Adults’ Narratives of Growing up with a Cleft Lip and/or Palate: Factors Associated with Psychological Adjustment

Abstract

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.

Psychosocial acceptance of cleft patients: has something changed?

“…Our findings contrast to the results published by Stock et al, who observed no negative effect of facial clefts on social integration or on initiation of a romantic relationship [13]. Another recent investigation by Stock et al revealed that study participants perceived a deficit of awareness and understanding of cleft patients among the general population, however [12]. There are, indeed, still indications of difficult adjustment of cleft patients to their environment and the presence of psychosocial barriers in society.…”

“…There are reports of social rejection in school and daily life. Cleft patients have reported that they have been teased because of their facial anomaly [10][11][12]. In contrast, a recent study found that adults born with a cleft do not report a relevant effect of their facial malformation on social and romantic relationships [13].…”

Decision-Making in Cleft-Related Surgery: A Qualitative Analysis of Patients and Caregivers

“…However, Kapp-Simon et al (2015) recently demonstrated that patient participation in decisions explained a significant amount of the variance in patients' satisfaction with outcomes. Furthermore, in a study to identify factors affecting psychological adjustment to their clefts, adult patients with CLCP recalled traumatic experiences as children, wherein their opinions about additional surgery were not considered (Stock et al, 2016). Prior work has also shown that correlation between patients' and caregivers' desire for revision surgeries, such as lip revision or rhinoplasty, is low, which we similarly found from our analysis (Ranganathan et al, 2016).…”

Recognizing difference: in/visibility in the everyday life of individuals with facial limb absence

“…Of course, visible facial difference as a broader category has been taken up as a research topic in the emerging field of the psychology of appearance (Lansdown et al 1997;Rumsey and Harcourt 2012). Research conducted under this heading, however, tends to highlight the psycho-social issues associated with facial variance, for instance depression, social anxiety, or avoidance behavior (Koster and Bergsma 1990;Macgregor 1970;Rumsey and Harcourt 2004;Stock, Feragen, and Rumsey 2016;Thompson and Kent 2001;Valente 2009). By focusing on the psychological condition of those who have a different face, this approach has a rather narrow view on the social context informing their experiences.…”