Child problem behaviours are associated with obesity in parents caring for children with developmental disabilities

Epidemiological evidence suggests that obesity and depression are highly co-morbid. In a national cohort study, we examined whether parents caring for children with disabilities were more likely to be classified as obese compared to parents of children without disabilities and if obesity was associated with depressive symptoms or child behaviour characteristics. Using data from the Growing Up in Ireland National Longitudinal Study of Children (2006 to date), 627 parents of children with developmental disabilities were compared with 7941 parents of typically developing children on objectively measured levels of obesity (body mass index ≥30 kg/m²), depression, health behaviours, chronic health conditions, socio-demographic and child behavioural characteristics. Parents of children with disabilities were more likely to be classified as obese compared to control parents (24.5% vs. 19.6%, p = 0.005, Cramer's V < 0.1). Depression was not associated with obesity. However, the odds of obesity increased with increasing child problem behaviour (OR 1.05, 95% CI 1.03–1.06). Over half (57%) of obese parents caring for children with disabilities reported trying to lose weight often or very often. This study has confirmed, in a population-based sample, the high risk of obesity in parents caring for children with disabilities after adjusting for the presence of depression and other health behaviours; increasing child problem behaviours were predictive of obesity. Importantly, given the negative health correlates of obesity, it is imperative that health professionals pay attention to weight issues in these parents and support their efforts in managing these issues.     

Social support is associated with blood pressure responses in parents caring for children with developmental disabilities

The present study tested whether parents caring for children with developmental disabilities would have higher blood pressure compared to parents of typically developing children (controls). It also examined the psychosocial factors underlying this observation. Thirty-five parents of children with developmental disability and thirty controls completed standard measures of perceived stress, child challenging behaviours and social support and wore an ambulatory blood pressure (BP) monitor throughout the day, for one day. Relative to controls, parents caring for children with developmental disabilities reported poorer psychosocial functioning and had a higher mean systolic BP. Of the psychosocial predictors, only social support was found to be predictive. Moreover, variations in social support accounted for some of the between group differences with the β for parental group attenuated from .42 to .34 in regression analyses. It appears that social support may influence blood pressure responses in parental caregivers. Finally, our findings underscore the importance of providing psychosocial interventions to improve the health of family caregivers.     

A comparison of coping strategies used by parents of children with disabilities and parents of children without disabilities

The purpose of this study was to determine whether coping strategies differ in parents of children with disabilities and parents of children without disabilities. Participants consisted of 112 parents, including 50 parents of children with disabilities and 62 parents of children without disabilities. It was hypothesized that coping strategies would be different between the two parent groups. It was also hypothesized that parents of children with disabilities would Seek Social Support and utilize Planful Problem Solving more often than parents of children without disabilities. Coping strategies employed were significantly different between the groups. Seeking Social Support was a more commonly used method of coping among parents of children with disabilities, as was Escape Avoidance and Positive Reappraisal.     

Social skills in children with intellectual disabilities with and without autism

Background Social skills were studied in 363 children with mild intellectual disabilities (ID) and 147 with moderate ID with and without autism (age 4 through 18). The objective was to investigate the value of the Children's Social Behaviour Questionnaire (CSBQ), as a measure of subtle social skills, added to a measure of basic social skills with the Vineland Adaptive Behaviour Scales (VABS), in identifying children with ID with or without autism. Method Children with mild and moderate ID, with and without autistic symptomatology were compared on basic social skills, measured with the Communication and Socialization domains of the VABS, and subtle social skills, measured with the CSBQ. Results Measuring basic social skills is not sufficient in differentiating between levels of ID. Communicative skills and subtle social skills, that concern overlooking activities or situations and fear of changes in the existing situation, seem to play a far greater role. Additionally, with respect to identifying autistic symptomatology, basic social skills do not contribute, as opposed to communicative skills and the tendency to withdraw from others. Conclusions The results implicate that the CSBQ not only has specific value as a measure of subtle social skills to identify pervasive developmental disorders, but that the instrument also has a specific contribution to differentiating between the two levels of ID. Furthermore, our outcomes imply a slight difference between limitations in subtle social skills as mentioned by the AAMR (American Association on Mental Retardation 2002 ) and limitations in subtle social skills as seen in milder forms of pervasive developmental disorders. Clinical and theoretical implications will be discussed.     

Mothers' expressed emotion towards children with and without intellectual disabilities

Objectives To identify factors associated with maternal expressed emotion (EE) towards their child with intellectual disability (ID). Design and method A total of 33 mothers who had a child with ID and at least one child without disabilities between the ages of 4 and 14 years participated in the study. Mothers completed self‐assessment questionnaires which addressed their sense of parenting competence, beliefs about child‐rearing practices, and their reports of behavioural and emotional problems of their child with ID. Telephone interviews were conducted to assess maternal EE towards the child with ID and towards a sibling using the Five Minute Speech Sample (FMSS; Magana et al. 1986 ), and also to assess the adaptive behaviour of the child with ID using the Vineland Adaptive Behaviour Scale (VABS; Sparrow et al. 1984 ). Results Mothers with high EE towards their child with ID were more satisfied with their parenting ability, and their children had more behaviour problems. Analysis of differential maternal parenting, through comparisons of EE towards their two children, showed that mothers were more negative towards their child with ID for all domains of the FMSS except dissatisfaction. Conclusions A small number of factors associated with maternal EE towards children with ID were identified. Differences in maternal EE towards their child with ID and their other child suggest that EE is child‐driven rather than a general maternal characteristic. Implications of the data for future research are discussed.     

Self-concept of children with cerebral palsy compared with that of children without impairment

This study examined whether the self-concept of children with cerebral palsy (CP) differed from that of children without impairment. Forty-seven children (24 males, 23 females; mean age 11y 8mo [SD 2y 6mo]) with spastic diplegia or hemiplegia were matched with children without impairment. The level of disability of the children with CP was classified as Gross Motor Function Classification System Level I (n=24), Level II (n=16), or Level III (n=7). The 36-item Self-Perception Profile for Children was used to assess six domains of self-concept. No difference was found between the groups for Global Self-worth, Physical Appearance, or Behavioural Conduct. Children with CP scored lower on Scholastic Competence (t(92)=-2.75, p=0.01), Social Acceptance (t(92)=-1.96, p=0.05), and Athletic Competence (t(92)=-3.63, p<0.01) than children without impairment. Males with CP had lower scores for Scholastic Competence (t(46)=-3.54, p<0.01) than males without impairment. Females with CP had lower scores for Social Acceptance (t(44)=-2.31, p=0.03) than females without impairment. Both males and females with CP had lower scores for Athletic Competence than their peers without impairment. These results suggest that children with CP do not have a lower Global Self-worth even though they may feel less competent in certain aspects of their self-concept. Clinicians need to account for this when deciding on management strategies and may need to educate parents, carers, and health professionals that a lower self-concept may not necessarily be associated with a diagnosis of CP.     

Working memory performance in children with and without intellectual disabilities

Performance on working memory span tasks by children with intellectual disabilities ages 11 to 12 was compared to that of CA- and MA-matched controls. Limited evidence was available to support a "difference" position, whereby the intellectual disabilities group obtained lower scores than both the CA and MA groups. Some evidence was found for the "developmental" position, whereby the intellectual disabilities group performed at the same level as the MA group but more poorly than the CA-matched group. Finally, some evidence supported an unconventional "difference" account; children in the intellectual disabilities group performed better than the MA group, although still not as well as the CA-matched group. Results were interpreted with reference to the role of strategies in working memory performance.     

Survival rates of children with severe neurologic disabilities: a review

Knowledge of accurate survival rates of children with neurologic disabilities is important for third-party insurance payers planning future medical expenses. This is of particular importance to pediatric skilled nursing facilities (SNFs) that depend on financial support from governmental sources. Eyman published survival rate results from California that were extremely pessimistic and not in keeping with our clinical impressions. This led us to conduct a thorough review of our survival rates, which were much better than those reported by Eyman. Since the publication of our study, a large number of reports have appeared from many different countries, as well as further information from California using an expanded database. The survival rate data that we obtained remain consistently better than that in most recent reports. In the California results, 10-year survival rates for the most-disabled group (group 1) were reported to be 32% in 1993 and 45% in 1998, compared with 73% in our study. Eight-year survival rates for group 1 from California were reported to be 38% in 1993 and 63% in 2000, compared with our finding of 73%. The reasons for our better survival rates include the fact that all of our patients were in SNFs, where prompt medical care for acute illnesses was always provided, whereas only 3.5% of the study group was in SNFs in California. Also, the California data contained many methodologic and statistical errors, which are reviewed here.     

Stability of measures of the home environment for families of children with severe disabilities

The stability of home environment in families of children with severe disabilities was investigated. Sixty-four families were assessed at three time points regarding aspects of their home environment. Family environment scale, home quality rating scale (HQRS) and home observation for measurement of the environment scores were collected at 7 and 9 years after the initial assessment. A remarkable degree of stability was observed, particularly for the FES. The median change score was zero for most subscales; no correlations differed significantly between the 7- and 9-year retests. A repeated measures MANOVA found a significant change in scores over time for only one subscale of the HQRS but none of the 10 FES subscales. Results suggest that, for the FES, administration of these measures every 2 years, perhaps less often, would be sufficient in longitudinal studies of this population. Internal consistency reliability of the FES was lower for these families than in the standardization samples, emphasizing the need to validate measures used with special populations.     

Empowerment in parents of school-aged children with and without developmental disabilities

Background Despite the widespread use of the term ‘empowerment’ in clinical literature to describe both a desirable process and the outcome of service delivery, the term remains more of a theoretical than practical construct. This study examined the factors that contribute to empowerment in parents of school-aged children with and without developmental disabilities (DD) using the Double ABCX model of family adaptation contrasted with the linear ACBX model. Methods Parents of children with (n = 100, 97% mothers) and without (n = 100, 98% mothers) DD completed questionnaires relating to child behaviour problems, parent stress and well-being, and formal and informal support. Structural equation modelling was used Results Parents of children with DD reported more child behaviour problems, more stress, less well-being and more social support than parents of children without DD. Structural equation modelling supported the ACBX model for both groups. A linear relationship was found in which parent well-being and resources mediated the relationship between the stressor (child behaviour problems) and the outcome (empowerment). Conclusions The results of the current study support Hastings and Taunt's assertion in 2002, in that empowerment was adequately explained using a traditional model of family functioning. The significant prediction offered by the parent's resources points to the need to deliver services in a manner that is more family-centred. In the education system, this means providing parents with clear messages regarding the schools goals, clarifying the parent's rights and responsibilities, including the parent in planning and decision making, respecting their knowledge as caregivers and supporting their hopes for their child.     

Barriers to the effectiveness of EPSDT for children with moderate and severe developmental disabilities

Barriers were examined to the effectiveness of the EPSDT program for children with moderate and severe developmental disabilities. Responses from parents of 281 Michigan children and from the 45 directors of local EPSDT clinics were used to identify three sets of barriers. Strategies to overcome these obstacles are presented and implications for services are discussed.     

Ethical attitudes of Japanese physicians regarding life-sustaining treatment for children with severe neurological disabilities

Ethical attitudes of Japanese physicians regarding life-sustaining treatment for children with severe neurological disabilities (SND) were investigated by mailing a translated questionnaire which the Child Neurology Society (CNS) of the United States used for their survey. The questionnaire was sent to 202 council members of the Japanese Society of Child Neurology (JSCN), and the answers of 147 respondents (72.8%) were analyzed.It was found that the majority (85. 0%) of respondents believed that the same level of care should be provided to children with SND as those without it. However, fewer respondents (15.6%) believed that cardiopulmonary resuscitation was indicated for children with progressive or degenerative brain disorders.With respect to the authoritative role of medical indications and family/guardian's wishes in clinical decision-making for children with SND, about 30% of respondents believed that medical indications should override family/guardian's wishes. However, almost as many respondents (29.9%) chose an ambivalent answer. If compared with the results of the preceding CNS survey, considerably more respondents gave ambivalent answers (average 26. 6%) than in the CNS survey (5.8%). About half of the respondents (49. 0%) acknowledged the need for ethical guidelines to help physicians make ethically difficult decisions. Although statistical comparison was not possible, there were considerable differences between the results of the current study and those of the CNS survey.     

Comparing the quality of life of school-age children with and without disabilities

Quality of life of 76 school-age children with identified disabilities receiving special education services in public schools was compared to quality of life of 64 students without disabilities enrolled in Grades K-12. The Quality of Student Life Questionnaire (QSLQ) was used. Results indicated that the scores of students with disabilities were lower on all scales. The differences were significant in three of the four quality of life factors of the QSLQ scales: Satisfaction, p <.001, Well-Being, p <.01, Social-Belonging, p <.001, and total QSLQ scores, p <.001. Findings suggest that we have not yet achieved parity in quality of life for children with disabilities. The concept of quality of life is discussed in the context of needs for future intervention.     

Risk factors of malnutrition in children with severe motor and intellectual disabilities

BackgroundChildren with severe motor and intellectual disabilities (SMID) are at a high risk of malnutrition and often require tube feeding to maintain their nutritional status. However, determining their energy requirements is difficult since inadequate dietary intake, severe neurological impairment, respiratory assistance, and cognitive impairment are all factors that affect malnutrition in SMID.AimThis study investigated the factors affecting malnutrition and identified problems affecting the nutritional status of children with SMID.MethodsForty-two children with SMID with oral motor dysfunction who were receiving home medical care at one of four hospitals were enrolled. Their nutritional status was assessed using a 3-day dietary record, anthropometric measurements, and laboratory tests. The clinical findings associated with malnutrition were compared, and a body mass index (BMI) z-score less than −2SD was defined as malnutrition. The relationship between BMI z-score and other potential predictors was also investigated.ResultsThirty-three (79%) children received tube feeding, and 20 (48%) experienced malnutrition. The median age of the malnourished children was older than that of non-malnourished children. Respiratory assistance was significantly correlated with higher BMI z-score, independent of other potential confounders such as nutrition method, muscle tonus, and energy intake. Cholesterol levels were significantly higher in children receiving a standard infant formula beyond 3 years of age than in those who switched to enteral formula before 3 years of age.ConclusionsMalnutrition in children with SMID was mainly associated with age or respiratory condition. Energy requirements should be regularly re-evaluated with considering these factors.