Adherence to behavioral treatments and parent stress in families of children with ASD

Highlights

• Higher adherence to behavioral treatment was associated with lower stress in parents and caregivers of children with ASD.

• Treatment demandingness was both a predictor for parent stress and a moderator for treatment adherence and parent stress.

• Treatment relevance was significantly associated with treatment adherence, but it was not a predictor for parent stress.

• Perceived treatment effectiveness was not significantly associated with treatment adherence or parent stress.

Abstract

Background

Recent studies suggest that parent involvement with behavioral treatment for behavior problems may reduce parent stress in families with a child with autism spectrum disorder (ASD). However, it is not known whether high treatment adherence to protocols is associated with reduced parent stress nor what perceptions of treatment may moderate this relation.

Method

The current study examined the relation between parents’ adherence to behavioral treatments and parent stress, and whether parents’ perceptions toward treatment moderate this association. Participants were 190 mothers, fathers, or caregivers of a child with ASD. A bivariate correlation matrix examined associations between each variable, and three separate linear regression models regressed parent stress on treatment adherence, perceptions of treatment, and the interaction of the two. Covariates included child age and severity of behavior problems.

Results

Treatment adherence had a significant negative relation with parent stress. Treatment demandingness, but neither treatment relevance nor treatment effectiveness, emerged as a moderator for the association between treatment adherence and parent stress.

Conclusions

Evidence was found for an association between treatment adherence and parent stress with partial support that perceptions of treatment moderate the association. Specifically, high treatment adherence was associated with lower parent stress, and the effect was most pronounced when treatment demandingness was low. These findings have implications for clinicians and treatment providers who are well-positioned to monitor and address parent attitudes to aid positive treatment outcomes for both the child and the parent. Moreover, clinicians can consider the impact of treatment demandingness on the whole family system.

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disability affecting 1 in 59 people across the United States (Center for Disease Control & Prevention, 2019). The disorder is characterized by differences in social functioning and communication, as well as the presence of restrictive and repetitive behaviors and interests. Extant literature has considered the global impact of ASD and concluded that family members, namely parents and caregivers, are at risk for negative wellbeing and adverse health outcomes, including chronic stress, depression, and anxiety (Ekas & Whitman, 2010; Hayes & Watson, 2013; Tint & Weiss, 2016). It is widely accepted that there are bidirectional influences between the child with ASD’s wellbeing and that of their family members (Karst & Van Hecke, 2012). Furthermore, there has been an increased focus on including parents as deliverers of ASD treatment, yet few studies have adequately examined the impact of treatment engagement on parent stress (Oono, Honey, & McConachie, 2013). As a result, there is a call for more family-centered approaches to studying the effects of ASD to include both the child and his or her family members (Cridland, Jones, Magee, & Caputi, 2014; Tint & Weiss, 2016).

Family systems theory offers a lens with which to conceptualize the interrelated processes between family members when ASD is present. The theory posits that individual family members function as subsystems (Minuchin, 1985). These subsystems are interdependent units existing in a system, but they have open boundaries which allow interactions with each other, resulting in changes in the system; thus, family members exert reciprocal influences on one another. The characteristics of ASD create unique experiences within the family system (Head & Abbeduto, 2007). For example, ASD is associated with a greater number of challenging behavior problems than any other development disability (Herring et al., 2006), and parents of children with ASD consistently present with elevated stress, pessimism, and depression (Head & Abbeduto, 2007). These findings provide context for understanding family dynamics when ASD is present and are described below.

It is well documented that parents of children with ASD experience significant levels of stress, at even higher rates than parents of children who have other developmental disabilities or are typically developing (Hayes & Watson, 2013; Osborne & Reed, 2009; Van Steijn, Oerlemans, Van Aken, Buitelaar, & Rommelse, 2014). The long-term effects of parent stress are troubling, and they include poorer wellbeing and mental health concerns (Ekas & Whitman, 2010). Unfortunately, parents with impaired psychological wellbeing and increased stress are less likely to participate in treatment for their child (Kazdin & Mazurick, 1994; Kazdin & Wassell, 2000). Additionally, parent stress may reduce or mask the positive effects of ASD intervention (Osborne, McHugh, Saunders, & Reed, 2008). These findings are cause for concern when considering treatment options for ASD, and it may be as important to attend to parent wellbeing as it is to consider the needs of the child, lest the treatment becomes hampered. From a family systems perspective, the unique challenges of the disability and their effects on other family members should be factored into treatment decisions (Head & Abbeduto, 2007).

Child characteristics partially explain elevated levels of parent stress in families with ASD. As stated above, ASD is associated with a greater number of behavioral issues than any other developmental disability (Herring et al., 2006). Behavior problems are common for children with ASD and include both externalizing behavior (e.g., aggression, self-injurious behavior, etc.) and internalizing problems (e.g., anxiety; Matson & Nebel-Schwalm, 2007). The significant association between parent stress and behavior problems is well established, with researchers estimating correlations between .28 and .40 for externalizing behaviors (i.e., self-injurious behavior and conduct problems, respectively) and between .17 and .41 for internalizing behaviors (i.e., insecure/anxious and adaptive/social, respectively; Lecavalier, Leone, & Wiltz, 2006). Stress and behavior problems appear to have bidirectional effects on each other over time, such that an increase in parent stress leads to more behavior problems, and vice versa (Zaidman-Zait et al., 2014). Potential mechanisms for this relation are the transactions occurring between parents and children, in which highly stressed parents exhibit more negative parenting behaviors, such as reduced limit setting (Hastings, 2009; Neece, Green, & Baker, 2012; Osborne, McHugh, Saunders, & Reed, 2008). These behaviors, in turn, lead to increased child behavior problems, which then create additional stress for the parent. The idea of transactions, or two or more parties reacting and adjusting to one another, aligns with family systems theory, in that members of each subsystem are reciprocally imparting influence on one another. Although core symptoms of ASD are also associated with increased parent stress, the effect may be eclipsed by the presence of behavior problems (Osborne & Reed, 2009); therefore, the present study considers the impact of behavior problems separately from core symptoms.

Given the substantial correlation between parent stress and behavior problems, it is unsurprising that behavioral treatment is among the most sought out treatments for individuals with ASD (Green et al., 2006; Myers & Johnson, 2007). Behavioral treatment, commonly delivered through applied behavior analysis therapy (ABA), utilizes strategies based on the principles of operant conditioning. A key component of ABA therapy is modifying aspects of the environment and altering the contingencies for reinforcement or a consequence, which shape socially significant behavior. The field of ABA therapy is well established, and an abundance of studies from the past six decades have supported the use of ABA therapy to treat behavior problems in individuals with ASD (Foxx, 2008). Long-term involvement with ABA therapy has medium to large effects on intellectual functioning, adaptive skills, and language development in individuals with autism (Virués-Ortega, 2010). Strict adherence to the treatment protocol aids in treatment gains (Klintwall, Gillberg, Bölte, & Fernell, 2012). Although there is variability among ABA models, some unifying features include intensive dosage (i.e., 30−40 hours per week), individual treatment plans, and the training of parents as co-therapists (Virués-Ortega, 2010).

Parent involvement in behavioral treatment, (i.e., parents receiving direct training on ABA techniques and implementing them with fidelity), is considered a key element to the success of behavior therapy (Karst & Van Hecke, 2012). In a review of the literature, Karst and Van Hecke (2012) found that parent involvement in treatment is viewed as essential, as parents are the most prominent adult in the child’s day-to-day life. Additionally, involvement can improve parent wellbeing, as parents learn strategies for managing behavior and grow in their confidence in caring for a child with ASD. Parent training of techniques has been shown to lead to better long-term behavior change than treatment without parent involvement (Vismara, Colombi, & Rogers, 2009). Furthermore, training parents as early interventionists by developing strategies for managing behavior has led to improved child behavior outcomes (Oono et al., 2013).

Knowledge about the effect of parent involvement with ASD treatment on parent stress levels is limited (Oono et al., 2013). Parents who perceive interventions to be emotionally supportive demonstrate higher treatment engagement (Hock, Kinsman, & Ortaglia, 2015), and greater perceived social support is associated with decreased caregiver stress in families with ASD (Goedeke, Shepherd, Landon, & Taylor, 2019; Siman-Tov & Kaniel, 2011), There is some evidence, however, that parent involvement in interventions can increase parent stress. For example, Rivard et al. (2017) found that their parent coaching program effectively reduced behavior problems in children with ASD, yet parents reported significantly more stress after 12 months of treatment. Although parents reported that they were highly satisfied with the intervention, the authors suggested that they experienced increased stress because they perceived that the coaching program was insufficient for fully treating their child’s needs. However, parents’ overall engagement with the intervention was not measured, and it is unclear whether variance in levels of involvement was related to stress.

Parent involvement in treatment as defined by their adherence to the treatment may partially explain variance in parent stress. Treatment adherence refers to the extent to which an individual implements a prescribed treatment protocol that is necessary for desired therapeutic outcomes, and it can include attending appointments, taking medication according to a schedule, making lifestyle changes, and following home-based regimens for themselves or someone for whom they care for (Meichenbaum & Turk, 1987). As described above, behavioral treatment for ASD often employs caregivers to consistently implement an individualized protocol to manage their child’s problem behavior (Kashinath, Woods, & Goldstein, 2006). Interestingly, parent adherence to ASD treatment has been identified as the lowest in intensive behavioral treatment, compared with speech-language therapy, dietary interventions, and occupational therapy (Shepherd, Landon, Goedeke, Ty, & Csako, 2018). Moreover, Hock et al. (2015) found that adherence to behavioral treatment was significantly lower than adherence to medication and developmental treatments. Nevertheless, there is evidence that behavioral treatment, in general, is associated with reduced parent stress (Hastings & Johnson, 2001), to a greater degree than the aforementioned therapies (Shepherd et al., 2018). Thus, parents may have the most difficulty adhering to the very treatments that may be associated with the greatest stress reduction, yet this phenomenon is not well understood.

Perceptions of treatment influence parents’ adherence to their child’s treatment. For example, the Barriers-to-Treatment Model (Kazdin, Holland, & Crowley, 1997) suggests that there are features of treatment outside of practical elements (e.g., transportation to and from treatment centers) that affect families’ participation in therapy. These perceived barriers to treatment include the degree to which parents find treatment to be helpful, demanding, and relevant, as well as the perceived alliance with treatment providers and other procedural obstacles (e.g., behavior problems with siblings that interfered with treatment, etc.). In families receiving psychiatric treatment for their children, Kazdin et al. (1997) found that parents who reported a high number of barriers were more likely to prematurely drop out of treatment, attend fewer sessions, and have a higher number of cancellations and no-shows. Parent engagement with therapy is also sensitive to cognitions about the treatment, specifically the expectation that treatment is helpful (Morrissey-Kane & Prinz, 1999). The perceptions of treatment demandingness, treatment relevance, and treatment effectiveness are all implicated with treatment adherence in ASD, and they may partially explain the variance in parent stress.

Treatment demandingness, also referred to as treatment burden, is conceptualized as both the “workload and impact of treatment regimens on function and wellbeing” (Demain et al., 2015, p.1). In other words, the money, time, and energy required to participate in treatment are viewed as consequential for engaging in treatment. Treatment for children with disabilities extends to their caretakers, who cite financial considerations and time commitment as some of the most challenging aspects of treatment (Sav et al., 2013). Unfortunately, when treatment is perceived as overly demanding parents are less likely to adhere to behavioral interventions for their child with ASD (Carlon, Carter, & Stephenson, 2013). In addition to the financial strain, a high number of weak or stressful connections with service systems is related to both high parent stress and high subjective burden in families with a child with ASD (Kuhn, Ford, & Dawalt, 2018). Thus, an overly demanding treatment modality may cause undue stress on caregivers as their engagement with it increases. As such, treatment demandingness may moderate the relation between adherence and parent stress, with adherence associated with decreased parent stress only when the perceived treatment demandingness is low.

Treatment relevance refers to parents’ perception that the given treatment is what is needed to achieve desired outcomes. As a construct, the relevance or irrelevance of a given treatment largely influences whether a parent will attend psychotherapy for their children (Kazdin et al., 1997). Furthermore, treatment relevance carried the most weight in the Barriers-to-Treatment model, as it had the largest effect on treatment participation in the 1997 study. Stevens, Kelleher, Ward-Estes, and Hayes (2006) extended these findings to non-research-oriented clinics and found perceived treatment irrelevance to be one of the most consistent predictors of premature dropout from child psychotherapy.

Treatment relevance is an important consideration in the context of ASD treatment. Upon receiving an ASD diagnosis for their child, parents are often flooded with information about the numerous service options (Valentine, 2010), and there is no guidebook for what treatments are necessary for whom, due to the heterogeneity of the disorder. Nonetheless, behavioral intervention remains the “gold standard treatment” for ASD (Masi, DeMayo, Glozier, & Guastella, 2017). Research has found that parent involvement in behavioral treatment is significantly correlated with parents’ “belief in” the treatment as essential to reduce problem behaviors related to ASD (Solish & Perry, 2008). Moreover, high expectations for behavioral intervention are correlated with lower levels of parent stress (Shepherd, Landon, & Goedeke, 2017). Thus, it would follow that parents who perceive their child is receiving the supports they need will experience reduced stress. For those involved in behavioral treatment, the perceived relevancy of treatment may negatively affect parent stress. Parents may experience relief knowing their child is receiving the services he or she needs. In contrast, parents who feel their child’s treatment is disconnected from their child’s needs may feel more stress, which may ultimately lead to less engagement.

The perception of treatment effectiveness signifies the belief that a given treatment is producing desired therapeutic outcomes. The belief that a treatment will be effective is viewed by some as a necessary component of treatment engagement on the part of caregivers that results in positive outcomes for their child (King, Currie, & Petersen, 2014). By taking a “hopeful stance,” parents are in an optimal state of treatment engagement, and they are more likely to report therapeutic change (p. 4). Moreover, parents are more likely to adhere to or terminate behavioral treatment for ASD depending on perceived effectiveness of the intervention (Bowker, D’Angelo, Hicks, & Wells, 2011; Moore & Symons, 2011). When the belief of the effectiveness of a given treatment is low, parents experience heightened stress (Nock & Kazdin, 2001). Conversely, when parents perceive a treatment to be effective, their levels of stress decrease over time (Hastings & Johnson, 2001). In contrast to other types of social support (e.g., friend and partner), Goedeke et al. (2019) found that only professional support was related to reduced stress and perceived effectiveness of behavior treatment. Thus, the degree to which adherence decreases parent stress may be moderated by the availability and quality of parents’ social support.

Despite an increased focus on family-centered approaches to ASD treatment, there is a lack of understanding about how treatment involvement either alleviates or exacerbates parent stress. Fidelity of behavioral treatment protocols is advantageous for child outcomes (Klintwall et al., 2012), but it is unclear if the same influence exists for parent outcomes. Existing research has examined this relation by comparing groups by treatment type (Hastings & Johnson, 2001; Shepherd et al., 2018) or by measuring stress as an outcome of an intervention (Rivard et al., 2017). To the authors’ knowledge, there are no studies that have examined the role of treatment adherence as a predictor for parent stress in ASD. It may be that parent involvement in treatment is associated with decreased stress due to the success of treatment, or that parents face increased stress due to participating in treatment. Because parent stress can hamper the effectiveness of behavioral treatment, it is vital for parents to select treatments that not only address their child’s needs but also improve their own wellbeing.

There remains an incomplete understanding of the factors that attenuate the impact of behavioral treatment adherence on parent stress. It has been shown that perceptions of treatment sometimes serve as barriers to treatment adherence and can exacerbate parent stress. However, the degree to which perceptions interact with treatment adherence to impact parent stress has not been investigated. A clearer picture of the interplay between treatment adherence and parent perceptions will fill a necessary gap in the literature by identifying which aspects of ASD treatment affect parent wellbeing. Understanding these relations will also allow clinicians to better understand how and why ASD treatment may create stress for other family members, which may negatively impact treatment outcomes. For stressed parents who are at risk for prematurely dropping out of their child’s treatment, it is prudent to examine the factors that are amenable to change. Such perceptions of treatment—relevance, effectiveness, and demandingness—can inform intervention targets for clinicians, as well as decisions about treatment choice for parents.

The current study sought to address these two questions: What are the unique effects of behavioral treatment adherence and perceptions on parent stress? Do perceptions of treatment (i.e., treatment demandingness, treatment relevance, and treatment effectiveness) moderate the relation between treatment adherence and parent stress? Fig. 1 is a depiction of the hypothesized model. In line with previous studies, we hypothesize that (1) treatment adherence will have a significant negative relation with parent stress; (2) treatment relevance and treatment effectiveness will be negatively associated with parent stress, while treatment demandingness will be positively related to parent stress; and (3) perceptions of treatment will moderate the impact of treatment adherence on parent stress, with treatment relevance and treatment effectiveness strengthening the relation and treatment demandingness weakening it. To accommodate for the behavior problems and parent stress association, as well as potential age-related differences, we will control for severity of behavior problems and child age. These findings will address a gap in the current body of literature by teasing apart the associations between parent stress, treatment adherence, and perceptions of treatment.