Trajectories of adaptation in pediatric chronic illness: The importance of the individual.

Abstract

This study used individual growth modeling to examine individual difference and group difference models of adaptation. The adaptation of 27 children with juvenile rheumatoid arthritis (JRA) and 40 children with insulin-dependent diabetes mellitus (IDDM) was tracked for 18 months from diagnosis. A control group of 62 healthy children was followed over the same time period. Clustering procedures indicated that child and family adaptation could be described by a number of distinct adaptation trajectories, independent of diagnostic group membership. In contrast, parental adaptation trajectory was associated with diagnostic group membership and control over disease activity for the JRA group and with diagnostic group membership for healthy controls. The observation of common patterns across trajectory sets, as well as the finding that trajectories were differentially related to a number of variables of interest, support the use of trajectories to represent adaptation to chronic disease.

Family Functioning in Children with Chronic Illness Compared with Healthy Controls: A Critical Review

“…For the most part, researchers comparing family functioning in families of children with type 1 diabetes to that of families with physically healthy children found few to no significant differences on domains of family functioning. [21][22][23] Similar to researchers investigating family functioning in families with a child with CF, research investigating families of children with type 1 diabetes found that mothers of children with diabetes reported having less time to engage in activities with their children as compared to mothers of physically healthy children. 22 Also consistent with the CF literature, parents of children with type 1 diabetes reported adopting a somewhat differing set of family values as compared to families of physically healthy children.…”

“…11,29 Only a few researchers required a specific post-diagnosis time period. 19,21,23 This selection criterion represents a strength in the research, since it allows for some control of functioning difficulties related to adjustment to a recent diagnosis. Researchers have demonstrated that families are typically shocked when their child is first diagnosed with type 1 diabetes.…”

Development and preliminary validation of a self-efficacy measure for use among parents of children with juvenile idiopathic arthritis

“…Parents of children with chronic illnesses, such as juvenile idiopathic arthritis (JIA), are at increased risk for psychosocial dysfunction (1)(2)(3)(4)(5). However, only a minority of parents appear to experience a significant degree of psychosocial disturbance (6,7).…”

“…According to Frank and colleagues (1), "The functioning of the parent appears to have a much greater impact on adaptation to chronic illness and child functioning than utilitarian (e.g., income, education) and disease variables." Reflecting these sentiments, it is suggested that positive maternal adaptation and functioning can be fostered by reducing maternal anxiety (21) and maintaining parents' self-esteem, psychological stability, and social support (1,22).…”

“…Reflecting these sentiments, it is suggested that positive maternal adaptation and functioning can be fostered by reducing maternal anxiety (21) and maintaining parents' self-esteem, psychological stability, and social support (1,22). Moreover, in a study of 365 mothers of children with diverse chronic conditions, Silver et al (7) concluded that the psychological distress might be reduced by interventions enhancing perceived control and selfworth.…”