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Parental experience caring for cleft lip and palate infants with nasoalveolar moulding

Emily E Hopkins1, Elizabeth Gazza2, Mary L Marazita3,4,5

  • 1Chatham University, Pittsburgh, Pennsylvania, USA.

Journal of Advanced Nursing
|May 5, 2016
PubMed

Insights

Parents caring for infants with cleft lip and palate (CLP) using nasoalveolar molding (NAM) showed dedication, finding benefits outweighed challenges. Enhanced support and education can improve the NAM treatment experience for families.

Area of Science:

  • Craniofacial anomalies
  • Pediatric care
  • Orthodontics

Background:

  • Nasoalveolar molding (NAM) is a pre-surgical orthopedic treatment for infants with cleft lip and palate (CLP).
  • NAM aims to approximate the cleft, mold the nose, and reduce surgical intervention, but requires significant parental commitment due to intensive, lengthy treatment and frequent adjustments.
  • Limited research exists on parental experiences with NAM, despite its impact on families.

Purpose of the Study:

  • To explore the lived experiences of parents caring for infants undergoing nasoalveolar molding (NAM) for cleft lip and palate (CLP).

Main Methods:

  • Qualitative design using phenomenology to capture parents' experiences.
  • Informal, semi-structured interviews were conducted with 12 parents (8 mothers, 4 fathers).

Main Results:

  • Four key themes emerged: parental dedication ('You do what you have to do'), perceived support ('We weren't left alone in the dark'), observed positive changes ('It's just amazing to see the difference'), and normalization ('It's like nothing ever happened').
  • Parents demonstrated strong commitment to the NAM treatment, reporting that the benefits surpassed the demands of the process.

Conclusions:

  • Parents' dedication to NAM treatment is crucial for successful outcomes.
  • Recommendations include improving patient education and support systems to better assist parents navigating the challenges of NAM therapy.
  • Addressing parental needs strengthens their role in achieving optimal results for infants with CLP.
Abstract

Keywords:
caringcleft lipcleft palatenasoalveolar mouldingnursingparental experiencequalitative

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