Living with cleft lip and palate: the treatment journey.

OBJECTIVE

To better understand how individuals with cleft lip and palate (CLP) perceive and experience their treatment process and how these perceptions and experiences change over the life course.

DESIGN

Qualitative in-depth semistructured interviews with 11 adults with nonsyndromal complete CLP.

PARTICIPANTS/

SETTING

Individuals from three Canadian cities were recruited by convenience and theoretical sampling through AboutFace International. The number of participants was determined by the principle of theoretical saturation.

RESULTS

The experience of individuals with CLP through the treatment process changes over the life course. In childhood and early adolescence, most individuals experience stigma, negative self-perception, and as a result were more prone to perceiving the treatment process not only as unbearably burdensome but also as fueling their feeling of "defectiveness." In adulthood, participants' self-perception improved, partly because of definitive surgical correction, leading them to realize treatment benefits and reappraise the treatment process as satisfactory rather than burdensome. Subsequently, some individuals pursued further surgeries hoping for additional psychological gains, in lieu of psychosocial interventions addressing the underpinnings of residual feelings of "defectiveness." This led to dissatisfaction and frustration when the procedures did not lead to the hoped-for psychological gains.

CONCLUSIONS

The results emphasize the importance of self-perception in determining how participants perceive several important aspects of the treatment experience throughout the life course. Further studies should focus on how to incorporate self-perception as an important variable and outcome in the treatment process.