Issue Table of Contents
Share This Article
To present a conceptual framework of caregiver coping and adaptation to early cleft care using nasoalveolar molding.
In-depth interviews were conducted at three time points with caregivers of infants with cleft lip or cleft lip and palate whose children had nasoalveolar molding to treat their cleft. Qualitative data were analyzed using modified grounded theory.
Most caregivers expressed initial apprehension and anxiety about the responsibilities of care associated with nasoalveolar molding (e.g., changing and positioning tapes, cleaning the appliance). In subsequent interviews, caregivers often reported positive feelings related to their active participation in their child's treatment for cleft. These positive feelings were associated with increased self-esteem and feelings of empowerment for the caregivers. Although caregivers also identified burdens associated with nasoalveolar molding (e.g., stress related to lip taping, concerns about the appliance causing sores in their child's mouth, travel to weekly appointments), they tended to minimize the impact of these issues in comparison with the perceived benefits of nasoalveolar molding.
Despite the increased burden of care, many caregivers of infants with cleft used nasoalveolar molding as a problem-focused coping strategy to deal with their child's cleft. Completing nasoalveolar molding was often associated with positive factors such as increased empowerment, self-esteem, and bonding with their infant.
Acknowledgments
This research was supported by the National Institute of Dental and Craniofacial Research (grant DE021853). We greatly appreciate the caregivers' participation. We thank our research collaborators: John Riski from Children's Healthcare of Atlanta; Judah Garfinkle from Oregon Health & Science University; Barry Grayson from New York University Langone Medical Center; and John van Aalst from University of North Carolina, Chapel Hill, as well as the teams' clinical and research staff for facilitating data collection and dedication to patient care. We also thank Dr. Victoria H. Raveis for her helpful comments.
Footnotes
Dr. Sischo is Postdoctoral Fellow; and Dr. Broder is Professor, College of Dentistry, New York University, New York, New York. Dr. Phillips is Professor, School of Dentistry, University of North Carolina-Chapel Hill, Chapel Hill, North Carolina.
1Fortunately, this CG's experience was the exception rather than the rule, given that the vast majority of CGs had what they considered to be an adequate support network.
Cited by
Online publication date: 1-Oct-2015.
Online publication date: 1-Oct-2015.
