Families with medically fragile children: an exploratory study

Area of Science:

• Pediatric Nursing
• Family Caregiving
• Home Healthcare

Background:

• Increasing survival rates for critically ill children lead to more home-based care.
• Early discharge programs facilitate the transition of medically fragile children to home environments.
• Home care presents unique daily challenges for families.

Purpose of the Study:

• To describe daily decisions and problems faced by families caring for medically fragile children at home.
• To identify common family coping strategies (F-COPES) utilized.
• To assess available family resources using the Family Strengths Scale.

Main Methods:

• Exploratory study utilizing a convenience sample of 10 families.
• One-hour in-home interviews were conducted.
• Diverse family respondent roles included mothers, fathers, grandmothers, and legal guardians.

Main Results:

• Families primarily consulted healthcare professionals for treatment issues, not routine child care.
• The most frequently used coping strategies were Mobilizing Family and Acquiring Social Support.
• Identified needs included enhanced financial resources and alternative child care services.

Conclusions:

• Home care for medically fragile children requires robust family support systems.
• Families demonstrate resilience through specific coping mechanisms.
• Policy and service development should address identified gaps in financial and child care support for these families.