Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review

OBJECTIVE: To review studies of psychological adjustment among children and adolescents with chronic arthritis to determine whether they are at more risk for development of adjustment problems than controls. METHODS: We used meta-analytic techniques to review 21 studies reporting overall adjustment problems, internalizing symptoms, externalizing symptoms, or self-concept among youths with arthritis. RESULTS: Youths with arthritis displayed increased risk for overall adjustment problems and internalizing symptoms, but not for externalizing symptoms or poor self-concept. Risk was greater in studies making comparisons to study controls rather than to norms and in studies including mixed disease samples (arthritis plus other rheumatic diseases) rather than samples of youths with arthritis only. CONCLUSIONS: Results suggest the importance of assessing for internalizing problems among youths with chronic arthritis. Future research may benefit from inclusion of child self-report of adjustment problems, diagnostic specificity in reporting results, and use of adjustment measures without somatic items.     

Psychological adjustment to pediatric physical disorders: a meta-analytic review.

Reviewed 87 studies of children's adjustment to physical disorders in a meta-analysis. Results indicate (a) children with such disorders show increased risk for overall adjustment problems, internalizing and externalizing symptoms; (b) risk was greatest in studies making comparisons to norms rather than to study controls; (c) risk varied by informant (teacher, mental health professional, parent), and by degree of matching with controls; (d) the self-concept of children with physical disorders across all studies appears significant for studies with careful matching or comparisons with norms; (e) there are interdisease differences, but the number of studies within individual disorders, with a few exceptions, are quite small. The need for improved methodology is discussed.     

Adjustment to chronic arthritis of childhood: the roles of illness-related stress and attitude toward illness

OBJECTIVE: To examine the relationship of psychosocial stress and attitude toward illness to psychological adjustment among youth with chronic arthritis. METHODS: Seventy-five youths with chronic arthritis aged 8-18 years were administered a semi-structured interview assessing illness-related and nonillness-related stressors in important life domains. Children also completed measures of attitude toward illness, depressive symptoms, and anxiety. Parents completed a measure of child psychosocial adjustment. RESULTS: Higher levels of illness-related and nonillness-related stress were associated with higher levels of anxiety and depressive symptoms and parent-reported adjustment problems, while a more positive attitude toward illness was associated with lower levels of anxiety and depressive symptoms. Attitude toward illness moderated the relationship between stress and depressive symptoms. CONCLUSIONS: Results suggest the importance of assessing life stress and attitude toward illness among youth with arthritis and developing interventions to help children cope with arthritis-related stressors and promote a more positive attitude toward illness.     

Psychological adjustment of children with asthma: effects of illness severity and recent stressful life events.

Although children with chronic illness are at greater risk for decreased psychological adjustment than physically healthy children, little is known about the factors that lead to increased risk. Eighty-one children with asthma between the ages of 6 and 14 years and their parents participated in a study to determine the relative contribution of background variables (age, gender, and socioeconomic status), recent stressful life events, and illness severity to psychological adaptation. Overall 11.5% of the children had CBCL Total Behavior Problems scores above the 98th percentile. Multiple regression revealed that lower SES, negative life change, and high illness severity were predictive of less optimal psychological adjustment. The results highlight the need for interventions to improve coping with both disease and nondisease issues.     

Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis

OBJECTIVE: Findings in the literature are inconsistent on the impact of congenital heart disease (CHD) on the psychological and cognitive functioning of children and adolescents. The aim of the present study was to systematically review this empirical body of literature. METHODS: We conducted a meta-analysis to review studies on behavior problems and cognitive functioning in CHD. RESULTS: Only older children and adolescents with CHD displayed an increased risk of overall, internalizing, and to a lesser extent externalizing behavior problems. In addition, patients with severe CHD exhibited lower cognitive functioning than patients with less severe CHD, specifically with respect to performance intelligence. Moreover, decreased cognitive functioning remained relatively stable across different age groups. CONCLUSIONS: Children with severe heart disease may benefit from interventions specifically targeting perceptual organizational abilities, such as visual-spatial abilities. Moreover, older children and adolescents with CHD may benefit from psychological interventions reducing anxiety symptoms and depression.     

Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability

OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. RESULTS: Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.     

Brief report: psychological symptoms in healthy female siblings of adolescents with and without chronic conditions

OBJECTIVE: To examine the psychological impact of having a sibling with a chronic condition on healthy adolescent females and to explore the potential moderating role of birth order on this relationship. METHOD: We compared selected Brief Symptom Index subscales (anxiety, depression, interpersonal sensitivity, hostility) and global severity scores (GSI) in two groups of healthy, inner-city female adolescents matched for sibling age, gender, birth order, and age spacing: 34 sisters of males and females ages 13-19 years with chronic health conditions (ILLSIBS) and 34 sisters of males and females in the same age range without conditions (WELLSIBS). RESULTS: ILLSIBS generally had more symptoms than WELLSIBS. MANOVA yielded significant three-way interactions of sibling illness status, birth order, and gender for the anxiety, hostility, and GSI. A similar pattern was nonsignificant for the two other subscales. Among younger sisters in general and among older sisters of males only, ILLSIBS had higher scores; however, ILLSIBS who were older sisters of females did not differ significantly in symptom levels from the comparable group of WELLSIBS. CONCLUSIONS: Psychological symptoms in sisters of inner-city, male and female adolescents are related to sibling health status. However, the combination of sibling gender and birth order may modify this relationship and should be considered when evaluating psychological risk or designing interventions.     

Single parents of children with chronic illness: an understudied phenomenon

OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. RESULTS: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. CONCLUSIONS: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.     

Brief report: Parental perceptions of child vulnerability in children with chronic illness

OBJECTIVE: To determine the extent to which parental perceptions of child vulnerability predict school and social adjustment in children with chronic illness. METHODS: Sixty-nine child-parent dyads were recruited from pediatric rheumatology and pulmonary clinics. Parents completed a self-report measure of parental perceptions of child vulnerability. Children completed measures of social adjustment. Parents also provided written permission to obtain school attendance records. Physicians provided a global assessment of children's disease severity. RESULTS: Increased parental perceptions of child vulnerability were related to increased social anxiety in children, even after controlling for child age and disease severity. Lower levels of parental education related to both increased perceptions of child vulnerability and increased school absences. CONCLUSIONS: Health providers should assess parental beliefs and parenting practices in assessing the adjustment of children with chronic illness. Moreover, interventions aimed at enhancing child adjustment to chronic illness might best target parents as well as children.     

Review of the literature: integrating psychoneuroimmunology into pediatric chronic illness interventions

OBJECTIVE: Provide an orientation to psychoneuroimmunology, a rationale for including assessments of immune function in intervention studies of pediatric chronic illness, review the current literature, and provide recommendations for future research. METHODS: Using electronic searches and previous reviews, selected and reviewed published studies in which immunological changes related to psychological interventions were assessed in pediatric samples. RESULTS: Eight studies were identified and included in the review. These utilized a range of interventions (e.g., disclosure and hypnosis) and included a variety of pediatric samples (e.g., those with asthma, HIV infection, or lupus). CONCLUSIONS: Results suggest that psychological intervention can influence immune function in pediatric samples. Recommendations for advancing our knowledge by studying populations for whom the immune system plays an active role in disease pathophysiology, measuring disease-relevant immune mediators, studying pediatric patients under times of stress, and focusing on interventions aimed at altering the stress system are provided.     

Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness

OBJECTIVE: The role of fathers in pediatric disease management and its associations with family functioning have rarely been the focus of empirical study. In this study, we used the Dads Active Disease Support scale (DADS), a measure of the amount and helpfulness of paternal involvement in pediatric disease management, to explore the association between father involvement and other aspects of family functioning. METHOD: A sample of 190 heterosexual couples completed the DADS and measures of maternal, marital, and family functioning. RESULTS: Maternal report of higher ratings on DADS Helpfulness scale was associated with fewer self-reported maternal psychiatric symptoms and less perceived impact of the disease on family functioning. Both mothers' and fathers' reports indicated that more paternal involvement was related to more favorable outcomes in marital satisfaction and family functioning. CONCLUSIONS: More paternal involvement in disease management was associated with healthier maternal, marital, and family functioning. Longitudinal studies are needed to determine whether paternal involvement is likely to be a fruitful target for psychological intervention.     

Living with a chronic illness: a measure of social functioning for children and adolescents

OBJECTIVE: To describe the development and initial psychometric evaluation of a measure of social functioning in children and adolescents with chronic medical conditions, Living with a Chronic Illness (LCI), designed to distinguish social difficulties related to the illness from those social difficulties associated with other factors (e.g., limited income). METHODS: Parents (n = 108) and youths (n = 115) completed the LCI, along with other psychological measures (e.g., Youth Self-Report). Teachers completed the Teacher Report Form and provided grade and absence data. Health care utilization data were obtained from medical charts. RESULTS: Statistical analyses supported the internal consistency and initial validity of LCI scores. Correlational results strongly point to the distinction made between illness-related and non-illness-related social difficulties and suggest that the LCI has some relation to existing measures (e.g., Child Behavior Checklist), while still providing a unique perspective on children's social functioning. Univariate and regression analyses revealed significant relations between LCI scores and health care utilization. CONCLUSIONS: These findings support the initial psychometric properties and clinical utility of the LCI scores. We discuss strengths and limitations of this study, as well as potential clinical applications for the LCI questionnaire.     

Psychological functioning of children with insulin-dependent diabetes mellitus: a longitudinal study

Assessed school-age youth repeatedly over the first 6 years of their insulin-dependent diabetes mellitus (IDDM) to determine self-perceived psychological adjustment. After the first year of IDDM, Ss exhibited a mild increase in depressive symptoms. Anxiety decreased for boys but increased for girls over the duration of IDDM. In contrast, self-esteem remained stable regardless of rehospitalizations or degree of metabolic control. Ss' adjustment shortly after IDDM onset, as reflected by levels of depression, anxiety, and self-esteem, were predictors of later adjustment. In general, Ss found the implications of IDDM more upsetting and the regimen more difficult with time, and girls were more upset by their illness than boys. The degree to which children were upset by the implications and management of IDDM varied as a function of their anxiety and depression.     

Illness beliefs and self-management in children and young people with chronic illness: a systematic review

To review the extent to which illness representations, based on Leventhal's Common Sense Model, relate to self-management in children and young people with chronic physical health conditions. A systematic literature review was carried out to identify relevant studies and each included paper was assessed for risk of bias. Fifteen papers met criteria for inclusion within the review. The majority of studies were cross-sectional, and small sample sizes for some studies made it difficult to generalise findings. The method of measuring both illness representations and outcomes varied. Timeline, identity, control and consequences beliefs were the most frequently assessed domains of illness representations included within the studies. While there is variability, there are indications that control beliefs, specifically treatment control beliefs, are more consistently and strongly associated with self-management than other representation domains. Control beliefs should be targeted for intervention in studies trying to improve adolescent self-management. In addition, the relationship between illness representations and self-management needs to be considered within both developmental and systemic contexts. It is likely that the variation in self-management will be more fully explained in future research that explores the combined effects of individual representations and the influence of wider contexts.     

Couples coping with chronic illness: Women with rheumatoid arthritis and their healthy husbands

Effects of a chronic disease, rheumatoid arthritis, upon the psychological adjustment of 103 women and their healthy husbands were examined. Husbands completed scales assessing perceived vulnerability to illness and coping efficacy, burden of caring for their wives, and level of psychological adjustment. Wives completed the Ways of Coping scale, rated attributions about arthritis, and rated criticalness and supportiveness of their husbands. Husbands were also interviewed and their responses coded for critical remarks about the wife. The same variables were used to predict each partner's adjustment in order to compare factors associated with each. Hierarchical regression indicated that negative marital interaction surrounding the wife's illness was a determinant of both partners' psychological adjustment. Apart from this variable, different factors predicted husbands' and wives' mental health. Husbands were most affected by their own perceived vulnerability to disease and coping inefficacy. Wives were most affected by pain severity and how they coped with arthritis.     

Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability

OBJECTIVE: To evaluate an integrated group intervention for siblings and parents designed to increase sibling understanding of and adjustment to chronic illness and developmental disability (CI/DD). METHODS: Fifty-four well siblings (ages 8-13 years) and their parents were recruited through hospital-based and community agencies serving children with CI/DD. Measures of sibling knowledge, sibling adjustment to the disorder, sibling connectedness, and sibling global behavioral functioning were collected before and after the intervention. A subsample of 20 families completed a 3-month follow-up to assess maintenance of results. RESULTS: Sibling knowledge of the child's disorder and sibling connectedness increased, while sibling reports of negative adjustment to the disorder and parent reports of sibling global behavioral functioning decreased significantly from pre- to posttreatment for both boys and girls, regardless of the type of diagnostic condition. Improvements in sibling knowledge, connectedness, and behavioral problems maintained at 3-month follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support the future conduct of more controlled evaluation of the integrated sibling and parent group intervention model to improve sibling knowledge of and adjustment to CI/DD.     

Childhood chronic illness as a family stressor.

Investigated the impact of childhood chronic illness within a family context. We interviewed 30 mothers of 6- to 14-year-old children with asthma or diabetes and 30 mothers of healthy children of the same age and sex. Family functioning, extrafamilial social support available to mothers, and child life stress events were examined in relation to the children's psychological adjustment and illness events. The mothers of asthmatic children reported a greater number of internalizing behavior problems in their children, perceived their own social support as less adequate, and reported a greater number of stressful events. Regression analyses demonstrated that family functioning, maternal social support, and chronic illness were significantly related to the psychological adjustment of the child. The importance of family functioning and resources available to the family, such as social support, are discussed as protective influences in coping with childhood chronic illness.     

Effects of written emotional disclosure on caregivers of children and adolescents with chronic illness

OBJECTIVE: Tested feasibility of a written emotional disclosure intervention with caregivers of youths with chronic illness and its effects on measures of mood, physical symptoms, health-related quality of life, distress, and caregiver appraisal of stress and efficacy. METHODS: Measures were administered prior to and immediately after writing and 4 months later. Experimental group (n = 29) wrote about traumas and stressors while the control group (n = 25) wrote about summer activities for 20 minutes on three different days. RESULTS: Consistent with hypotheses, the experimental group experienced less positive affect, F(1, 54) = 4.68, p <.05, and more negative affect, F(1, 54) = 7.92, p <.01, and physical symptoms, F(1, 54) = 4.30, p <.05, immediately following writing than the control group. There were no significant Group x Time interactions on long-term mood, distress, health-related quality of life, or caregiver appraisal. Contrary to hypotheses, the control group had more vitality over time, F(1, 53) = 21.29, p <.001, than the experimental group. CONCLUSIONS: Recommendations include modifying the procedures to attain more control in applied settings and identifying specific processes that contribute to the efficacy of written emotional disclosure on well-being.     

Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability

A structural equation model (SEM) examined interrelationships among psychosocial variables known to affect the health and development of well siblings and parents when a child with a chronic illness or disability is a member of the family. Using dyads of 252 well children and parents, socioeconomic status (SES) and family cohesion were associated with the parent-reported behavior of the well sibling. SES also influenced the mood of the mother that in turn influenced family cohesion. The well sibling's knowledge about the illness of the brother or sister, attitude toward the illness, mood, self-esteem, and feelings of social support were interrelated and related to the behavior of the well sibling. The SEM suggests that interventions may be directed at several points in these interactions including boosting knowledge levels of the well sibling, improving family cohesion, and assuring adequate income support to the family through income transfers or in-kind services.