used a qualitative approach to explore the relationship experiences of parents of children with CFAs. The interviews were analysed using a hermeneutic-phenomenological approach. PARTICIPANTS: The study included 13 parents, nine mothers and four fathers of children with a range of different CFAs. At the time of the interview, 10 participants were married, one was cohabiting, and two were divorced. RESULTS: Most participants perceived their partners as committed and engaged in caring for their affected child and involved in the family's everyday life, and described a strengthened relationship to their partner after the child with a CFA was born. However, some participants struggled in their relationships with their partners, and did not receive the comfort and support they needed during this critical time, leading to feelings of distance and loneliness. CONCLUSIONS: Craniofacial teams should be mindful of the importance of the environment surrounding the child, such as parental relationship and family function. Therefore, a comprehensive approach should be included in team-based care, and couples and families in need of extra support should be referred to relevant specialists.

Medical Stress Reactions and Personal Growth in Parents of Children With a Rare Craniofacial Condition.

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 investigate parents' subjective experiences of their child's condition and treatment using an in-depth qualitative approach. METHODS: Individual semistructured interviews were conducted in person or over the telephone with 48 parents of children with a range of rare CFAs. Interviews were transcribed verbatim, translated into English, and analyzed using inductive thematic analysis. RESULTS: Participants reported physical and psychological symptoms that could be indicative of medical traumatic stress in relation to their child's diagnosis and treatment. Participants described feelings of powerlessness and the weight of being responsible for their child's care. Yet, participants also reported that as a result of their experiences, their perspective on life had changed and they had grown in self-confidence. CONCLUSIONS: The findings provide insight into the complex physical and psychological effects experienced by parents in response to their child's diagnosis and medical treatment, as well as an understanding of how these experiences may also result in personal growth over time. Implementation of trauma-informed evidence-based resources should be considered in craniofacial care and future research, particularly in regard to prevention and treatment of psychological distress.

The working alliance in stuttering treatment: a neglected variable?

BACKGROUND: Multiple factors can influence the working alliance and treatment outcome in speech and language therapy. The 'working alliance' is an important concept in treatment and can be described as the degree to which a treatment dyad is engaged in collaborative, purposive work. To date, relatively little attention has been paid to this concept within speech and language treatment in general, and within stuttering treatment research in particular. AIMS: To investigate the role of the working alliance within stuttering treatment, and to evaluate whether the quality of the working alliance correlated with clients' concept of motivation and treatment outcomes 6 months post-therapy. METHODS & PROCEDURES: Eighteen adults (21-61 years) participated in this multiple single-case treatment study, with treatment facilitated by an experienced speech and language therapist. The working alliance was investigated using the Working Alliance Inventory-Short Version Revised (WAI-SR), an Extended version of the Client Preferences for Stuttering Treatment (CPST-E), the Overall Assessment of Speakers' Experience of Stuttering-Adult version (OASES-A), the Wright & Ayre Stuttering Self-Rating Profile (WASSP) and the Hospital Anxiety and Depression Scale (HADS). OUTCOMES & RESULTS: Analyses demonstrated significant associations between the working alliance and client motivation (r = 0.781) and treatment outcomes (r = 0.644) 6 months post-treatment. The association between client-led goals and therapy tasks appeared particularly important. CONCLUSIONS & IMPLICATIONS: The working alliance between speech and language therapists and persons who stutter matters. Within the alliance, the level of client-clinician agreement on treatment goals and therapy tasks may be of greater importance than the bond between client and clinician. Further research with greater numbers of participants is warranted.

Assessing Psychological Adjustment to Congenital Craniofacial Anomalies: An Illustration of Methodological Challenges.

BACKGROUND: Recognition of the challenges inherent in psychology research related to cleft lip and/or palate (CL/P) and other craniofacial anomalies (CFAs) 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 utilizing data extracted from 2 recent literature reviews pertaining to psychological adjustment within CL/P and CFA research. DESIGN: Data relating to 148 CL/P and 41 CFA studies were extracted, summarized, and compared, using percentages, figures, and χ2 calculations. RESULTS: Comparable patterns were observed in both populations in relation to small sample sizes, wide age ranges, a reliance on data collection from single sites, and limited global coverage. Similarly, only one-third of all studies had used a comparison group, 42% of studies did not include the patient perspective, and fewer than 10% of studies had collected data longitudinally. Qualitative research was lacking across both populations, but particularly in relation to CFA. A higher proportion of CFA studies utilized validated measures and were less likely to exclude patients with additional anomalies. CFA studies most frequently focused on behavior and overall quality of life, while CL/P studies tended to investigate emotional well-being and social experiences. CONCLUSIONS: Findings illustrate the variability in research approaches, sampling, measurement, and analysis across both populations. There is a pressing need to address key methodological issues within craniofacial research and to examine the possible similarities and condition-specific differences between CL/P and other congenital craniofacial anomalies.

Comparing Psychological Adjustment Across Cleft and Other Craniofacial Conditions: Implications for Outcome Measurement and Intervention.

Although cleft lip and/or palate (CL/P) has been a focus of 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 article summarizes the literature pertaining to psychological adjustment across both craniofacial groups, as represented by several prominent review articles. Similarities across the 2 patient groups in relation to key domains of psychological adjustment and corresponding factors are identified. Consequently, a standardized approach to measurement across all congenital craniofacial conditions is proposed, alongside suggestions for the potential application of similar intervention frameworks and clinical approaches.

"All Eyes on Me": A Qualitative Study of Parent and Patient Experiences of Multidisciplinary Care in Craniofacial Conditions.

OBJECTIVE: The present study investigated how adults with congenital craniofacial anomalies (CFAs) and parents experience the long-term and complex treatment offered by a multidisciplinary team (MDT). DESIGN: Exploratory-descriptive qualitative study based on individual semistructured interviews. SETTING: Centralized national follow-up and treatment of CFAs by a multidisciplinary craniofacial team from which participants were systematically recruited. PARTICIPANTS: The sample included 48 parents of children with CFAs and 16 adults with CFAs (N = 64). RESULTS: In general, participants reported to be satisfied with the follow-up and treatment they received from the MDT. Still, some aspects of treatment were experienced as demanding such as the large number of health professionals present during the consultation and being the object of their scrutinizing attention. Health professionals' communication skills were described as central for participants' involvement in, and satisfaction with, treatment. Participants also expressed a need for more treatment-related information regarding future treatment. CONCLUSIONS: Findings could have implications for the organization of care for parents and patients with rare CFAs. The many advantages of MDTs also create unique challenges for patients and parents that need to be addressed. Patients and families should be prepared for the first consultation with the MDT. Health professionals should be aware of their communication style when interacting with patients and be aware of individual differences and needs regarding treatment-related experiences and expectations.

Associations Between Hypernasality, Intelligibility, and Language and Reading Skills in 10-Year-Old Children With a Palatal Cleft.

BACKGROUND: This study investigated the associations between hypernasality and intelligibility, and language and reading skills in 10-year old children with a cleft palate ± lip. DESIGN: Cross-sectional data collected during routine assessments of speech and language in a centralized treatment setting. PARTICIPANTS: Children aged 10, born with cleft palate ± lip from 4 birth cohorts (N = 123). OUTCOME MEASURES: Hypernasality and intelligibility: Swedish Articulation and Nasality Test-N; language: Language 6-16 (Sentence recall, Serial recall, Vocabulary); reading: word chain test and reading comprehension test. RESULTS: A total of 71.3% of the children had no occurrence of hypernasality and 82.8% had intelligibility scores within the normal range. For all children with hypernasality and intelligibility within the normal range, reading and language scores were also within normal ranges. Children with presence of hypernasality had significantly lower language skills, with mean scores within the lower normal range. Children with reduced intelligibility had lower scores on reading comprehension. CONCLUSIONS: The findings highlight a possible association between hypernasality and language skills, and intelligibility and reading skills. Cleft teams should consider routine assessments of language and reading skills in children with speech impairment, in order to identify potential needs for intervention as early as possible.

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.

Strengths and Difficulties Questionnaire (SDQ): Informant Agreement Between Children Born With Cleft Lip and/or Palate and Their Parents.

OBJECTIVE: Informant discrepancies on psychological measures may affect the assessment, classification, and treatment of children's mental health. Concordance between different informants has been shown to be low to moderately correlated. The present study examined the agreement between children with cleft lip and/or palate (CL/P) and their parents. DESIGN: Cross-sectional data from 7 consecutive birth cohorts based on routine psychological assessments at age 10 with comparisons to national reference groups. SETTING: Centralized and multidisciplinary treatment setting. PARTICIPANTS: 323 children age 10, born with CL/P and their parents (participation rate: 89%). OUTCOME MEASURES: Strengths and Difficulties Questionnaire (SDQ). RESULTS: Children born with CL/P and their parents tend to follow similar patterns of disagreement on the SDQ as reported in the general population, with children reporting more symptoms than their parents, and boys having more problems than girls on most subscales. Child and parent reports were low to moderately correlated, and not affected by the child's gender or the presence of conditions additional to the cleft. CONCLUSIONS: Differences between informants on the SDQ reflect different perspectives of the child's adjustment, and both informants are important in the assessment of mental health. Children with CL/P and their parents do not significantly differ from children and parents in the general population on their agreement of the child's psychological adjustment. As with the general population, clinical assessments should be based on a mixture of both informants' reports.

Speech, Language, and Reading in 10-Year-Olds With Cleft: Associations With Teasing, Satisfaction With Speech, and Psychological Adjustment.

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: Cross-sectional data collected during routine, multidisciplinary assessments in a centralized treatment setting, including speech and language therapists and clinical psychologists. PARTICIPANTS: Children with cleft with palatal involvement aged 10 years from three birth cohorts (N = 170) and their parents. OUTCOME MEASURES: Speech: SVANTE-N. Language: Language 6-16 (sentence recall, serial recall, vocabulary, and phonological awareness). Reading: Word Chain Test and Reading Comprehension Test. Psychological measures: Strengths and Difficulties Questionnaire and extracts from the Satisfaction With Appearance Scale and Child Experience Questionnaire. RESULTS: Reading skills were associated with self- and parent-reported psychological adjustment in the child. Subjective satisfaction with speech was associated with psychological adjustment, while not being consistently associated with speech therapists' assessments. Parent-reported teasing was found to be associated with lower levels of reading skills. Having a medical and/or psychological condition in addition to the cleft was found to affect speech, language, and reading significantly. CONCLUSIONS: Cleft teams need to be aware of speech, language, and/or reading problems as potential indicators of psychological risk in children with cleft. This study highlights the importance of multiple reports (self, parent, and specialist) and a multidisciplinary approach to cleft care and research.

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. Results 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.

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.

Risk and Protective Factors at Age 16: Psychological Adjustment in Children With a Cleft Lip and/or Palate.

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 risk was limited to specific areas of adjustment. METHODS: Cross-sectional data based on psychological assessments at age 16 (N = 857). The effect of gender, cleft visibility, and the presence of an additional condition were investigated on all outcome variables. Results were compared with large national samples. MEASURES: Hopkins Symptom Checklist, Harter Self-Perception Scale for Adolescents, Child Experience Questionnaire, and Satisfaction With Appearance scale. RESULTS: The main factor influencing psychological adjustment across domains was gender, with girls in general reporting more psychological problems, as seen in reference groups. The presence of an additional condition also negatively affected some of the measures. No support was found for cleft visibility as a risk factor except for dissatisfaction with appearance. Correlation analyses of risk groups seem to point to an association between social and emotional risk and between social risk and dissatisfaction with appearance. Associations between other domains were found to be weak. CONCLUSIONS: The results point to areas of both risk and strength in adolescents born with a cleft lip and/or palate. Future research should investigate how protective factors could counteract potential risk in adolescents with a cleft.

"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.

Bilateral Hypodontia in Adolescents With Pierre Robin Sequence.

OBJECTIVE: To describe the frequency of hypodontia and left-right symmetry of hypodontia in the permanent dentition of children with Pierre Robin sequence (PRS). PATIENTS AND METHOD: The sample consisted of 78 children born with PRS between 1980 and 2006 and referred to the Oslo Cleft Lip and Palate Team (OCLPT). Data were collected retrospectively from the archives of the OCLPT. Panoramic radiographs were evaluated to document hypodontia; third molars were excluded. RESULTS: Of the 78 children with PRS, hypodontia was found in 33 (42%). Of the 33 children with hypodontia, 27 (82%) showed hypodontia in the micrognathic lower arch, 24 (73%) were missing two or more permanent teeth, and 2 (6%) had oligodontia. The teeth most often missing were the mandibular second premolar (72%), followed by the maxillar second premolar (29%). Most cases of hypodontia 21 (64%) occurred bilaterally. Bilateral hypodontia of the mandibular second premolar occurred in 27 (73%) of the patients. CONCLUSION: Hypodontia was found in 33 (42%) of the children with PRS, which is seven times higher than the prevalence among children without PRS (6%). Unlike in the general population, bilateral hypodontia was more common than unilateral hypodontia in the micrognathic mandible of children with PRS.

Multidisciplinary Aspects of 104 Patients With Pierre Robin Sequence.

OBJECTIVE: To describe Pierre Robin sequence patients with a cleft palate from a multidisciplinary perspective. PATIENTS: A total of 104 individuals with Pierre Robin sequence and cleft palate, born between 1980 and 2010. METHOD: Data were collected retrospectively and compared with large control groups. RESULTS: Of 104 patients, 19 (18.3%) were treated with a nasopharyngeal or oropharyngeal tube, continuous positive airway pressure, and/or a tracheotomy. The mean weight percentile for newborns with Pierre Robin sequence was 30.9. It decreased to 29.9 at the time of cleft palate repair (mean age, 13.7 months) (P = .78). Of 87 patients, 30 (34.5%) developed normal speech after cleft palate repair. Of 93 nonsyndromic Pierre Robin sequence patients, 31 (33.3%) had or are having surgery for velopharyngeal insufficiency, a rate that is significantly higher when compared with a control group of cleft palate-only patients (19.4%; P = .004). Of 31 patients, 25 (80.6%) developed normal resonance after surgery for velopharyngeal insufficiency. There was no significant difference in the rate of syndromes between the Pierre Robin sequence patients and a control group of cleft palate patients without Pierre Robin sequence (P = .25). Seven of 39 boys (17.9%) with Pierre Robin sequence had a diagnosis of autism spectrum disorder. CONCLUSION: Even though the mean weight percentile for newborns with Pierre Robin sequence was low, the patients did not show a growth spurt during the first year of life. The high rate of velopharyngeal insufficiency after cleft palate repair in patients with Pierre Robin sequence needs further investigation. Also, the high rate of autism spectrum disorder among boys with Pierre Robin sequence prompts further investigation.

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 (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 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 CL/P (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 CL/P who have additional conditions to provide better knowledge and clinical care for a potentially vulnerable subgroup of children and their parents.

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.