Parental agency in pediatric palliative care

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.