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Revealing the hidden agency of children in a clinical setting
Christine Dedding1,2, Ria Reis3, Bart Wolf4
1Amsterdam Institute for Social Science Research, University of Amsterdam, Amsterdam, the Netherlands.
Insights
Children with diabetes actively manage their health by balancing personal and medical goals, demonstrating agency in clinical encounters. Understanding this practical logic is key to improving pediatric healthcare and treatment adherence.
Area of Science:
- Pediatric Healthcare
- Child Psychology
- Chronic Disease Management
Background:
- Clinical interactions often overlook children's agency, with adults speaking for them.
- Current approaches fail to acknowledge children's active role in their healthcare.
- There's a need to shift from speaking for children to engaging with them directly.
Purpose of the Study:
- To investigate how children demonstrate agency within clinical settings.
- To inform improved healthcare practices for pediatric patients.
- To advance the participation agenda by understanding children's agency.
Main Methods:
- Qualitative study utilizing participant observation.
- Interviews and focus group discussions were conducted.
- Research involved children, parents, and medical professionals.
Main Results:
- Children actively interpret health education, not passively accepting it.
- They integrate personal experiences and goals with medical advice for disease management.
- Children demonstrate agency by balancing their own objectives with those set by healthcare providers.
Conclusions:
- Facilitating child participation requires understanding their enacted agency in clinical settings.
- Children actively participate in their healthcare based on practical reasoning.
- Recognizing children's agency is crucial for tailoring diabetes treatment to their lives and improving well-being.
Background:
Interactions with children in clinical settings are often criticized because parents and medical professionals speak for children rather than to them. Such approaches do not take the agency of children into account.
Objective:
First, to examine how children enact agency in a clinical encounter and draw lessons from this to improve health-care practices for children and, second, to explain how looking at agency might help to move the participation agenda forwards.
Design:
A qualitative study incorporating a range of methods, including participant observation, interviews and focus group discussions.
Setting:
Three hospitals in the Netherlands.
Participants:
Children with diabetes type 1, between 8 and 12 years (n = 30), parents (n = 22) and medical professionals (n = 16).
Results:
Children do not simply accept the recurrent health education from medical professionals. Instead, they attribute their own personal meaning to their disease and treatment. Drawing from their years of experience with the disease and health care and the image of a passive and vulnerable child, they actively find ways to balance personal goals with medically defined goals.
Conclusion:
Efforts to facilitate child participation should be based on insights into the ways in which children enact agency in the clinical encounter. Our data show that children already participate in health care and that their enactment of agency is based on a practical logic. Understanding of children's current participation and agency is needed to more successfully attune their treatment to their daily lives with diabetes. This is crucial for the success of treatment and the well-being of children.
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