Background
Health educators play an important role in designing and implementing effective programs for parents of children with chronic disease. Research on chronic childhood illness has shown that considerable demands are placed on parents who are caring for ill children; with increasing severity of the disease producing increasing demands on the caregiving parent. In order to effectively provide for children’s health, the health of their parents must also be addressed.
Objectives
1. To identify quality of life issues of parents and caregivers of chronically ill children. 2. To develop health education strategies designed to improve coping skills in parents caring for a chronically ill child.
Methodology
This study sample consisted of 100 caregivers from Children’s Hospital of Alabama from August 2000 through April 2001. Three surveys were telephone administered to the study sample: The Caregiver Quality of Life for Cystic Fibrosis Scale, Medical Outcomes Study Short Form SF-36, and the Beck Depression Inventory.
Results
Specific social, physical, spiritual, emotional, and financial issues were identified. Rank order exploratory analysis of item means revealed 3 quality of life issues that were most important to caregivers. These priority concerns included 1) deterioration of their loved ones’ health (mean=2.45) fear of their loved ones’ death (mean=2.20), and 3) having a more positive outlook on life since their loved ones’ diagnosis (mean=2.04).
Recommendations / Conclusion
Based on this research, health educators working in medical care settings should prioritize programs appropriate for caregivers of chronically ill children. Specifically, health educators should: 1) Conduct careful needs assessments to determine the demands, challenges, and resources relevant to caregivers. 2) Develop stress management programs specific to the needs of caregivers. 3) Encourage caregiver preventive health behaviors. 4) Provide culturally sensitive educational materials and available resources from existing health organizations. 5) Make appropriate referrals to available resources and counseling services. 6) Identify opportunities for enhancing interpersonal relationships and improving quality of life.
These elements provide lessons and insights for health educators designing and implementing effective patient health education programs targeted for caregivers of chronically ill children.