Community participation in youth with craniofacial microsomia

Abstract

Purpose

To examine differences in community participation and environmental support for youth with and without craniofacial microsomia.

Methods

This study involved secondary analyses of a subset of data (n = 396) from a longitudinal cohort study. Multiple linear and Poisson regression analyses and Wilcoxon Mann–Whitney tests were used to estimate differences in community participation and environmental support between youth with craniofacial microsomia and youth without craniofacial microsomia, stratified based on their history of education and health-related service use. Chi-square analyses were used to explore item-level group differences in change desired across community activities.

Results

Statistically significant differences were found in community participation frequency (ES = −0.52; p < 0.001), level of involvement (r = −0.16; p = 0.010), and desire for change in participation when comparing youth with craniofacial microsomia and non-affected peers not receiving services (p < 0.001). There were no statistically significant differences between youth with craniofacial microsomia and non-affected peers receiving services.

Conclusions

Results suggest lower community participation in youth with craniofacial microsomia as compared to non-affected peers not receiving services. This may suggest opportunities for designing and testing interventions to promote community participation among youth with craniofacial microsomia, so as to support their transition to adulthood.

Implications for rehabilitation

• Youth with craniofacial microsomia may have unmet rehabilitation needs related to their community participation.

• Rehabilitation professionals should pay attention to participation of youth with craniofacial microsomia in activities that place a higher demand on involvement with others.

• Rehabilitation professionals should appraise participation frequency and involvement of youths with craniofacial microsomia to gain accurate insight into their current community participation.

Keywords:

• Leisure activities
• caregivers
• patient reported outcome measures

Acknowledgements

The authors thank the families who participated in this research. They also thank Dr. Jinsong Chen for statistical support.

Disclosure statement

The authors have no interest that could be perceived as posing a conflict or bias.

Additional information

Funding

Data for this study were collected with funding from NIH grant R01 DE 11939 from the National Institute of Dental and Craniofacial Research to Dr. Werler.