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Child and parent perceptions of monitoring in chronic illness management: a qualitative study
1Center for Injury Research and Prevention, The Children's Hospital of Philadelphia, PA, USA.
Insights
Parental monitoring of childhood chronic illness management involves parents observing, reminding, and tracking adherence. Children’s responses range from acceptance to irritation, with varied information disclosure behaviors observed.
Area of Science:
- Pediatric Health
- Chronic Illness Management
- Family Health Dynamics
Background:
- Managing childhood chronic illnesses presents daily challenges due to complex treatment regimens.
- Parental monitoring and child disclosure are crucial for effective management but are not fully understood.
Purpose of the Study:
- To qualitatively examine parental monitoring behaviors.
- To investigate youth disclosure of health information.
- To understand perceptions and reactions to these dynamics in pediatric chronic illness.
Main Methods:
- Qualitative study design.
- Involved youth with chronic illnesses (e.g., asthma, diabetes, cystic fibrosis) and their parents.
- Examined monitoring behaviors, information disclosure, and reactions.
Main Results:
- Parents employed strategies like verbal solicitation, symptom observation, reminders, and adherence tracking.
- Youth reactions to monitoring varied, including acceptance and irritation.
- Youth exhibited diverse disclosure behaviors, from withholding to spontaneous sharing.
Conclusions:
- Qualitative findings align with quantitative research on parental monitoring in chronic illness.
- Adds depth to the understanding of parental roles in managing pediatric chronic conditions.
- Identifies areas for future research in pediatric chronic illness management.
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.
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