Maintaining family life balance while facing a child's imminent death-A mixed methods study

Area of Science:

• Pediatric Palliative Care
• Family Medicine
• Sociology of Health

Background:

• Childhood end-of-life care presents significant challenges for families.
• Parents caring for a terminally ill child at home have unique and pressing needs.
• Understanding these needs is vital for improving support systems.

Purpose of the Study:

• To explore parents' experiences and needs during home-based end-of-life care for their children.
• To identify systemic factors impacting the provision of pediatric end-of-life home care.
• To inform improvements in family-centered care models.

Main Methods:

• A concurrent embedded mixed methods design was employed.
• Quantitative data from medical charts and parental questionnaires were analyzed.
• Thematic analysis was conducted on interviews with parents providing home end-of-life care.

Main Results:

• Parents created a sense of normalcy at home but experienced exhaustion balancing family and care demands.
• Parental readiness and social support were key drivers for home care.
• Parents required practical assistance (e.g., housekeeping) and faced challenges with insurance; only 34.8% received pediatric palliative care team support.

Conclusions:

• Feasibility of pediatric end-of-life home care relies heavily on parental efforts.
• Hospital-based pediatric palliative home care teams offering housekeeping and psychological support can better address parental needs.
• Systemic improvements are needed to support families during pediatric end-of-life care at home.