Comparing parental distress,family functioning,and the role of social support for caregivers with and without a child with juvenile rheumatoid arthritis

OBJECTIVE: To assess parental distress, family functioning, and social support among parents of children with a lifetime diagnosis of juvenile rheumatoid arthritis (JRA) and comparison families. METHODS: Parents of 64 children with JRA (64 mothers, 46 fathers) completed questionnaires and in-home interviews along with 64 matched comparison families. Average time since diagnosis for children with JRA was 70 months. RESULTS: Families of children with JRA generally reported levels of parental distress, family functioning, and social support similar to those for comparison families. More mothers of children with JRA exceeded the clinical cutoff on the SCL-90-R than comparison mothers. Although disease characteristics and social support did not distinguish subgroups of parents at greater risk for problems, family supportiveness and conflict were associated with caseness for mothers of children with JRA. CONCLUSIONS: Families of children with JRA exhibited substantial resilience over the long term. Further multisite study of children recently diagnosed and with more severe forms of JRA is warranted to determine intervention needs, especially for mothers.     

Maternal Child-Rearing Behavior in Three Groups: Cystic Fibrosis, Insulin-Dependent Diabetes Mellitus, and Healthy Children

Compared child-rearing behaviors among mothers of children (ages4–14) with cystic fibrosis (CF) (N = 26), insulin-dependentdiabetes mellitus (IDDM) (N = 26), and mothers of physicallyhealthy children (N = 26), on six domains, including involvement,limit setting, responsiveness, reasoning and guidance, freeexpression, and intimacy using the Iowa Parent Behavior Inventory.Maternal Reports of their child-rearing behavior were comparableacross the three groups with one exception: Mothers of childrenwith chronic illnesses (CF and IDDM) were significantly lesslikely to set limits than mothers of healthy children. The presentfindings are consistent with those of other studies that haveidentified few differences in child-rearing practices betweenmothers of children with chronic illnesses and mothers of healthychildren. Future research should identify situation-specificparenting tasks unique to childhood chronic illness.     

Interdependencies among interparental discord and parenting practices: the role of adult vulnerability and relationship perturbations

We examined the nature and directionality of associations between interparental discord and parenting practices in a sample of 227 mothers and fathers of kindergarten children over two measurement waves spaced 1 year apart. Cross-lagged models indicated that associations between interparental discord and maternal and paternal parenting practices (i.e., acceptance, discipline) were generally negligible with one exception: interparental discord at Time 1 predicted decreases in maternal acceptance from Time 1 to Time 2. However, consistent with the family systems conceptualization of the family as an open system, prospective associations among interparental and parent-child subsystems varied significantly as a function of parental depressive symptoms, interparental relationship insecurity, and child-rearing disagreements. The moderating role of adult characteristics commonly varied across the type of adult vulnerability (e.g., depressive symptoms, interparental relationship insecurity, child-rearing disagreements), dimension of parenting practices (e.g., maternal and paternal acceptance and inconsistent discipline), and the directionality of the paths between interparental and parent-child subsystems.     

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.     

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.     

Enhanced Parenting Knowledge and Skills in Mothers of Preschool Children with Sickle Cell Disease

Compared 25 preschool children with sickle cell disease (SCD)to demographicalty matched healthy comparison children on maternalreports of child-rearing beliefs and practices and maternaland child behaviors related to social adjustment. Mothers ofchildren with SCD possessed significantly more knowledge ofappropriate discipline techniques. The groups did not differon maternal reports of socially relevant child behavior. However,when mother-child interactions were observed in free play andstructured play settings, mothers of children with SCD treatedtheir children as competent significantly more, and treatedtheir children as incompetent significantly less, than comparisonmothers. Mothers of children with SCD also used significantlymore reinforcement during the final toy pick-up condition. Therewere no observed differences between groups in the children'sbehavior.     

Human parental behavior: Evidence for genetic influence and potential implication for gene-culture transmission

A large sample of adult twins (1117 pairs), who were concordant for having had children were asked to report on their child-rearing practices. A 14-item version of the Parental Bonding Instrument (PBI) was used to assess rearing practices of parent twins. The two factors of Care and Overprotection, commonly found in other studies, were recovered from this analysis of the PBI's parent form. Model-fitting analyses indicate that human parental behavior is under significant genetic influence. Findings further suggest that this influence is sex limited, with a higher heritability in mothers than in fathers and that it may result partly from the expression of dominant genes. For both PBI factors and both parents, the best-fitting models invariably assumed sex-limited genetic effects and unique environmental influences only. Broad heritability ranged from 19% (father overprotection) to 39% (mother care). These results are interpreted in the broader perspective of gene-culture theory.     

Disease experience and psychosocial adjustment in children with juvenile rheumatoid arthritis: children's versus mothers' reports.

Adjustment in children with juvenile rheumatoid arthritis (JRA) has been evaluated most frequently by parental or teacher reports and with reference to disease severity. In this study, 38 children, ages 7 to 13 with JRA, and their mothers were interviewed. Modest correlations were found between children and mothers in their assessments of children's perceived competence in several domains (i.e., athletic competence, social acceptance, physical attractiveness, and global self-worth) and in their perceptions of how JRA is experienced by children and families. Children's perceptions of the disease experience were significantly correlated with the four measures of perceived competence, even after controlling for disease severity. The results highlight the importance of cross-validating parental reports with children's self-reports, and demonstrate the need to consider variables other than disease severity--in particular how JRA is interpreted by children--in predicting their adjustment.     

Perceived difficult temperament, hostile maternal child-rearing attitudes and insulin resistance syndrome precursors among children: a 3-year follow-up study

BACKGROUND: We prospectively examined the relationship between latent constructs of perceived difficult temperament and hostile maternal child-rearing attitudes on the one hand, and the cluster of multiple cardiovascular risk factors comprising the insulin resistance syndrome (IRS) on the other. METHODS: A 3-year follow-up study of 451 randomly selected healthy children was used. The temperament of the children and maternal child-rearing attitudes were self-rated by the mothers. The physiological parameters measured were serum insulin, high-density lipoprotein cholesterol (HDL-C), triglycerides, systolic blood pressure, body-mass index and subscapular skinfold thickness. We analyzed the data using structural equation models that involved specific paths allowing separation, and tests of both unique and common (latent) aspects of measured variables. RESULTS: Among boys we found a cross-lagged effect between the latent constructs of perceived difficult temperament and IRS, as well as 1 specific effect from hostile maternal child-rearing attitudes to HDL-C. Among girls there were 6 specific effects from specific measures of perceived temperamental difficultness or hostile maternal child-rearing attitudes that influenced the IRS or its components. CONCLUSIONS: The findings suggest that temperament and maternal child-rearing attitudes may contribute to the early development of the IRS in a gender-specific way among children, thereby potentially increasing the risk of coronary heart disease later in life.     

Risk and resistance factors in the adaptation in mothers of children with juvenile rheumatoid arthritis

OBJECTIVE: To examine the importance of illness severity, child functional status, psychosocial stress, intrapersonal factors, stress processing, and social-ecological factors in predicting psychological symptoms among mothers of children with juvenile rheumatoid arthritis (JRA). METHODS: Mothers of 92 children with JRA completed surveys while waiting with their children for physician appointments or during JRA meeting breaks. RESULTS: Mothers reported higher mean levels of psychological symptoms than a normative group. Higher levels of psychosocial stress predicted increased psychological symptoms after accounting for disease severity and functional status. Maternal appraisal of the illness tended to moderate the relationship between illness stress and psychological symptoms, and maternal education moderated the relationship between daily hassles stress and psychological symptoms. CONCLUSIONS: These data indicate that mothers of children with JRA are at risk for psychological distress. Inteventions that take into account the buffering effects of maternal education and appraisal may serve to decrease the effects of maternal stress.     

Attachment in infancy and personal space regulation in early adolescence

This study longitudinally assessed associations between secure and ambivalent attachment with mothers, fathers and professional caregivers in infancy, and personal space regulation and perceived interpersonal competence in 64 early adolescents (31 boys, 33 girls). Children classified as ambivalently attached to their mothers and/or professional caregivers in infancy displayed significantly larger permeability of personal space as compared with children classified as securely attached. Attachment classifications with fathers were not associated with personal space behavior at 12 years of age. Children who had an insecure attachment relationship with both the mother and the professional caregiver in infancy displayed smaller personal space boundaries, and tolerated larger intrusions into their personal space as compared with children who had two secure attachments in infancy. Finally, perceived interpersonal competence was positively correlated with personal space permeability.     

Attachment in infancy and personal space regulation in early adolescence

This study longitudinally assessed associations between secure and ambivalent attachment with mothers, fathers and professional caregivers in infancy, and personal space regulation and perceived interpersonal competence in 64 early adolescents (31 boys, 33 girls). Children classified as ambivalently attached to their mothers and/or professional caregivers in infancy displayed significantly larger permeability of personal space as compared with children classified as securely attached. Attachment classifications with fathers were not associated with personal space behavior at 12 years of age. Children who had an insecure attachment relationship with both the mother and the professional caregiver in infancy displayed smaller personal space boundaries, and tolerated larger intrusions into their personal space as compared with children who had two secure attachments in infancy. Finally, perceived interpersonal competence was positively correlated with personal space permeability.     

Surviving childhood cancer, social support, and parents' psychological adjustment.

Assessed whether the continuing emotional strain of parenting a child cancer survivor is associated with elevated levels of psychological distress (depression and anxiety) in parents. The role of social support in moderating this relationship was also evaluated. When parents of cancer survivors (63 mothers and 49 fathers) were compared to a matched sample of parents (64 mothers and 62 fathers) with healthy children there were no differences in levels of depression or anxiety overall but among parents experiencing low levels of social support, parents of cancer survivors were more depressed and anxious than parents of healthy children. Perceived social support has a significant inverse relationship with psychological distress for both parents but seems to be more important for mothers. The elevated risk for psychological distress noted for those experiencing low levels of support appears to be more generalized for fathers than mothers.     

A controlled longitudinal study of the social functioning of children with juvenile rheumatoid arthritis

OBJECTIVE: To complete an assessment of social functioning of children with juvenile rheumatoid arthritis (JRA) and nonchronically ill controls who had been evaluated 2 years earlier (Noll et al., 2000) and to examine the impact of disease severity or disease activity over time on the social functioning of children with JRA. METHODS: Peer-, teacher-, and self-reports of social functioning were obtained from 57 children with JRA and 63 controls. Social reputation and social acceptance were examined cross-sectionally and longitudinally. RESULTS: Cross-sectional analyses indicated no significant differences between children with JRA and controls on measures of social functioning. For children with more severe disease, like ratings declined over the 2-year period relative to children with mild disease. Children with active disease were chosen fewer times over the 2-year period as a best friend than children in remission. CONCLUSIONS: Because children with severe or active JRA may be at risk for difficulties with social acceptance over time, they are appropriate targets for interventions that ameliorate or prevent these difficulties.     

Sleep in spousal caregivers of people with Alzheimer's disease

STUDY OBJECTIVE: This study examined differences in objective and subjective measures of sleep between caregivers and noncaregivers. DESIGN: Cross-sectional design. SETTING: All assessments were conducted within the home. PARTICIPANTS: Seventy-three community-dwelling spousal caregivers of patients with Alzheimer's disease and 40 noncaregiving controls. MEASUREMENTS AND RESULTS: Subjects completed a semistructured interview on sociodemographics, cognitive status of the care recipient, self-reported sleep quality, and functional outcome. A polysomnogram was conducted. Caregivers of patients with moderate to severe Alzheimer's disease reported significantly more sleep problems (P<.05) and more functional impairment as a result of sleepiness than noncaregivers (P<.01). Objectively, older caregivers of those with moderate to severe Alzheimer's disease slept less than older noncaregivers (P<.05); there were no other significant differences in objective sleep measures. There was a main effect for age, with older caregivers and older noncaregivers having lower sleep efficiency, less slow-wave sleep, and more stage 1 sleep than younger caregivers and noncaregivers (P<.05). CONCLUSIONS: This study suggests that nighttime sleep is shorter but not otherwise disrupted in caregivers of patients with moderate to severe Alzheimer's disease compared with noncaregivers, and the impact of caregiving on sleep disturbance may be most salient for older caregivers. It is possible that these older caregivers are more vulnerable to the effects of sleep disruption and thus have trouble falling back to sleep when the time is afforded them. Future work is needed to examine the differences in care practices in caregivers by age and dementia severity. Perhaps more importantly, studies examining the health consequences of shortened sleep in this group are needed.     

Problem-solving abilities among mothers of infants with failure to thrive

OBJECTIVE: Maternal problem-solving abilities, as they related to specific child-rearing situations, were examined and compared among mothers of infants with failure to thrive (FTT) and a matched group of comparison mothers. METHODS: Participants were 37 mothers of children diagnosed with FTT and 37 mothers with normally growing children matched on three child variables and five maternal variables. Participants were administered a means-ends problem-solving measure specific to parents of young children and measures of language ability, depression, negative affect, and stressful life events. RESULTS: Multivariate analysis of covariance results supported our main study hypotheses that mothers of infants with FTT would generate fewer problem-solving strategies that would be judged of poorer quality (i.e., less likely to result in positive outcomes) than mothers of healthy, normally growing infants. There were no significant associations obtained among problem-solving variables and individual difference variables (e.g., depression, negative affect, and stressful life events). CONCLUSIONS: Limited maternal problem-solving abilities may contribute to FTT by interfering directly with the quality of nurturance, feeling, and caloric intake the child receives. Recommendations are made for future research and interventions with mothers of children with FTT.     

非正式照护者负担与相关因素初步调查

目的:了解非正式照护者负担现状,探索影响照护者负担的危险因素。方法:解放军采用自填问卷对129名非正式照护者进行调查。采用logistic回归初步分析非正式照护者的压力、担心与健康的影响因素。结果:93(72.1%)人有照护经历,女性非正式照护者占比76.0%。非正式照护者多为被照护者的子女(30.2%),被照护者平均年龄为(64±30)岁,其失能平均分为(3±2)分,失智平均分为(3±3)分。被照护原因首位为单纯躯体疾病(21.7%),女性非正式照护者照护的人群失能程度更高。非正式照护者为老年人、已婚与照护者自觉压力、担心与健康情况均有关联。结论:已婚、照护65岁以上老人是非正式照护者负担的危险因素,应给予重点关注。     

Psychological correlates of depression in children with recurrent abdominal pain

OBJECTIVE: To examine the associations between coping style, social support, self-efficacy, locus of control, maternal adjustment, and depressive symptoms in children with recurrent abdominal pain (RAP) of childhood. METHODS: Fifty children with RAP (8-18 years) and their mothers were recruited from a gastroenterology clinic (GI) and community medical practices. Participants completed questionnaires that assessed coping style, social support, self-efficacy, locus of control, maternal adjustment, and psychological adjustment. RESULTS: Passive coping strategies such as isolating oneself from others, catastrophizing, and behavioral disengagement were associated with more child-reported depressive symptoms. Higher levels of self-efficacy and greater social support from teachers and classmates were associated with fewer child-reported depressive symptoms. Higher levels of maternal adjustment problems, higher social support from parents, and lower social support from classmates were associated with maternal reports of more child internalizing symptoms. CONCLUSIONS: These findings suggest that coping style, self-efficacy, social support, and maternal adjustment are correlates of depressive symptoms in children with RAP.     

Electromyographic Studies in Parents of Children with Spinal Muscular Atrophy

Electromyographic studies have been carried out on the quadriceps and deltoid muscles of a number of healthy parents of children with infantile spinal muscular atrophy (types I and II) and the results compared with those obtained in healthy controls of the same sex. The results indicated an increase in mean amplitude of action potentials in quadriceps and deltoid muscles in both fathers and mothers (statistically significant in the quadriceps in the latter) of children with type I spinal muscular atrophy (Werdnig-Hoffmann disease). Increase in the mean amplitude in the quadriceps and deltoid muscles in mothers of children with type II spinal muscular atrophy and the mean duration of action potentials in the quadriceps muscle in mothers of children with type I and type II spinal muscular atrophy were also observed, but the differences from controls were not significant.