Impact of chronic illness on child and family: an overview based on five surveys with implications for management
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Chronic childhood illness significantly impacts families, affecting parental well-being, finances, and social life. Early identification and coordinated care are crucial for minimizing psychosocial challenges in chronically ill children.
Area of Science:
- Pediatric Health
- Child Psychology
- Family Medicine
Background:
- Chronic childhood illness presents significant psychosocial challenges for children and their families.
- Optimal management strategies are needed to mitigate long-term negative impacts.
Purpose of the Study:
- To investigate the psychosocial impact of chronic illness on 404 children and their families across five distinct study populations.
- To identify key areas of impact and inform strategies for improved family support and care coordination.
Main Methods:
- Systematic investigation over eight years by the Rochester Child Health Group.
- Data collection through parental interviews, school reports, and psychological testing.
- Comparison with a control group of healthy children.
Main Results:
- Parents reported significant impacts including worry (75-97%), financial strain (46-60%), and fatigue (31-65%).
- Over half of parents anticipated negative effects on their child's future education, job prospects, and social life.
- Chronically ill children showed higher rates of maladjustment, underachievement, and school psychologist referrals compared to controls.
Conclusions:
- Chronic childhood illness imposes substantial psychosocial burdens on families.
- Identifying at-risk families early and ensuring coordinated, sustained care are vital.
- Enhanced support systems and clear care orchestration can minimize negative sequelae for chronically ill children.
Abstract:
For the past eight years the Rochester Child Health Group has systematically investigated chronic illness in childhood with the goal of minimizing the psychosocial sequelae of chronic illness through more optimal management. This overview examines the impact of chronic illness on 404 children and their families in five separate studies: 1) 209 children in a follow-up of all children with chronic symptoms in a previous random sampling of children; 2) 42 children with juvenile arthritis; 3) 44 nephrotic children; 4) 54 asthmatic children; 5) 55 chronically ill children living in rural areas of Western New York. Information was obtained through parental interviews, school reports, and psychological testing of the child. The percentage of parents reporting impact of the child's illness on family differed according to study population. The percentage reporting areas of impact according to severity of the illness is as follows: worry, 75--97; financial, 46--60; fatigue of parent, 31--65; change in sleep arrangements, 17--31; change in furnishings, 15--40; less social life for parents, 12--35; restrictions on travel, 13--40; parental friction, 9--20; sibling neglect, 10--20; sibling resentment, 10--25; embarrassment, 12--20; interference from relatives, 5--17. Over half the parents felt their child's future education, job chances, and social life would be affected. One third reported activity limitations. Compared to a control group of children, a significantly greater percentage of parents of the chronically ill reported teacher concern about their child's effort and behavior, and showed concern about the child having too few friends. Two of the three studies in which psychological appraisals were obtained suggested that more of the ill children than controls showed indices of maladjustment. School information from two studies showed more of the ill children than controls underachieving and being referred to a school psychologist. Work by the Rochester Child Health Group has pointed up several ways in which providers of care can more optimally assist families in order to minimize these problems: 1) identifying families at risk at the onset to find which families may require special support; 2) Assuring that family and all care providers know who is orchestrating care, and that all areas of care are being provided; 3) Assuring that where necessary, an outreach person is meeting the needs of the family and child on an intensive, sustained, caring and creative basis.