Every parent tells a story: why non-adherence may persist in children receiving guideline-based comprehensive asthma care

Objective: Effective self-management and adherence to inhaled corticosteroids are issues of particular interest in comprehensive asthma care. In spite of this care, however, a number of parents and children remain non-adherent. The reasons for this non-adherence have up till now been unknown, because previous adherence studies have based their findings either on populations with poor adherence or on unreliable self-reported adherence. This study was designed to explore factors that contribute to persistent non-adherence to inhaled corticosteroids in children ranging between 2 and 12 years of age receiving comprehensive asthma care, with adherence assessed objectively. Methods: This qualitative study was based on indepth interviews which took place in the homes of parents whose children had completed a one-year follow-up of electronically measured adherence to inhaled corticosteroids. Rich and comprehensive descriptions of parents' own accounts of self-management behavior were obtained using active listening techniques. Each interview was recorded and transcribed verbatim followed by data analysis using standard methodology for qualitative studies. Results: Twenty children's parents (mean age 5.9 years) were interviewed. Distinctive patterns of modifiable barriers to adherence emerged, including a novel finding of parents misjudging their child's ability to manage the daily use of medication by him/herself. Persistent nonadherence appeared to be caused by a number of maintaining factors. Most noticeable factors were unawareness of non-adherence by both parents and health care providers, a lack of parental drive to achieve high adherence and ineffective parental problem-solving behaviour. Conclusions: This study has identified modifiable barriers to adherence in families participating in a comprehensive asthma care programme. Future studies are needed to verify our novel findings and to investigate whether interventions around these barriers are needed to increase the effectiveness of asthma care programs