Psychological and Social Factors in Undergoing Reconstructive Surgery among Individuals with Craniofacial Conditions: An Exploratory Study

Abstract

Objective Reconstructive surgery to improve psychological well-being is commonly offered to children with craniofacial conditions. Few studies have explored the challenges of reconstructive surgery beyond the physical risks: poor treatment outcomes, infection, brain damage, and death. This qualitative study aims to understand the psychological and social implications such interventions can have for individuals with craniofacial conditions. Design A total of 38 individuals between the ages of 12 and 61 with such craniofacial conditions as Sturge-Weber syndrome, Treacher Collins syndrome, Möbius syndrome, cleft lip and palate, Noonan syndrome, Crouzon syndrome, and amniotic band syndrome participated in semistructured video-recorded interviews. Participants were recruited at conferences, through study flyers, and by word of mouth. Descriptive, thematic analysis was used to identify themes related to reconstructive surgery. Results Dominant themes included undergoing surgery to reduce stigmatization, the psychological and social implications of the interventions, outcome satisfaction, parental involvement in decision making about surgery, and recommendations for parents considering surgery for their children with craniofacial conditions. Experiences with reconstructive surgery varied, with some participants expressing surgical benefits and others, disillusionment. Conclusions The range of participant attitudes and experiences reflect the complexity of reconstructive surgery. Pediatric health care teams involved in the care of children with craniofacial conditions play an important role in advising patients (and their parents) about existing treatment options. The psychological and social implications of reconstructive surgery should be relayed to help families weigh the risks and benefits of surgery in an informed and meaningful way.

Self‐concept and facial appearance of individuals with an intellectual disability: A scoping review

“…Many individuals with those deformities face problems with self‐esteem and difficulties forming relationships with others (Sousa, Devare, & Ghanshani, ). Qualitative studies on individuals with cleft lip/palate have reported higher incidences of being subjected to teasing and social isolation, which have led to a decline in social behaviour and, overall, a reduced quality of life (Bemmels et al, ; Chetpakdeechit, Hallberg, Hagberg, & Mohlin, ). A study that investigated Norwegian adults showed that individuals with complete cleft lip and palate (CLP) experienced twice as much anxiety, depression and palpitations, as those without CLP (Ramstad, Ottem, & Shaw, ).…”

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

“…1 When facial reconstructive surgery is the treatment of choice for patients with craniofacial conditions, improved physical appearance is the goal with the spoken or unspoken hope that this change in appearance will result in an improved quality of life. 2–4 Research has demonstrated that a technically well-performed surgery does not necessarily result in a satisfied patient. 4,5 However we do not really understand how a patient develops their sense of satisfaction or disappointment.…”

“…2–4 Research has demonstrated that a technically well-performed surgery does not necessarily result in a satisfied patient. 4,5 However we do not really understand how a patient develops their sense of satisfaction or disappointment. The disconnect between the assumed benefit of improved appearance on quality of life with evidence that a successful surgical experience does not necessarily lead to a satisfied patient points to the need for a closer look at these issues.…”

“…Especially in the latter case, when a decision for surgery is actually made, it is not always clear whether parent, youth, or surgeon has been the primary impetus for that decision. 4,6,7 …”

“…On the other hand, Lefebvre and Munro 8 and Phillips and Whitaker 9 noted that adolescent patients who were ambivalent about surgery or who had felt pressured into surgery were more likely to express dissatisfaction with the outcome. More recently, Bemmels et al 4 , based on clinical interviews, concluded that child involvement in surgical decision making was critical whenever child age and cognitive capacity supported such participation. Noor and Musa, 10 emphasizing the importance of child involvement in treatment decisions, reported that 38% of adolescents with CLP felt that they were ‘usually involved’ while 8% reported they were ‘never involved’.…”