While achieving adequate nutrition is a central element of optimal CF care (1), Modi and Quittner (4) found that both children and parents lacked knowledge about nutrition, including the importance of offering snacks, taking enzymes before a meal or snack, and boosting calories. Even when families have knowledge of the recommended care practices for a chronic illness there are often barriers to following recommendations that negatively impact illness management and family functioning (5, 6). A common barrier to nutrition adherence in CF, particularly in early childhood, is the occurrence of challenging mealtime behavior. Many of these mealtime behaviors are developmentally-appropriate, yet warrant targeted intervention because increased behavior problems at mealtime are associated with lower caloric intake (7) and decreased child weight status (8). These problematic behaviors have also been found to impact family functioning at mealtimes in families of children with CF (5, 6, 8).

To address these mealtime behaviors the CF Foundation recommends a behavioral approach be integrated into standard nutrition care, when possible, for children with CF as early as post-positive newborn screen (1, 9, 10). This recommendation is based on findings from a series of studies by Stark, Powers, and colleagues that documented increased adherence to calorie recommendations (11–13) and improved growth (12, 13) using the combined behavior-nutrition approach.

The Powers et al. (11) study was the first to demonstrate that dietary adherence and growth could be improved in children as young as toddlers with CF using an eight-week behavior-nutrition (BN) intervention. The treatment emphasized nutrition counseling to increase energy intake (i.e., recommending types of foods and use of addables/spreadables) and child behavioral management training (i.e., including differential attention and contingency management skills). Longitudinal outcomes for the cohort reflected increases in weight-for-age z-scores and energy intake for the majority of children from posttreatment to the two-year time point. However, at the four-year time point, energy intake and weight for age z-scores declined for over half of the children (14). Notably, the decline in nutritional and growth outcomes between follow-up years two and four was simultaneous with the children entering school.

Previous literature has described the mealtime behavior challenges present in toddlerhood and school-age cohorts separately, however research has yet to specifically examine the challenges families face as they transition from toddlerhood to school-age. The Powers et al. (14) data suggest that this is a crucial time in child development to identify factors that affect optimal growth. The aims of the current study were to: 1) better understand how families used the strategies taught in a behavior-nutrition intervention and 2) identify the challenges with CF management families experienced during this developmental transition, particularly nutrition. Qualitative analysis is an optimal methodology to achieve these aims (15).

Generalizability of the study findings is supported by the similarity of the study sample to previous research samples in two main areas. Prior to participating in the BN intervention, parents in the study had variable levels of knowledge about nutrition care in CF (4). Moreover, parent-reported responses to their children’s mealtime behavior prior to the intervention were similar to previous findings by Powers, Patton, & Byars (18), including the use of coaxing and pleading with their children during mealtimes to encourage them to eat.

While similar to previous samples in some respects, this cohort was able to provide a unique and valuable perspective that can be used to guide CF clinical care improvement and science. The families in the current study received an evidence-based treatment and were able to discuss many of the salient nutrition and behavioral recommendations that they learned. Families continued to use the strategies in some way several years later because they found them helpful. Notably, in spite of being directly targeted in the BN treatment and likely addressed in routine CF care, several parents reported that picky eating and behavioral noncompliance persisted beyond toddlerhood. Some families had only variable success with the recommendations, an outcome commonly observed in clinical trials and routine clinical care.

This study brings attention to new barriers to adherence and challenges that families may encounter as children move into early school-age that notably co-occur with ongoing challenges, such as parent stress. The most frequent new challenges described by families included the transition to school and transfer of treatment responsibility from parent to child. Previous qualitative research in the area of CF physiotherapy education also documented that preparing families for challenging developmental transitions is necessary (16). The transition to school is multifaceted because many potential stressors are introduced at this time such as increased schedule demands, school absences due to illness, and decreased influence over nutrition intake. The complex challenge associated with transfer of treatment responsibility has been actively studied in other pediatric populations. Family-based interventions have been developed that provide education and problem-solving skills (19, 20) to address the parent-child conflict associated with this process (21). This work has yet to be done in CF.

The American Academy of Pediatrics (AAP) recognizes anticipatory guidance as a key aspect in the promotion of healthy physical, emotional, and social development for children and adolescents (22). The European Academy of Paediatrics (EAP) affirms the importance of this preventative approach. However, healthcare providers sometimes miss opportunities to provide anticipatory guidance to parents, in spite of parents wanting this information (23). In line with the pediatric academies’ focus on prevention, the Cystic Fibrosis Foundation has developed anticipatory guidance handouts detailing how to work with school settings to ensure appropriate accommodations, (24) and behavior-nutrition handouts to encourage positive eating behavior for children aged birth to 2 years (25).

The length of time between the end of the clinical trial and the interview was approximately five years and therefore the passing of time may have affected reported experiences with the BN intervention. In addition, given the increased focus on nutrition in CF care at our institution and many others during this time period, it is possible that parent recall of the intervention was influenced by recommendations or information received during standard CF care prior to the interview. In spite of the small sample of families interviewed, sufficient thematic saturation was supported by the limited number of themes that were excluded from the final analysis. However if more parents were available to be interviewed, novel ideographic content may have emerged.