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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.

A nursing intervention that focuses on health rather than illness and that involves the family as well as the patient appears effective in preventing psychosocial maladjustment in children with chronic illnesses. A total of 332 children and their families were studied. Tests measuring the parent's evaluation of the child's behavior and the child's self-perception were administered before and after the intervention. Improvements were noted on tests of anxiety and depression as well as on tests of self-perception. Analysis of the parent-completed questionnaires indicated there were significant improvements in child behavior and adjustment. Surprisingly, children between four and seven years old rated themselves lower in peer acceptance after the intervention. This was not the case for the children between eight and 16 years old., Objective. This study was conducted to determine whether a specialized form of nursing could help prevent or reduce psychosocial maladjustment among children, aged 4 to 16 years, with chronic physical disorders. In contrast to other studies, nurses were chosen to provide the intervention based on their central role in health care and the appropriateness of their training for this task. Methodology. A clinical trial was concluded in which 332 children and their families were randomly assigned either to receive this specialized nursing for a 1-year period, or to remain in the control condition. The children were all active outpatients in nine clinics at the Montreal Children's Hospital. Three measures of psychosocial functioning administered before and after the intervention were the basis for assessing its efficacy. The measures included the behavior problems profile of the Achenbach Child Behavior Checklist, the Personal Adjustment and Role Skills, completed by the parents, and two versions of the Self-Perception Profile (Harter) for children aged 4 to 7 years and 8 to 16 years. Results. Differences between groups were examined both categorically and quantitatively. In the former, the percent of children with clinical scores (those above or below a cut-off indicative of maladjustment) at baseline and postintervention were compared. In the latter, the mean scores at the end of the trial were analyzed using analysis of covariance with the baseline scores as covariates. Statistically significant positive differences were found in the domain of anxiety/depression on the Personal Adjustment and Role Skills, and in the areas of scholastic competence, behavior, and global self-worth on the Harter. Conclusion. The results indicate that this intervention helps children with chronic disorders by preventing or reducing maladjustment. Most university-prepared nurses already have the basic skills required to achieve these results; only a modest investment in reorientation may be needed. Thus, other pediatric centers should be able to replicate these findings and thereby take a major step toward improving the lives of children with chronic disorders. Pediatrics 1994,94:70-75, chronic physical disorders, randomized clinical trial, nursing intervention, psychosocial adjustment.

Children with chronic physical illness are more likely to develop psychological and social problems, which sometimes persist into adulthood. It is not clear whether interventions or treatment programs can improve these complications of chronic physical illness in childhood. The Pediatric Home Care program, also referred to as the Pediatric Outreach Program, was designed to provide medical and psychosocial care and community-based services to chronically ill children. The program was implemented in 1970 and staffed by pediatricians, pediatric nurses, and a social worker, who provide care in the home, office, hospital, school, or community. The program provides the child and family with information about the chronic condition and with training in self-care skills, and consists of both hospital-based and outpatient services. The long-term effects of this pediatric home care program were assessed four and a half to five years after the initiation of the program. Sixty-eight percent of the patients who started with the program were available for follow-up. The program was previously shown to reduce psychological problems among chronically ill children at six months and one year after the start of the program. These short-term benefits persisted and were more pronounced at follow-up. These findings show that a family-oriented program which combines medical and psychosocial care can provide long-term benefits for the mental health of children with chronic physical illness. (Consumer Summary produced by Reliance Medical Information, Inc.)

The Pediatric Home Care (PHC) program is a treatment program that provides medical and psychosocial care and community-based services to chronically ill children. The program was started in 1970 and is staffed by pediatricians, pediatric nurses, and a social worker, who can provide care in the home, office, hospital, school, or community. The program supplies the child and family with information about the chronic condition and with training in self-care skills, and coordinates health services and social and community resources. The mental health benefits of the PHC program were evaluated at six months and one year after its implementation. The results were compared with those of a standard care program, which consisted of services provided by a university-affiliated hospital, its clinic system, and related community services. The PHC program resulted in greater improvement in the child's psychological adjustment, and in the mother's psychiatric symptoms and satisfaction with care as compared with the standard care program. However, the effects of chronic illness on the family and child's functional condition were similar for all patients. The differences in benefit gained from the PHC program were assessed in various subgroups of patients. The patients who benefited most from the PHC program were those with mild chronic illness, but with low coping resources, such as social, educational, financial, and personal support. In cases where the chronic illness was mild and coping resources were ample, the patient benefited more from standard care than from PHC. Results varied among patients with more severe chronic illness. These findings suggest that patients with immense needs may not derive the greatest benefit from intervention programs. Medical and social factors should be taken into consideration when planning the distribution of resources. (Consumer Summary produced by Reliance Medical Information, Inc.)

To address the problem of loneliness and social support in mothers of chronically ill children, we interviewed 90 mothers, among them 33 whose children suffered from a chronic life-threatening disease and 57 whose children had a chronic illness. In addition, we conducted home interviews with a control group of 92 mothers of healthy children. In responding to questions on the revised UCLA Loneliness Scale and the Norbeck Social Support Questionnaire, the mothers of children with either chronic life-threatening or chronic illness revealed higher loneliness than the mothers of healthy children. Larger social networks and perceived greater support was reported by mothers whose children had a chronic life-threatening disease. In this group, no significant relationship was found between the variables of loneliness and social support; whereas, in the group with chronically ill children, and in the controls, a significant inverse relationship between the two variables was noted. Mothers of children with chronic life-threatening diseases may become subject to higher existential loneliness.

The study compared the different patterns of stress reported by mothers of children with either a chronic physical illness (cystic fibrosis), a chronic psychological disorder (autism), and children without a physical or psychological disorder. Twenty-four mothers from each of these three groups completed the Questionnaire on Resources and Stress Short Form (Holroyd & Guthrie, 1986). Each clinical group exhibited different patterns of stressful response consistent with the nature of the disorder and the requirements of care imposed on the families. Autism was found to contribute significantly more to family stress than did cystic fibrosis. The number of children in the family was not a significant variable. Implications for the development of family intervention programs are discussed.

Children and adolescents with chronic illnesses may have an increased risk of developing psychosocial problems. Chronic illnesses that affect children include spina bifida, heart disorders, HIV infection, diabetes, cystic fibrosis, asthma and arthritis. Chronically ill children and adolescents may require home health care services or hospitalization for prolonged periods of time. Their symptoms or treatments may interfere with activities such as school, recreation and work. Psychosocial problems are more common among children and adolescents with chronic illnesses than among those without. A chronic illness increases psychological stress in both affected children and their families. Despite an extraordinary ability to cope, some chronically ill young people may develop emotional or behavioral problems. Pediatricians should be aware of potential psychosocial problems when treating chronically ill children or adolescents. They should also try to provide support to those who are in need.

Because of rising health care costs, the appropriate allocation of health resources is a major concern. In addition to cost-effectiveness, usually defined as total cost divided by the number of persons who benefit, program effectiveness is also a concern of medical research and practice. Program effectiveness is defined as the actual number of people who benefit from a program divided by the estimated number of persons who could benefit. Program effectiveness can be assessed by determining whether the intervention or treatment can be performed at all, whether the intervention results in desired outcome, and the most and least likely conditions under which the desired outcome is achieved. A number of studies have examined the program effectiveness of the Pediatric Home Care (PHC) program, which was established in 1970 to provide psychosocial and medical support to chronically ill children and their families. The PHC program was shown to be successful even under the most adverse conditions. The PHC program improved family satisfaction with care, psychological adjustment of the child, and psychiatric symptoms of the mother, but did not influence the impact of disease on the family or functional status of the child. A study by Jessop and Stein in the September 1991 issue of Pediatrics assessed the conditions under which the PHC program would most and least likely achieve a desired outcome. Patients who benefited most from PHC were those with mild chronic illness but with low coping resources, such as social, educational, financial, and personal support. Patients with mild chronic illness but ample coping resources benefited more from standard care, which consisted of services provided by a university-affiliated hospital, its clinic system, and related community services. The PHC program was of little or no benefit for families with low coping resources and more severe chronic illness, possibly due to limitations of specific interventions. These findings help to screen potential program participants and show that interventions should be applied where they are most beneficial. However, when determining potential program participants, families who are not likely to benefit from intervention in general must be distinguished from families who would not benefit from a specific intervention. (Consumer Summary produced by Reliance Medical Information, Inc.)