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Children with chronic illness. The prevention of dysfunction
1Harvard Medical School, Boston, Massachusetts.
Insights
Children with chronic illnesses need family support to manage psychological and daily life challenges. Effective interventions and professional guidance build trust, improving coping and reducing negative impacts on the child and family system.
Area of Science:
- Pediatric Health
- Family Psychology
- Child Development
Background:
- Children with chronic illnesses face significant risks to psychological adjustment and daily functioning.
- Families of chronically ill children are susceptible to marital, economic, and sibling-related dysfunctions.
- Pediatricians must recognize and address the predictable ways children respond to family stress.
Purpose of the Study:
- To highlight the psychological and functional challenges faced by chronically ill children and their families.
- To emphasize the importance of professional interventions and family-centered approaches.
- To integrate school performance as a key indicator of a child's well-being in the context of chronic illness.
Main Methods:
- Review of existing literature on interventions for chronically ill children and their families.
- Analysis of principles for building trust between families and healthcare professionals.
- Identification of programmatic efforts associated with reduced morbidity.
Main Results:
- Trust in professional relationships is built on continuity, active and mutual participation, advocacy, and a focus on coping.
- Efficacious interventions include ongoing education, counseling, stress management, and social support facilitation.
- Sudden behavioral changes in children may indicate underlying family stress requiring professional attention.
Conclusions:
- A family-centered approach focusing on coping and competence is crucial for managing chronic illness.
- Pediatricians play a vital role as guides and advocates, fostering trust with families.
- Comprehensive support systems addressing the child, family, and community are essential for minimizing the impact of chronic illness.
Abstract:
Children with long-term illnesses are at risk of developing problems in psychological adjustment and in functioning in activities of daily life. Their families face increased risks of marital and economic dysfunction, and siblings too face special tasks living with a chronically ill child. A variety of interventions can help children and families to cope effectively with the tasks of chronic illness. Pediatricians should be alert to effects on the family. Children respond to family stress in very predictable ways. Inasmuch as the stress of chronic illness may affect the marital relationship, there is a likelihood of concurrent behavioral and school problems. Relatively sudden changes in behavior may signal family issues that require professional attention. Drotar et al. maintain that professionals should serve as guides or advocates for children with chronic illness and their families. The relationship that develops between families and professionals is based on trust. They believe that "trust appears to evolve from the following principles: (1) continuity of relationship, (2) active participation by professional caregivers, (3) mutual participation of child and family, (4) advocacy, (5) a focus on coping and competence, (6) a developmental perspective, and (7) a family-centered focus." Cadman et al. identified a similar set of elements that characterizes an efficacious preventive intervention approach. In addition, they propose specific programmatic efforts that are associated with less morbidity. These include ongoing education and counseling for the child, family, and community regarding chronic illness and its management, use of stress management techniques to promote mastery and reduce the impact of stressful life events, and facilitation of social support mechanisms for families with chronically ill children. We have added consideration of the child's performance in school.
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