Parenting adolescents with cystic fibrosis: the adolescents’ and young adults’ perspectives

Abstract

Vibeke Bregnballe1, Peter Oluf Schiøtz1, Kirsten Lomborg21Department of Pediatrics, Aarhus University Hospital; 2Department of Nursing Science, Institute of Public Health, Aarhus University, Aarhus, DenmarkBackground: When suffering from cystic fibrosis (CF), a number of problems may arise during adolescence; for example, poor adherence. The problems may be attributed to the adolescent being insufficiently prepared for adult life. Research on different ways of parenting adolescents with CF and the influence of different parenting styles on the adolescents' adherence to treatment is still limited.Aim: The aim of this study was to identify the types of parental support that adolescents and young adults with CF want and find helpful in terms of preparing them for adult life.Methods: Sixteen Danish adolescents with CF, aged 14–25, participated in the study. Two focus group interviews were carried out, one for 14–18-year-olds and one for 19–25-year-olds. Individual interviews were conducted, with three subjects. Using interpretive description strategy, a secondary analysis of the interview data was conducted.Results: The adolescents and young adults wanted their parents educated about the adolescent experience. They wanted their parents to learn a pedagogical parenting style, to learn to trust them, and to learn to gradually transfer responsibility for their medical treatment. Additionally, the adolescents noted that meeting other parents may be beneficial for the parents.Conclusion: The findings of this study suggest that adolescents and young adults with CF want their parents to be educated about how to handle adolescents with CF and thereby sufficiently prepare them for adult life.Keywords: chronic illness, parenting style, qualitative research, patient preferences, interpretive description