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.     

Cognitive abilities and achievement status of children with myelomeningocele: a contemporary sample

Designed study as a conceptual replication of Shaffer, Friedrich, Shurtleff, and Wolf (1985). Intelligence, school achievement, and perceptual motor skill data from 73 children with uncomplicated myelomeningocele were examined to determine their deviation from test norms. The respective impact of shunting and functional motor level was also assessed. The sample as a whole functioned below WISC-R and VMI norms. On the WRAT, deviation from the norms was evident only for the Arithmetic subtest. Partial replication of the Shunt X Motor level interaction reported by Shaffer et al. (1985) was obtained. Limitations of small-sample studies are discussed.     

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.     

Parents' social adjustment in families of children with spina bifida: a theory-driven review

OBJECTIVE: Five theoretical hypotheses about the impact of spina bifida (SB) on parents' social adjustment in the parent-child, the marital and the family-level relationship were tested. METHODS: PsycInfo, Medline and reference lists were searched. This yielded 27 eligible reports. Effect sizes (Hedges' d) were computed to estimate the impact of SB. RESULTS: Overall, the effects of SB were small to negligible on the affective dimensions of parents' relationships. The few effects that were found tended to be positive. The most important negative effects of SB were found in the parent-child relationship (parenting stress and overprotection). CONCLUSIONS: Support was found for the resilience-disruption hypothesis, the role-division hypothesis and the miscarried-helping hypothesis, but not for the marital-disruption hypothesis or the marginality hypothesis.     

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.     

Somatic complaints in males as a function of age and neuroticism: A longitudinal analysis

Previous research has shown that both age and neuroticism are correlated with total scores on self-report health inventories; the present study concerns the influence of these two factors on reports of physical complaints in various bodily systems. Six- and twelve-year longitudinal analyses of the physical health sections (A-L) of the Cornell Medical Index were supplemented with cross-and time-sequential analyses. Subjects, aged 17–97, were taken from a group of 1038 male participants in the Baltimore Longitudinal Study of Aging. Results showed that problems in sensory, cardiovascular, and genitourinary systems increased with age, while health habits improved. More neurotic subjects, as measured by the psychiatric sections (M-R) of the CMI and the Emotional Stability Scale of the GZTS showed higher levels of endorsements on all sections. These results suggest that age does not produce a generalized increase in physical complaints; instead, specific age-related symptoms show increases. Implications of these findings for research involving self-assessments of health are discussed.Portions of this paper were presented at the 32nd Annual Meeting of the Gerontological Society, November 1979, Washington, D.C.     

Brief report: Development and pilot testing of a coping questionnaire for children and adolescents with chronic health conditions

OBJECTIVE: The current paper describes the development, pilot testing, and item reduction process of a coping questionnaire for children and adolescents with chronic health conditions. METHODS: A pilot test with 188 children and adolescents was conducted in six European countries. Included in the test were children and adolescents (ages ranging 8-18 years) with various chronic health conditions-asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, or cystic fibrosis. Based on the focus groups with the children and adolescents and on expert consulting, items were developed and translated into the participants' respective languages. Data were analyzed according to predefined psychometric and content criteria. RESULTS: Analyses resulted in a selection of 29 out of 50 items for the final coping questionnaire with six domains: Acceptance alpha = .83, Avoidance alpha = .72, Cognitive-Palliative alpha = .69, Distance alpha = .70, Emotional Reaction alpha = .82, and Wishful Thinking alpha = .81. CONCLUSIONS: This study developed a short reliable international questionnaire to assess coping strategies of children and adolescents with chronic health conditions. Ongoing research will investigate the validity of this new coping questionnaire.     

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.     

Brief report: psychometric evaluation of the severity of illness scale in a pediatric oncology sample

OBJECTIVE: To examine the psychometric properties of the Severity of Illness Scale (SOIS), a measure that focuses on the medical severity of illness of children with cancer, from the point of view of medical personnel. METHODS: Following pretesting, the SOIS was administered to nurses and physicians of 55 pediatric cancer patients at three time periods: entry into study, 2-week follow-up, and 3-month follow-up. Validity determination included analyses of relapse status and bone marrow transplant. Test utility was determined via a respondent questionnaire. RESULTS: Test-retest reliability coefficients were .96 and .92 for 2-week and 3-month time periods. Interrater reliability, assessed by comparing physician ratings to nurse ratings, was .89. Evidence for criterion-related validity revealed that the SOIS discriminates both bone marrow transplant and relapse status. Physicians and nurses rated the SOIS positively for brevity, ease of completion, and usefulness in depicting medical severity of disease. CONCLUSIONS: There is preliminary evidence for the psychometric utility of the Severity of Illness Scale for a pediatric cancer population. The inclusion of illness parameters in current models of risk and resiliency dictate the need for such a measure.     

遗传与环境因素对儿童内向行为影响的双生子研究

目的 利用双生子设计的定量遗传分析方法探讨遗传因素与环境因素对于儿童内向行为的影响.方法 使用Achenbach儿童行为评定量表家长版本调查了189对成都地区6～16岁双生子的内向行为,采用Holzinger公式计算遗传度,家长评定家庭亲密度和适应性量表、一般健康问卷调查特定环境因素.结果 (1)儿童内向行为遗传度为0.54,年龄、性别与其相关.(2)家庭实际适应性、父母心理健康情况与儿童的内向行为显著相关(r=-0.213,0.250,0.309;Ps＜0.001),母亲心理健康状况为其危险因素(OR=2.483,P=0.008).结论 遗传因素和环境因素对儿童的内向行为均有影响,年龄和性别与遗传度相关,影响儿童内向行为的环境因素包括家庭功能和父母的心理健康水平.     

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.     

Brief report: cognitive functioning in children with Tourette's syndrome with and without comorbid ADHD

OBJECTIVE: To examine whether patients with Tourette's syndrome (TS) with and without comorbid attention deficit and hyperactivity disorder (ADHD) differ in cognitive functioning and whether a higher level of cognitive functioning is associated with severity of TS symptoms and psychosocial functioning. METHODS: Cognitive functioning, symptom severity, and psychosocial functioning were examined in 40 patients (33 boys, 7 girls; age range 6-18 years) with TS, of whom 17 had the comorbid diagnosis of ADHD. RESULTS: Patients with a comorbid ADHD diagnosis evidenced poorer performance than those with TS alone with respect to severity of TS symptoms, psychosocial functioning, verbal and performance intelligence, and word fluency, but not on tests of cognitive flexibility. Psychosocial functioning was predicted by symptom severity, but not by intelligence or fluency. CONCLUSIONS: Results confirm prior findings that comorbid ADHD is associated with more TS symptoms and worse psychosocial and cognitive functioning, and motivate whether cognitive flexibility plays a role in moderating the deleterious psychosocial effects of Tourette's syndrome and ADHD.     

Brief report: friendships of adolescents with and without diabetes

BACKGROUND: Friendships of adolescents with chronic illness have been rarely studied. OBJECTIVE: To compare the friendships of boys and girls with diabetes with those between healthy adolescents. METHODS: One hundred and thirty-eight adolescents were interviewed at summer camps. Participants indicated their number of close friends and rated friendships for support and conflict. Participants described aspects of their same-sex and other-sex friendships that they liked and disliked. RESULTS: Adolescents with diabetes have friendships that are similar to those between healthy adolescents, with a few exceptions. CONCLUSIONS: Emotional support may be especially valued by girls with diabetes, whereas differences among friends may be less valued among adolescents with diabetes.     

Brief report: illness intrusiveness and adjustment among Native American and Caucasian parents of children with juvenile rheumatic diseases

OBJECTIVE: To investigate cognitive appraisal-adjustment relationships in Native American (NA) and Caucasian parents of children diagnosed with juvenile rheumatic diseases. METHODS: NA (n = 16) and Caucasian (n = 24) parents completed measures of disease status, illness intrusiveness, and adjustment; the rheumatologist provided estimates of disease severity. RESULTS: Hierarchical regression analysis revealed a moderating effect for racial group membership on the illness intrusiveness-parent adjustment relationship. Specifically, parent-perceived illness intrusiveness was more closely related to poorer adjustment among NA parents relative to Caucasian parents. Post hoc tests indicated that illness intrusiveness was significantly associated with poorer adjustment in NA parents, but was unrelated to parent adjustment in the Caucasian sample. CONCLUSIONS: Results highlight the importance of examining racial group differences in cognitive appraisal-adjustment outcome relationships. Results are discussed with respect to the need for incorporating cultural issues into pediatric chronic illness research and treatment.     

Measurement issues in postpartum depression part 2: Assessment of somatic symptoms using the Hamilton Rating Scale for Depression

Summary Assessment of the somatic symptoms of depression in perinatal women has been debated due to potential overlap with normal physical complaints of pregnancy and childbirth. We investigated the properties of the 17-item Hamilton Rating Scale for Depression (HAMD), which includes somatic items, between 36 weeks gestation and 16 weeks postpartum in 150 women. Scores on the HAMD were highly correlated with scores on measures that avoid somatic items. Scores on somatic items were not well correlated with the total HAMD score in pregnancy, but the correlations increased at 6 weeks postpartum. In contrast, scores on HAMD item 1 (“Depression”) were less well correlated with the total score at 6 weeks postpartum than prenatally, suggesting that postpartum women may be less likely to articulate their difficulties as “depression”, and more likely to describe somatic complaints such as low energy or insomnia. Implications for the assessment of depression in this population are discussed. Received June 26, 2002; accepted November 12, 2002 Published online January 17, 2003 Correspondence: Lori E. Ross, Ph.D., Women's Health Concerns Clinic, St. Joseph's Healthcare, Fontbonne Building, 6^th Floor, 50 Charlton Ave. E., Hamilton, Ontario, Canada L8N 4A6. e-mail: l.ross@utoronto.ca     

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.     

Myelomeningocele and Waardenburg syndrome (type 3) in patients with interstitial deletions of 2q35 and the PAX3 gene: Possible digenic inheritance of a neural tube defect

From a spina bifida clinic we have identified two patients with a syndrome of myelomeningocele and Waardenburg syndrome type 3 (WS3). The patients each possess a single, de novo, interstitial deletion of chromosome 2 (2q35–36.2), including the PAX3 gene. Deletion of PAX3 was confirmed by fluorescence in situ hybridization (FISH). Analysis with PAX3 and flanking microsatellites shows that the deleted interval of chromosome 2 is of paternal origin and is at least 2 and 6 cM in the two patients. Interstitial deletions in this region result in the Waardenburg syndrome (WS1), but have not been associated with neural tube defects (NTDs). Although other etiologies have not been formally excluded, these patients raise the possibility of a digenic etiology of their NTDs via a genetic interaction of the deleted PAX3 gene with a second unidentified locus. Am. J. Med. Genet. 75:401-408, 1998. © 1998 Wiley-Liss, Inc.