Predictors of parent stress in a sample of children with ASD: Pain, problem behavior, and parental coping
Highlights
► Parent stress (PS) was positively associated with child problem behavior (PB) and pain. ► PB moderated the relationship between pain and PS. ► Pain predicted PS only at high levels of PB. ► An overprotective parenting style moderated the relationship between pain and PS.
Introduction
Autism spectrum disorder (ASD) is a heterogeneous disorder comprised of deficits in communication and language skills, social skills, and repetitive behaviors. Due to the heterogeneous nature of the disorder, many researchers have focused on biological explanations for differences in the expression of ASD. A recent model proposed by Herbert (2005) is that ASD is a “whole body” disorder resulting from gene-environment interactions that affect a person's entire body, not just the brain. Herbert argues that people with ASD experience widespread, pervasive changes in their brain and body tissue due to chronic pathophysiological processes including neuroinflammation and oxidative stress.
This model has implications regarding the reasons that individuals with ASD often experience more medical problems like gastrointestinal disorders, allergies, seizure disorders, sleep problems, hormonal imbalances, metabolic abnormalities, and recurrent infections (Bauman, 2006). Evidence suggests that pain from various medical problems can adversely impact the effectiveness of behavioral interventions for individuals with autism (Carr and Herbert, 2008, Carr and Owen-DeSchryver, 2006). Physical illness and pain has detrimental effects to multiple areas of functioning including child problem behavior, parent stress, family quality of life (QOL), and parent coping strategies.
Currently, the relationships between pain, problem behavior, parent coping, and parent stress have not been studied in relation to one another; rather, these variables tend to be studied separately. In order to bridge this gap the goal of the present study was to test how pain, child problem behavior, and parent coping interacted to predict parent stress. A second goal was to assess whether problem behavior and parent responses to children's pain moderated the relationship between pain and parent stress. First we will review the extant research on the relevant variables including pain, problem behavior, parent coping, and parent stress in ASD populations.
In ASD populations problem behavior has been shown to be a primary predictor of parent stress. Problem behavior often results in increased stress for family members, isolation from the community, and exclusion from educational settings, social relationships, and typical home environments (Koegel et al., 1992, Lucyshyn et al., 2002). Floyd and Gallagher (1997) compared problem behavior severity across children with mental retardation and chronic illness and demonstrated that severity of behavior problems rather than disability type was a stronger predictor of parent stress. When a child engages in problem behavior it can disrupt the entire family and make it more difficult to complete daily care-giving tasks. A study by Plant and Sanders (2007) found that problem behavior during care-giving tasks was the primary predictor of parent stress in a sample of pre-school aged children with developmental disabilities (DD). Not surprisingly, problem behavior made it more difficult to complete care-giving tasks such as bathing, feeding, supervising child activities and managing child behaviors, thus increasing parent stress surrounding those day-to-day tasks. In addition, researchers have demonstrated that parents of children with ASD experience heightened stress compared to parents of typically developing (TD) children or children with other disorders (e.g., ADHD, mental retardation; Baker et al., 2003, Hastings, 2002, Lee et al., 2008, Tomanik et al., 2005).
Furthermore, parenting stress has been related to many negative outcomes including marital distress, depression, coercive parenting, and drop-out from parent training interventions and thus is an important factor when utilizing family interventions for children with ASD. Additive stressors in one area of life that increase secondary stressors in other areas are termed stress proliferation and have been recently studied in parents of children with ASD (Benson, 2006, Benson, 2009). Stressors such as severe family disruptions, social isolation, and increased parenting demands (Fox et al., 2002, Hastings, 2002, Koegel et al., 1992) can then lead to other negative outcomes like marital problems, depression, and lack of parenting efficacy; this supports the idea of stress proliferation (Benson, 2006).
Stress can also lead to increased child behavior problems and in turn, a coercive parent–child interaction style (Bor, Sanders, & Markie-Dadds, 2002). A coercive parent–child interaction occurs when the parent gives the child a command in which the child responds with non-compliance or some form of problem behavior and the parent either gives up on the request or the parent responds with aversive behavior (e.g., yelling, getting angry). In the first scenario, the child's problem behavior is negatively reinforced and in the second scenario the parent's aversive behavior is negatively reinforced, both of which serve as maintaining factors of maladaptive behaviors.
Another negative outcome related to parent stress is increased drop-out from interventions, as shown in one study, parents with higher stress were less likely to attend group therapy for their children than parents with lower stress (Andra & Thomas, 1998). Further, parents who experience high levels of stress or other psychological symptoms like depression might not be able to follow through with intervention procedures for their child (Schreibman, 2000).
When a child experiences pain, physical illness, or discomfort, parents tend to experience increased role demands and are required to attend to or try and ameliorate the child's pain. Much of the research on pain and care-giver stress has focused on samples of individuals with medical disorders like cystic fibrosis (CF) or children and adolescents who report chronic pain symptoms. Research on pain and parent stress does not tend to focus on children with ASD. Only recently has pain and illness been of interest in the ASD area due to evidence of its increased prevalence (Eccleston et al., 2003, Quittner et al., 1998). Chronic pain has been shown to relate to increased stress in parents of TD children and it also has a negative impact on QOL for the family (Hanson and Hanline, 1990, Hunfeld et al., 2001). In a related study, Hunfeld et al. (2001) showed that mothers of adolescents with chronic illness had restrictions in social life and difficulty coping with the stress of the adolescent's pain.
Care-givers are required to be more intensely involved with a chronically ill child and may experience role strains as well as increased stress due to the constant demands to take care of a child that is sick (Krulik et al., 1999). Role strains and parent stress due to child illness was shown cross-culturally, where mothers of chronically ill children reported significantly higher stress than a normative sample and their stress seemed to be directly related to child rather than parent factors (Krulik et al., 1999). Mothers from four countries including the United States, Jordan, Israel, and Japan reported increased stress due to child illness factors, which indicates a robust finding that transcends various cultures. Furthermore, recurrent pain can have widespread effects on multiple areas of individual and family functioning, including sleep, school, social activities, and physical activities and can also negatively affect emotional functioning (Palermo, 2000). One study on adolescent chronic pain showed that parents displayed more depressive symptomatology and higher parental stress when they had a child with chronic pain (Eccleston et al., 2003).
In a sample of children with CF, a disorder comprised of chronic medical problems, parents of children with CF experienced much higher levels of stress and parental role strain than parents of children without a chronic illness (Quittner et al., 1998). The literature is well established that having a child with chronic or recurrent pain or illness predicts greater parent stress, however, there is not much research on this relationship in an ASD parent population. We can surmise that because children with ASD have increased rates of physical illness (e.g., Minihan, 1986) and increased challenging behaviors (e.g., Schreibman, 1988), parents might also experience increased stress due to these factors.
Pain and physical illness in general have been shown to be more common in people with DD than in individuals without DD (Cooper, 1998, Minihan, 1986). In a recent national survey of children's health, children with ASD had a significantly higher rate of respiratory, food, and skin allergies as compared to children without ASD (Gurney, McPheeters, & Davis, 2006). They also had significantly higher mean physician visits for preventative and emergency care than children without ASD. More specifically, children with ASD tended to have higher rates of gastrointestinal problems like constipation, diarrhea, reflux, vomiting, abdominal discomfort, and food selectivity than children without ASD (Horvath and Perman, 2002, Molloy and Manning-Courtney, 2003).
In addition to pain and illness, problem behaviors such as self-injury, tantrums, and aggression compromise quality of life and family functioning and seem to be more common among people with ASD (Hartley et al., 2008, Koegel et al., 1996, Lecavalier, 2006). In the ASD literature, pain or illness has been conceptualized as a setting event for problem behavior. A setting event is a broad contextual variable that influences the relationship between the antecedent (discriminative stimulus), response, and consequence (Bijou & Baer, 1961). Carr and Owen-DeSchryver (2006) demonstrated that when children experienced higher levels of pain they engaged in more frequent and intense problem behavior in the classroom than when they had no pain symptoms. In a follow-up study, Carr and Blakeley-Smith (2006) found that treatment of children's pain symptoms led to less frequent problem behavior in the classroom. Problem behaviors were also shown to decrease following medical interventions for pain in individuals with developmental disabilities (Gunsett et al., 1989, Peine et al., 1995).
Thus, the pain associated with physical illness might make regular demands more aversive for a person with ASD, which leads to an increase in problem behavior. Pain is not often assessed as a factor influencing problem behavior because typical functions of problem behavior include escape, gaining a preferred activity or attention (Carr & Owen-DeSchryver, 2006). Traditional behavioral interventions also typically focus on antecedents, behaviors, and consequences rather than intervening at the setting event level (Carr, 2007). When pain is not assessed as a setting event for problem behavior it becomes more difficult to prevent pain from occurring and it reduces the effectiveness of behavioral interventions. It is expected that parent stress would be exacerbated due to the unpredictability of problem behaviors and decreased effectiveness of interventions.
Parent style in coping with child pain is also of interest in the scope of the current study because there is research which indicates that parents can respond to their child's pain in a variety of adaptive and maladaptive ways. Van Slyke and Walker (2006) found that parents can respond to their child in pain by minimizing or criticizing the child for being in pain, being overly protective toward the child, or encouraging the child to engage in other activities even though he is in pain. Both protective and minimizing styles of parent responses to pain can exacerbate pain symptoms and have been shown to interact with other variables such as child coping skills and child risk for psychological distress to predict poorer outcomes (Claar et al., 2008, Simons et al., 2008). Claar et al. (2008) found that in a neurotypical sample, parent maladaptive responses to pain were associated with exacerbated pain symptoms in children who had higher levels of emotional distress. It seems plausible that this relationship would also exist in an ASD population where more maladaptive parent responses might lead to more problem behavior.
There is a lack of evidence in the ASD literature on parent response to pain and problem behavior as well as the relationship between parent response types and parent stress. Another aim of the current study is to address this gap.
The ASD literature has addressed parent stress in relation to problem behavior and addressed problem behavior in relation to pain and physical illness, but the relationship among pain, problem behavior, and parent stress has not been examined together. Further, parental response to child illness related behavior has only been examined in samples of children without ASD and has yet to be integrated in a model of pain, problem behavior, and parent stress in an ASD population. The present study aimed to address these gaps in the ASD literature by measuring various predictors of parent stress (i.e., pain, problem behavior, and parenting style) in a population of children with ASD. This study will also address how these variables might interact to determine higher levels of parent stress. The study hypotheses were as follows: (1) higher levels of child pain will be positively associated with child problem behavior, (2) higher levels of problem behavior will be positively correlated with parent stress, (3) increased levels of pain will also be positively associated with parent stress, (4) pain and problem behavior will interact to predict higher parental stress, such that pain will only predict stress at high levels of problem behavior, and (5) pain and parental stress will be moderated by parents’ response style to child pain, such that parents who express maladaptive (i.e., minimizing or overprotecting) responses to child pain will experience higher parent stress.
Section snippets
Participants
The total number of participants in this study was 148 parents of children with ASD who were recruited through several medical agencies, a local chapter of the Autism Society through an online listserv, and through the Autism Society's national database consisting of over 100,000 parents. In order to be included in the study, parents had to complete at least 80% of the questionnaires. Of the parents who participated, 132 were mothers, 14 were fathers, and 2 were other (e.g., step-parent,
Results
The variables included in the analyses were parent stress (M = 2.57, SD = .87), parent protectiveness (M = 1.88, SD = .66), child pain (M = .90, SD = .57), and child problem behavior (M = 1.52, SD = .56). All five measures used in the study were examined for missing values and outliers. Twenty-eight participants were excluded from the study because they completed less than 80% of the questionnaires. These participants were not statistically different than the remainder of the sample. All participant scores
Discussion
The current study is the first investigation to determine how child pain, problem behavior, and parent coping style interact to predict parent stress. When pain and problem behavior predicted parent stress, higher levels of child pain interacted with problem behavior to predict parent stress. At high levels of problem behavior, pain was significantly related to parent stress, but at low levels of problem behavior, pain was not significantly related to stress. This indicated that child problem
Conclusion
From a systems perspective it is important to acknowledge various factors that maintain a child's behavior and also produce parent stress. Problem behavior is disruptive to a family's quality of life and restricts the child from participating in regular school and community activities. Disruptive behavior is also a strong maintaining factor to parent stress, however, there also seems to be a unique role of parenting style and child pain in producing parent stress. Children with ASD should be
Acknowledgments
This study was funded by the Autism Research Institute. Thanks to Dr. Stephen Edelson for his continued support. This project is dedicated in memory of our late graduate advisor, Dr. Edward G. Carr, who continues to inspire us.
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