Introduction
Parenting a child with autism spectrum disorder (ASD) is more demanding than parenting a typically developing child or a child with other developmental disabilities (Hayes and Watson
2013). ASD is a neurodevelopmental disorder characterized by impairments in social communication and social interaction, and restricted, repetitive, and stereotyped behaviors (American Psychiatric Association
2013). Many children with ASD also exhibit challenging behaviors such as tantrums, aggression, and self-injurious behavior (Jang et al.
2011; Matson et al.
2009). Furthermore, approximately 70–92% of the children with ASD meet criteria for at least one comorbid psychiatric diagnosis, including attention deficit hyperactivity disorder (ADHD), oppositional defiant disorder (ODD), anxiety disorders, and mood disorders (Brookman-Frazee et al.
2018; Joshi et al.
2010; Simonoff et al.
2008). The majority of children with ASD have intelligence quotient (IQ) scores above 70 and are thus not classified as having an intellectual disability (Baio et al.
2018; Joshi et al.
2014). The characteristics of ASD and associated challenging behaviors and comorbid psychopathology not only impact children with ASD but also their parents (Karst and Van Hecke
2012). Parents of children with ASD report more parental stress, lower levels of parental self-efficacy, and less overall well-being (e.g., Frantz et al.
2018; Hayes and Watson
2013; Karst and van Hecke
2012). Furthermore, researchers have identified higher prevalence of depression and anxiety among parents of children with ASD (e.g., Bitsika and Sharpley
2004; Frantz et al.
2018; Singer
2006). When the severity of ASD symptoms, challenging behaviors, or comorbid psychopathology exceed the ability of parents to cope, the likelihood of psychiatric hospitalization or inpatient treatment increases (Mandell et al.
2012; Righi et al.
2018). Indeed, approximately 6% of children with ASD receive inpatient treatment (Cidav et al.
2013).
In early childhood, children with ASD engage in fewer initiations than typically developing children and their initiations serve fewer functions (Stone et al.
1997; Wetherby and Prutting
1984). These deficits in initiations continue beyond early childhood. School-aged children, adolescents, and adults with ASD initiate social conversation less often which may interfere with the development of social relationships (Hauck et al.
1995; Koegel et al.
2016b; Stone and Caro-Martinez
1990). In addition, deficits in initiations often lead to directive parent behaviors because parents tend to compensate for their child’s lack of initiations rather than providing him or her with opportunities to initiate (Hudry et al.
2013; Wan et al.
2012). Children’s challenging behaviors might also contribute to directive parent behavior and further reduce children’s opportunities to initiate (Reed and Osborne
2014; Shawler and Sullivan
2017).
Parent education has long been accepted as a beneficial method to teach parents skills to improve their child’s skills and reduce their child’s challenging behaviors (e.g., McConachie and Diggle
2007; Steiner et al.
2012). As a collateral result, reductions in parental stress and increases in parental self-efficacy may occur (Brookman-Frazee et al.
2009; Da Paz and Wallander
2017; Steiner et al.
2012). Parent education also increases intervention intensity because parents are able to provide intervention throughout the day and in various natural settings, increasing the child’s rate of progress and promoting generalized use of skills (Steiner et al.
2012). In addition, due to the increase in the number of children diagnosed with ASD, parent education is necessary to meet increased demands for treatment services (Elsabbagh et al.
2012; Steiner et al.
2012).
Parent education is an essential component of Pivotal Response Treatment (PRT; Koegel et al.
2016a). PRT is a naturalistic evidence-based intervention that targets pivotal skills (e.g., initiations) in children with ASD to produce generalized improvements across domains of functioning using the principles of Applied Behavior Analysis (ABA). A systematic review has reported evidence for the effectiveness of PRT for increasing initiations and producing collateral improvements in communication, language, affect, play, and challenging behaviors (Verschuur et al.
2014). Although the effectiveness of PRT has mainly been demonstrated in preschool children with ASD and cognitive impairments, some studies indicate that school-aged children with average cognitive abilities may also benefit from PRT (e.g., Doggett et al.
2013; Huskens et al.
2012; Verschuur et al.
2017).
A large number of studies on PRT focused on parent education as PRT is designed to be conducted in natural environments (e.g., Bradshaw et al.
2017; Coolican et al.
2010; Hardan et al.
2015; Nefdt et al.
2010; Randolph et al.
2011). Parents are taught to create opportunities for their child to initiate individually, in a group, or through a self-directed learning program. Results of studies on parent education in PRT suggest that parents can be taught to implement PRT. Most parents meet criteria for fidelity of PRT implementation after parent education (e.g., Verschuur et al.
2014). However, in most studies, parent education in PRT was conducted by trainers who were employed by university-based research clinics. An exception is the study by Bryson et al. (
2007) in which community service providers were taught to educate parents in PRT, but this study did not use an experimental design and presented only preliminary findings. To allow for dissemination of PRT to a large number of children it is important that parent education can be effectively delivered by PRT trainers who are part of community-based treatment facilities (e.g., Brookman-Frazee et al.
2012b; Bryson et al.
2007) and thus more research on this topic is warranted. In addition, it is important to determine the effectiveness of parent education in PRT for parents of school-aged children with ASD, average cognitive abilities, and comorbid psychopathology, as there is limited information about the effectiveness of PRT in this population (e.g., Verschuur et al.
2017). Furthermore, thus far there is little evidence for collateral changes in parental stress and parental self-efficacy as a result of parent education in PRT (Verschuur et al.
2014). Finally, additional research on the effectiveness of group parent education in PRT is warranted, because only a couple of studies using a group model were conducted (e.g. Bryson et al.
2007; Gengoux et al.
2015; Hardan et al.
2015; Minjarez et al.
2011,
2013). Although these studies reported improvements in parent and child behaviors, conclusive evidence for the effectiveness of group-based parent education in PRT is still limited, as Bryson et al. (
2007) and Minjarez et al. (
2011,
2013) did not use an experimental design.
To address these needs, the objective of the present study was to investigate the effectiveness of parent education in PRT on parent-created opportunities and child initiations in two community-based treatment facilities for children with ASD in the Netherlands. Furthermore, collateral changes in parental stress and parental self-efficacy were explored. To this end, we conducted two separate single-case design studies of parent education in PRT. In Study 1, the effectiveness of a group parent education program was evaluated. In Study 2, we investigated the effectiveness of individual parent education.
Discussion
In two single-case design studies, parents of children with ASD were taught to create opportunities for initiations through group or individual parent education in PRT. Collateral changes in parental stress and self-efficacy as a result of group or individual parent education were also explored. The results from the first study indicate that group-based parent education in PRT had a moderate significant effect on parent-created opportunities, functional initiations, and empathic initiations. Furthermore, parental stress significantly decreased and self-efficacy significantly increased. Finally, parents were highly satisfied with the group parent education program. The results from the second study show that parents were also highly satisfied with individual parent education in PRT. Moreover, individual parent education resulted in large significant increases in parent-created opportunities and functional initiations, but changes in parental stress and self-efficacy were not significant. In both studies, changes in parent-created opportunities were not significantly associated with changes in any other dependent measure.
The results from the first study partially support the notion that parents can effectively be taught PRT in a group in a community-based treatment facility. Less than half of the parents created significantly more opportunities as a result of group-based parent education and functional and empathic social initiations increased significantly in only a few children, despite moderate effects across parents and children. One factor that could explain why our group parent education program in PRT seems less effective than those in the studies of Hardan et al. (
2015) and Minjarez et al. (
2011) is the age of the included children. Children of parents in our group parent education program were older (i.e., school-aged). PRT might be more difficult to implement in school-aged children, because these children play or work more independently compared to preschoolers, which might make it more difficult to create opportunities for functional initiations (Suhrheinrich et al.
2016). Also, more than half of the children in our group parent education program had at least one comorbid psychiatric diagnosis, whereas children with comorbid psychopathology were excluded from participation in the study of Hardan et al. (
2015). Comorbid psychopathology may negatively affect the effectiveness of an intervention (e.g., Antshel et al.
2011). Furthermore, comorbid psychopathology is often the primary reason for referral to treatment services and thus, parents may prioritize intervention targets related to these co-occurring psychiatric problems over initiations (e.g., Brookman-Frazee et al.
2012a). Another factor that might explain the mixed results of our study on group parent education is the amount of practice and individual feedback. On average, parents who participated in group-based parent education videotaped only seven sessions during parent education, although they were instructed to videotape one PRT session after each session. Thus, parents in our group parent education program practiced less than instructed, suggesting low treatment adherence. As a result, they received less feedback. Both practice and individual feedback are critical to enhance parents’ skills (e.g., Parsons et al.
2012). It is possible that parents in group-based parent education felt little pressure to practice because they could ‘hide behind’ the group (Wymbs et al.
2017). For future research it is important to determine the optimum amount and type of practice and feedback to teach parents to create opportunities for initiating and to identify strategies to increase treatment adherence in group parent education programs.
Findings from our second study are consistent with previous studies on individual parent education in PRT that have shown increases in parents’ ability to implement PRT and improvements in child functional verbal communication, including initiations (e.g., Bradshaw et al.
2017; Coolican et al.
2010; Koegel et al.
2002; Randolph et al.
2011; Symon
2005). The current study provides additional evidence for the effectiveness of individualized parent education programs in PRT by demonstrating that individual parent education can be effectively implemented by trainers in community-based treatment facilities.
In both studies changes in parent-created opportunities were not significantly related to collateral changes in parental stress and self-efficacy. Rather, particularly in our study on parent education using a group model, improvements in parental stress and self-efficacy seemed to occur irrespective of increases in parent-created opportunities. This suggests that it may be important to provide parents with opportunities to meet other parents of children with ASD who have similar experiences, prior or in addition to teaching skills to these parents to improve their child’s skills. As such, these results support the hypothesis that participating in parent education in a group context may decrease parental stress and increase their self-efficacy, because a parent education group would increase social support (e.g., Frantz et al.
2018).
Our studies on group and individual parent education in PRT are unique in distinguishing between different subtypes of child initiations based on their communicative function compared to other studies evaluating the effectiveness of PRT on child initiations. Until now, studies on PRT targeted only one type of initiations (e.g., Koegel et al.
2010) or initiations in general without distinguishing between communicative functions (e.g., Hardan et al.
2015; Minjarez et al.
2011). A distinction between initiations based on their communicative function is important as social initiations have more potential to improve children’s social success than functional initiations (e.g., Koegel
2000). PRT particularly provides strategies to elicit functional child initiations (e.g., shared control, waiting, and interrupting a routine), although leading statements can be used to create opportunities for empathic social initiations (e.g., Doggett et al.
2013). Therefore, it is not surprising that we particularly found significant increases in functional and to a lesser degree in empathic social initiations as a result of parent education in PRT. Our baseline data also suggest that children with ASD may show deficits in one subtype of initiations, but not in another subtype. These data support the notion that PRT needs to be individualized based on child characteristics and that parents need to be taught to create opportunities to target a certain subtype of initiations (Rieth et al.
2014). Further research is necessary to validate our distinction in subtypes of initiations.
There was a great deal of variability in responding between parents and children in both studies. Parent characteristics may influence parents’ intervention outcomes, including parent fidelity of intervention implementation (e.g., Randolph et al.
2011). For example, parent education may be less effective in economically disadvantaged families, although these parents appeared to benefit significantly more from individual than group parent education models (Lundahl et al.
2006). Parent’s cultural background, educational level, marital status, parental stress, psychopathology, and gender are also likely to be related to parent fidelity of intervention implementation (e.g., Osborne et al.
2008; Reyno and McGrath
2006; Stahmer et al.
2011a; Strauss et al.
2012). Further research is necessary to examine how these factors affect the effectiveness of parent education in PRT. This will enable clinicians to tailor parent education in PRT to each parent’s needs and to optimize individual outcomes.
Variability in responding between children may be a result of variation in parents’ implementation of PRT as fidelity of implementation is associated with intervention outcomes (e.g., Allen and Warzak
2000; Strauss et al.
2012). Furthermore, child characteristics might account for this variability. Research has indicated that higher pre-intervention cognitive and expressive language skills, more positive affect, more appropriate toy contact, and decreased social avoidance and stereotyped or repetitive vocalizations predict positive outcome of PRT in preschool children with ASD (Fossum et al.
2018; Schreibman et al.
2009; Sherer and Schreibman
2005). Future research should investigate whether these and other child characteristics, such as comorbid psychopathology and challenging behavior, are related to outcomes of PRT for school-aged children with ASD.
There are several limitations to both studies. First, due to limited availability of certified PRT trainers, the studies on group and individual parent education could not be conducted concurrently. As a result, parents and children were not randomly assigned to the study on group or individual parent education or matched. We conducted two separate single-case design studies and thus, differences in the effectiveness of both parent education models could not be evaluated. This topic should be addressed in future research. Second, children included in both studies were also receiving other interventions at the treatment facilities (e.g., milieu therapy, speech-language therapy, art therapy, family therapy, pharmacological interventions, or physiotherapy). For ethical reasons, it was necessary to continue these interventions and thus the possibility of multiple intervention interference cannot be ruled out. Third, although interobserver agreement was acceptable or good on average, there were several instances where interobserver agreement was below acceptable levels, which impacts the accuracy of our data. Interobserver agreement for parent-created opportunities may have been low in several instances, because a parent-created opportunity was defined as a sequence of multiple behaviors (Cooper et al.
2013). Because we measured spontaneous initiations in children with very different levels of verbal communication (ranging from a few words to verbally fluent) and measured different types of initiations (i.e., functional, early social, and empathic social), our definition of an initiation was relatively ‘broad’, which may have resulted in low levels of interobserver agreement in many videotapes (Cooper et al.
2013). In addition, interobserver agreement may have been low, because the audio quality of several videotapes was poor due to background noises or bad acoustics. Fourth, to practice the PRT techniques parents were allowed to choose any age-appropriate everyday activity that required interaction. This enabled parents to select child-preferred activities and to follow their child’s motivation, as is expected during PRT (Koegel et al.
2016a), but also resulted in variation in activities, which could have affected our results. Finally, collateral effects were measured only before and after the intervention using questionnaires completed by parents. Repeated measures using a combination of direct or objective assessment methods (e.g., observation or physiological measures) and indirect or subjective measures (e.g., questionnaires) would have been more suitable to measure changes in parental stress and self-efficacy (Cooper et al.
2013).
Despite the above stated limitations, this study provides support for the use of individual parent education in PRT in community-based treatment facilities to teach parents to create opportunities for initiations. Our findings also suggest that delivering parent education in a group format is moderately effective for this purpose. Also, providing parents with opportunities to meet with other parents in similar circumstances may result in reductions in parental stress and increases in self-efficacy. As current demand for treatment services for children with ASD exceeds the availability of such services and effective and efficient interventions are essential, clinicians in community-based treatment facilities may choose to combine individual parent education in PRT with group sessions. Further research is warranted to identify parent and child characteristics that affect effectiveness of parent education in PRT in order to be able to tailor interventions to meet each individual’s needs and to optimize individual outcomes.
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