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Managing chronic illness: parents with a ventilator--dependent child
Journal of Pediatric Nursing
|August 1, 1989
Summary
Caring for children requiring mechanical ventilation presents unique challenges for families. Parents navigate barriers and utilize resources, emphasizing normalization and assertiveness when interacting with healthcare professionals.
Area of Science:
- Pediatric Healthcare
- Family Support Services
- Qualitative Research Methods
Background:
- Increasing survival rates of children dependent on mechanical ventilation.
- Growing need to understand family impact and parental management styles.
- Varied care settings (hospital vs. home) for ventilator-dependent children.
Purpose of the Study:
- To explore the impact of ventilator-dependent children on family dynamics.
- To describe parental management styles in caring for these children.
- To identify key themes in family caregiving experiences.
Main Methods:
- Qualitative study design.
- In-depth analysis of 10 families with ventilator-dependent children.
- Thematic analysis of parental experiences and management strategies.
Main Results:
- Three major themes emerged: barriers to care, available resources, and parenting approaches.
- Parents aimed to normalize the child's experiences despite medical needs.
- Effective interaction with healthcare professionals required negotiation and assertiveness.
- External support persons were crucial for family well-being.
Conclusions:
- Families of ventilator-dependent children face significant challenges requiring adaptive management.
- Parental assertiveness and normalization strategies are key to care.
- Access to external support systems is vital for family resilience and effective care coordination.
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