Parenting stress in mothers of children with an intellectual disability: the effects of parental cognitions in relation to child characteristics and family support

Background Recent theories of stress and coping in parents of children with intellectual disabilities (ID) emphasize the importance of cognitive appraisals in influencing parents’ levels of stress and their adaptations to difficulties presented by the children. This study investigated the relationships between parental cognitions, child characteristics, family support and parenting stress. The aspects of cognitions studied were: parenting self-esteem (including efficacy and satisfaction) and parental locus of control. Methods The group studied consisted of 46 mothers of children with ID. The Vineland Adaptive Behavior Scales and Maladaptive Behavior Domain were administered by interview. Mothers also completed four questionnaires: the Family Support Scale, the Parenting Sense of Competence Scale, a shortened form of the Parental Locus of Control Scale and the Parenting Stress Index (Short Form). Results Data were analysed using Pearson's correlation coefficients, partial correlations and a regression analysis. The results indicated that most of the variance in parenting stress was explained by parental locus of control, parenting satisfaction and child behaviour difficulties. Whilst there was also a strong correlation between family support and parenting stress, this was mediated by parental locus of control. Conclusions The results demonstrate the potential importance of parental cognitions in influencing parental stress levels. It is argued that these results have implications for clinical interventions for promoting parents’ coping strategies in managing children with ID and behavioural difficulties.     

Resilience and the course of daily parenting stress in families of young children with intellectual disabilities

Background Parenting stresses have consistently been found to be higher in parents of children with intellectual disabilities (ID); yet, some families are able to be resilient and thrive in the face of these challenges. Despite the considerable research on stress in families of ID, there is still little known about the stability and compensatory factors associated with everyday parenting stresses. Methods Trajectories of daily parenting stress were studied for both mothers and fathers of children with ID across child ages 36–60 months, as were specific familial risk and resilience factors that affect these trajectories, including psychological well‐being of each parent, marital adjustment and positive parent–child relationships. Results Mothers' daily parenting stress significantly increased over time, while fathers' daily parenting stress remained more constant. Decreases in mothers' daily parenting stress trajectory were associated with both mother and father's well‐being and perceived marital adjustment, as well as a positive father–child relationship. However, decreases in fathers' daily parenting stress trajectory were only affected by mother's well‐being and both parents' perceived marital adjustment. Conclusions Parenting stress processes are not shared entirely across the preschool period in parents of children with ID. Although individual parent characteristics and high‐quality dyadic relationships contribute to emerging resilience in parents of children with ID, parents also affect each others' more resilient adaptations in ways that have not been previously considered.     

Parents' emotion expression as a predictor of child's social competence: children with or without intellectual disability

Background Parents' expression of positive emotion towards children who are typically developing (TD) is generally associated with better social development. However, the association between parents' negative emotion expression and social development can be positive or negative depending upon a number of factors, including the child's emotion regulation abilities. Given the lower emotion regulation capabilities of children with intellectual disability (ID), we hypothesised that parents' negative emotion expression would be associated with lower social development in children with ID compared to those with TD. Methods Participants were 180 families of children with or without ID enrolled in a longitudinal study. Parents' positive and negative affect were coded live from naturalistic home interactions at child ages 5–8 years, and child's social skills were measured by using mother report at child ages 6–9 years. We examined mothers' and fathers' emotion expression as a time‐varying predictor of social skills across ages 5–9 years. Results Mothers, but not fathers, expressed less positive affect and more negative affect with ID group children. Parents' positive affect expression was related to social skills only for TD children, with mothers' positive affect predicting higher social skills. Contrary to expectations, fathers' positive affect predicted lower social skills. Parents' negative affect predicted significantly lower social skills for children with ID than for children with TD. Conclusions Findings support the theory that low to moderate levels of negative expression may be less beneficial or detrimental for children with ID compared to children with TD. Implications for further research and intervention are discussed.     

Preschool children with and without developmental delay: behaviour problems, parents' optimism and well-being

Background Children with intellectual disability are at heightened risk for behaviour problems, and these are known to increase parenting stress. This study explored the relation of behaviour problems to less child-related domains of parent well-being (depression and marital adjustment), as well as the moderating effect of a personality trait, dispositional optimism. Method Participating children (N = 214) were classified as developmentally delayed, borderline, or nondelayed. Mothers’ and fathers’ well-being and child behaviour problems were assessed at child ages 3 and 4 years. Results Parents of delayed and nondelayed preschoolers generally did not differ on depression or marital adjustment, but child behaviour problems were strongly related to scores on both measures. Optimism moderated this relationship, primarily for mothers. When child behaviour problems were high, mothers who were less optimistic reported lower scores on measures of well-being than did mothers who were more optimistic. Conclusions Interventions for parents that aim to enhance both parenting skills and psycholog- ical well-being should be available in preschool. It may be beneficial for such programmes to focus not only on behaviour management strategies aimed at child behaviour change, but also on parents’ belief systems, with the aim of increasing dispositional optimism.     

Adaptive functioning and behaviour problems in relation to level of education in children and adolescents with intellectual disability

Background The interrelationship between adaptive functioning, behaviour problems and level of special education was studied in 186 children with IQs ranging from 61 to 70. The objective was to increase the insight into the contribution of adaptive functioning and general and autistic behaviour problems to the level of education in children with intellectual disability (ID). Methods Children from two levels of special education in the Netherlands were compared with respect to adaptive functioning [Vineland Adaptive Behavior Scales (VABS)], general behaviour problems [Child Behavior Checklist (CBCL)] and autistic behaviour problems [Autism Behavior Checklist (ABC)]. The effect of behaviour problems on adaptive functioning, and the causal relationships between behaviour problems, adaptive functioning and level of education were investigated. Results Children in schools for mild learning problems had higher VABS scores, and lower CBCL and ABC scores. The ABC had a significant effect on the total age equivalent of the VABS in schools for severe learning problems, the CBCL in schools for mild learning problems. A direct effect of the ABC and CBCL total scores on the VABS age equivalent was found, together with a direct effect of the VABS age equivalent on level of education and therefore an indirect effect of ABC and CBCL on level of education. Conclusions In the children with the highest level of mild ID, adaptive functioning seems to be the most important factor that directly influences the level of education that a child attends. Autistic and general behaviour problems directly influence the level of adaptive functioning. Especially, autistic problems seem to have such a restrictive effect on the level of adaptive functioning that children do not reach the level of education that would be expected based on IQ. Clinical implications are discussed.     

The early development of self-injurious behaviour: evaluating the role of social reinforcement

Background The potential role of social reinforcement in the development of self-injury has not yet been subjected to empirical analysis. In this 2-year prospective study, the pattern of social interactions related to the early presentation of self-injury were examined to identify a potential association with an increase in self-injury. Methods The self-injurious behaviour and social contact with adults of 16 children with intellectual disability (ID) with self-injury of recent onset were observed at 3-month intervals over 2 years. Results Increase in self-injury over a 2-year period was positively correlated with a distribution of social contact relative to episodes of self-injury that is consistent with a mutual social reinforcement paradigm. When this paradigm was operative, self-injury was evoked under stable antecedent conditions over time but tended to evoke increasing levels of social interaction. Conclusions These results support the hypothesis that increases in the frequency of early self-injury in children with ID may be determined by social reinforcement with implications for early intervention and proactive identification of children at risk for increases in self-injury.     

Staying in the here‐and‐now: A pilot study on the use of dialectical behaviour therapy group skills training for forensic clients with intellectual disability

Background Dialectic behaviour therapy (DBT) has been widely used with individuals diagnosed with borderline personality disorder who exhibit severe emotional and behavioural dysregulation. There is a paucity of research in assessing the effectiveness of DBT with forensic clients with intellectual disability (ID). Methods This pilot study aims to evaluate the effectiveness of the DBT group skills training programme adapted particularly for offenders with ID. Six participants completed the 13‐week adapted DBT group skills training programme. All participants exhibited challenging behaviours and have a history of prior charges or convictions for violent crimes. The study conducted pre‐ and post‐tests using instruments that measured dynamic risks, relative strengths, coping skills and global functioning. Results The study result showed improvement across all measures. A decrease in the level of risks, increase in relative strengths and general improvement in overall functioning were found significant. The results were promising particularly as a stand‐alone adapted DBT group skills training programme for this client group.     

Service use and access in young children with an intellectual disability or global developmental delay: Associations with challenging behaviour

Background Challenging behaviours are frequently shown by children with an intellectual disability. This study documents service use within this population and explores its relationship with challenging behaviours and child and parent characteristics.

Method Forty-nine mothers of young children with an intellectual disability or global developmental delay completed questionnaires focusing on child behaviour, parental mental health, and service use.

Results Maternal mental health was not associated with services accessed. Cost of services accessed differed by topography of challenging behaviour for destruction of the environment or aggression. No differences were noted for self-injurious behaviour.

Conclusion In this small study, topography of challenging behaviour impacts on the frequency and/or duration (and therefore cost) of community-based health care accessed. Behaviours that have external impact, such as aggression and destruction of the environment, are associated with a higher cost of services used, a pattern not noted for behaviours that had less external impact (e.g., self-injurious behaviour).     

Factors affecting the risk of behaviour problems in children with severe intellectual disability

In order to examine the importance of a range of potential risk factors for behaviour problems in children with severe intellectual disability, a sample was identified by the administration of a screening version of the Vineland Adaptive Behaviour Scales (VABS) to the parents of children aged 4–11years attending six special needs schools in three adjacent inner London boroughs. Parents whose children had a VABS standard score of 50 were interviewed using the Disability Assessment Schedule and both parents and teachers completed the Aberrant Behaviour Checklist. Most behaviour problems were more common in ambulant children, but problems less dependent on the ability to walk, such as sleeping difficulties, screaming and self-injury, were equally common in ambulant and non-ambulant children. Among ambulant children, there were few significant associations between the severity of the child's behaviour problems and the age or sex of the child, the presence or absence of epilepsy, and various indices of socio-economic disadvantage. Sleeping difficulties, overactivity, self-injury, destructive behaviour and autistic features, such as social withdrawal and stereotypies, were strongly associated with skills deficits, but aggression, temper tantrums and general disruptive behaviour were not. Limitations in daily living skills were better predictors of behaviour problems than were poor communication skills.     

Preschool children with intellectual disability: syndrome specificity, behaviour problems, and maternal well-being

Background Children with intellectual disability (ID) are at heightened risk for behaviour problems and diagnosed mental disorder. Likewise, mothers of children with ID are more stressed than mothers of typically developing children. Research on behavioural phenotypes suggests that different syndromes of ID may be associated with distinct child behavioural risks and maternal well-being risks. In the present study, maternal reports of child behaviour problems and maternal well-being were examined for syndrome-specific differences. Methods The present authors studied the early manifestation and continuity of syndrome-specific behaviour problems in 215 preschool children belonging to 5 groups (typically developing, undifferentiated developmental delays, Down syndrome, autism, cerebral palsy) as well as the relation of syndrome group to maternal well-being. Results At age 3, children with autism and cerebral palsy showed the highest levels of behaviour problems, and children with Down syndrome and typically developing children showed the lowest levels. Mothers of children with autism reported more parenting stress than all other groups. These syndrome-specific patterns of behaviour and maternal stress were stable across ages 3, 4 and 5 years, except for relative increases in behaviour problems and maternal stress in the Down syndrome and cerebral palsy groups. Child syndrome contributed to maternal stress even after accounting for differences in behaviour problems and cognitive level. Conclusions These results, although based on small syndrome groups, suggest that phenotypic expressions of behaviour problems are manifested as early as age 3. These behavioural differences were paralleled by differences in maternal stress, such that mothers of children with autism are at elevated risk for high stress. In addition, there appear to be other unexamined characteristics of these syndromes, beyond behaviour problems, which also contribute to maternal stress.     

Parenting by persons with intellectual disability: an explorative study in the Netherlands

Background As a sequel to a report by the Health Council of the Netherlands on contraception in persons with intellectual disabilities (IDs), a fierce debate about parenthood by such persons occurred, in which a lack of knowledge about parenting competences became clear. Therefore, the Ministry of Health commissioned a study investigating examples of ‘successful parenthood’ by persons with IDs. Methods In conformity with the literature and with legal categories, we defined ‘successful parenthood’ as ‘good enough parenthood’, meaning no indications for child abuse and/or neglect, no dealings with child protection agencies and no legal custody. We combined a nationwide quantitative questionnaire study with a qualitative interview study. Questionnaires were sent to all institutions involved in caring for persons with ID, interviews were held with ‘good enough’ parents and their professional caregivers, selected on the basis of returned questionnaires. Results Parenthood occurs in around 1.5% of persons with ID in the Netherlands and is mostly restricted to those with mild handicaps. In total, 51% of the cases were regarded, by caregivers, as not‐good‐enough parenthood, 33% were clearly good enough and 16% were doubtful. Predicting factors included the ability and the willingness to follow advice, the quality of the social network and the acceptance of parenting in the community. However, there is not one decisive predicting factor; particularly, the predictive value of the IQ alone is small. Conclusions A general policy of discouragement of parenthood, as advocated by the Dutch Ministry, is not supported by our results; moreover, it would probably be impossible and have negative effects on social acceptance of parents with ID. The overall conclusion from the study therefore is that some kind of balancing model, in which positive and negative factors are weighed, may be useful to predict success and need for support.     

Factors associated with the risk of behaviour problems in adolescents with severe intellectual disabilities

Background Little is known about the factors affecting the risk of behavioural and emotional problems in young people with severe intellectual disability (ID), although such evidence as there is suggests that there may be differences between the pattern of risk factors in this group and those that operate in general population samples of the same age. Method From a sample of 111 children with severe ID who had been initially identified from the registers of six special schools at 4–11 years, 82 were traced and reassessed on average 5 years 4 months later. The relationships between potential risk factors and behaviour problems, reported here for 11:00–17:04 year olds, were assessed by means of parental interview conducted in the family home. Results Behaviour problems were associated with the severity of ID and the severity of autistic symptomatology. Perhaps surprisingly, they were also more common in pre‐pubertal than post‐pubertal adolescents. Family factors such as a history of interrupted/disrupted maternal care, parental criticism of the child and aggressive parental disciplinary practices were also associated with behaviour problems, although the direction of causation was unclear. Several factors, including gender, social disadvantage and epilepsy, well established as risk factors in children without ID, were not significantly associated with behaviour problems in the present sample. Conclusion The findings suggest that the pattern of factors associated with behaviour problems in children with severe ID differs from that found both in the general population and in children with mild ID.