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.     

Mothers of children with developmental disabilities: Stress in early and middle childhood

Using a sample of 219 families of children with (n = 94) and without (n = 125) developmental disabilities, this study examined the longitudinal perspectives of maternal stress in early (ages 3–5) and middle childhood (ages 6–13) and its relationship to mothers’ and children's characteristics. Multivariate latent curve models indicated that maternal stress remained high and stable with minimal individual variation in early childhood, but declined with significant individual variation in middle childhood. Maternal stress at the beginning of middle childhood was associated with earlier maternal stress, as well as children's behavioral problems and social skills. The trajectory of maternal stress across middle childhood was related to children's behavioral problems. Implications for interventions are discussed.     

Pain disrupts sleep in children and youth with intellectual and developmental disabilities

Both chronic pain and sleep problems are common for children with intellectual and developmental disabilities (IDD). Although one study has revealed a relationship between having a medical condition and sleep problems in this population, the role of pain was not examined independently. Thus, the goal of this study was to clarify the specific role of pain in children's sleep problems. Caregivers of 123 children with IDD (67 male; mean age = 10 years, 7 months (SD = 49.7 months)) completed the Children's Sleep Habits Questionnaire (CHSQ) and provided information about children's pain, function and demographic characteristics. Children were grouped as having: No Pain (86), Treated Pain (21), or Untreated Pain (16). A Multivariate Analysis of Variance (MANOVA) indicated children who had pain had significantly more sleep problems overall (F(16, 222) = 2.2, p = .005), and more Night Wakings (F(2, 118) = 3.1, p = .05), Parasomnias (F(2, 118) = 5.0, p = .009) and Sleep Disordered Breathing (F(2, 118) = 5.1, p = .008) in particular. The pattern of sleep problems varied due to whether the child was taking pain medication. Children with pain also had significantly shorter typical sleep duration (F(2, 112) = 3.5, p = 0.035). The presence of sleep problems did not vary due to functional level or whether children were taking sleep medications. However, parents of children who were taking sleep medications reported that both Bedtime Resistance (F(1, 121) = 5.7, p = .019) and Sleep Duration (F(1, 121) = 6.0, p = .016) were more problematic for them. This data indicates pain disrupts sleep in children with IDD even when it is being managed pharmacologically, suggesting pain treatment may not be effective. These results suggest that pain should be considered during evaluation and management of sleep problems in children with IDD.     

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.     

The effectiveness of aripiprazole in the management of problem behaviour in people with intellectual disabilities,developmental disabilities and/or autistic spectrum disorder – A systematic review

The management of problem behaviours (PB) in individuals with intellectual disabilities (ID), developmental disabilities (DD) and/or autistic spectrum disorders (ASD) can be challenging. Antipsychotic medications are commonly prescribed where other strategies have failed. A systematic review (SR) was conducted to establish the research evidence for the efficacy of aripiprazole in the management of PB in adults and children with ID, DD and/or ASD. Although included studies supported the efficacy of aripiprazole for this indication, the overall quality of studies was poor. Of the 20 studies included in this systematic review there were only two randomised controlled trials (RCTs) on children with ASD and/or ID/DD, both of which were conducted by the pharmaceutical company that manufactures aripiprazole, and it is not clear whether a number of same participants were included in both RCTs. One of the RCTs was extended into an open label long term follow up, which showed that aripiprazole's efficacy lasted over 52 weeks and the adverse effects were tolerable. Four studies were open label prospective studies, 11 were retrospective case reports which included four single case reports, and two were prospective case series. Most studies reported adverse effects from aripiprazole in the form of weight gain, increased appetite, sedation, tiredness, drooling and tremor. However, aripiprazole improved serum prolactin level in some participants and overall did not show any adverse effect on QTc interval. There is a need for more carefully designed RCTs into the use of aripiprazole in the management of PB in people with ID/DD and/or ASD, which should be carried out independent of pharmaceutical companies.     

The influence of the family environment on adaptive functioning in the classroom: A longitudinal study of children with developmental disabilities

BackgroundNo study has examined trajectories of school-based adaptive functioning (AF) for children with developmental disabilities (DD). This is a critical gap in the literature, since AF is context dependent, and high levels of AF at school facilitate meaningful participation at school.AimsThis study examined trajectories of school-based AF for 170 children with DD from age 3 to 15 years, and indicators of the early childhood home and family environment as predictors of these trajectories.MethodsMultilevel modeling was used to explore trajectories of school-based AF and identify early childhood home and family predictors of these trajectories.ResultsChildren’s school-based AF raw scores increased over time. There was significant variability in initial status and rate of change of AF. As hypothesized, higher quality mother-child interaction predicted more positive functioning.ConclusionsFindings indicate the influence of the early childhood home and family environment on school-based AF over time.     

The siblings relationship of adolescents with and without intellectual disabilities

The sibling relationship of adolescents with and without intellectual disabilities was examined. Participants were 70 sibling dyads - each dyad was comprised of one 12-year old adolescent with (N = 23) or without intellectual disabilities (N = 47). Sibling relationships, behavior problems, and social skills were assessed using mother reports. Results revealed three findings. First, for typically developing adolescents, mothers reported more warmth in the sibling relationship for opposite sex dyads. For adolescents with intellectual disabilities, mothers reported more warmth in the sibling relationship for same-sex dyads. Second, for typically developing adolescents, mothers reported more status/power differences when the sibling was younger than when the sibling was older. For adolescents with intellectual disabilities, birth order did not affect status/power in the sibling relationship. Third, for typically developing adolescents, conflict was related to internalizing behavior problems. For adolescents with intellectual disabilities, conflict was related to externalizing behavior problems. Implications, limitations, and future directions are discussed.     

The developmental health of children of parents with intellectual disabilities: Cross sectional study

In a representative population-based sample of 46,025 families caring for a young child, parental intellectual disability (identified in 588 families) was associated with increased risk of child developmental delay, child speech and language problems, child behaviour problems and frequent child accidents and injuries. Parental intellectual disability was also associated with increased risk of exposure to a wide range of environmental adversities such as poverty, poor housing and social isolation. Adjusting for between-group differences in exposure to low socio-economic position reduced the risk of adverse child outcomes by over 50% on each of the four measures of child developmental health. In the final fully adjusted model parental intellectual disability was associated with increased risk of child developmental delay and child speech and language problems. However, there were no significant associations between parental intellectual disability and child behaviour problems or frequent accidents and injuries.     

Parent training: A review of methods for children with developmental disabilities

Great strides have been made in the development of skills and procedures to aid children with developmental disabilities to establish maximum independence and quality of life. Paramount among the treatment methods that have empirical support are treatments based on applied behavior analysis. These methods are often very labor intensive. Thus, parent involvement in treatment implementation is advisable. A substantial literature on parent training for children has therefore emerged. This article reviews recent advances and current trends with respect to this topic.     

A consecutive case series analysis of a behavioral intervention for enuresis in children with developmental disabilities

Children with developmental disabilities (DD) are more likely than typically developing peers to have issues with enuresis. Past research has shown the success of behavioral treatments consisting of scheduled sits and reinforcement for continent voids. However, this research has included small sample sizes, while studies with larger numbers have lacked key information (i.e., baseline rates and follow-up data to evaluate maintenance and generalization). The current study conducted a consecutive case series analysis of 44 individuals with developmental disabilities who completed a 2-week program for enuresis. Results showed significant improvement in continent voids and follow-up data suggested positive results maintained when treatment was implemented by caregivers in a home environment.     

Effects of ordinary and adaptive toys on pre-school children with developmental disabilities

Toys help children in mastering developmental tasks. This study investigated toy effect on children with developmental disabilities as they engage in using ordinary and adaptive toys. A single-subject design was used to identify the effects on their toy play abilities. Differences in toy effects between playing ordinary and adaptive toys were examined. Three special education teachers chose ordinary toys and modified ordinary toys. Modified ordinary toys, i.e., adaptive toys, were designed according to the individual disabilities of participating children, treatment goals, and the toy types. Three children with developmental disabilities from pre-schools in Taiwan were enrolled. Appropriate participation of three pre-schoolers increased dramatically in playing adaptive toys during intervention phase. The toy effects demonstrate that when using adaptive toys, children with developmental disabilities may response better during toy play sessions.     

Pica in persons with developmental disabilities: Approaches to treatment

Pica is a very serious problem in which an individual ingests substances without nutrition value, such as paper and paint. As this behavior is often life-threatening resulting in surgery, pica has received attention from researchers for several decades. During that time, a number of interventions have been devised, such as behavioral methods (e.g., aversive stimuli, overcorrection, time-out, reinforcement) and biological interventions (e.g., pharmacotherapy, nutritional supplements). This paper is a broad review of the research on treatment studies for this problem, with a focus on persons with autism and/or intellectual disability (ID), which constitutes almost all of the published treatment papers. In addition, strengths and weaknesses of different pica treatments are discussed. Upon review, applied behavior analysis (ABA) was found to have the most robust empirical support to treat this behavior. Most clinicians are drifting away from aversive techniques and relying on more positive procedures to guide their treatment plans. The implications of current status and future directions for research are also addressed.     

Children with cochlear implants and developmental disabilities: a language skills study with developmentally matched hearing peers

The number of children receiving cochlear implants (CIs) with significant disabilities in addition to their deafness has increased substantially. Unfortunately, children with additional disabilities receiving CIs have largely been excluded from studies on cochlear implant outcomes. Thus limited data exists on outcomes in this population to guide pre-implant counseling for anticipated benefits. The study objectives were: (1) evaluate differences in post-cochlear implant language skills between children with cochlear implants and developmental disabilities and age/cognitively matched controls; (2) quantify possible discrepancies between language level and cognitive level. Fifteen children with a developmental disability who received a CI were matched 1:1 on nonverbal cognitive ability and age to hearing controls. Language was evaluated using Preschool Language Scale-IV and reported as language quotients. Multivariable mixed models for matched pairs analyzed differences in language levels between groups. No significant differences were seen between CI and control groups regarding insurance, maternal education, or family income level. Results of the multivariable models indicated that compared to matched controls, the CI group had significantly lower mean receptive (24.6 points, p = 0.002) and mean expressive (21.9 points, p = 0.001) language quotients after controlling for confounders such as number of therapies and weekly hours in therapy. Significant discrepancies between language level and cognitive level were seen among CI participants only. Compared to age- and cognitively matched controls, children with CIs had significantly lower language levels with delays disproportionate to their cognitive potential. Mechanisms behind this performance-functional gap need to be understood to deliver appropriate intervention strategies for this special population.     

Physical Illness,Pain, and Problem Behavior in Minimally Verbal People with Developmental Disabilities

There is growing interest in the role that physical illness and pain might play in exacerbating problem behavior in individuals with developmental disabilities. Assessment of these factors, however, is often difficult since many individuals have minimal verbal communication skills. In response to this difficulty, we developed a sequential method of assessment involving retrospective and prospective measurement strategies. We found that the frequency and intensity of problem behavior was greater on “sick” days than on “well” days. Further, the higher the level of pain, the greater was the frequency and intensity of problem behavior. We discuss the concept of pain as a setting event for problem behavior and the intervention strategies that follow from this conceptualization.     

Parenting stress and child behavior problems within families of children with developmental disabilities: Transactional relations across 15 years

Parents of children with developmental disabilities (DD) are at increased risk of experiencing psychological stress compared to other parents. Children's high levels of internalizing and externalizing problems have been found to contribute to this elevated level of stress. Few studies have considered the reverse direction of effects, however, in families where a child has a DD. The present study investigated transactional relations between child behavior problems and maternal stress within 176 families raising a child with early diagnosed DD. There was evidence of both child-driven and parent-driven effects over the 15-year study period, spanning from early childhood (age 3) to adolescence (age 18), consistent with transactional models of development. Parent–child transactions were found to vary across different life phases and with different domains of behavior problems.     

A prospective cohort study comparing workload in children with and without developmental coordination disorder

The purpose of this prospective cohort study was to assess how cardiorespiratory fitness (CRF) of children with probable developmental coordination disorder (DCD) changes over a period of 4.7 years relative to a group of typically developing controls. A school-based sample of children in a large region of Ontario, Canada with 75 out of a possible 92 schools consented to participate. Children enrolled in Grade 4 (mean = 9.9 years, SD = 0.35) at baseline (n = 2278) were followed over the course of 56 months. A total of eight waves of data collection were carried out throughout the study period. The short form of the Bruininks-Oseretsky test of motor proficiency was used to identify children with probable DCD and the maximal speed attained on the Léger 20-m shuttle run to measure CRF. Mixed-effects modeling was used to estimate the change over time in maximal Leger run speed for both groups adjusting for relevant covariates (e.g., gender, BMI, school, activity level, predilection for activity). Children with pDCD had consistently lower maximal run speed relative to controls. The trajectories of run speed in children with probable DCD and those without the disorder differed by gender with pDCD females demonstrating the lowest scores over time. Both genders with probable DCD showed a greater rate of decline in CRF over time relative to the controls. In conclusion, the difference in CRF between children with and without probable DCD is substantial, and it tends to increase over time. This adds to the argument suggesting that interventions intended to improve CRF may be appropriate and necessary for children with motor difficulties.     

Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables

Studies have shown that stigmatization is linked to lower quality of life; however, only scant research has examined the association between family caregivers’ internalization of stigma (affiliate stigma) and their subjective quality of life (subjective well-being, SWB). Furthermore, studies have rarely examined this association via comparison between caregivers of individuals with different developmental disabilities in addition to examining the influence of psychosocial protective factors. These were the aims of the current study. Family caregivers (N = 176) of individuals with autism spectrum disorders (ASD), intellectual disabilities (ID), and physical disabilities (PD) completed a self-report structured questionnaire including scales measuring SWB, affiliate stigma, burden, positive meaning in caregiving, social support and self-esteem. Results showed that SWB of family caregivers was below the average normative level and especially low for caregivers of individuals with ASD. The strongest predictors of SWB were caregivers’ self-esteem, social support, positive meaning in caregiving, and affiliate stigma. Furthermore, an interaction was found between affiliate stigma and diagnosis, showing that among caregivers of individuals with ASD, greater levels of stigma were associated with lower ratings of SWB, whereas such an association was not found among caregivers of individuals with ID or PD. Findings from this study point to the importance of supporting caregivers across the life-span in order to decrease stigma, improve social support and self-esteem and improve SWB. Further, findings point to the need to respond differentially to the various developmental disabilities.     

Social support and mastery influence the association between stress and poor physical health in parents caring for children with developmental disabilities

To date, much of the research linking the stress of caring for children with developmental disabilities (e.g. Autism & Down syndrome) with parental health outcomes have tended to concentrate on mental health with less attention paid to the physical health consequences. Thus, this study sought to explore the psychosocial predictors of poor physical health in these caring parents. One hundred and sixty-seven parents (109 caregivers and 58 control parents) completed measures of stress, child problem behaviours, social support, mastery and physical health. Parents of children with developmental disabilities had poorer physical health compared to control parents. Stress and mastery, but not social support and problem behaviours, were significant predictors of poor physical health within caring parents for children with developmental disabilities. However, the association between mastery and physical health was mediated by perceived stress such that those parents who were higher on mastery reported less stress and better physical health; furthermore, the association between stress and physical health was moderated by social support; those parents high on social support and low in stress had better physical health. These results indicate that the paths between psychosocial factors and poor physical health in the caring parents are working synergistically rather than in isolation. They also underscore the importance of providing multi-component interventions that offer a variety of psychosocial resources to meet the precise needs of the parents.