Beyond Survival: Child and Parent Well-Being in Pediatric Heart Failure

Area of Science:

• Pediatric Cardiology
• Quality of Life Research
• Family Support Systems

Background:

• Children with heart failure (HF) face significant risks including hospitalizations, transplant needs, and mortality.
• Parental care is central for pediatric HF patients at home, impacting child and parent quality of life.
• Increasing medical complexity and longer transplant waitlists highlight the need to understand quality of life in pediatric HF.

Purpose of the Study:

• To identify key quality of life themes experienced by children with HF and their parents.
• To explore the lived experiences of pediatric HF dyads in a contemporary cohort.
• To inform the development of improved support programs for pediatric HF.

Main Methods:

• Conducted semi-structured interviews with 13 dyads of children with HF and their parents.
• Utilized thematic analysis to identify central quality of life themes.
• Focused on a contemporary cohort of pediatric patients with heart failure.

Main Results:

• Five central themes emerged: desire for normalcy, extensive parental responsibilities, social isolation, diverse coping mechanisms and resilience, and lack of specific support resources (especially mental health).
• Parents reported operating at maximum capacity, managing medical and psychosocial challenges.
• Social isolation was a significant and increasing issue for both children and parents.

Conclusions:

• Pediatric HF care presents unique challenges impacting quality of life for the entire family.
• There are significant opportunities to enhance support programs, particularly mental health services, for pediatric HF populations.
• Interventions should aim to facilitate normalcy, alleviate parental burden, and combat social isolation.