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.     

Psychosocial and behavioral outcomes in children with sickle cell disease and their healthy siblings

The current study aims to compare positive and negative measures of psychosocial functioning among children with sickle cell disease (SCD) and their healthy siblings. Participants were 41 African-American children with SCD, 97 healthy siblings, and their primary caregivers. Primary caregivers completed self-report questionnaires assessing child behavioral problems, while children with SCD and siblings completed self-report questionnaires assessing coping, self-efficacy, and perceived social support. No significant differences were noted between children with SCD and their siblings on all measures. Both groups reported self-efficacy and perceived social support within the normative range, and endorsed significantly greater use of Positive/Approach coping. In general, both groups of children do not have clinically significant behavioral problems. However, secondary exploratory analyses identified that a greater percentage of children from both groups scored above the established clinical cutoff on the behavioral summary scores. Number of visits to the emergency room was related to behavioral problems in children with SCD. While previous reports have been mixed in their findings that children with SCD are at greater risk for psychosocial and other behavioral problems, the current report finds that children with SCD and their healthy siblings endorse positive psychosocial functioning and as a group do not have clinically significant behavioral problems. Nonetheless, ongoing psychosocial evaluation for children receiving treatment for SCD is vital.     

Social information processing and magnetic resonance imaging in children with sickle cell disease

OBJECTIVE: To examine social information processing, social skills, and adjustment difficulties in children with sickle cell disease (SCD) as rated by caregivers, teachers, and the children themselves. Children were classified in two groups: cerebral vascular accidents (CVA) (n = 21) or without central nervous system (CNS) pathology (n = 20) on magnetic resonance imaging (MRI). Both groups had HbSS SCD. We compared these two groups and a third group of 11 children who had a milder type of SCD (HbSC). METHODS: Participants referred for evaluation of learning and behavior problems were administered MRIs to ascertain the presence of pathology and a series of measures designed to assess nonverbal emotional decoding abilities and ratings of social emotional functioning. RESULTS: Children with CVA displayed more errors on tasks of facial and vocal emotional decoding than did comparison controls without CVA. CONCLUSIONS: Acquired neurological impairments in children with SCD seemed to be associated with difficulties in the decoding of emotions of other children and adults. We recommend that future research integrate neuropsychological and psychosocial research programs for pediatric chronic illness groups.     

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.     

Physical status and psychosocial adjustment in children with spina bifida

Investigated the relationship between the physical status and psychosocial adjustment of chronically physically handicapped children. The status of 61 children with spina bifida regarding six specific disease or disability parameters was determined from medical charts. Their mothers completed the Child Behavior Checklist as a measure of the children's psychosocial adjustment. Children with spina bifida were reported to display on the average significantly more behavior and social competence problems than expected for children in general. However, children with differing degrees of physical problems and disability did not differ significantly in their psychosocial adjustment. The general lack of relationship between physical status and adjustment as it relates to a conceptual model guiding this research is discussed.     

Social competence, externalizing, and internalizing behavioral adjustment from early childhood through early adolescence: developmental cascades

This study used a three-wave longitudinal design to investigate developmental cascades among social competence and externalizing and internalizing behavioral adjustment in a normative sample of 117 children seen at 4, 10, and 14 years. Children, mothers, and teachers provided data. A series of nested path analysis models was used to determine the most parsimonious and plausible cascades across the three constructs over and above their covariation at each age and stability across age. Children with lower social competence at age 4 years exhibited more externalizing and internalizing behaviors at age 10 years and more externalizing behaviors at age 14 years. Children with lower social competence at age 4 years also exhibited more internalizing behaviors at age 10 years and more internalizing behaviors at age 14 years. Children who exhibited more internalizing behaviors at age 4 years exhibited more internalizing behaviors at age 10 years and more externalizing behaviors at age 14 years. These cascades among social competence and behavioral adjustment obtained independent of child intelligence and maternal education and social desirability of responding.     

Hemophilia Growth and Development Study: caregiver report of youth and family adjustment to HIV disease and immunologic compromise

OBJECTIVE: To assess differences in caregiver report of youth and family psychosocial adjustment associated with HIV infection and greater immune compromise in youths with hemophilia. METHODS: Caregivers of 162 boys with hemophilia 8 to 20 years old completed three youth and family questionnaires (Personality Inventory for Children, Revised [PIC-R]; Questionnaire on Resources and Stress [QRS]; Family Environment Scale). RESULTS: Caregivers of HIV positive (HIV+) youths reported greater health concerns, social withdrawal (PIC-R), physical and adaptive limitations associated with illness (QRS) in their sons, and more pessimism about their sons' future and negative attitudes about parenting (QRS). Caregivers of HIV+ youths with greater immune compromise reported greater concerns about their sons' health and greater pessimism about their futures, as well as lower levels of family integration and more limited family opportunities. CONCLUSIONS: Results suggest caregivers perceive psychosocial problems in HIV+ youths with hemophilia and their families; some problems are specifically associated with greater immune compromise.     

Parenting Stress Among Caregivers of Children With Bipolar Spectrum Disorders

Caregivers of psychiatrically impaired children experience considerable parenting stress. However, no research has evaluated parenting stress within the context of pediatric bipolar spectrum disorders (BPSD). Thus, the aim of this investigation was to identify predictors and moderators of stress among caregivers in the Longitudinal Assessment of Manic Symptoms study. Participants included 640 children and their caregivers in the Longitudinal Assessment of Manic Symptoms cohort. Children had a mean age of 9.4 ± 1.9 years (68% male, 23% BPSD); parents had a mean age of 36.5 ± 8.3 years (84% mothers). Children with BPSD had more service utilization, psychiatric diagnoses, mood and anxiety symptoms, and functional impairment but fewer disruptive behavior disorders. Caregivers of children with BPSD were more likely than caregivers of children without BPSD to have a partner, elevated depressive symptoms, antisocial tendencies, and parenting stress (Cohen’s d = .49). For the whole sample, higher child IQ, mania, anxiety, disruptive behavior, and caregiver depression predicted increased parenting stress; maternal conduct disorder predicted lower stress. Child anxiety and disruptive behavior were associated with elevated caregiver stress only for non-BPSD children. Caregivers of children with BPSD experience significant burden and thus require specialized, family-focused interventions. As stress was also elevated, to a lesser degree, among depressed caregivers of children with higher IQ, mania, anxiety, and disruptive behavior, these families may need additional supports as well. Although parents with conduct/antisocial problems evidenced lower stress, these difficulties should be monitored. Thus, parenting stress should be evaluated and addressed in the treatment of childhood mental health problems, especially BPSD.     

Fears and anxiety in children with long-QT syndrome compared to children with asthma

OBJECTIVE: To compare children with asthma to children with long-QT syndrome (LQTS) in terms of anxiety and medical fears. METHOD: Forty children (25 males/15 females) with asthma and their mothers participated, along with seven children with LQTS (four males/three females) and their mothers. RESULTS: Children with asthma had significantly more medical fears, fear of danger/death, and fear of minor injury and small animals compared to children with LQTS. Children with LQTS tended to have more fear of failure and criticism, and tended to keep their feelings to themselves and minimize their real feelings of anxiety. Children with LQTS had significantly more internalizing problems, and their mothers had significantly higher anxiety. CONCLUSION: Fear and uncertainty can be overwhelming in LQTS. Children with LQTS do not seem to be able to share their feelings openly. Examining the psychosocial adjustment of affected children may assist professionals to help families to cope more effectively.     

Psychosocial adjustment among pediatric cancer patients: a multidimensional assessment

Identified types and frequencies of psychological difficulties manifested by pediatric oncology patients and child-, family-, and illness-related correlates of adjustment. Parents of 48 children with cancer, 4 to 17 years of age, completed the Personality Inventory for Children (PIC). Analysis of mean PIC scores indicated that the children had a high frequency of somatic concerns and problems in academic functioning. Similar mean PIC profiles were obtained for children across gender, age, and diagnostic groups. Overall, 52% of the children had profiles with two or more clinically significant problem areas. Children's adjustment was associated with gender, social competence, and parental coping. Boys exhibited significantly more problems than did girls. Children whom teachers rated as less socially competent and whose parents reported few effective coping responses exhibited greater difficulties in adjustment.     

Anxiety Sensitivity Among Anxious Children

Employed the Diagnostic Interview Schedule for Children to show that children diagnosed with an anxiety disorder score significantly higher on the Childhood Anxiety Sensitivity Index (CASI) than nondiagnosed children. Interviews and self-report measures regarding the child were completed by 201 children and their parents from a metropolitan area military community who were participating in a National Institute of Mental Health epidemiological survey. An analysis of variance was used to compare CASI scoring across three groups: children receiving anxiety diagnoses, children receiving externalizing diagnoses but no anxiety diagnosis, and children receiving no diagnoses. Although scoring on the CASI differentiated anxious children from the no-diagnosis control group, it did not differentiate anxious children from those receiving externalizing diagnoses. Implications of the findings for the validity of the CASI, the issue of anxiety sensitivity as a component of some externalizing disorders, and suggestions for further investigation are discussed.     

Childhood psychiatric disorder and unintentional injury: findings from a national cohort study

OBJECTIVE: We set out to examine the relationship between unintentional injury and common child psychiatric disorders, including both internalizing and externalizing diagnoses. METHODS: The 1999 British Child and Adolescent Mental Health Survey provided a nationally representative sample of over 10,000 children aged 5-15 years. Measures included assessment of diagnoses of psychiatric disorder from the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, unintentional injury, and a range of potentially related psychosocial factors. RESULTS: Children with psychiatric disorders had higher rates of unintentional injury. After accounting for psychosocial risk factors and comorbid psychopathology, oppositional defiant disorder (ODD) was independently associated with burns and poisoning. Attention deficit hyperactivity disorder (ADHD) was related to fractures, and depression and anxiety also showed independent links to some injury types. CONCLUSIONS: ODD and ADHD, rather than conduct disorder, appear to be the externalizing disorders associated with unintentional injury. We discuss possible models of the relationships between internalizing disorders and unintentional injury.     

Children With Chronic Physical Disorders: Maternal Reports of Their Psychological Adjustment

Advances in biomedical science have resulted in dramatic improvementsin the medical care of chronically ill and handicapped children.Past measurement problems have resulted in a lack of clarityregarding the psychological adjustment of these children. Themothers of 270 chronically ill and handicapped children wereadministered the Child Behavior Checklist in an attempt to identifypatterns of behavioral functioning across six pediatric chronicdisorders: juvenile diabetes, spina bifida, hemophilia, chronicobesity, juvenile rheumatoid arthritis, and cerebral palsy.In general, it was found that children in all chronic disordergroups were perceived by their mothers as evidencing on theaverage more behavioral and social competence problems thanexpected based on norms for children in general. However, theirbehavioral and social adjustment was reported as better thanthat of a normative sample of children referred to mental healthclinics. There were essentially no differences between childrenwith different chronic disorders in terms of behavior problemsand social competence. The results were taken to support theview that these children were as a group at risk for adjustmentproblems. They were also discussed in terms of the noncategorialapproach, which suggests that similar psychosocial challengesare faced across pediatric chronic physical disorders.     

The Role of Social Support in Parental Adjustment to Pediatric Cancer

During the course of their child's illness and medical treatment,parents of children with cancer may experience many difficultchallenges. Though there is evidence that social support canhelp mitigate problems associated with other major life stresses,little empirical research has been conducted on the effectsof social support on the psychosocial problems of the familywhen a member is being treated for cancer. The present studysystematically assessed adjustment difficulties in 107 parentsof children with cancer. Stage of treatment for cancer, parentage, and parent sex were examined for differing patterns ofpsychosocial adjustment. Younger parents (< 30 years of age)reported significantly greater psychosocial adjustment difficultiesthan older parents (> 30 years) in their domestic environment,sexual relations, extended family relationships, personal psychologicaldistress, as well as total psychosocial adjustment. Parentswhose child had died demonstrated significantly poorer adjustmentin their extended family relationship, domestic environment,as well as in their overall psychosocial adjustment. Severalperceived sources of social support appeared to mitigate psychosocialadjustment difficulties in parents whose child was currentlyin treatment. In parents whose child was alive but not undergoingactive medical treatment, only support from relatives appearedto temper adjustment difficulties. Parents whose child had dieddid not appear to benefit from any source of social support.The results are discussed in terms of the identification ofa potentially high-risk group for psychosocial difficulties.     

Mentalization in children exposed to parental methamphetamine abuse: relations to children's mental health and behavioral outcomes

This study examined the mentalization capabilities of children exposed to parental methamphetamine abuse in relation to symptom underreporting, mental health, and behavioral outcomes. Twenty-six school-aged children in foster care participated in this study. Mentalization was assessed using the My Family Stories Interview (MFSI), a semi-structured interview in which children recalled family stories about a happy, sad or scary and fun time. An established scale of the Trauma Symptom Checklist for Children (TSCC), a self-report measure, provided information on children's symptom underreporting. The Child Behavior Checklist (CBCL), completed by the children's foster caregivers, assessed children's mental health and behavioral outcomes. Children with higher mentalization were significantly less prone to underreport symptoms. These children had fewer mental health problems and were rated by their foster caregivers as more socially competent. The findings underscore that mentalization could be an important protective factor for children who have experienced parental substance abuse.     

The adjustment to diabetes of school‐age children with psychological adjustment problems

Objective: To determine whether diabetic children with psychological adjustment problems have greater difficulties in specific areas of disease adaptation than their welladjusted diabetic peers by comparing their diabetes‐related adjustments in the family, school and peer environments. Method: Mothers of 47 school‐age preadolescent children with diabetes completed a standardized assessment of general psychological functioning. Children with psychological adjustment problems were then compared with children who did not exhibit problems along the following dimensions: their demographic and medical profiles, maternal diabetes knowledge, associations between general psychological functioning and diabetes control, and the quality of their diabetes adjustment. Results: No differences were found between children with psychological adjustment problems and their better‐adjusted peers along any of the demographic or health status variables tested or in maternal diabetes knowledge. However, children with adjustment problems were more likely to receive visits from the hospital's home‐care team and to be absent from school. Also, for children with psychological difficulty, indices of diabetes control and general psychological functioning were related, and the nature of this relation differed across the school and family environments. In addition, poorer psychological adjustment was associated with diabetes‐specific problems in both mother and child. These included individual adjustment problems such as feeling different, relationship difficulties with family and peers, and difficulties with the treatment protocol, in particular, with the dietary regime. Conclusion: These findings are considered in relation to (1) the importance of multi‐method techniques in research which concerns adjustment to diabetes, in particular the need to use both psychological and disease‐specific instruments, and (2) clinical evaluations and interventions for children with diabetes and their families.     

Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy

The purpose of this study was to tes a mediational model of associations between parental overprotectiveness (OP), behavioral autonomy. and psychosocial adjustment in 68 families with 8- and 9-year-old preadolescents with spipa bifida and a demographically matched sample of 68 families with able-bodied children. Measures included questionnaire and observational assessments of parental OP; parent and child reports of behavioral autonomy; and parent, child, and teacher reports of preadolescent adjustment. On the basis of both questionnaire and observational measures of OP, mothers and fathers of children with spina bifida were significantly more overprotective than their counterparts in the able-bodied sample, although this group difference was partially mediated by children's cognitive ability. Across samples, mothers were more likely to be overprotective than fathers. Both questionnaire and observational measures of parental OP were associated with lower levels of preadolescent decision-making autonomy as well as with parents being less willing to grant autonomy to their offspring in the future. For the questionnaire measure of OP, and only for the spina bifida sample. the mediational model was supported such that parental OP was associated with less behavioral autonomy, which was, in turn, associated with more externalizing problems. Findings are discussed in relation to the literature on parenting, autonomy development, and pediatric psychology.     

Inpatient pediatric consultation-liaison: a case-controlled study

OBJECTIVE: To conduct a prospective case-controlled study of pediatric inpatients referred for consultation in a tertiary care children's medical center. METHOD: Referrals (n = 104) were matched with nonreferrals (n = 104) for age (4 to 18 years), gender, and illness type/severity and completed parent- and self-report (dependent on age) behavioral rating scales to assess for adjustment/functioning. Nurses completed in-hospital ratings of behavioral/adjustment difficulties. Goal attainment and satisfaction ratings were obtained from the referring physicians, parents/guardians, and the consultant. RESULTS: Referrals exhibited more behavior/adjustment/coping difficulties than nonreferrals by parent, nurse, and self report. Frequently employed interventions included coping-strategies intervention, cognitive and behavioral therapies, and case management. Referring physician and consultant ratings of goal attainment were high, as were physician ratings of satisfaction and parent/guardian ratings of overall helpfulness. CONCLUSIONS: Pediatric inpatients referred by their physicians had significantly more internalizing and externalizing disturbances than their nonreferred hospitalized peers. Many of the behavioral and adjustment problems that lead to in-hospital consultation referral were evident in global behavior difficulties prior to hospitalization. Referring pediatricians, parents/guardians, and consultants rate the outcome as benefiting the patients via assisting in the overall management of their health concerns, coping, and adjustment.     

Long-term psychological adjustment of acute leukemia survivors: impact of bone marrow transplantation versus conventional chemotherapy.

As increasing numbers of patients survive acute leukemia, it has become important to study the long-term psychological and social adjustment of patients who have successfully completed their leukemia treatment. An important aspect of this inquiry is comparing the long-term psychosocial impact of two treatments for acute leukemia: chemotherapy and bone marrow transplantation. This study examines the psychosocial adjustment of 70 acute leukemia survivors who received either conventional chemotherapy alone (N = 49) or chemotherapy and an allogeneic bone marrow transplantation (N = 21). At the time of assessment, patients were an average of 31 years old, had completed treatment 5 years ago and were physically healthy (mean Karnofsky score of 97). Psychometrically sound, self-report questionnaires assessed global and illness-specific psychological distress and social adjustment. Despite the additional strain and longer hospitalization associated with bone marrow transplantation, there was no difference found between BMT survivors and those treated with conventional chemotherapy alone in current psychological and social functioning. Both groups, however, had significantly greater levels of distress than that observed in normal physically healthy samples. The distress neither reached a psychiatric threshold nor significantly interfered with social adjustment. These data suggest that, irrespective of treatment, acute leukemia survivors experience overall psychological well-being and social adjustment even though they still carry a psychological burden that should be recognized in their continuing follow-up and care.     

Structured leisure activities in middle childhood: Links to well‐being

Associations between children's (N = 147) participation in structured leisure activities and their adjustment were examined. Caregivers provided lists of extracurricular activities (clubs, sports, and church activities) in which children participated. Children and caregivers participated in interviews and completed questionnaires designed to measure children's adjustment in four domains (academic competence, psychosocial development, externalizing behavior, and internalizing behavior). Classroom teachers completed additional measures of children's academic and social competence. Greater participation in club activities was linked with higher academic grades and more positive teacher ratings of academic competence. Greater participation in sports was associated with higher levels of psychosocial maturity and more positive teacher ratings of social competence. There were no associations between involvement in church activities and any indicators of adjustment. Activity involvement was unassociated with externalizing or internalizing behavior. Findings are discussed in terms of both selection into different types of extracurricular activities and the skills emphasized in the pursuit of such activities. © 2003 Wiley Periodicals, Inc. J Comm Psychol 31: 641–659, 2003.