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.     

Siblings of children with a chronic illness: a meta-analysis

OBJECTIVE: To review the literature pertaining to the siblings of children with a chronic illness. METHODS: Fifty-one published studies and 103 effect sizes were identified and examined through meta-analysis. RESULTS: We found (1) a modest, negative effect size statistic existed for siblings of children with a chronic illness relative to comparison participants or normative data; (2) heterogeneity existed for those effect sizes; (3) parent reports were more negative than child self-reports; (4) psychological functioning (i.e., depression, anxiety), peer activities, and cognitive development scores were lower for siblings of children with a chronic illness compared to controls; and (5) a cluster of chronic illnesses with daily treatment regimes was associated with negative effect statistics compared to chronic illnesses that did not affect daily functioning. CONCLUSIONS: More methodologically sound studies investigating the psychological functioning of siblings of children with a chronic illness are needed. Clinicians need to know that siblings of children with a chronic illness are at risk for negative psychological effects. Intervention programs for the siblings and families of children with a chronic illness should be developed.     

Psychosocial adjustment in children with kidney disease

Objective: To examine family environment, levels of parentingstress, and child behavior problems in children with one ofthree kidney diseases compared to healthy children and to examinepredictors of psychological distress in the full sample. Method: Parents of children with steroid sensitive nephroticsyndrome, chronic renal insufficiency, or kidney transplant (n = 41) were compared to 34 healthy children of similar demographic characteristics. Results: Mean scores on family functioning, parenting stress,and child behavior were within normal limits. Family environment variables significantly predicted child behavior and parentingstress for parents of ill and healthy children. Qualitativeresponses provided insight into developmentally specific stressorsand intervention needs in the illness groups. Conclusions: These data indicate that long-term survivors ofkidney disease function similarly to demographically matchedpeers and that the family environment may buffer stress causedby illness. Specific concerns raised by parents in the kidneydisease groups indicate the need to appropriately assess andintervene with this understudied population.     

The impact of illness‐related shame on psychological health and social relationships: Testing a mediational model in students with chronic illness

This study explores the impact of illness‐related shame on the quality of social relationships and psychological health in chronic patients. We aimed to examine the roles of fear of receiving compassion from others and experiential avoidance as potential mediators of this relationship. Although some studies have demonstrated the negative impact of chronic illness‐related shame on psychological functioning, the mechanisms that may underlie this link remain understudied. The sample was comprised by 115 college students, which had been diagnosed with at least 1 chronic illness. Participants completed self‐report measures on an online platform. This study's design was cross‐sectional. A path analysis was conducted using structural equation modelling. Results showed that the impact of illness‐related shame on both psychological health (R² = .45) and the quality of social relationships (R² = .33) was fully accounted by fear of compassion from others and experiential avoidance. This model revealed an excellent fit. Fear of receiving compassion from others was the main mediator of the illness‐related shame link with the quality of social relationships (β = ?.22). The main mediator of the association between shame‐related chronic illness and psychological health was experiential avoidance (β = ?.21).This study shed light on possible psychological mechanisms linking feelings of shame associated with having a chronic condition and impaired social relationships and mental health. On one hand, resisting feelings of compassion and care from others and, on the other hand, avoiding difficult internal experiences and situations that might trigger them seem to underlie the impact of shame on psychological and social functioning in chronic patients.     

The relationship of parental overprotection, perceived child vulnerability, and parenting stress to uncertainty in youth with chronic illness

OBJECTIVE: To examine the relationship of parent-reported overprotection (OP), perceived child vulnerability (PCV), and parenting stress (PS) to youth-reported illness uncertainty, and to explore potential developmental differences. METHOD: Eighty-two children and 82 adolescents (n = 164) diagnosed with Type 1 diabetes mellitus (DM1) or asthma, completed a measure of illness uncertainty, while their parents completed measures of OP, PCV, and PS. RESULTS: After controlling for demographic and illness parameters, both PCV and PS significantly predicted youth illness uncertainty in the combined sample. Within the child group, only PS significantly predicted illness uncertainty, whereas only PCV significantly predicted uncertainty for adolescents. CONCLUSION: Specific parenting variables are associated with youth-reported illness uncertainty; however, their relationship varies according to developmental level. Although OP has been identified as a predictor of child psychological outcomes in other studies, it does not appear to be associated with illness uncertainty in youth with DM1 or asthma.     

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.     

Sleep disruptions in parents of children and adolescents with chronic illnesses: prevalence, causes, and consequences

OBJECTIVE: Provide a comprehensive review of the existing literature on the prevalence, causes, and consequences of sleep disruptions in parents of youth with chronic illnesses. METHODS: A comprehensive literature search of PsychInfo, MEDLINE, and CINAHL for articles related to sleep in parents of youth with chronic illnesses yielded 59 potential articles, with 19 meeting inclusion criteria. RESULTS: Parents of children with eczema were the most commonly studied group. The prevalence of sleep disruptions was 15-86%. Potential causes of parent sleep disruptions included nighttime caregiving, monitoring of the child's illness, and stress related to the child's illness. Consequences included poor sleep quality, depression, and anxiety. CONCLUSIONS: Parents of youth with chronic illnesses experience sleep disruptions, providing a potential mechanism to explain elevated rates of negative daytime functioning found in previous studies. To provide interventions and support for these parents, additional research is needed to address the limitations of the existing literature.     

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.     

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.     

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: the relationship between chronic illness and identification and management of psychosocial problems in pediatric primary care

OBJECTIVE: To compare identification, management, and barriers to treatment for psychosocial concerns in children with and without a chronic illness. METHODS: Using data from the Child Behavior Study (CBS), provider rates of identification, treatment, and reports of barriers to treatment were compared in children with and without a chronic illness. Of the 21,065 children ranging in age from 4 to 15 years, 808 children were identified with a chronic illness and were matched on eight demographic variables with 763 healthy children. RESULTS: Providers identified psychosocial concerns in significantly more children with a chronic illness (36.8%) than healthy children (20.2%). Among children with psychosocial concerns, rates of identification, treatment, and barriers to treatment did not differ across the two groups. CONCLUSIONS: Chronic illness did not present more barriers to the management of psychosocial concerns. Increased rates of identification and treatment of psychosocial concerns require attention to general barriers to treatment and screening.     

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.     

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.     

Interactions between children with juvenile rheumatoid arthritis and their mothers

OBJECTIVE: To determine the degree to which mothers of children with juvenile rheumatoid arthritis (JRA) show an overprotective or highly controlling interaction style. METHOD: We videotaped 84 mother-child pairs (42 JRA and 42 healthy, ages 6 to 13) while working on a collaborative problem-solving task. Based on physical therapy evaluations, children in the JRA group were assigned to "more severe" (n = 19) and "milder" (n = 22) arthritis subgroups. RESULTS: Results showed numerous differences between mothers of children with more severe arthritis and the other mothers (no differences between the milder arthritis and healthy comparison groups were found). Compared to mothers in the other two groups, mothers of children with more severe arthritis were more directive of their children's behavior during the task, showing higher rates of structure and rule setting, general clues, and prompting the child for an answer. DISCUSSION: Sequential analyses showed that mothers in the more severe group appeared to treat the task in a more evaluative manner, being more likely than other mothers to respond to correct answers with positive feedback and to incorrect answers with structure and rule setting. Mothers in the other groups were more likely to respond to both correct and incorrect answers with specific clues. CONCLUSIONS: We discuss how these differences in interactional style might impact the social development of children with JRA.     

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.     

Assessing chronic illness representations: The implicit models of illness questionnaire

Data were collected from three samples using the Implicit Models of Illness Questionnaire (IMIQ) to assess illness representations as described in the self-regulation model of common sense illness representations. A factor structure was identified which displayed some similarities to the common sense model. This structure was used to examine illness representations of students and patients concerning three illnesses—rheumatoid arthritis (RA), multiple sclerosis (MS), and human immunodeficiency virus (HIV). Representations differed across illnesses and respondent status (patient vs. student). Students rate individuals as having more personal responsibility for RA or MS than did patients; moreover, the difference between patient/student ratings was greater with respect to MS than it was for RA. Patients were more aware of the variable nature of RA and MS symptoms than were students. This study demonstrates the value of the IMIQ as a tool for assessing illness cognitions and suggests that illness representations differ as a function of personal experience and personal relevance.The study presented here was supported by an Arthritis Foundation Traineeship Grant to the first author and grants from the National Institute of Health (AM36679) and the Professional Staff Congress—CUNY to Tracey A. Revenson and by a grant to the first author from Fordham University.     

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.     

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.     

Parental management of fear in chronically ill and healthy children

This study was undertaken to determine the impact of children's health status on parental management of fear and avoidance, as well as the relationship between parenting strategies and children's fear and anxiety levels. Thirty-one children with a chronic life-threatening illness, 30 children with chronic non-life-threatening conditions, and 28 healthy children, and their mothers, were studied. Children's health status, by diagnosis, was not a significant determinant of maternal fear-management strategies. For chronically ill children, clinical health status, in terms of illness course, prognosis, physical impairment, and time since diagnosis were related to maternal parenting strategies and to children's levels of medically related fears. For the sample as a whole, maternal fear-management strategies were related to child sex, socioeconomic status, and mothers' trait anxiety. These results are discussed in terms the interactive effects of child characteristics, health status, fear/anxiety, and parenting strategies.