Effects of chronic illness on children and their families

Abstract

The proportion of children affected by chronic illness is relatively high, approximately 10–12%. For these children, there is no available cure and the best that medical care can currently offer is relief from symptoms and the opportunity to participate in normal life as far as possible. Epidemiological work suggests that many of the children experience relatively few restrictions on everyday life, but about 1–2% of the total population of sick children have more severe conditions (Gortmaker & Sappenfield, 1984).

Perspectives of parents and tutors on a self‐management program for parents/guardians of children with long‐term and life‐limiting conditions: “a life raft we can sail along with”

“…The impact of caring for children with long-term or life-limiting conditions as described by parents attending the SPP accords with the published literature (e.g., Eiser, 1993). Parents experienced the burden of care in terms of social isolation, loss of time for themselves, stress, and a lack of empathy and understanding from others.…”

“…However, little research has been conducted to investigate whether such programs can help parents. Barlow and Ellard (2004) failed to identify any reviews of effectiveness of psychoeducational interventions focusing on parents of children with long-term or life-limiting conditions despite the body of evidence reporting the substantial burden involved in such care (e.g., Barlow et al, 1998;Eiser, 1993;Raina et al, 2004).…”

Transplanting the adolescent cystic fibrosis patient: can we do it?

“…Even with this perspective the literature is far from clear regarding the extent to which children show maladjustment. There are also many other issues of concern in addition to psychosocial function, but many of these are poorly studied, partly because there is no obvious standardized instrument available [Eiser, 1997].…”

Assessment of need for a children's hospice program

“…Parents' sense of isolation, in conjunction with the neverending responsibility of caring for the child, the disruption of normal lifestyles, and the worry about the child's condition and the future, results in enormous burdens of stress and may account for reports that family stress, marital disruption, and divorce increase in families with a chronically ill child (Drotar, 1985;Eiser, 1982). In a survey of parents of children with severe and/or long-term conditions in the Kingston, Ontario region, the economic realities of caring for such a child were such that parents had to make significant changes in their employment because of the child's condition and necessary care.…”