Creating developmentally appropriate literature for children with cystic fibrosis

Management of cystic fibrosis (CF) requires lifelong adherence to treatment. Opportunities to teach child self‐care skills are frequently missed. Intervention during early childhood may change the trajectory of maladaptive behaviors and interactions (Ernst MM, et al. Child Adolesc Psychiatr Clin N Am. 2010;19(2):263‐83). To improve education, a children's story was written about a child with CF experiencing hospitalization who learns about the cause of CF and the importance of self‐care behaviors such as treatment adherence. The purpose of this pilot study was to evaluate the feasibility and usefulness of an educational book tailored to the developmental level of preschool and young school age children (ages 4‐10 years) with CF. Endpoints were measured by children's knowledge gained (pre‐/post‐intervention test) and parent questionnaire to determine feasibility, usefulness, and perceived satisfaction. A pre‐/post‐test randomized controlled trial design was utilized with 40 children with CF between ages 4‐10 years and their parent (child‐parent dyad), admitted to the hospital or seen in the outpatient CF clinic. The test group received the CF book (Breathing Better: Peter's Trip to the Hospital) and the control group received a generic children's book (Going to the Hospital). The evidence‐based knowledge pre‐/post‐test is an 11 multiple choice questionnaire developed by a nurse clinician, a Child Life Specialist, and a nurse researcher. Procedures consisted of study staff completing the pretest with the child, demonstrating reading of the book, and requesting parents to read the assigned book at least once per day for 3 days. Follow‐up included completion of the post‐test questionnaire with the child and parent. Analysis of descriptive statistics for demographics and parent questionnaire, chi square for group comparison, and t‐test for pre‐/post‐test comparison were completed. A total of 40 children with CF (53% male mean age 7.05 years; median 7 years) along with their parent dyad completed the study with 20 in each group. Demographic comparison between the groups were similar. Preliminary comparisons of pre‐/post‐test mean scores between the groups were non‐significant. The level of difficulty per item for post‐test intervention group were moderate (6 out of the 11 items were scored correct by 70% or less of the respondents). However, parents with the CF book reported their child enjoyed the book (100%), had improved understanding of the disease (90%), learned something he/she did not previously know about CF (child 90% parent 45%), increased discussion about CF between child and parent (90%), and would recommend the book to other parents of children with CF (100%). Findings from this study have led to revision of the pre‐/post‐test questions. Additional enrollment will be requested to re‐evaluate knowledge assessment. Although knowledge assessment was insignificant, the usefulness and feasibility of the book were positive. With diagnosis and coping education at the core of Nursing and Child Life roles, this CF‐specific children's book met the study's secondary aim of being useful to child‐parent dyads enrolled in the study.