Emily E Hopkins1, Elizabeth Gazza2, Mary L Marazita3,4,5. 1. Chatham University, Pittsburgh, Pennsylvania, USA. 2. University of North Carolina Wilmington, North Carolina, USA. 3. Department of Oral Biology, School of Dental Medicine, Pittsburgh, Pennsylvania, USA. 4. Center for Craniofacial and Dental Genetics, School of Dental Medicine, Pittsburgh, Pennsylvania, USA. 5. Department of Human Genetics, Graduate School of Public Health, Pittsburgh, Pennsylvania, USA.
Abstract
AIM: The aim of this study was to explore the experience of parents caring for an infant with a cleft lip and palate receiving nasoalveolar moulding. BACKGROUND: Nasoalveoral moulding is a pre-surgical orthopedic appliance used to approximate an infant's cleft lip and palate, mould the nose and reduce surgical correction. Use of nasoalveolar moulding can be intensive, costly and lengthy requiring parental commitment to the process since it involves several months of weekly visits for appliance adjustment. Although extensive research has been conducted on surgical outcomes after use, little evidence exists pertaining to parental experiences caring for an infant undergoing the nasoalveolar moulding treatment process. DESIGN: The qualitative design phenomenology was used to best capture parents' lived experiences. METHODS: Eight mothers and four fathers participated in informal, semi-structured interviews during the months of April-May 2010. RESULTS: Four themes were identified: (1) You do what you have to do; (2) We weren't left alone in the dark; (3) It's just amazing to see the difference; and (4) It's like nothing ever happened. Findings indicated that despite some difficulties, parents' were dedicated to the treatment process and expressed the benefits exceeded any additional work nasoalveolar moulding required. CONCLUSION: Multiple recommendations to assist parents with the nasoalveolar moulding treatment process were identified. Improving nasoalveolar moulding education and providing support can substantially improve challenges that are experienced by parents throughout this process - strengthening the importance of their role for successful nasoalveolar moulding outcomes.
AIM: The aim of this study was to explore the experience of parents caring for an infant with a cleft lip and palate receiving nasoalveolar moulding. BACKGROUND: Nasoalveoral moulding is a pre-surgical orthopedic appliance used to approximate an infant's cleft lip and palate, mould the nose and reduce surgical correction. Use of nasoalveolar moulding can be intensive, costly and lengthy requiring parental commitment to the process since it involves several months of weekly visits for appliance adjustment. Although extensive research has been conducted on surgical outcomes after use, little evidence exists pertaining to parental experiences caring for an infant undergoing the nasoalveolar moulding treatment process. DESIGN: The qualitative design phenomenology was used to best capture parents' lived experiences. METHODS: Eight mothers and four fathers participated in informal, semi-structured interviews during the months of April-May 2010. RESULTS: Four themes were identified: (1) You do what you have to do; (2) We weren't left alone in the dark; (3) It's just amazing to see the difference; and (4) It's like nothing ever happened. Findings indicated that despite some difficulties, parents' were dedicated to the treatment process and expressed the benefits exceeded any additional work nasoalveolar moulding required. CONCLUSION: Multiple recommendations to assist parents with the nasoalveolar moulding treatment process were identified. Improving nasoalveolar moulding education and providing support can substantially improve challenges that are experienced by parents throughout this process - strengthening the importance of their role for successful nasoalveolar moulding outcomes.