"It doesn't all just stop at 18": Psychological adjustment and support needs of adults born with cleft lip and/or palate

© Copyright 2015 American Cleft Palate-Craniofacial Association. 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 Existing literature is largely outdated and conflicted, with an almost exclusive focus on medical aspects and deficits.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

Psychosocial Functioning in Adults with Congenital Craniofacial Conditions

OBJECTIVE: To examine the psychosocial functioning of adults with congenital craniofacial conditions relative to normative data. DESIGN: Single sample cross-sectional design. SETTING: The Australian Craniofacial Unit, Women’s and Children’s Hospital, Adelaide, which is one of the main craniofacial treatment centers in Australia. PARTICIPANTS: Adults (N = 93) with congenital craniofacial conditions (excluding cleft lip/palate) who were treated in the Australian Craniofacial Unit. MAIN OUTCOME MEASURES: All participants completed self-report scales assessing health-related quality of life (SF-36); life satisfaction, anxiety, and depression (HADS); self-esteem (Rosenberg); appearance-related concerns; perceived social support; and social anxiety. RESULTS: Overall, participants were very similar in psychosocial function to the general population. However, adults with craniofacial conditions were less likely to be married and have children (females), were more likely to be receiving a disability pension, and reported more appearance-related concerns and less social support from friends. They also reported more limitations in both their social activities, due to physical or emotional problems, and usual role activities, because of emotional problems, as well as poorer mental health. CONCLUSIONS: These results give cause to be very positive about the longterm outcomes of children who are undergoing treatment for craniofacial conditions, while also identifying specific areas that interventions could target.R.M. Roberts and J.L. Mathia