Impact of the Repressive Personality Style on the Measurement of Psychological Distress in Children and Adolescents with Chronic Illness: An Example from Hemophilia

Described the impact of the repressive personality style onthe measurement of psychological distress among children andadolescents with hemophilia. Two groups were compared on parentand self-report measures of anxiety and depression: a nondefensivegroup (n = 34) with low distress; and a highly defensive group(n = 26) who were identified as having a repressive personalitystyle and who also reported low distress. Consistent with hypotheses,highly defensive children reported comparable levels of anxietyand lower levels of depression than nondefensive children. Onthe other hand, mothers of highly defensive children and adolescentsdescribed them as more distressed than mothers of nondefensive(self-assured) children. Findings underscore the importanceof including data from other informants, (e.g., parents, teachers,or peers) to avoid misleading findings based on self-reportsof anxiety and depression obtained from highly defensive children.     

Psychological adjustment in children and families living with HIV

OBJECTIVE: To assess psychological adjustment in children living with human immunodeficiency virus (HIV) and their primary caregivers. METHODS: The study protocol included use of standardized questionnaires to assess emotional and behavioral health of 57 children and 54 caregivers (Phase 1). Positive screening led to standardized interviews to assess current psychiatric diagnoses (Phase 2). RESULTS: Of the 16 children who entered Phase 2, 6 (38%) met the criteria for a psychiatric diagnosis. Of the 15 adults who met the screening criteria, 13 completed a computerized psychiatric interview and all 13 (100%) met the criteria for a psychiatric diagnosis. CONCLUSIONS: While important mental health needs were identified in families with HIV, the majority of families did not exhibit mental health disorders. These results might reflect the substantial psychosocial resilience of these families. Further study is needed to determine to what extent the mental health needs of children and their caregivers are being met. In addition, identification of protective factors in resilience and coping in families living with a chronic illness is warranted.     

Declining immune function in children and adolescents with hemophilia and HIV infection: effects on neuropsychological performance. Hemophilia Growth and Development Study

OBJECTIVE: To determine whether declines in immune functioning are associated with changes in neuropsychological performance in children and adolescents with hemophilia who are infected with the human immunodeficiency virus (HIV). METHODS: Participants were 333 males with hemophilia, ages 6-19 years at entry. A baseline and four annual neuropsychological evaluations were given. A longitudinal growth curves analysis of data was performed to detect changes associated with declining immune function. The cohort was stratified into four groups: (1) HIV- (n = 126); (2) HIV+, average of first two and last two CD4 counts > or = 200, (n = 106; High CD4 group); (3) HIV+, average first two counts > or = 200, average last two counts < 200 (n = 41; CD4 Drop group); and (4) HIV+, average first two and last two counts < 200 (n = 60; Low CD4 group). RESULTS: There were significant differences among the four groups over time in nonverbal intelligence, perceptual/performance skills, nonverbal memory, academic achievement, and language. The Low CD4 group consistently showed the greatest decrement in performance. On measures showing a practice effect for repeated measurements, the Low CD4 group participants' scores remained stable over time, suggesting opposing effects of practice and HIV-related declines. Lowered academic performance relative to IQ was found in all groups. CONCLUSIONS: Declines in neuropsychological functioning are directly related to declines in immune functioning in HIV+ children, adolescents, and young adults with hemophilia. Hemophilia itself may be a risk factor for academic underachievement.     

HIV-associated changes in adaptive, emotional, and behavioral functioning in children and adolescents with hemophilia: results from the Hemophilia Growth and Development Study

OBJECTIVE: To assess changes in adaptive, emotional, and behavioral functioning over four years in children and adolescents with hemophilia and with or without HIV infection and to evaluate the relationship of these changes to immune status. METHODS: Participants were 277 HIV-seropositive and 126 HIV-seronegative boys with hemophilia. Participants with HIV infection were divided into three groups based on trajectory of immune functioning (CD4+ cell counts) over the course of the study. Caregivers completed the Vineland Adaptive Behavior Scales and Pediatric Behavior Scale (PBS). RESULTS: Results showed declining Vineland Communication scores for participants with consistently poor immune functioning. These participants also started with more PBS Attention Deficit and Deviation symptoms, which then decreased more sharply than for other groups. Low CD4+ counts were consistently associated with more Health and Depression-Anxiety symptoms on the PBS. However, with few exceptions, group means remained within normal limits. CONCLUSIONS: According to their caregivers, boys with hemophilia and HIV infection showed considerable resilience with regard to adaptive behavior and emotional and behavioral problems. However, over time changes occurred in these areas that appear to be related to immune functioning.     

Hemophilia Growth and Development Study: Baseline Neurodevelopmental Findings

Reported baseline findings from the neurological assessmentcomponent of the Hemophilia Growth and Development Study (HGDS).HIV-positive (HIV+ n = 207) and HIV-negative (HIV–; n= 126) young males with hemophilia ages 6 to 18 years, wereenrolled in a prospective study of their growth and development.At baseline, HIV+ and HIV– subjects were not significantlydifferent in test performance. The number of subjects exhibitingbelow-average performance in three or more areas assessed wasabout 25% overall. For both groups, mean test scores were withinthe average range. Academic and adaptive skills were lower thanexpected based on mean IQ scores, and more behavioral/emotionalproblems than expected were reported by parents. Absolute CD₄cell counts per mm³ were not related to neuropsychological performanceat baseline. Results suggest that the subjects with HIV wererelatively free of HIV-related neuropsychological impairmentat baseline and that observed differences from a general populationreflect effects of hemophilia as a chronic illness     

Psychological Adjustment of Mothers of Children and Adolescents with Sickle Cell Disease: The Role of Stress, Coping Methods, and Family Functioning

Assessed the psychological adjustment of 78 mothers of childrenand adolescents (7–17 years of age) with sickle cell disease.Support was provided for a transactional stress and coping modelin delineating the processes associated with maternal adjustment.In particular, poor maternal adjustment was associated withuse of palliative coping methods and high levels of stress relatedto daily hassles. Variables of the model accounted for 55% ofthe variance in maternal psychological distress.     

Relationship of Parental Psychological Distress to Consequences of Chronic Health Conditions in Children

Objective: To assess whether parents' self-reported psychologicaldistress was related to consequences of chronic health conditionsin their children as reflected by three domains: functionallimitations, reliance on compensatory mechanisms, and serviceuse above routine care. Methods: We used telephone survey data on children's healthand parents' psychiatric symptoms from an inner-city communitysample (n = 380) and a population-based national sample (n =398). Results: In the national sample, parents of children with functionallimitations were more distressed than parents whose childrenexperienced other types of condition consequences or none. Inthe inner-city sample, presence of a health condition was associatedwith greater parental distress, but there were no significanteffects by consequence type. Conclusions: Research needs to determine if parents of childrenwith functional limitations represent a high-risk group andto identify the factors associated with their elevated distress.     

Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

Academic, Behavioral, and Social Adaptation of Boys with Hemophilia/HIV Disease

Examined the intelligence, academic achievement, behavior, andsocial competency of 37 school-aged boys with hemophilia, 56%with HIV infection. IQ scores fell in the average range, buttotal reading scores were almost 1 standard deviation belowthe mean. Parent and teacher ratings of social functioning andbehavior fell in the normal range. Absenteeism, an average of27 days for the previous school year, was inversely correlatedwith most teacher ratings, indicating that absenteeism may bea significant factor in the academic and social adaptation ofchildren with hemophilia. Overall, boys infected with HIV demonstratedthe same level of academic and behavioral adaptation as thoseuninfected. The need for special education programs and interventionsto enhance competency in the school setting is discussed.     

Misconceptions About AIDS Among Children Who Can Identify the Major Routes of HIV Transmission

Described knowledge about HIV transmission among 1,048 third,fourth, fifth, and sixth graders from a multiethnic urban schooldistrict. Participants answered questions about behaviors leadingto HIV transmission and about mechanisms of transmission. Childrenat all grade levels demonstrated a high level of recognitionof the three primary routes of HIV transmission (through sex,through drug needle sharing, and in utero). However, childrenwho knew about these routes also had many misconceptions aboutthe mechanisms involved in acquiring HIV through these routesand about the ways HIV is not transmitted. Misconceptions decreasedwith grade and socioeconomic status (SES). Although there wereno race/ethnicity differences in knowledge of actual routesand mechanisms of HIV transmission, there were more misconceptionsabout routes and mechanisms of HIV transmission among AfricanAmerican and Asian American children than among white children.     

Self-Blame and Distress Among Women with Newly Diagnosed Breast Cancer

This study examined relations between behavioral and characterological self-blame attributions for breast cancer and psychological distress in the year following a diagnosis. One hundred fifteen women with newly diagnosed breast cancer participated. First, we predicted that both forms of self-blame would be associated with distress shortly after diagnosis (i.e., at 4 months). Second, we predicted that only characterological self-blame would be related to distress at 7 and 12 months post-diagnosis because behavioral self-blame would enhance perceptions of control, thereby protecting against distress. Results supported the first hypothesis; both forms of self-blame were related to symptoms of anxiety and depression at 4 months post-diagnosis. Findings did not support the second hypothesis because both forms of self-blame continued to be related to distress at 7 and 12 months post-diagnosis. Furthermore, perceptions of control did not mediate the self-blame/distress relation. Implications for social cognitive processes in adaptation to breast cancer are discussed.     

Supportive and Negative Responses in the Partner Relationship: Their Association with Psychological Adjustment Among Individuals with Cancer

This study examined the association between positive and negative aspects of spouse responses and psychological adjustment among 15S individuals with cancer. Two contextual variables, gender and disease-related functional impairment, were taken into account when examining the association between spouse responses and patient psychological distress and well-being. Results indicated that negative aspects of close relationships played a comparatively stronger role than positive aspects in their associations with both psychological distress and well-being. For negative spouse responses, patient gender did not moderate the effects of these responses upon psychological outcomes. For positive aspects of spouse support, both gender and functional disability moderated the association between spouse support and psychological outcomes. These findings are integrated with the general literature on positive and negative aspects of close relationships. Implications for clinical interventions are also discussed.     

Maternal Posttraumatic Stress Symptoms and Psychological Burden in Mothers of Korean Children With Anaphylaxis

PurposeAnaphylaxis is a severe allergic reaction that is potentially life-threatening, but post-traumatic stress symptoms (PTSS) in the caregivers of children with anaphylaxis have not been evaluated. This study aimed to investigate the psychological burden on mothers of children with recent anaphylaxis.MethodsA total of 188 children with recent anaphylaxis was recruited from 13 hospitals in Korea. Validated questionnaires, including the Korean versions of the Beck Anxiety Inventory (K-BAI), the Beck Depression Inventory (K-BDI), and the Impact of Event Scale Revised-Korean version (IES-R-K), were used to evaluate maternal anxiety, depression, and PTSS.ResultsThe median ages of children and their mothers were 4 and 36 years, respectively. PTSS (IES-R-K ≥ 25) were identified in 56.9% of mothers, and 57.9% of them showed severe PTSS. The proportions of mothers who had anxiety (K-BAI ≥ 22) and depression (K-BDI ≥ 17) were 18.6% and 33.0%, respectively. Multivariable logistic regression analysis indicated that the patient’s history of asthma (adjusted odds ratio [aOR], 5.46; 95% CI, 1.17–25.59) and the presence of central nervous symptoms (aOR, 3.27; 95% CI, 1.07–9.96) were associated with PTSS. Age of 2 or older (aOR, 2.87; 95% CI, 1.10–7.52) and eggs, milk, or wheat as the cause of anaphylaxis (aOR, 2.87; 95% CI, 1.10–7.52) increased the risk of severe PTSS.ConclusionsThe rate of PTSS among mothers of children with recent anaphylaxis was high at 56.9%. Clinicians who care for pediatric anaphylaxis patients should be aware of the psychological burden on their caregivers.     

The Role of the Family System in HIV Risk Reduction: Youths With Hemophilia and HIV Infection and Their Parents

Objective. To examine the relationship between family communicationand HIV risk reduction behaviors among a multisite sample of125 male youths (ages 12—25) with hemophilia and HIV-infection,as well as their parents. Methods: Participants completed self-report surveys assessingcommunication and attitudes regarding HIV risk reduction interventions;adolescents also provided data about their sexual behaviors. Results: Adolescents with parents who discuss sexual issueswere more likely to report HIV status disclosure to sexual partners.Most parents were supportive of HIV risk reduction interventionsfor their adolescents, but the youths themselves tended to endorseonly interventions that offered opportunities for recreationalactivities and socialization with peers. Conclusions: Findings are discussed in terms of interventionimplications and the need for family systems-based programs.     

Effect of an intervention to reduce procedural pain and distress for children with HIV infection

OBJECTIVE: To evaluate a multicomponent pain management intervention, including cognitive behavioral strategies, for children with human immunodeficiency virus (HIV) infection undergoing routine venipuncture. METHODS: Following a baseline venipuncture, children were exposed to an intervention including preparation, relaxation, distraction, reinforcement, parent involvement, and EMLA (eutectic mixture of local anesthetics) cream, and followed for three additional venipuncture procedures. After each procedure, child distress was rated on the Procedure Behavior Checklist (PBCL), child self-report of pain was obtained using the FACES scale, and parent anxiety was reported on the State Trait Anxiety Inventory-State Scale (STAI). RESULTS: Significant reductions in child distress and pain were found by the second postintervention procedure and maintained at the third. Parent anxiety was significantly reduced by the second postintervention procedure, but many parents chose not to participate in the third postintervention procedure. CONCLUSIONS: With repeated exposure, a multicomponent pain management intervention, including cognitive behavioral strategies and EMLA, appears effective at reducing pain, distress, and parent anxiety for children with HIV.     

The Psychological Adjustment of Enuretic Children: A Comparison of Two Types

Child- and parent-report measures of psychological adjustmentwere compared for children exhibiting two forms of childhoodenuresis: nocturnal vs. nocturnal/diurnal. Results indicatedthat although parents of daytime and nighttime wetters describedtheir children as relatively normal individuals who were notexhibiting signs of psychopathology, nocturnal/diurnal enureticsreported having a below average level of self-esteem that wassignificantly lower than that reported by nocturnal enuretics.In addition, parents of nocturnal/diurnal enuretics describedtheir child's wetting as more of a nuisance than did parentsof nocturnal enuretics.     

Perceived Role Restriction and Adjustment of Mothers of Children with Chronic Physical Disability

Examined the relationship between maternal perceived role restriction,the extent to which a mother feels unable to pursue her owninterests due to responsibilities with raising a child witha chronic physical condition, and psychosocial adjustment in50 mothers with children 6–11 years old who had a chronicphysical disability. Perceived role restriction accounted fora significant increment in the variation in adjustment beyondthat contributed by objective indices of the child's disability.Neither these objective parameters of the child's disabilitynor his or her level of problem behaviors predicted perceptionsof role restriction. However, perception of social support did.The potential role of intrapersonal processes was discussedas a neglected component of a multidimensional model of adjustmentin mothers of children with a chronic physical condition.     

Predictors of psychological adjustment in school-age children infected with HIV

OBJECTIVE: To assess for significant differences in psychological functioning between HIV-infected children and a demographically matched healthy control group and to examine the utility of applying a stress and coping model to children with HIV disease. METHODS: Participants included HIV-infected children (ages 6-16) and their caregivers (n = 36) and a control group of healthy children and their caregivers (n = 32). During routine clinic visits, children completed measures of psychological adjustment, health locus of control, and coping style, and caregivers completed measures of their own and their child's psychological adjustment. RESULTS: Caregiver-reported and child self-reported psychological adjustment scores did not significantly differ between the HIV and control groups, with the exception of significantly more internalizing behavior problems reported in the control group. Hierarchical multiple regression analyses revealed that the stress and coping model accounted for 36% of the variance in HIV-infected children's self-reported psychological adjustment. In addition, child age and coping style were significant predictors of child self-reported psychological adjustment, but not of caregiver-reported child adjustment. CONCLUSIONS: Approximately 25% of children with HIV disease exhibited clinically significant emotional or behavioral problems; however, even higher rates of psychological adjustment problems were found in healthy children. Children with HIV disease who have not been told their diagnosis and children who endorse more emotion-focused coping strategies tend to exhibit more psychological adjustment problems.     

不同类别和安置方式受艾滋病影响儿童的生理和心理健康状况分析

目的:调查农村地区受到艾滋病影响的儿童包括双孤儿童、单孤儿童和非孤儿童的生理、心理健康状况和存在的问题行为,考察不同类别和安置方式儿童在生理、心理和问题行为上的差异.方法:在艾滋病高流行地区选取双孤儿童、单孤儿童和非孤儿童1221名,以行政村和孤儿院为单位随机或整群取样.采取问卷调查的方式了解他们的生理、心理健康状况和存在的问题行为.结果:受到艾滋病影响的儿童存在一定的生理、心理健康问题和问题行为.不同类别儿童中,双孤儿童的生理健康状况最好,而问题行为最多,心理健康各有高低;不同安置方式中,孤儿院安置儿童也是生理健康状况最好,问题行为最多,而心理健康上只在自尊上存在显著差异.结论:孤儿院对孤儿的抚养使孤儿在生理健康上有很大的提高,但应加强问题行为和心理方面的健康教育和干预.