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Parental agency in pediatric palliative care
1Department of Philosophy and Bioethics, Medical College, Faculty of Health Sciences, Jagiellonian University, Krakow, Poland.
Insights
This study redefines parental agency in pediatric palliative care, emphasizing active, relational caregiving. It highlights parents
Area of Science:
- Pediatric Palliative Care
- Family Studies
- Bioethics
Background:
- Traditional views of parental agency in pediatric palliative care are often insufficient.
- Existing models may not fully capture the complexities of parental roles in end-of-life care.
Purpose of the Study:
- To propose a new, active conceptualization of parental agency within pediatric palliative care.
- To explore the relational and cognitive dimensions of parental agency in caring for seriously ill children.
- To examine the influence of cultural and social contexts on parental decision-making.
Main Methods:
- Illustrative case study from a clinical setting.
- Analysis of empirical studies on parental agency.
- Reality-based perspective on parental agency as relational activity and cognitive capacity.
Main Results:
- Parental agency is best understood as dynamic, future-oriented, and relational, not individualistic or fixed.
- Parents learn and grow through their role as caregivers, developing compassion and parenting skills.
- Cultural and social contexts significantly shape parental agency and decision-making processes.
Conclusions:
- Parental agency in pediatric palliative care is more than proxy decision-making; it's a complex, evolving process.
- A positive, relational conceptualization of parental agency supports parents in their caregiving journey.
- Understanding parental agency as active and adaptive is crucial for effective pediatric palliative care.
Abstract:
The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality-based perspective as an activity focused on relationships and the cognitive capacity of parents vis-a-vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision-making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future-oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision-making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents.
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