The longitudinal relationship between behavior and emotional disturbance in young people with intellectual disability and maternal mental health

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Abstract

Although elevated rates of parent psychosocial distress have been associated with child behavior and emotional problems, little is known about the nature of this relationship over time. This study followed an epidemiological cohort of children and adolescents over 11 years with 4 waves of data collection. Within this cohort, complete data were available on 238 mothers and their children. Behavior and emotional problems were assessed using the DBC, maternal mental health with the GHQ. Multivariate growth curve modelling was used to evaluate the commonality of individual change patterns. High levels of mental health problems were reported, which were stable over time. Higher scores on the DBC were associated with higher rates of mental health problems. Increases in child social relating problems were associated with increases mental health symptoms, particularly depression and anxiety.

Research highlights

▶ Mothers of children with intellectual disability experience high rates of mental health problems. ▶ Child behavior problems were associated with maternal mental health difficulties. ▶ Maternal reported mental health symptomatology did not decrease over time. ▶ Associations between change in child behavior problems and maternal mental health were identified.

Introduction

For many years, research in the field of intellectual disability (ID) has considered parent well being. Studies have demonstrated that mothers and fathers of children with ID suffer from significantly elevated levels of stress (Dyson, 1993, Dyson, 1997, Khamis, 2007, White and Hastings, 2004), and psychopathology (usually depression or anxiety), compared to the parents of children without ID (Beck et al., 2004, Emerson, 2003, Feldman et al., 2007, Olsson and Hwang, 2001, White and Hastings, 2004).

It has been reported that these elevated rates of parent psychosocial distress are not related to severity of ID per se, but rather to the extent of child behavior problems. This has been demonstrated for the parents of preschool children with developmental delay (Baker et al., 2002, Baker et al., 2005, Herring et al., 2006), and for parents of school age children and adolescents with autism (Lecavalier, Leone, & Wiltz, 2006). Similar findings have also been reported for the parents of children, adolescents, and adults with ID (Abbeduto et al., 2004, Beck et al., 2004, Feldman et al., 2007, Hassall et al., 2005, Maes et al., 2003, McIntyre et al., 2002, Nachshen et al., 2005, Orr et al., 1993, Seltzer et al., 1995).

Researchers have consistently demonstrated that children and adolescents with ID present with behavior and emotional problems three to four times higher than typically developing children (Dekker et al., 2002b, Einfeld and Tonge, 1996b, Linna et al., 1999, Richardson and Koller, 1996, Rutter et al., 1970, Wallander et al., 2003). Whilst these problems have been shown to persist into adolescence and adulthood (de Ruiter et al., 2007, Einfeld et al., 2006, Richardson and Koller, 1996), little research has examined the nature of the relationship between child behavior and emotional problems and parent psychosocial stress over time.

Some longitudinal research has suggested that parent psychological well-being improves over time, with a decline in depressive symptomatology (Flaherty and Glidden, 2000, Glidden and Schoolcraft, 2003, Seltzer et al., 2001). However, in adolescents and adults with autism elevated maternal anxiety was found to be stable over an 18-month period of time (Lounds, Seltzer, Greenberg, & Shattuck, 2007). In cases where child behavior problems decreased, associated decreases in maternal anxiety and depression were reported. Longitudinal research has shown that increased behavior and mental health problems in adult children with ID are associated with maternal depressive symptomatology and pessimism (Esbensen et al., 2003, Essex et al., 1999, Orsmond et al., 2003).

Although it has been proposed that child behavior problems lead to parental stress (Hastings, 2002), studies suggest that this may be bidirectional relationship (Baker et al., 2003, Lecavalier et al., 2006, Orsmond et al., 2003). In preschool children it has been noted that this relationship is mediated by parental optimism (Baker et al., 2005) and in adults by a parental problem-focussed coping style (Essex et al., 1999).

Although acknowledging that there is a relationship between parent well-being and child behavior and emotional problems, research suffers from a number of inconsistencies and shortcomings. In contrast to the majority of research in this area, some studies have suggested good outcomes in terms of psychological well-being for parents over time (Flaherty and Glidden, 2000, Glidden and Schoolcraft, 2003, Seltzer et al., 2001). However, a significant proportion (50–100%) of samples studied consisted of children with Down syndrome (Flaherty and Glidden, 2000, Glidden and Schoolcraft, 2003), retrospectively collected parent mental health data (Flaherty & Glidden, 2000), or did not consider child behavior problems (Glidden and Schoolcraft, 2003, Seltzer et al., 2001). As lower rates of behavior problems are seen in children and adolescents with Down syndrome (Einfeld, Tonge, Gray, & Taffe, 2007), reported positive outcomes may be a function of this bias. Longitudinal research focussing on psychological stress and child behavior problems to date has consisted of varying follow-up periods of 12–24 months in children and 1.5–6 years in adults. In order to more fully understand the relationship between behavior and emotional problems and parental psychological distress, research in large, non-syndrome specific samples, over longer periods of time is needed.

Material previously published by the authors established high levels of behavior and emotional problems in children and adolescents with ID, which were largely persistent over a follow-up period of 11 years (Einfeld et al., 2006). Although persistently high over time, statistically significant decreases in overall behavior and emotional problems were observed, although this change was impacted by age, degree of ID, and gender. In general, the more severe the degree of ID, the slower the rate of change. In contrast, social relating problem behaviors increased over time for the entire sample, whilst anxiety increased for girls with severe-profound ID. This study aimed to build upon these findings by exploring the relationship between child behavior problems and maternal mental health over time.

The study therefore aimed to (1) investigate whether there are elevated levels of mental health symptoms in the parents of young people with ID, (2) whether parental mental health is associated with child behavior and emotional problems, and (3) investigate how child behavior and emotional problems and maternal mental health relate to each other over time. It was hypothesized that parent reported mental health symptoms would be higher than normative rates, and would decrease over time. Having previously reported both decreases and increases in terms of child behavior problems from childhood to early adulthood (Einfeld et al., 2006), it was anticipated that decreases in child behavior problems would be associated with decreases in parent reported mental health symptoms. Similarly, it was hypothesized that increases in child behavior problems over time would be associated with increases in parent mental health symptoms.

In this report, we evaluate the associations among initial status and rates of change in the Developmental Behavior Checklist (DBC) subscales from childhood through adolescence and into early adulthood and indicators of mental health of parents using multivariate growth curve modelling (Sayer and Willett, 1998, Sliwinski et al., 2003, Snijders and Bosker, 1999). These models permit direct evaluation of covariation among individual differences in initial status, rates of linear change, and time-specific deviations (i.e., within-person correlation) across the five DBC subscales and parental outcomes (total score, plus four subscales). Correlations among the initial levels (i.e., intercepts) indicate similarity in the relative ordering of individuals at their initial time point across outcomes (i.e., relations among individual differences in initial status). Correlations among the slopes indicate the extent to which individual differences in change in one outcome are related to individual differences in change in another (i.e., correlated change). Correlations among residuals—often neglected in the modelling of associations between trajectories—provide an estimate of systematic time-specific fluctuation in emotional and behavior disturbance measured three to four years apart after accounting for an individual's growth trajectory. Residuals in these models are a combination of reliable and error variance so that correlations between them represent a lower bound of strength of association. These outcomes provide distinct and complementary evidence regarding the structure or commonality of change by examining correlated rates of change and coupling of temporal dynamics of psychopathology outcomes with indicators of parental mental health.

Section snippets

Sample

The ACAD study epidemiological cohort (n = 578) was recruited in 1991 from every health, education, and family agency that provided services to children with ID of all levels, whose families lived in six census districts of the states of New South Wales and Victoria, Australia. The first wave was composed of individuals aged 4–19 years whose families lived in the six census districts. These districts were selected as representative of the Australian population in terms of social class, ethnicity,

Results

Table 1, Table 2 provide the means and standard deviations for the GHQ and DBC Totals and subscales for the children and families consistently rated by the mother. Australian GHQ-28 normative data (n = 1216, aged 18–65+ years) (Purcell et al., 2005) reported a mean Total GHQ score of 16.30 (sd 9.42), mean Somatic Symptoms score of 4.10 (sd 3.47), mean Anxiety and Insomnia of 4.88 (sd 3.99), mean Social Dysfunction of 6.25 (sd 2.01), and mean Severe Depression of 1.06 (sd 2.41). Comparison with

Discussion

The present study addressed questions regarding the interdependence of developmental changes in behavior and emotional problems and maternal mental health in a population of young people with ID. As hypothesized, compared to a normative sample, consistently higher levels of mental health problems were reported by mothers of young people with ID. The observation that the mothers of younger children with mild ID reported less distress, whilst the mothers of older children (above 12 years of age)

Conclusion

As research in this field is demonstrating the high rate of behavior and emotional problems in young people with ID coupled with relative stability or slow decline over time (de Ruiter et al., 2007, Einfeld et al., 2006), services need to ensure treatment and support for children and families, throughout childhood and adulthood. Professionals in this field need to be alert to the mental health needs of parents, particularly for signs of anxiety and depression. As research indicates that

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