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Evaluation of an online training program to improve family routines, parental well-being, and the behavior of children with autism
Research in Autism Spectrum Disorders 54 (2018) 21–26
Contents lists available at ScienceDirect
Research in Autism Spectrum Disorders journal homepage: www.elsevier.com/locate/rasd
Brief Report
Evaluation of an online training program to improve family routines, parental well-being, and the behavior of children with autism
T
⁎
Jordan Pennefathera, , Meme Hienemanb, Tracy J. Raulstona,c, Nell Carawaya a
IRIS Educational Media, 1203 Willamette Street, Eugene OR, 97401, United States Positive Behavior Support Applications, 3558 Shoreline Circle, Palm Harbor, FL, 34684, United States c The Pennsylvania State University, 125 Cedar Building, University Park, PA, 16802, United States b
A R T IC LE I N F O
ABS TRA CT
Number of review completed is 2
Background: Parents of children with autism spectrum disorder (ASD) are at an increased risk for stress, and their children often display high rates of problem behavior. There is a robust literature base showing that training parents to implement applied behavior analytic (ABA) interventions helps reduce their child’s challenging behavior. However, some parents continue to report high rates of stress that may interfere with implementation. Adding cognitive-affective strategies such as ACT and optimism training to ABA may be beneficial. Telehealth models have the potential to reach parents who may not otherwise be able to access parent training, making evidence-based programs more readily available. Method: Twenty-three parents (with 16 completing posttest assessments) of children with autism (ages four to eight) participated in a three-week online training program. Topics covered included instruction in ABA principles as well as stress reduction strategies and mediation practice based on ACT principles. The intervention included weekly synchronous online meetings with other parents and two parent educators, as well as supplemental assignments completed between sessions. Results: We found that after the intervention parents reported: (1) decreases in parental stress, (2) increases in relevant knowledge, (3) increases in child prosocial behavior, (4) decreases in hyperactive behaviors, and (5) high levels of satisfaction with the intervention. Conclusions: This online program, combining ABA and stress reduction practices, resulted in positive outcomes for children with autism and their families. Although this was a small sample size, this early investigation offers promise for delivering this combined intervention approach effectively online. Training small groups of parents in an online format may be a feasible, efficient service delivery method.
Keywords: Autism spectrum disorder Parent training Applied behavior analysis Acceptance and commitment training Online training
It is estimated that 1 in 68 children will be diagnosed with autism spectrum disorder (ASD) (Center for Disease Control & Prevention, 2014). Children with ASD experience significant social and communication deficits (American Psychiatric Association, 2013) that are associated with behavioral challenges such as aggression, severe noncompliance, tantrums, self-injury, and elopement (Baghdali, Pascal, Grisi, & Aussilloux, 2003; Hartle, y, Sikora, & McCoy, 2008; Kanne & Mazurek, 2011). Problem behavior, left unchecked, can negatively impact children’s psychosocial, emotional, and physical health (Kuhlthau et al., 2011). It can also be damaging for families. Parents of children with ASD report higher levels of stress than parents of typically-developing children ⁎
Corresponding author. E-mail address: [email protected] (J. Pennefather).
https://doi.org/10.1016/j.rasd.2018.06.006 Received 13 September 2017; Received in revised form 11 June 2018; Accepted 15 June 2018 1750-9467/ © 2018 Elsevier Ltd. All rights reserved.
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(Schieve, Blumberg, Rice, Visser, & Boyle, 2007) and children with other disabilities (Eisenhower, Baker, & Blacher, 2005). Further, the relationship between parental stress and child problem behavior appears to be bidirectional, (Neece, Green, & Baker, 2012). Stress can undermine a parent’s ability to participate fully in intervention and implement strategies as designed, and therefore reduce the positive outcomes for their children (Head & Abbeduto, 2007). Interventions based in the principles of applied behavior analysis (ABA) have been demonstrated to be extremely effective in remediating behavioral challenges for children with ASD (National Autism Center, 2015). These interventions have typically been delivered via individualized, often intensive, in-home or clinic-based therapy with the children (Eikeseth, Smith, Jahr, & Eldevik, 2007; Howling, Magiati, & Charman, 2009) and behavioral parent training (Matson, Mahan, & Matson, 2009). Unfortunately, there are barriers to ABA therapy. Individualized intervention is expensive and difficult to obtain due to a shortage of providers (Behavior Analyst Certification Board, 2015). Many families living in rural settings cannot access services (Koegel, Symon, & Koegel, 2002; Terry, 2009) and long wait lists are the norm (Wacker et al., 2013). Intervention programs are utilizing telehealth technologies to reach more families and reduce transportation time and costs for therapists (Lindgren et al., 2016; Wacker et al., 2013). Attrition in behavioral parent training is high, with estimates of 40–60% of parents not finishing programs (Chacko et al., 2016). This may be for a number of reasons. Basic behavioral concepts and the related strategies may be difficult for parents to apply and maintain in natural settings given the demands of families’ lives (McConnell, Parakkal, Savage, & Rempel, 2015). Traditional therapist-directed behavioral services may therefore increase, rather than decrease, family stress (Hastings & Beck, 2004). Given these concerns, recommended practice guidelines in early, home-based behavioral intervention for children with autism and other disabilities now emphasize building parents’ capacity to support their children’s behavior within the context of daily life (Division for Early Childhood, 2014). Effective behavioral support is characterized by comprehensive, function-based strategies that fit within natural routines and are designed not only to improve behavior, but quality of life as well (Carr et al., 2002). The elements of plans should include implementing proactive strategies to prevent problems and prompt positive behavior, teaching replacement skills and other desired behaviors, and managing contingencies so that reinforcement is delivered only following positive behavior. Numerous studies have evaluated such behavioral interventions in families and found comprehensive, function and routine-based intervention to be effective (Dunlap et al., 2006; Fettig & Barton, 2014; Lucyshyn et al., 2015) and likely more sustainable than less-contextualized interventions. Even when parents receive appropriate, contextualized behavioral parent training, stress can make it difficult for them to participate fully and follow through with interventions (Neece et al., 2012). As a result, there is increasing recognition that parents need “adjunctive supports”, often offered in the form of loosely structured support groups or counseling (Boyd, 2002; Kazdin, 2005). Researchers have also begun integrating cognitive-behavioral and mindfulness-based stress reduction practices such as Acceptance and Commitment Training (ACT; Blackledge & Hayes, 2006) and optimism training (Durand, Hieneman, Clarke, Wang, & Rinaldi, 2013) into behavioral parent training. By doing so, parents learn not only behavioral principles and practices, but also how to recognize the thoughts and feelings they are experiencing and their impact on their actions, as well as how to remain more present and positive when facing difficult behavior so that they can follow through with interventions. ACT has been successfully applied in samples of parents of children with ASD, showing reductions in depression and distress and increases in psychological flexibility (Blackledge & Hayes, 2006), as well as increases in values-directed behaviors (e.g., engaging in self-care activities) (Gould, Tarbox, & Coyne, 2017). In the study by Durand et al. (2013), parents and children in both groups experienced improvements in child behavior within targeted routines and parental self-efficacy, but the inclusion of optimism training produced more generalized changes in child behavior. Combining ABA with cognitive-affective approaches offer significant promise, but programs evaluated to date have been time-consuming (e.g., 10 weeks in duration), reducing their practicality for already challenged families. Ready access to trained clinicians and content that integrates these evidence-based practices continue to be a problem. Telehealth, which is now being used as a delivery method in behavioral intervention, offers a flexible and effective alternative to home or clinicbased services (Machalicek et al., 2016; Wacker et al., 2013). Online training programs create a mechanism for sharing information and structuring interventions and allow participants flexible access as needed. Evidence-based practices and clinical support may be available during times that are convenient for parents and within their own home, increasing their ability to participate. In this pilot investigation, we evaluated a program in which small groups of parents (2–4 parents per group) attended three online meetings led by two parent educators. Parents also had access to a Google + Community site where videos, audios, interactive forms and resource links provided information on ABA, ACT, and optimism training. Our research question was: is a telehealth model that brings parents and parent educators together via social media and video-chat software (such as Google+ Hangouts and Communities), a feasible, usable, and socially valid method of delivering effective instruction and support to parents on the topics of child behavior, building family routines, and stress reduction? We hypothesized that participants completing the Autism Parent Training (APT) would (a) exhibit changes in pre-post measures of reported child behaviors, (b) exhibit decreases in stress, (c) exhibit increases in knowledge about ABA practices, and (d) report high levels of consumer satisfaction and usability. 1. Method We evaluated the feasibility, usability, and acceptance of APT pilot study, using a within-subjects repeated measures pre- and post-training study design over a three-week intervention period. This design evaluated the potential for efficacy for preliminary prototypes (Gall, Gall, & Borg, 2007; Shadish, Cook, & Leviton, 1991) by examining changes in user outcomes including child behaviors, parental stress, and knowledge. 22
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1.1. Participants Twenty-three parents (21 mothers; 2 fathers) of children with autism enrolled in the study, of which 16 completed post-test (30% attrition). The mean parent age was 37.8 years old (SD = 5.9; range 31–52). Of the parents who completed the program and posttest assessments, one identified as Latino/a and one preferred not to answer, with the other 14 identifying as non-Latino/a. One identified as Asian, two as African-American/Black, and the other 13 as Caucasian/White. Parents reported diverse levels of economic background, with household incomes ranging from under $10,000 to over $100,000 as well as diverse levels of education, ranging from some college to graduate degrees. Three of the sixteen parents who completed posttest assessment reported having two children diagnosed with autism. For the current study the parents with two children with autism were asked to select one child on which to report. Twelve of the children were male and four were female, with mean age of six (SD = 1.6; range 4–8), with an average score of 32.9 (SD = 7.0) on the Childhood Autism Rating Scale (CARS 2nd Edition; Schopler, Van Bourgondien, Wellman, & Love, 2010). One parent reported being the adoptive parent of the child with autism with the rest being biological parents. 1.2. Materials Change Measures. To evaluate hypothesized change on our outcomes we collected the following assessments at pretest and posttest: the Strengths and Difficulties Questionnaire–Parent Report (SDQ-P; Goodman, 1997), the Parental Stress Scale (PSS; Berry & Jones, 1995), the Daily Coping Inventory (DCI; Stone & Neale, 1984), and a Parenting Knowledge Test (PKT) consisting of 14 questions based on content taught in the training to determine the extent to which participants understood and were able to apply ABA techniques to help their child master self-care routines. All of the scales, with the exception of the Parenting Knowledge Test have been normed and validated in previous work with parents of children with ASD and have demonstrated internal reliability at both the full scale and subscale levels. The SDQ has been used with parents of children with ASD and has been found to be able to distinguish between their children and a community sample on both the total scale and the five subscales (Salayev, Sanne, & Salayev, 2017; Louie, Cromer, & Berry, 2017), and has satisfactory internal (α = .73) and test-retest (α = .62) reliabilities (Goodman, 2001). The PSS “can distinguish between parents of typically developing children and parents of children with developmental disabilities” (Berry & Jones, 1995) and has been used with parents of children with ASD (Vidyasagar & Koshy, 2010), and has good internal (α = .83) and test-retest (α = .81) reliabilities. The DCI consists of one item asking about stress specific to parenting their child with ASD and 11 items on individual stress coping strategies. The strategies items have low internal reliability (α = .64) and so were analyzed individually. The Parenting Knowledge Test was created for the current evaluation through iterative development with a focus on content and face validity. Response scales included true/false, multiple-choice, and multiple-answer. For example, we asked “If your child does not increase his/her independence in performing the skill you are teaching you should…” with incorrect response options of “(A) Fade the supportive prompts to perform the behavior”, “(B) Pick a simpler skill”, and the correct option of “(C) Break the skill down into smaller steps”. Total scores on the Parenting Knowledge Test, out of 14 were calculated at pretest and posttest. Social Validity Measures. Social validity was assessed following intervention using a self-report questionnaire with a 6-point Likert rating ranging from 1 (strongly disagree) to 6 (strongly agree). For example, “Overall, I was satisfied with the quality of the APT program”, “I was satisfied with the direct contact with experts (parent educators) in the APT program”, and “I would recommend the APT program to other parents”. The instrument assessed overall satisfaction and perspectives about the individual features and delivery of the program. 1.3. Procedures All research was conducted online. Participants were directed to the Qualtrics® recruitment website and screened for eligibility based on inclusion criteria: (a) a child between the ages four to eight years old diagnosed with autism and living with the parent and (b) access to email, Internet connection, and a computer with a web camera and microphone. Eligible participants completed an online informed consent and pretest assessment and were scheduled into training groups based on their availability. Participants were then assisted by technical staff with connecting to and using Google+ Hangouts, an online video-chat platform. Once a week for three weeks, parents met online with their training group and two APT parent educators for 90-minute synchronous online sessions of instruction, discussion, and problem solving. The parent educators included a doctoral level clinical psychologist and a master’s level early childhood intervention specialist. Both had over 20 years’ experience in autism intervention, and practiced mindfulness, a component of ACT. Groups were scheduled during evenings and weekends and consisted of two to four parents per group. The agenda for each session included brief introductions; a review of the class agenda and goals; instruction in ABA principles covering the function of behavior, the “Antecedent Behavior Consequence” sequence, and data collection; and stress reduction instruction and mediation practice based on ACT principles including detaching from thoughts, mindfulness and exploring values. Each session allowed time for direct instruction and group discussion and used short videos and audio meditations to model recommended strategies. Each session concluded with a homework assignment to access resources on a Google + Community page (videos, audio mediations, forms for planning and recording behavior, tip sheets, and summary pages), and encouragement for parents to share knowledge and support by posting on the Community page. During the live sessions with parents, the training was structured so that parent educators covered all items on each classes’ agenda. Parents had copies of the agendas and knew the items to be covered and the time allotted for each. Time was built into each agenda item to allow for parent responses. The homework assignments were reviewed at the end of each class and posted on the Google + Community page. After completing the three-session 23
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Table 1 Paired Sample t-tests. Pre Intervention
Child Behaviors (SDQ-P) Emotional Problems Conduct Problems Hyperactivity Peer Problems Prosocial Stress (DCI) Stress (PSS) Knowledge
Post Intervention
Cohen's
M
SD
M
SD
t
D
3.1 3.3 8.8 4.6 3.3s 5.3 2.6 8.0
1.8 1.5 1.6 1.0 1.7 1.5 0.5 2.0
2.9 2.8 7.6 4.6 4.3 4.2 2.4 9.5
2.1 1.5 1.9 1.9 2.3 1.7 0.4 1.8
0.51 1.28 2.95** 0.00 −3.44** 2.12* 1.81 −2.60*
0.13 0.32 0.74 0 0.86 0.53 0.45 0.65
N = 16 for all analyses. * p < .05. ** p < .01.
training, parents completed the post assessment via a Qualtrics® link. 2. Results As data collection was completed using Qualtrics®, using forced completion on the outcome measures there were no missing data for completed surveys. All outcome analyses include only participants who completed the pretest and posttest. Analyses on the pretest outcome measures (SDQ, PSS, DCI, and PKT) comparing those who did (n = 16) and did not complete (n = 7) posttest did not detect any significant differences (all p > .40). Additionally, the completers and non-completers did not differ significantly (all p > .11) on age, age of child, number of children with ASD, family income, race, ethnicity, educational background, time spent on learning about ASD, or money spent yearly on ASD related expenses. Results of pre-post comparisons are in Table 1. After exposure to the program and using the practices with their child, parents reported that their children exhibited less hyperactive behaviors and more prosocial behaviors. We also found the predicted decreases in parental stress specific to their child with autism as measured by the stressor measure on the DCI; however, overall parental stress (PSS) did not significantly decrease, nor did the stress coping strategies employed change as measured by the DCI. As predicted, parents demonstrated increases in knowledge about ABA practices. Measures of child behavioral items, parental knowledge, and stress showed the predicted changes at posttest, with large effects (Cohen’s d > 0.8) on prosocial child behavior improvements; medium effects (Cohen’s d > 0.5) on decreased child hyperactivity, parental knowledge, and parental stress. On a 6-point Likert scale, the average rating of the overall quality of the program was 5.77 (SD = 0.6), with all parents stating that they would recommend the program to other parents. Participants reported being highly satisfied with their contact with the parent educators (M = 5.77; SD = 0.4) and both the ABA (M = 5.6; SD = 0.6) and ACT (M = 5.23; SD = 0.7) content. They reported finding the program content to be well organized (M = 5.7; SD = 0.7), and the ABA (M = 5.6; SD = 0.6) and ACT (M = 5.2; SD = 0.7) strategies easy to understand. Thirteen of the parents agreed on a 6-point Likert scale that the 1.5 h sessions were the right amount of time, with the others preferring shorter sessions (range: 30–70 minutes). 3. Discussion and implications This three-week online training, that combined ABA within family routines with ACT and optimism training, resulted in improvements in measures of child behavior and reductions in self-reported stress for parents specific to their child. This pilot investigation was important because it showed that (a) evidence that blending the two evidence-based practices may be beneficial, (b) the program could be administered to improve parent knowledge and therefore help parents address behavioral concerns more effectively within the context of their daily lives, and (c) it could be delivered online in an efficient manner as compared with existing parent training and stress reduction practices. The study expanded upon the extant literature in the following ways. First, we combined evidence-based practices (i.e., ABA and cognitive-affective interventions) into a single program that was delivered online. Interventions based on ABA principles are typically provided as a stand-alone intervention, and most cognitivebehavioral and stress management interventions are not embedded within behavioral – or even parenting – practices (e.g., Blackledge & Hayes, 2006). We targeted parental stress within the context of addressing children’s challenging behavior within family routines. Given the bidirectional relationship between child challenging behavior and parenting stress (Neece et al., 2012), this combination may offer promise. The extant literature on ACT and mindfulness-based interventions for parents of children with ASD is comprised of lengthy, in-person trainings that have resulted in positive outcomes in parental well-being, yet only a few studies have found improvements in children behavior (Cachia, Anderson, & Moore, 2016). Intervening upon parental well-being alone may not be sufficient to produce change in children’s behavior. Second, this study differs from broad telehealth behavioral parent training in that we trained parents on ABA principles – rather than just procedures, allowing the parents to build plans they could adapt over time and that would fit given their circumstances. Most telehealth research for parents of children with ASD has focused on training parents to deliver specific behavioral interventions 24
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to their children (e.g., Machalicek et al., 2016). Increasingly, researchers are recognizing that it is important to empower parents as effective problem-solvers, so they can use approaches within their daily lives (Durand et al., 2013; Sears, Blair, Iovannone, & Crosland, 2013). This may be a reason parents rated the social validity of the program so favorably. Finally, we delivered online education in a small group format. Telehealth behavioral parent training has traditionally educated parents of children with ASD in a one-to-one format. While effective, this approach does not capitalize on the social connections and cross-training that might occur in a group setting. This could be an advantage in this study given that parents of children with ASD report high rates of social isolation (Boyd, 2002). It could also be an advantage because more parents can access services simultaneously, reducing the cost and increasing the accessibility of services. We were able to implement this program in just three online sessions. The current study did have limitations. First, it was a small sample of parents. Although the results were statistically significant, one could argue that the limited sample of 16 parents decreases external validity and the ability to generalize the finding more broadly. The attrition rate of 30%, while certainly not uncommon in parent training programs, is lower than average attrition (i.e. 50%; Chacko et al., 2016; Matson et al., 2009), contributed to the small sample size. Second, there was no control group with which to compare. There are a number of issues with study designs without control groups including regression to the mean and history effects (e.g., parents engaging in other training). Future research should replicate brief online parent trainings with larger groups of parents in randomized control trials, which would address the issues of regression to the mean, history effect, and possible confound. Third, by combining interventions, we are unable to tease out whether the parents were responding to learning the ABA or ACT and optimism content, or even if simply having contact with other parents and guidance from parent educators could have affected the outcomes. Future investigations should aim to identify the active ingredients of combined approaches to parent training. Finally, the relative short evaluation period did not allow for evaluation of change over a longer period of time, nor whether the changes would maintain. Future research should add a follow-up assessment to assess whether the change would persist or even increase over time. Future studies should take the aforementioned issues into consideration, clarifying the protocols, offering a comparison group, and holding aspects of the program constant to clarify the essential features. It would also be beneficial for future investigations to evaluate the potential additive benefits of informal social supports and investigate the acceptability and feasibility of various online platforms for connecting parents together. In conclusion, programs that combine evidence-based methods to address child problem behavior and parenting stress and make these programs available in easy-to-access platforms offer promise for improving parents' ability to effectively support their children with autism. Conflict of interest The authors have no conflicts of interest. Acknowledgements This study was made possible by a grant funded by the National Institutes of Health (2R44MH102845 – 02). Opinions expressed herein do not necessarily reflect the policy of the National Institutes of Health, and no official endorsement should be inferred. References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). 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Contents lists available at ScienceDirect
Research in Autism Spectrum Disorders journal homepage: www.elsevier.com/locate/rasd
Brief Report
Evaluation of an online training program to improve family routines, parental well-being, and the behavior of children with autism
T
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Jordan Pennefathera, , Meme Hienemanb, Tracy J. Raulstona,c, Nell Carawaya a
IRIS Educational Media, 1203 Willamette Street, Eugene OR, 97401, United States Positive Behavior Support Applications, 3558 Shoreline Circle, Palm Harbor, FL, 34684, United States c The Pennsylvania State University, 125 Cedar Building, University Park, PA, 16802, United States b
A R T IC LE I N F O
ABS TRA CT
Number of review completed is 2
Background: Parents of children with autism spectrum disorder (ASD) are at an increased risk for stress, and their children often display high rates of problem behavior. There is a robust literature base showing that training parents to implement applied behavior analytic (ABA) interventions helps reduce their child’s challenging behavior. However, some parents continue to report high rates of stress that may interfere with implementation. Adding cognitive-affective strategies such as ACT and optimism training to ABA may be beneficial. Telehealth models have the potential to reach parents who may not otherwise be able to access parent training, making evidence-based programs more readily available. Method: Twenty-three parents (with 16 completing posttest assessments) of children with autism (ages four to eight) participated in a three-week online training program. Topics covered included instruction in ABA principles as well as stress reduction strategies and mediation practice based on ACT principles. The intervention included weekly synchronous online meetings with other parents and two parent educators, as well as supplemental assignments completed between sessions. Results: We found that after the intervention parents reported: (1) decreases in parental stress, (2) increases in relevant knowledge, (3) increases in child prosocial behavior, (4) decreases in hyperactive behaviors, and (5) high levels of satisfaction with the intervention. Conclusions: This online program, combining ABA and stress reduction practices, resulted in positive outcomes for children with autism and their families. Although this was a small sample size, this early investigation offers promise for delivering this combined intervention approach effectively online. Training small groups of parents in an online format may be a feasible, efficient service delivery method.
Keywords: Autism spectrum disorder Parent training Applied behavior analysis Acceptance and commitment training Online training
It is estimated that 1 in 68 children will be diagnosed with autism spectrum disorder (ASD) (Center for Disease Control & Prevention, 2014). Children with ASD experience significant social and communication deficits (American Psychiatric Association, 2013) that are associated with behavioral challenges such as aggression, severe noncompliance, tantrums, self-injury, and elopement (Baghdali, Pascal, Grisi, & Aussilloux, 2003; Hartle, y, Sikora, & McCoy, 2008; Kanne & Mazurek, 2011). Problem behavior, left unchecked, can negatively impact children’s psychosocial, emotional, and physical health (Kuhlthau et al., 2011). It can also be damaging for families. Parents of children with ASD report higher levels of stress than parents of typically-developing children ⁎
Corresponding author. E-mail address: [email protected] (J. Pennefather).
https://doi.org/10.1016/j.rasd.2018.06.006 Received 13 September 2017; Received in revised form 11 June 2018; Accepted 15 June 2018 1750-9467/ © 2018 Elsevier Ltd. All rights reserved.
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(Schieve, Blumberg, Rice, Visser, & Boyle, 2007) and children with other disabilities (Eisenhower, Baker, & Blacher, 2005). Further, the relationship between parental stress and child problem behavior appears to be bidirectional, (Neece, Green, & Baker, 2012). Stress can undermine a parent’s ability to participate fully in intervention and implement strategies as designed, and therefore reduce the positive outcomes for their children (Head & Abbeduto, 2007). Interventions based in the principles of applied behavior analysis (ABA) have been demonstrated to be extremely effective in remediating behavioral challenges for children with ASD (National Autism Center, 2015). These interventions have typically been delivered via individualized, often intensive, in-home or clinic-based therapy with the children (Eikeseth, Smith, Jahr, & Eldevik, 2007; Howling, Magiati, & Charman, 2009) and behavioral parent training (Matson, Mahan, & Matson, 2009). Unfortunately, there are barriers to ABA therapy. Individualized intervention is expensive and difficult to obtain due to a shortage of providers (Behavior Analyst Certification Board, 2015). Many families living in rural settings cannot access services (Koegel, Symon, & Koegel, 2002; Terry, 2009) and long wait lists are the norm (Wacker et al., 2013). Intervention programs are utilizing telehealth technologies to reach more families and reduce transportation time and costs for therapists (Lindgren et al., 2016; Wacker et al., 2013). Attrition in behavioral parent training is high, with estimates of 40–60% of parents not finishing programs (Chacko et al., 2016). This may be for a number of reasons. Basic behavioral concepts and the related strategies may be difficult for parents to apply and maintain in natural settings given the demands of families’ lives (McConnell, Parakkal, Savage, & Rempel, 2015). Traditional therapist-directed behavioral services may therefore increase, rather than decrease, family stress (Hastings & Beck, 2004). Given these concerns, recommended practice guidelines in early, home-based behavioral intervention for children with autism and other disabilities now emphasize building parents’ capacity to support their children’s behavior within the context of daily life (Division for Early Childhood, 2014). Effective behavioral support is characterized by comprehensive, function-based strategies that fit within natural routines and are designed not only to improve behavior, but quality of life as well (Carr et al., 2002). The elements of plans should include implementing proactive strategies to prevent problems and prompt positive behavior, teaching replacement skills and other desired behaviors, and managing contingencies so that reinforcement is delivered only following positive behavior. Numerous studies have evaluated such behavioral interventions in families and found comprehensive, function and routine-based intervention to be effective (Dunlap et al., 2006; Fettig & Barton, 2014; Lucyshyn et al., 2015) and likely more sustainable than less-contextualized interventions. Even when parents receive appropriate, contextualized behavioral parent training, stress can make it difficult for them to participate fully and follow through with interventions (Neece et al., 2012). As a result, there is increasing recognition that parents need “adjunctive supports”, often offered in the form of loosely structured support groups or counseling (Boyd, 2002; Kazdin, 2005). Researchers have also begun integrating cognitive-behavioral and mindfulness-based stress reduction practices such as Acceptance and Commitment Training (ACT; Blackledge & Hayes, 2006) and optimism training (Durand, Hieneman, Clarke, Wang, & Rinaldi, 2013) into behavioral parent training. By doing so, parents learn not only behavioral principles and practices, but also how to recognize the thoughts and feelings they are experiencing and their impact on their actions, as well as how to remain more present and positive when facing difficult behavior so that they can follow through with interventions. ACT has been successfully applied in samples of parents of children with ASD, showing reductions in depression and distress and increases in psychological flexibility (Blackledge & Hayes, 2006), as well as increases in values-directed behaviors (e.g., engaging in self-care activities) (Gould, Tarbox, & Coyne, 2017). In the study by Durand et al. (2013), parents and children in both groups experienced improvements in child behavior within targeted routines and parental self-efficacy, but the inclusion of optimism training produced more generalized changes in child behavior. Combining ABA with cognitive-affective approaches offer significant promise, but programs evaluated to date have been time-consuming (e.g., 10 weeks in duration), reducing their practicality for already challenged families. Ready access to trained clinicians and content that integrates these evidence-based practices continue to be a problem. Telehealth, which is now being used as a delivery method in behavioral intervention, offers a flexible and effective alternative to home or clinicbased services (Machalicek et al., 2016; Wacker et al., 2013). Online training programs create a mechanism for sharing information and structuring interventions and allow participants flexible access as needed. Evidence-based practices and clinical support may be available during times that are convenient for parents and within their own home, increasing their ability to participate. In this pilot investigation, we evaluated a program in which small groups of parents (2–4 parents per group) attended three online meetings led by two parent educators. Parents also had access to a Google + Community site where videos, audios, interactive forms and resource links provided information on ABA, ACT, and optimism training. Our research question was: is a telehealth model that brings parents and parent educators together via social media and video-chat software (such as Google+ Hangouts and Communities), a feasible, usable, and socially valid method of delivering effective instruction and support to parents on the topics of child behavior, building family routines, and stress reduction? We hypothesized that participants completing the Autism Parent Training (APT) would (a) exhibit changes in pre-post measures of reported child behaviors, (b) exhibit decreases in stress, (c) exhibit increases in knowledge about ABA practices, and (d) report high levels of consumer satisfaction and usability. 1. Method We evaluated the feasibility, usability, and acceptance of APT pilot study, using a within-subjects repeated measures pre- and post-training study design over a three-week intervention period. This design evaluated the potential for efficacy for preliminary prototypes (Gall, Gall, & Borg, 2007; Shadish, Cook, & Leviton, 1991) by examining changes in user outcomes including child behaviors, parental stress, and knowledge. 22
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1.1. Participants Twenty-three parents (21 mothers; 2 fathers) of children with autism enrolled in the study, of which 16 completed post-test (30% attrition). The mean parent age was 37.8 years old (SD = 5.9; range 31–52). Of the parents who completed the program and posttest assessments, one identified as Latino/a and one preferred not to answer, with the other 14 identifying as non-Latino/a. One identified as Asian, two as African-American/Black, and the other 13 as Caucasian/White. Parents reported diverse levels of economic background, with household incomes ranging from under $10,000 to over $100,000 as well as diverse levels of education, ranging from some college to graduate degrees. Three of the sixteen parents who completed posttest assessment reported having two children diagnosed with autism. For the current study the parents with two children with autism were asked to select one child on which to report. Twelve of the children were male and four were female, with mean age of six (SD = 1.6; range 4–8), with an average score of 32.9 (SD = 7.0) on the Childhood Autism Rating Scale (CARS 2nd Edition; Schopler, Van Bourgondien, Wellman, & Love, 2010). One parent reported being the adoptive parent of the child with autism with the rest being biological parents. 1.2. Materials Change Measures. To evaluate hypothesized change on our outcomes we collected the following assessments at pretest and posttest: the Strengths and Difficulties Questionnaire–Parent Report (SDQ-P; Goodman, 1997), the Parental Stress Scale (PSS; Berry & Jones, 1995), the Daily Coping Inventory (DCI; Stone & Neale, 1984), and a Parenting Knowledge Test (PKT) consisting of 14 questions based on content taught in the training to determine the extent to which participants understood and were able to apply ABA techniques to help their child master self-care routines. All of the scales, with the exception of the Parenting Knowledge Test have been normed and validated in previous work with parents of children with ASD and have demonstrated internal reliability at both the full scale and subscale levels. The SDQ has been used with parents of children with ASD and has been found to be able to distinguish between their children and a community sample on both the total scale and the five subscales (Salayev, Sanne, & Salayev, 2017; Louie, Cromer, & Berry, 2017), and has satisfactory internal (α = .73) and test-retest (α = .62) reliabilities (Goodman, 2001). The PSS “can distinguish between parents of typically developing children and parents of children with developmental disabilities” (Berry & Jones, 1995) and has been used with parents of children with ASD (Vidyasagar & Koshy, 2010), and has good internal (α = .83) and test-retest (α = .81) reliabilities. The DCI consists of one item asking about stress specific to parenting their child with ASD and 11 items on individual stress coping strategies. The strategies items have low internal reliability (α = .64) and so were analyzed individually. The Parenting Knowledge Test was created for the current evaluation through iterative development with a focus on content and face validity. Response scales included true/false, multiple-choice, and multiple-answer. For example, we asked “If your child does not increase his/her independence in performing the skill you are teaching you should…” with incorrect response options of “(A) Fade the supportive prompts to perform the behavior”, “(B) Pick a simpler skill”, and the correct option of “(C) Break the skill down into smaller steps”. Total scores on the Parenting Knowledge Test, out of 14 were calculated at pretest and posttest. Social Validity Measures. Social validity was assessed following intervention using a self-report questionnaire with a 6-point Likert rating ranging from 1 (strongly disagree) to 6 (strongly agree). For example, “Overall, I was satisfied with the quality of the APT program”, “I was satisfied with the direct contact with experts (parent educators) in the APT program”, and “I would recommend the APT program to other parents”. The instrument assessed overall satisfaction and perspectives about the individual features and delivery of the program. 1.3. Procedures All research was conducted online. Participants were directed to the Qualtrics® recruitment website and screened for eligibility based on inclusion criteria: (a) a child between the ages four to eight years old diagnosed with autism and living with the parent and (b) access to email, Internet connection, and a computer with a web camera and microphone. Eligible participants completed an online informed consent and pretest assessment and were scheduled into training groups based on their availability. Participants were then assisted by technical staff with connecting to and using Google+ Hangouts, an online video-chat platform. Once a week for three weeks, parents met online with their training group and two APT parent educators for 90-minute synchronous online sessions of instruction, discussion, and problem solving. The parent educators included a doctoral level clinical psychologist and a master’s level early childhood intervention specialist. Both had over 20 years’ experience in autism intervention, and practiced mindfulness, a component of ACT. Groups were scheduled during evenings and weekends and consisted of two to four parents per group. The agenda for each session included brief introductions; a review of the class agenda and goals; instruction in ABA principles covering the function of behavior, the “Antecedent Behavior Consequence” sequence, and data collection; and stress reduction instruction and mediation practice based on ACT principles including detaching from thoughts, mindfulness and exploring values. Each session allowed time for direct instruction and group discussion and used short videos and audio meditations to model recommended strategies. Each session concluded with a homework assignment to access resources on a Google + Community page (videos, audio mediations, forms for planning and recording behavior, tip sheets, and summary pages), and encouragement for parents to share knowledge and support by posting on the Community page. During the live sessions with parents, the training was structured so that parent educators covered all items on each classes’ agenda. Parents had copies of the agendas and knew the items to be covered and the time allotted for each. Time was built into each agenda item to allow for parent responses. The homework assignments were reviewed at the end of each class and posted on the Google + Community page. After completing the three-session 23
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Table 1 Paired Sample t-tests. Pre Intervention
Child Behaviors (SDQ-P) Emotional Problems Conduct Problems Hyperactivity Peer Problems Prosocial Stress (DCI) Stress (PSS) Knowledge
Post Intervention
Cohen's
M
SD
M
SD
t
D
3.1 3.3 8.8 4.6 3.3s 5.3 2.6 8.0
1.8 1.5 1.6 1.0 1.7 1.5 0.5 2.0
2.9 2.8 7.6 4.6 4.3 4.2 2.4 9.5
2.1 1.5 1.9 1.9 2.3 1.7 0.4 1.8
0.51 1.28 2.95** 0.00 −3.44** 2.12* 1.81 −2.60*
0.13 0.32 0.74 0 0.86 0.53 0.45 0.65
N = 16 for all analyses. * p < .05. ** p < .01.
training, parents completed the post assessment via a Qualtrics® link. 2. Results As data collection was completed using Qualtrics®, using forced completion on the outcome measures there were no missing data for completed surveys. All outcome analyses include only participants who completed the pretest and posttest. Analyses on the pretest outcome measures (SDQ, PSS, DCI, and PKT) comparing those who did (n = 16) and did not complete (n = 7) posttest did not detect any significant differences (all p > .40). Additionally, the completers and non-completers did not differ significantly (all p > .11) on age, age of child, number of children with ASD, family income, race, ethnicity, educational background, time spent on learning about ASD, or money spent yearly on ASD related expenses. Results of pre-post comparisons are in Table 1. After exposure to the program and using the practices with their child, parents reported that their children exhibited less hyperactive behaviors and more prosocial behaviors. We also found the predicted decreases in parental stress specific to their child with autism as measured by the stressor measure on the DCI; however, overall parental stress (PSS) did not significantly decrease, nor did the stress coping strategies employed change as measured by the DCI. As predicted, parents demonstrated increases in knowledge about ABA practices. Measures of child behavioral items, parental knowledge, and stress showed the predicted changes at posttest, with large effects (Cohen’s d > 0.8) on prosocial child behavior improvements; medium effects (Cohen’s d > 0.5) on decreased child hyperactivity, parental knowledge, and parental stress. On a 6-point Likert scale, the average rating of the overall quality of the program was 5.77 (SD = 0.6), with all parents stating that they would recommend the program to other parents. Participants reported being highly satisfied with their contact with the parent educators (M = 5.77; SD = 0.4) and both the ABA (M = 5.6; SD = 0.6) and ACT (M = 5.23; SD = 0.7) content. They reported finding the program content to be well organized (M = 5.7; SD = 0.7), and the ABA (M = 5.6; SD = 0.6) and ACT (M = 5.2; SD = 0.7) strategies easy to understand. Thirteen of the parents agreed on a 6-point Likert scale that the 1.5 h sessions were the right amount of time, with the others preferring shorter sessions (range: 30–70 minutes). 3. Discussion and implications This three-week online training, that combined ABA within family routines with ACT and optimism training, resulted in improvements in measures of child behavior and reductions in self-reported stress for parents specific to their child. This pilot investigation was important because it showed that (a) evidence that blending the two evidence-based practices may be beneficial, (b) the program could be administered to improve parent knowledge and therefore help parents address behavioral concerns more effectively within the context of their daily lives, and (c) it could be delivered online in an efficient manner as compared with existing parent training and stress reduction practices. The study expanded upon the extant literature in the following ways. First, we combined evidence-based practices (i.e., ABA and cognitive-affective interventions) into a single program that was delivered online. Interventions based on ABA principles are typically provided as a stand-alone intervention, and most cognitivebehavioral and stress management interventions are not embedded within behavioral – or even parenting – practices (e.g., Blackledge & Hayes, 2006). We targeted parental stress within the context of addressing children’s challenging behavior within family routines. Given the bidirectional relationship between child challenging behavior and parenting stress (Neece et al., 2012), this combination may offer promise. The extant literature on ACT and mindfulness-based interventions for parents of children with ASD is comprised of lengthy, in-person trainings that have resulted in positive outcomes in parental well-being, yet only a few studies have found improvements in children behavior (Cachia, Anderson, & Moore, 2016). Intervening upon parental well-being alone may not be sufficient to produce change in children’s behavior. Second, this study differs from broad telehealth behavioral parent training in that we trained parents on ABA principles – rather than just procedures, allowing the parents to build plans they could adapt over time and that would fit given their circumstances. Most telehealth research for parents of children with ASD has focused on training parents to deliver specific behavioral interventions 24
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to their children (e.g., Machalicek et al., 2016). Increasingly, researchers are recognizing that it is important to empower parents as effective problem-solvers, so they can use approaches within their daily lives (Durand et al., 2013; Sears, Blair, Iovannone, & Crosland, 2013). This may be a reason parents rated the social validity of the program so favorably. Finally, we delivered online education in a small group format. Telehealth behavioral parent training has traditionally educated parents of children with ASD in a one-to-one format. While effective, this approach does not capitalize on the social connections and cross-training that might occur in a group setting. This could be an advantage in this study given that parents of children with ASD report high rates of social isolation (Boyd, 2002). It could also be an advantage because more parents can access services simultaneously, reducing the cost and increasing the accessibility of services. We were able to implement this program in just three online sessions. The current study did have limitations. First, it was a small sample of parents. Although the results were statistically significant, one could argue that the limited sample of 16 parents decreases external validity and the ability to generalize the finding more broadly. The attrition rate of 30%, while certainly not uncommon in parent training programs, is lower than average attrition (i.e. 50%; Chacko et al., 2016; Matson et al., 2009), contributed to the small sample size. Second, there was no control group with which to compare. There are a number of issues with study designs without control groups including regression to the mean and history effects (e.g., parents engaging in other training). Future research should replicate brief online parent trainings with larger groups of parents in randomized control trials, which would address the issues of regression to the mean, history effect, and possible confound. Third, by combining interventions, we are unable to tease out whether the parents were responding to learning the ABA or ACT and optimism content, or even if simply having contact with other parents and guidance from parent educators could have affected the outcomes. Future investigations should aim to identify the active ingredients of combined approaches to parent training. Finally, the relative short evaluation period did not allow for evaluation of change over a longer period of time, nor whether the changes would maintain. Future research should add a follow-up assessment to assess whether the change would persist or even increase over time. Future studies should take the aforementioned issues into consideration, clarifying the protocols, offering a comparison group, and holding aspects of the program constant to clarify the essential features. It would also be beneficial for future investigations to evaluate the potential additive benefits of informal social supports and investigate the acceptability and feasibility of various online platforms for connecting parents together. In conclusion, programs that combine evidence-based methods to address child problem behavior and parenting stress and make these programs available in easy-to-access platforms offer promise for improving parents' ability to effectively support their children with autism. Conflict of interest The authors have no conflicts of interest. Acknowledgements This study was made possible by a grant funded by the National Institutes of Health (2R44MH102845 – 02). Opinions expressed herein do not necessarily reflect the policy of the National Institutes of Health, and no official endorsement should be inferred. References American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). 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