Unique Outcomes and Positive Contributions Associated with Facial Difference: Expanding Research and Practice

Abstract

Current literature on the psychosocial outcomes of living with a craniofacial difference (CFD) focuses primarily on deficits. In this paper, an alternative perspective is explored in a pilot study of 11 parents of children with CFDs and 11 affected adults reflecting on their experiences. Mixing qualitative and quantitative methodologies, this pilot study begins to demonstrate the value of exploring contributional outcomes related to CFDs. The findings in this study include positive outcomes in terms of communication abilities, service to others, observational skills, inner strength, abilities to question society, a valued social circle, and perceptions of being normal because of the difference. The findings also reveal that approximately half of the parents and affected adults would not choose to remove the experience of facial difference from their lives if they have such an option. Implications for future research, practice, and ethical and policy considerations are discussed.