Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study

Area of Science:

• Pediatric Palliative Care
• Medical Ethics
• Family Caregiving

Background:

• Life-limiting illnesses in children present complex medical decisions for caregivers.
• Effective communication with healthcare providers can alleviate psychosocial distress.
• Understanding caregiver decision-making is crucial for supporting families.

Purpose of the Study:

• To explore how caregivers make decisions regarding the medical care of terminally ill children.
• To identify factors influencing caregiver decision-making in pediatric end-of-life care.
• To inform healthcare providers on supporting families during complex medical decision-making.

Main Methods:

• Semistructured interviews were conducted with caregivers of terminally ill children.
• Data analysis involved inductive, concurrent coding to identify common themes.
• Thematic saturation was reached through rigorous analysis of interview transcripts.

Main Results:

• Caregiver decision-making was significantly impacted by the nature of their relationships with medical providers.
• Trusting relationships were characterized by empowered caregivers and patient-centered care.
• Nontrusting relationships stemmed from perceived objectification, information withholding, or the need to educate providers.

Conclusions:

• Caregiver decision-making for terminally ill children is complex and requires robust support from medical providers.
• Establishing trusting relationships with healthcare teams is vital for effective decision-making.
• Supported decision-making can alleviate suffering and distress for children and their families.