Child and parent perceptions of monitoring in chronic illness management: a qualitative study


Victoria A. Miller, Department of Anesthesiology and Critical Care Medicine, The Children's Hospital of Philadelphia, CHOP North Room 1515, 34th Street and Civic Center Boulevard, Philadelphia, PA 19104, USA


Background  The management of a childhood chronic illness can be challenging because it can involve frequent and complex treatment tasks that must be carried out on a daily basis. Parental monitoring of the treatment regimen and child disclosure of health-related information may impact effective illness management but are not well understood.

Methods  The present study utilized qualitative methods to examine parental monitoring-related behaviours, youth disclosure of health-related information, and both perceptions about, and reactions to, these behaviours in a sample of youth diagnosed with a chronic illness (e.g. asthma, diabetes and cystic fibrosis) and parents of youth with one of these illnesses.

Results  Parents solicited information from youth verbally, observed symptoms, reminded youth about treatments and tracked indicators of treatment adherence (e.g. dose counters; glucose meters). Youth reactions varied from acceptance to irritation. Youth behaviours included withholding information and freely disclosing spontaneously and in response to requests.

Conclusions  Findings derived from this qualitative methodology demonstrate convergence with findings from quantitative studies on this topic, add to the literature related to parental monitoring of chronic illness management and suggest several avenues for future research.