Motivating adherence among adolescents with cystic fibrosis: Youth and parent perspectives

Abstract

Summary As advances in the care of individuals with cystic fibrosis (CF) have resulted in improved survival, therapeutic regimens for treatment of CF have become increasingly complex. This high treatment burden poses challenges to chronic disease self-management, particularly amongst adolescents. The aim of this qualitative study was to understand the barriers and facilitators of adherence to chronic CF therapies as perceived by adolescents with CF and their parents. In a series of structured interviews with 18 youth and their parents, we explored issues related to daily routines, youth and parental roles regarding chronic therapy, and motivators for adherence. All interviews were audio-recorded and coded for themes and patterns. Reported barriers to adherence included time pressures, competing priorities, heightened awareness of disease trajectory, privacy concerns, and lack of perceived consequences from non-adherence. Identified facilitators for adherence included recognizing the importance of therapies, developing strong relationships with care teams, establishing structured routines, and focusing on shifting responsibilities from a parent to their adolescent child. The themes uncovered by these interviews identify areas for intervention and support by clinical programs seeking to improve adherence and self-management strategies for adolescents with CF Pediatr Pulmonol.

Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis

“…This stage of life is frequently associated with poor treatment adherence and decline in respiratory function and nutritional status [24][25][26]. Transition works best when there is close integration between paediatric and adult centres and the process directly involves the adolescents with CF and their families in the process [27]. This can be achieved by transition clinics that share between paediatric and adult teams prior to transfer to adult centres for full time care.…”

“…The changing role of parents, siblings and friends during transition are also important to consider. Approaches for optimal transition are detailed in the ECFS standards of care and are well described in important disease-specific and generic guidelines [8,21,22,[25][26][27].…”

Evaluation of Medication-related Self-care Skills in Patients With Cystic Fibrosis

“…21 No. 6 • www.jppt.org lung transplantation, or had a diagnosis of CFrelated metabolic syndrome. All investigators were trained to administer questionnaires in a manner designed to reduce subjectivity and improve consistency, thereby reducing interviewer bias.…”

“…5 In a recent study, qualitative research interviews were utilized to uncover themes of facilitation and barriers to adherence. 6 One such facilitating theme was "recognizing the importance of therapies," which was identified as an area for intervention to improve skills. 6 A survey of 76 parents of children with CF found a positive correlation between increases in treatment knowledge and a child's level of self-care independence.…”

“…6 One such facilitating theme was "recognizing the importance of therapies," which was identified as an area for intervention to improve skills. 6 A survey of 76 parents of children with CF found a positive correlation between increases in treatment knowledge and a child's level of self-care independence. 7 McLaughlin and colleagues 8 concluded there is a need for greater emphasis on the importance of development of self-care skills, which included medication management.…”