To address the risk of undernutrition in patients with CF, patients are encouraged to achieve dietary intakes of 120–150% of the daily recommended intake (DRI) of calories for individuals without CF and 40% of those calories from fat (1). Despite these treatment recommendations, a significant number of patients with CF remain underweight and adherence rates to the calorie intake recommendations range from 12–16% (2). Therefore, optimizing nutritional management and developing effective strategies to improve dietary adherence are critical for promoting growth, quality of life, and long-term survival in patients with CF (1, 3).
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).