Nutrition Knowledge and Confidence Levels of Parents of Children With Cystic Fibrosis

Abstract

Optimal growth and nutrition status predict better lung function and longevity for children with cystic fibrosis (CF). Daily nutrition therapy for children with CF requires adequate food resources, parental knowledge of nutrition and behavior management, and confidence in one’s ability to apply the skills. The Mountain West Cystic Fibrosis Consortium Questionnaire (MWCFC-Q) was designed to identify educational intervention targets to improve the growth and nutrition of children with CF. Parents of children with CF returned 305 anonymous MWCFC-Qs. Data analyzed included household food security, knowledge of nutrition and general CF therapies, and self-confidence in one’s ability to manage components of CF care. Factors associated with food insecurity were reported by 26.3% of respondents. The median accuracy for questions regarding nutrient content of commonly used foods was 71.4% and 57.9% for CF nutrition therapy. Parents’ self-confidence in overall CF management was relatively high at a mean value 8.28 ± 1.22 of 10 possible. However, mean self-confidence in the CF nutrition domain was significantly less than mean self-confidence for the CF-related tasks domain, which included chest physiotherapy and medication administration (7.75 ± 1.56, 8.62 ± 1.24, P < .001, respectively). Parental knowledge of nutrition for CF and confidence in the application of this knowledge can improve the growth and nutrition status of children with CF. Identification of food security issues may enable health care professionals to adjust nutrition interventions and direct families to appropriate food resources. The MWCFC-Q could be useful for designing and testing educational interventions for nutrition management of CF.

Experience of care from the perspective of individuals with cystic fibrosis and families: Results from 70 CF Foundation accredited programs in the USA

“…McDonald et al did a cross-sectional study on nutritional knowledge and confidence levels of parents of children with CF. They found that confidence scores were lower for nutritional aspects of care as compared to pulmonary aspects of care [29]. There are numerous new skills parents and caregivers need to learn and having the confidence in difficult situations is not innate-it is developed and shaped by a variety of factors [30].…”

“…Ways to improve confidence include planning, preparing and learning [30]. Growth and development early in life are critical to the course of CF and building a parent's confidence may be one of the many factors needed [29]. Behavioral interventions and nutritional education have been shown to improve nutritional status in children with CF [31][32][33][34] and may in part relate to building confidence of the parents.…”

“…Redesigning care delivery to provide an experience of care that promotes confidence is a challenge. There are instruments to identify problem areas [29] and to understand the level of patient activation [35]. Another instrument for consideration is the Clinician Support for Patient Activation Measure to assess clinicians' beliefs about the importance of patient selfmanagement, in which clinicians support patients following their advice but do not fully support patients being independent, information-seeking caretakers of their health [36].…”

Self-efficacy: Empowering parents of children with cystic fibrosis

“…The nutritional status of children with CF relies on parents' abilities to effectively manage dietary and behavioral issues [5]. Previous research at this center suggested opportunities for improvement in parents' knowledge and confidence in their ability to manage nutrition concerns for their children with CF [6]. Parents reported more confidence in their abilities to manage tasks such as respiratory therapy, oral and inhaled medications, and minor illnesses at home than nutrition-related CF issues [6].…”

“…Previous research at this center suggested opportunities for improvement in parents' knowledge and confidence in their ability to manage nutrition concerns for their children with CF [6]. Parents reported more confidence in their abilities to manage tasks such as respiratory therapy, oral and inhaled medications, and minor illnesses at home than nutrition-related CF issues [6]. Interviews with families suggested a perception that tasks tend to be more concrete and less emotional than management of nutrition-related issues such as weight gain, differing dietary recommendations for various family members, and behavioral issues around eating [6].…”