Feasibility of an empirically based program for parents of preschoolers with autism spectrum disorder

Abstract

This article reports on the feasibility of implementing an existing empirically based program, The Incredible Years, tailored to parents of young children with autism spectrum disorder. Parents raising preschool-aged children (aged 3–6 years) with autism spectrum disorder (N = 17) participated in a 15-week pilot trial of the intervention. Quantitative assessments of the program revealed fidelity was generally maintained, with the exception of program-specific videos. Qualitative data from individual post-intervention interviews reported parents benefited most from child emotion regulation strategies, play-based child behavior skills, parent stress management, social support, and visual resources. More work is needed to further refine the program to address parent self-care, partner relationships, and the diverse behavioral and communication challenges of children across the autism spectrum. Furthermore, parent access and retention could potentially be increased by providing in-home childcare vouchers and a range of times and locations in which to offer the program. The findings suggest The Incredible Years is a feasible intervention for parents seeking additional support for child- and family-related challenges and offers guidance to those communities currently using The Incredible Years or other related parenting programs with families of children with autism spectrum disorder.

Keywords

autism spectrum disorder early intervention family functioning and support interventions—psychosocial/behavioral parent stress parent training preschool children

The evidence of prevalent stress and depression among parents raising children with autism spectrum disorder (ASD) is vast, and parents of younger children are particularly vulnerable (e.g. see Davis and Carter, 2008; Estes et al., 2009). The association between negative child behavior and parent stress is well established (Lecavalier et al., 2006). Furthermore, emotion regulation, one of the earliest challenges parents identify for children with ASD (Gomez and Baird, 2005), has also been correlated with maternal stress (Davis and Carter, 2008). The impaired ability of children to regulate their emotions can lead to an increase in tantrums and exacerbate challenging behaviors common to ASD, such as repetitive behaviors and aggression (Mazefsky et al., 2012). Various coping mechanisms buffer parent stress related to ASD, including the promotion of parent emotion regulation (Pottie and Ingram, 2008) and social support (Carter et al., 2009).

Early intervention for children with ASD can decrease parent stress (Baker-Ericzén et al., 2005). On the other hand, high parent stress negatively impacts child outcomes (Osborne et al., 2008). Karst and Van Hecke (2012) note several barriers related to parent engagement in ASD interventions, including time and financial strain, which can cause significant family disruption. Measuring and addressing parents’ needs along with their children’s is important to improve ASD early intervention outcomes. Nonetheless, few ASD interventions assess parent outcomes, and even fewer focus on improving parent well-being (Karst and Van Hecke, 2012). The findings reported in Dababnah and Parish (submitted) only identified one randomized controlled trial of an early intervention program that addressed stress, depression, coping, or other parent- or family-related outcomes in the ASD population.

While few approaches focus on parent outcomes, various programs exist in which parents deliver intervention techniques to their children. A recent Autism Speaks roundtable addressed the problem that some parent-mediated interventions have fallen short of replicating expected child outcomes or had uneven parental responses (Siller and Morgan, 2013). Suggested strategies to meet the unique needs of parents of young children with ASD include offering a mix of learning modalities and parent network opportunities.

Wainer and Ingersoll (2013) suggested that improved attention to intervention fidelity could also improve replication of empirically based ASD parent programs. Fidelity is the degree to which implementation adheres to the established intervention, and it is crucial to proper dissemination of empirically based practice (Fraser et al., 2009). However, it can be difficult to achieve fidelity when interventions are adapted for a new population (Fraser et al., 2009). Preliminary efforts have been made to adapt empirically based interventions designed for parents of children with behavioral challenges to the population with ASD. For example, Stepping Stones Triple P is a promising option to reduce both problem child behaviors and dysfunctional parenting practices with parents of young children with ASD (Whittingham et al., 2009). Similarly, The Incredible Years (IY) positively impacted child behavior and parent mental health for school-aged children with ASD and their parents (Garcia and Turk, 2007; Roberts and Pickering, 2010) and other developmental disabilities (McIntyre, 2008). Yet, its feasibility has not been tested with parents of young children with ASD. Thus, this research addresses the fact that little is known about the challenges parents experience when deciding to join or continue in IY, nor the suitability of program content to this population.

IY Preschool Basic Parent Program

IY Preschool Basic Parent Program (Webster-Stratton, 2001) is a group-based intervention intended to strengthen parent–child relationships, encourage positive discipline practices, develop children’s social and emotional skills, expand parents’ support networks and communication skills, and improve parent mental health. IY was originally developed to target typically developing children with severe behavioral problems and their parents, but it has since been used as a prevention as well as treatment program with populations at risk of challenging behaviors. The program has been tested in numerous randomized controlled trials (Webster-Stratton, 2011) and its use is widespread globally. It is informed by multiple, complementary theoretical perspectives on child development and parent functioning. While IY has separate versions for children of different ages, their caregivers, and teachers, this study focuses on the program used for parents of young children aged 3–6 years.

Garcia and Turk (2007) published a case study of IY with parents of a 10-year-old Deaf child with ASD. While the program was geared toward children with hearing impairments, the authors suggested the program’s focus on emotions in part facilitated positive outcomes in parent stress and child behavior for the child with ASD. The school-age program (ages 5–11 years) has been piloted with eight parents of children with ASD (Roberts and Pickering, 2010). The researchers emphasized visual cues and “coaching” of child social and emotional skills and found promising reductions in challenging child behaviors and parent mental health.

These encouraging preliminary findings suggest IY might be an appropriate program for families of young children with ASD. Garcia and Turk (2007) and Roberts and Pickering (2010) suggested IY was well-matched to the needs of children with ASD due in part to the program’s focus on emotion regulation. Children with ASD often have difficulty assessing their own emotional states (Rieffe et al., 2007), but IY helps parents to build skills in improving emotion recognition and regulation for themselves and their children. Another unique aspect of the program is the inclusion of materials focusing on parent stress, peer and social support, partner communication, and parent–teacher relationships, which are all germane to parents of children with ASD.

In summary, parents raising preschoolers with ASD experience significant stress and poor outcomes, but few interventions address both parent and child needs. With other populations, IY has reduced children’s problem behaviors, enhanced children’s social skills and self-regulation, and improved parent stress and coping. Thus, the current research proposed a pilot study to test the feasibility of IY with parents of young children with ASD. The goal of feasibility studies is to assess implementation processes and acceptability, and to understand an intervention’s potential for more rigorous efficacy testing (Bowen et al., 2009).

Findings related to the acceptability and short-term outcomes of IY with parents raising preschoolers with ASD are described in a separate report (Dababnah and Parish, 2014). The study utilized a pre–post design with no control group to collect parent stress outcomes and acceptability data. Overall, parents reported high acceptability of IY. Additionally, total parent stress significantly decreased (p < 0.01), and intervention effect sizes were moderate to large following program completion, particularly parent-reported stress related to the child (d = 1.12). This article thus describes the feasibility of implementing IY with this population, including fidelity measurement and barriers to recruitment and retention. Specifically, the research aims were to (1) assess treatment fidelity while tailoring the program to ASD-specific needs of parents and (2) gather information on strategies to recruit, retain, and meet the needs of parents of young children with ASD in the intervention.

Method

Feasibility of IY Preschool Basic Parent Program was tested with a sample of parents raising preschool-aged children with ASD. Fidelity data were collected during each weekly session, and individual exit interviews were conducted after program completion. The sample (N = 17) was divided into two groups of eight and nine parents, respectively, who met in a community setting convenient to public transportation and parking. Both groups received the intervention. Dinner, childcare, and transportation support were available for all participants. Modest cash incentives (US$75) were provided for completion of all measures. A university-based Institutional Review Board approved the protocol.

Intervention design

Detailed information about IY is available elsewhere (Webster-Stratton, 2011) and described briefly here. The program is a play-based, skill-building intervention. The intervention was delivered as specified in IY Preschool Basic Parent Program manual (Webster-Stratton, 2001).

Four modules focus on (1) child-directed play, (2) praise and incentives, (3) household routines, and (4) positive discipline. (See Table 1 for list of modules and examples of key concepts.) Following a half-hour informal dinner, each 2-h session begins with a check-in during which parents share experiences from the previous week. Then, the two group leaders introduce the day’s content, through videos, group discussions, and interactive teaching. Participants next discuss and role-play new skills. Finally, parents set weekly goals and provide written feedback to group leaders about the current session. After four sessions, parents are assigned support buddies from the group. While IY recommends inclusion of other caregivers, only one parent from each family was invited to participate, due to space constraints.

Table 1.

Sample Incredible Years concepts.

Week(s)	Module title	Sample concept
1	ASD parent advocate meeting	Introduction of program content, group members, and ASD resources/terms
2–5	“Strengthening Children’s Social Skills, Emotion Regulation, and School Readiness Skills”	Developmentally appropriate play with hyperactive or inattentive children
6–7	“Using Praise and Incentives to Encourage Cooperative Behaviors”	Rewarding oneself, partners, teachers, and others
8–10	“Household Rules, Routines, and Effective Limit Setting”	Schedules and assistance with transitions
11–15	“Positive Discipline, Handling Misbehavior”	Parent and child self-control and calm-down strategies

Modules are available in Webster-Stratton (2001) Preschool Basic Parent Program.

Tailoring IY

Each weekly 2.5-h session was led by two master-level clinicians with extensive professional ASD experience. Group leaders were trained and certified in IY and received ongoing professional support during implementation.

With the exception of an introductory session on ASD, no changes were made to the program manual prior to beginning the intervention. However, the researchers and group leaders anticipated possible problems with some program modules. For example, time-out was expected to be difficult, due to parent stress and challenges with child emotion regulation. Therefore, the first author (S.D.) and two group leaders met after each weekly session to discuss the current session and plan for subsequent sessions. In addition, participants provided weekly acceptability data on their response to the program (described in detail in Dababnah and Parish, 2014). Based on these data and discussions, group leaders chose to emphasize certain program areas depending on members’ needs. Flexibility to adapt program content (within certain parameters) to meet the needs of individual groups is expected, and according to the developer, a necessary component of program fidelity (Webster-Stratton, 2007). A summary of strategies used by group leaders to tailor the program to meet the needs of parents of preschoolers with ASD consisted of the following (see also Table 2).

Table 2.

Integration of ASD focus into Incredible Years program.

Strategy	Module(s)
Supplemental ASD parent meeting	Pre-intervention
Unique play behaviors of children with ASD	1
Extensive use of visual resources and simple, concrete language	1–4
Dedication of additional time to discuss videos	1–4
Increased focus on the development of children’s emotion regulation skills	1, 4
Decreased use of time-out for punishment	4
Sensitivity to high family stress and burden	1–4
Awareness of heightened need for social support	1–4

Supplemental ASD parent advocate meeting

An introductory session led by a parent of a teenager with ASD provided community resources and support information.

Adaptation to unique play behaviors of children with ASD

Group leaders devoted extensive time during initial sessions to troubleshoot issues related to the ways children with ASD often play (e.g. lack of imaginative play, rigidity, restricted interests).

Extensive use of visual resources and simple, concrete language

Many children had limited verbal or communication abilities. Thus, group leaders presented additional visual prompts (e.g. picture cards) to illustrate desired commands, emotions, social skills, routines, and tasks. Group leaders also stressed the importance of limiting the number and complexity of requests.

Dedication of additional time to discuss videos

Group leaders showed fewer videos and devoted more time to discussing their relevance, given the videos did not depict children with ASD.

Increased focus on the development of children’s emotion regulation skills

Group leaders dedicated additional time to emotion coaching, in which parents label emotions with words and pictures. Parents also received information on how to help children identify their own emotions based on how their children look and feel (e.g. “I can see you feel angry because your hands are clenched”) and strategies in which children could calm down (e.g. deep breathing).

Decreased use of time-out

IY dedicates approximately one session each to time-out to calm down and time-out for noncompliance (the latter being punitive). However, group leaders focused on calming down and ensuring children possessed the requisite self-regulation skills to respond to time-out methods. Although the manual discusses time-out as an “extended ignore” of the child, the parents discussed assisting children to calm down (e.g. rubbing their backs, allowing them a sensory break to jump on a trampoline).

Sensitivity to additional stress and burden experienced by families of children with ASD

IY focuses primarily on child behavior. However, group leaders devoted time for parents to process their own and family concerns, as well as coping and anger management strategies (e.g. listening to music, repeating a calming phrase to oneself, meditation, and deep breathing).

Awareness of heightened need for social support in and out of class sessions

Many participants sought interaction with fellow parents outside of class. One group created a class email list and corresponded between class sessions. Group leaders periodically used email to check in and share resources.

Participants

Recruitment procedures

Four community organizations assisted recruiting families in one southeastern area of the United States, using fliers, listserv announcements, and postings on the websites of local ASD and developmental disability service agencies, preschools, and parent support groups.

Interested participants contacted researchers via email or telephone. Inclusion criteria required participants to be at least 18 years old, have a child aged 3–6 years with ASD, and have lived with the child for at least 6 months. All participants provided informed consent and standardized demographic data. Individuals who did not join the program were asked why they chose not to participate.

Measures

Fidelity checklists

Weekly, session-specific fidelity checklists available in the IY manual were used (Webster-Stratton, 2001). The checklists were independently completed by the group leader and the first author (S.D.), who observed all sessions.

Exit interviews

One-hour, in-person, semi-structured individual interviews were conducted by the first author (S.D.) after program withdrawal or completion (interview guide available upon request). Interviews occurred an average of 12 days after the last session (range 1–24 days). Interviews focused on engagement with each program aspect and how the intervention could better meet the needs of parents of young children with ASD.

Analyses

Baseline descriptive data were described using percentages or means and standard deviations, as appropriate. Fidelity checklists were evaluated to ensure the recommended videos were shown, the group leader tasks were completed, and the required handouts were distributed. These elements were summarized using percentages for each module, as well as the entire program.

Digital audio interview files were transcribed, verified for accuracy, and uploaded to ATLAS.ti Version 7 (ATLAS.ti Scientific Software Development GmbH, 2011). The interview guides were used to develop the initial codebook, which in turn was used for the first round of open coding. Responses were labeled using open coding of words or short segments of narrative. Then, one researcher examined and categorized the codes into subcategories, based on data patterns related to program feasibility and participants’ suggestions for future programmatic changes. Once subcategories were established, the researcher examined the broad categories and subcategories, in order to draw conclusions on specific themes and trends from the data. The researcher conferred with a second researcher on codes and themes until consensus was reached. Along with common trends and themes, disconfirmatory responses were sought to examine the diversity of participants’ opinions. Finally, short memos from each interview were recorded and reviewed throughout the coding process to assist in drawing themes from the data.

Results

Description of sample

A total of 49 potential parents expressed interest in the study; 17 parents enrolled in one of the two intervention groups (Table 3). The majority of the remaining parents were eligible to join (n = 25), but chose not to do so for various reasons (Table 4).

Table 3.

Description of sample (N = 17).

Parent characteristics	N	(%)
Married/partnered	16	94.1
Race
African American	2	11.8
Asian American	2	11.8
White American	10	58.8
Other	3	17.6
Education
High School/GED	2	5.9
Associate Degree	3	17.6
Bachelor Degree	5	29.4
Graduate Degree	7	41.1
Child characteristics	Mean	SD
Age (years)	3.7	0.92
Age at diagnosis (years)	2.9	0.91
Time since diagnosis (months)	13.5	9.46
Male	12	70.6
Siblings
None	6	35.3
One	10	58.8
Two	1	5.9
Receipt of other services
Occupational therapy	12	70.6
Specialized preschool/educational services	12	70.6
Speech therapy	10	58.8
Structured teaching	4	23.5
Other	5	29.4
Verbal ability
Verbal (typical)	7	41.2
Verbal (delayed)	5	29.4
Nonverbal	5	29.4

Table 4.

Reasons eligible parents did not participate (N = 25).

Number	Reason
7	General scheduling conflicts
4	Children’s schedule/disruption
4	Work conflict
2	Pregnancy
4	Program too far
2	Not reported
2	Waitlisted due to space

Parents’ attendance ranged between 88% and 100% per session (average of 92%). Of the 14 parents who completed the intervention, 4 did not miss any sessions. The remaining 10 parents were absent for 1 to 4 sessions, although 4 of these parents “made up” sessions by meeting with a group leader on the phone or in person outside of class. Parents reported missing class because of illness, business trips, or family vacations.

Attrition

Of the initial 17 participants, 14 (82%) finished the program. The other three parents cited moving (n = 1) and dissatisfaction with program (n = 2) for withdrawal from the program. (One parent was in the first group; two were in the second group.) These three parents did not miss any sessions prior to withdrawal. Reasons for dissatisfaction included the need for more one-on-one assistance with child behavior, interference with children’s bedtime schedules, distance to program site, and a desire to bring partner to group.

Statistical tests (two-tailed t-tests and Fisher’s exact tests, as appropriate) were performed to examine differences between individuals who completed the program versus those who withdrew. There were no significant differences (p < 0.05) between the groups in parents’ characteristics. However, children of parents who withdrew were significantly older (3.5 years old in completer group vs 4.8 years old in the withdrawal group at baseline).

Fidelity

Table 5 details fidelity results from each program component. No modules were omitted. Activities (92%) were implemented more often than the videos (72%) throughout the program. In general, the missing activities were role plays. Less time was available for these lengthier activities due to longer time spent on discussion. Similarly, participants requested less time viewing videos in order to discuss program content.

Table 5.

Fidelity results, average percentage of activities completed.

Overall program
Completion of videos	72%
Completion of activities	91%
Distribution of handouts	100%
Module 1: Child-directed play
Completion of videos	88%
Completion of activities	91%
Module 2: Praise and incentives
Completion of videos	78%
Completion of activities	92%
Module 3: Household rules and routines
Completion of videos	80%
Completion of activities	97%
Module 4: Handling misbehavior
Completion of videos	56%
Completion of activities	87%

Exit interview findings: considerations for future use of IY

The exit interviews highlighted multiple challenges in using IY with parents of preschoolers with ASD. All 17 original participants completed an exit interview, including the 3 participants who withdrew. To protect the confidentiality of the participants who withdrew, their opinions are only described in the aggregate. No major themes were derived based on group affiliation.

Parents offered various suggestions, and specific subthemes within these broader suggestions included how program planners can improve supports for working parents, consider group diversity related to children’s functioning levels, dedicate more time and resources to promoting parent self-care, and involve other caregivers. The themes are described below and summarized in Tables 6 and 7.

Table 6.

Logistical considerations to plan ASD-specific Incredible Years groups.

Logistical issue	Recommendation
Meals	Specialized dietary options
Specialized childcare	Low provider–child ratios
	Structured activities and social interaction
	Appropriate settings for children with hypersensitivities
	Vouchers for in-home childcare
Group considerations	Small group sizes (6–10 parents)
	Inclusion of partners and other caregivers
	Specific groups for parents of children with similar verbal, behavioral, or sensory profilesGroup meetings in more geographic locations and diverse times
Pre-intervention session	ASD parent advocate to introduce program and share resources
	Group leaders knowledgeable in ASD practice
Resources	Streamlined take-home materials
	Information on local programs, therapies, and ASD-specific supports

Table 7.

Tailoring Incredible Years content to parents of preschool children with ASD.

Content area recommendation	Specific activity
Dedicate more time to skills in first module	Assist parents to understand child-directed play in the context of ASD through discussion and role plays
	Practice and troubleshoot emotion regulation strategies and social skills
Develop appropriate program resources for children with ASD	Identify alternative incentives to motivate children with ASD (e.g. “sensory” rewards such as jumping on trampoline)
	Consider an optional “peer sharing night” in which parents create picture schedules and other supports together
	Increase access to visual resources (e.g. photos of emotions)
Refine activities and videos	Reduce time on videos
	Redirect focus to role plays and class discussions
Modify sessions on positive discipline	Reduce focus on ignoring children’s negative behaviors
	Assist children to develop self-regulation skills through “time-out to calm down”
	Abbreviate or omit session on “time-out for noncompliance”
	Allow for time to address children’s problem-solving skills
Encourage parent self-care and stress reduction strategies	Gradually increase focus on parent stress and well-being over course of programIncorporate small “rewards” for parents into each module to model self-careOffer targeted stress-related resources outside of programExpand opportunities for peer social support and group leader “check-in” between group sessionsConsider additional sessions to dedicate more time to parent-specific issuesProcess family needs and anger management strategies

Planning IY

Recruiting parents and setting up supports to enable them to participate required months of preparation. Food (including choices appropriate for those on restricted diets) and childcare were offered to all participants and children. The following two subsections outline participants’ suggestions to plan groups for children with ASD and their parents.

1. Build-in supports for working parents and parents in need of childcare.

Eight participants regularly or occasionally used the childcare supports. Childcare was provided by individuals with previous experience with children with ASD. Providers were matched 1:1 or 1:2 with children, depending on the children’s needs. Four children were regularly accompanied by siblings (aged 2–6 years). All participants who used childcare reported they would not have been able to attend without it. One parent suggested more structured activities and opportunities to engage children in social interactions. A parent of a child with hypersensitivity to auditory stimuli requested a separate quiet room. Some parents noted that if partners are invited to attend in the future, the need for childcare will increase. However, many parents reported children’s schedules precluded bringing children. (Notably, disruption to children’s nighttime routines was cited as the reason one parent declined to join and by another who withdrew.)

2. Consider group size and diversity.

Parents reported group size and composition were important. Each group had 7–9 participants (smaller than the typical IY maximum of 14). All participants agreed this smaller size allowed them to adequately discuss their specific concerns.

Parents differed about the appropriateness of the program for parents whose children had recently received an ASD diagnosis. Parents of children with more recent diagnoses commonly cited needing more one-on-one attention, whereas some parents of children with longer-standing diagnoses reported needing less intensive support. One parent, however, said it would have been difficult to participate in the intervention immediately after her child’s diagnosis:

You’re trying to deal with that term, “autism.” … What does that mean? How do we get treatment? Then, there are sensory issues … I think it would have been more overwhelming with this program if I’d done it earlier on, because it really relied on understanding what sensory seeking was, and that our [child] had it, what to look for, and how to achieve that “what is and what isn’t.”

The program included a mix of parents of children with different behavioral and communication challenges. There was no consensus as to whether a more homogeneous group regarding behavior or age was needed. Two parents of older children stated they regretted not being able to pursue the problem-solving content in detail, due to spending more time on earlier sessions. Two additional parents suggested it might have been useful to be in groups with parents whose children had similar behavioral challenges as their own. However, many parents of younger children reportedly appreciated learning from the insight of more-experienced parents.

Three parents discussed the challenge of separating groups based on children’s diagnosis or age alone, which were not felt to be accurate indicators of a child’s behaviors or needs. One parent reported it was helpful to have a diversity of child behavioral challenges represented, because the sensory- or transition-related causes of challenging behaviors are common to children with ASD.

One parent noted it would have been more helpful to offer the program in more geographical locations, which would permit parents to form local support networks. Finally, one parent mentioned the lack of socioeconomic diversity in the group and advocated for reaching underserved populations.

Setting the stage: the first session

Interviewees reported diverse opinions on effectively beginning the program. In this study, the parent of an older child with ASD shared her story and local resources with participants in a pre-intervention session. All participants but two reported it was helpful to hear the perspective of someone “further down the road.” Other parents noted it set the right introductory tone and made participants more willing to share their experiences. Parents suggested introducing common ASD terms such as “sensory seeking” or “stimming” (i.e. self-stimulation) in the first session in order for parents to begin on a “common ground.”

After the parent advocate spoke, group leaders explained that while IY was not developed specifically for parenting a child with ASD, the leaders had extensive experience in the ASD field and would assist participants achieve their goals. However, some parents reported they needed more reassurance that the program would be tailored to their needs from the beginning. One parent said,

That assumption that we’re going to … encourage pretend play automatically kicks the bucket for some of these families … and makes you feel like, “Oh my God! My kid’s not doing this. How are we even going to complete this?” … Obviously, as we moved on these were not issues … but earlier, I [thought], “Am I going to walk away from this group feeling like my child is completely inadequate, even in an autism-specific [group]?” which I know is not the intention, ever, but I think parents, especially mothers … see it as somehow [their] failure.

The videos had the potential to be off-putting because children with ASD were not depicted. One participant suggested future group leaders should acknowledge this problem at the outset:

Say, “We realize this. The program originally was not made for kids [with] autism, but we can take a lot of these fundamental ideas, and still apply them, and really these videos are used as examples of positive things or things that you could change in modeling parent behavior, and it’s not so much a reflection of the children” … At the end I was … looking at the parents first ….You don’t need to be fixated on the children, really. They’re just there as props.

Optimizing parent learning throughout the program

Participants had many opinions on how to retain families in the program, encourage participation, and increase parent success.

1. Offer appropriate in-class and take-home resources.

All of the parents received an IY book, which they reported was a good reference. While three parents found the number of take-home handouts appropriate, the majority of participants reported they were confused or overwhelmed by the amount. While two parents requested fewer handouts, most parents suggested better resource management (e.g. binders).

Parents said they enjoyed the various ways to learn more about resources, such as class email lists. Parents reportedly valued information on public programs, picture schedules, social stories, and occupational therapy.

2. Plan for adequate time on each program module.

All parents who completed the program either believed 15 weeks was appropriate (n = 3) or too short (n = 11). Parents reported wishing the first module (Child-Directed Play) was longer. An exception was two parents with older children, who reported being ready to move on to the second module. Nearly all participants reported beginning with play was a critical foundation for their understanding of the entire program. Three parents requested more opportunities to practice the content in class through role-plays and discussion. A common suggestion was to spend more time on coaching social and emotional skills. One parent suggested introducing the coaching skills earlier, in order to spend two full weeks on the topic.

A majority of participants felt time spent on the second and third modules (Praise and Incentives; Rules, Routines and Limits) was sufficient. The remainder reported the concepts were difficult and they could have benefited from more time on the picture schedules in particular. A challenge highlighted by one parent was that some families had already accessed ASD-related services, which typically demonstrate concepts such as visuals to parents. Thus, extended time on visual prompts and picture schedules would be boring or unnecessary to some. She suggested a peer sharing night, where those parents who have already been exposed to teaching on visual strategies were paired with those who had not.

Finally, most parents reported the time spent on the final module (Positive Discipline) was adequate. However, three requested lengthening the “time-out to calm down” session. One individual felt the focus should solely be self-regulation strategies (i.e. time-out to calm down, rather than time-out for noncompliance). Other parents recommended adding an extra session to provide more time to fully understand child problem solving.

3. Recognize parent self-care is underutilized.

Some parents became emotional when asked about content regarding self-care and stress reduction. All participants reported understanding its importance; few indicated they could set aside time to address their own needs. Many parents said if the program was presented to them at the beginning as focusing on parents’ needs, they would not have joined. One parent explained,

Market [the program] as how to help your children. You’d have to trick us into [focusing on ourselves]! It feels so selfish, but … when you get on the scale and you gained 40 pounds, or when you realize you’ve been collecting records and you haven’t listened to them in over a year … That’s pretty depressing … Then for me, you get resentful of your life … when you see your partner doing something enjoyable, you’re like, “How dare you?” Just all of this stuff, please include it more.

Another parent suggested slowly building in self-care content after participants made initial progress with their children’s challenges. A third parent recommended incorporating small “rewards” for parents within each module. Finally, one parent emphasized her belief that one program was not enough, saying,

I liked that [parent stress] was brought up … and it was a discussion point that came up over and over … [At] least I know there are these strategies that might help, and there are these handouts with stuff on there … But for me, it’s just such a big thing that I need a separate program dedicated [to stress], so I wouldn’t be trying to switch gears … I know it’s not really healthy, but it’s easier for me to deal with problem solving for my child.

She suggested collaborating with other local programs to provide parents with more stress-related resources once they “graduate” from IY.

Thinking to the future: additional supports for ASD-specific groups

Parents felt the program could be enhanced with the addition of five key supports, outlined below.

1. Check in regularly via email or phone.

Some parents reported that the amount of attention from group leaders was adequate. However, three parents reported needing more intensive feedback.

2. Present more visual resources.

Many parents reported needing additional visual materials, such as photos of emotions. While these ideas were discussed, one participant reported parents do not know how or lack the time to make such materials. Three parents suggested a session in which participants could share supplies and develop visual materials.

3. Create additional social support.

Peer support is integrated into IY (e.g. informal dinners, group format, buddy system). However, five parents requested more time to socialize and share ideas.

4. Include partners and other caregivers.

Most participants (n = 10) expressed a desire for their partners or other caregivers to participate. One parent explained,

[My partner attending] would’ve helped me to feel more supported … [A] lot of the moms I met are the ones doing the up-front work [on ASD]. I feel like if the other spouse or partner was involved … it would lend some credence to some of the stuff on the autism front … I feel that sometimes that exposure to someone other than your spouse relaying all of this information … can be a nice way to bring couples closer together.

Nonetheless, participants identified multiple barriers to having partners attend (e.g. childcare, disrupting children’s nighttime routines, work schedules). One parent suggested the program provide “vouchers” for in-home childcare, while another parent remained concerned a babysitter would disrupt evening routines. Weekend or daytime meetings were an option for some families, although one noted that giving up 15 consecutive Saturdays would be problematic. Finally, one parent was concerned some parents would be unwilling to share partner disagreements with the group.

5. Offer an “advanced” program.

As discussed above, parents reported they might have been reluctant to commit to such a long program at the beginning, but they reported desiring additional weeks upon completion. One parent suggested initially holding the 15-week program, and then offering participants the option to continue for additional weeks with an intensive focus on partner relationships and stress management in particular.

Discussion of lessons learned

These findings suggest IY is feasible with parents of preschoolers with ASD, and parents were generally enthusiastic about the program. Furthermore, fidelity to the protocol and content of the original IY model was generally maintained, with the exception of the videos. Additional time needed to debrief videos and troubleshoot ASD-related behavioral challenges reduced the time available for other activities.

Implementing the program to maximize parent success

Supports such as appropriate childcare, meals (with dietary restrictions), and transportation facilitated participation. Furthermore, group leaders need extensive professional experience in ASD to be effective and to have credibility.

Parents identified several “active ingredients” to their success and satisfaction with the program, particularly emotion regulation skills for children and parents, social support, and family-focused, strength-based content. Furthermore, parents offered recommendations for future programs:

add sessions to spend more time on parent-specific issues;

provide ongoing, individualized support for parents of recently diagnosed children;

encourage participation of other caregivers; and

provide more opportunities for creation and sharing of resources.

The current and proposed methods to tailor IY to the ASD population will likely increase planning and implementation time and costs. However, these strategies have the potential to maximize the intervention’s capacity to promote the well-being of children with ASD and their families.

One important finding was the challenge parents faced to focus on self-care. While parent stress, depression, and poor coping in this population are highly prevalent, participants reportedly dedicated nearly all of their time to child-related issues. Future research should examine how IY can address self-care for parents raising children with ASD.

In exit interviews, participants reported various challenges in the recruitment and implementation of the program, with future recommendations (see Tables 6 and 7).

Limitations

The sample was small and drawn from one geographic region. Participants were invested in their groups as a means of learning and social support and may have reported overly positive outcomes due to social desirability bias. Finally, individuals with low income or low education were under-represented and generalizability may be limited.

Recruiting parents from diverse backgrounds

Despite wide outreach and multiple supports, most participants were college-educated, White, and partnered. Future programs should offer the following to increase the diversity of participating parents:

hold meetings in more dispersed geographical locations, to reduce travel burden;

provide in-home childcare vouchers or provisions for families concerned about their children’s schedules;

offer variable group meeting times to accommodate diverse work and family life schedules.

Conclusion

There is a dearth of empirically based interventions that address the needs of parents raising young children with ASD. This study examined the feasibility of the implementation of The Incredible Years, which enjoys widespread use with parents of children who do not have ASD. This study provides preliminary evidence that the intervention is feasible and acceptable to parents of young children with ASD, and it can be implemented with fidelity. If its efficacy and effectiveness are established with these parents, it has potential to improve family well-being.

Footnotes

Acknowledgements

We wish to thank the families, group leaders, and organizations who generously contributed their time to this study. We also appreciate Kathleen Rounds, Sherry Mergner, Natasha Bowen, Joan Yoo, Irene Zipper, and Mark Fraser, whose knowledge and expertise guided the development of this research and manuscript.

Funding

This research was supported by the Armfield-Reeves Innovation Fund at the University of North Carolina at Chapel Hill School of Social Work. The research was also funded in part by the MCH Public Health Social Work Leadership Training Program at the University of North Carolina at Chapel Hill, supported by the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (Grant T19MC00007). SD received support from the University of North Carolina at Chapel Hill Graduate School Dissertation Fellowship, the Sam and Betsy Reeves Doctoral Fellowship, and the John B Turner Dissertation Fund. SLP acknowledges the support of the Lurie Institute for Disability Policy.

References

ATLAS.ti Scientific Software Development GmbH (2011) ATLAS.ti version 7. Berlin: Scientific Software Development GmbH.

Baker-Ericzén

Brookman-Frazee

Stahmer

(2005) Stress levels and adaptability in parents of toddlers with and without autism spectrum disorders. Research and Practice for Persons with Severe Disabilities 30(4): 194–204.

Bowen

Kreuter

Spring

. (2009) How we design feasibility studies. American Journal of Preventive Medicine 36(5): 452–457.

Carter

Martínez-Pedraza

Gray

(2009) Stability and individual change in depressive symptoms among mothers raising young children with ASD: maternal and child correlates. Journal of Clinical Psychology 65(12): 1270–1280.

Dababnah

Parish

(2014) Incredible Years program tailored to parents of preschoolers with autism: pilot results. Research on Social Work Practice. Epub ahead of print 10 November 2014. DOI: 10.1177/1049731514558004.

Dababnah

Parish

(2015) A comprehensive literature review of randomized controlled trials for parents of young children with autism spectrum disorder. Submitted for publication.

Davis

Carter

(2008) Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. Journal of Autism and Developmental Disorders 38(7): 1278–1291.

Estes

Munson

Dawson

. (2009) Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism 13(4): 375–387.

Fraser

Richman

Galinsky

. (2009) Intervention Research: Developing Social Programs. Oxford; New York: Oxford University Press.

10.

Garcia

Turk

(2007) The applicability of Webster-Stratton parenting programmes to deaf children with emotional and behavioural problems, and autism, and their families: annotation and case report of a child with autistic spectrum disorder. Clinical Child Psychology and Psychiatry 12(1): 125–136.

11.

Gomez

Baird

(2005) Identifying early indicators for autism in self-regulation difficulties. Focus on Autism and Other Developmental Disabilities 20(2): 106–116.

12.

Karst

Van Hecke

(2012) Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review 15(3): 247–277.

13.

Lecavalier

Leone

Wiltz

(2006) The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research 50(3): 172–183.

14.

McIntyre

(2008) Parent training for young children with developmental disabilities: randomized controlled trial. American Journal on Mental Retardation 113(5): 356–368.

15.

Mazefsky

Pelphrey

Dahl

(2012) The need for a broader approach to emotion regulation research in autism. Child Development Perspectives 6(1): 92–97.

16.

Osborne

McHugh

Saunders

. (2008) Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders 38(6): 1092–1103.

17.

Pottie

Ingram

(2008) Daily stress, coping, and well-being in parents of children with autism: a multilevel modeling approach. Journal of Family Psychology 22(6): 855–864.

18.

Rieffe

Meerum Terwogt

Kotronopoulou

(2007) Awareness of single and multiple emotions in high-functioning children with autism. Journal of Autism and Developmental Disorders 37(3): 455–465.

19.

Roberts

Pickering

(2010) Parent training programme for autism spectrum disorders: an evaluation. Community Practitioner 83(10): 27–30.

20.

Siller

Morgan

(2013) Making parent-mediated interventions work for families: a roundtable hosted by the Autism Speaks Toddler Treatment Network on April 18, 2013 in Seattle, WA. Available at: http://www.autismspeaks.org/science/research-initiatives/toddler-treatment-network/making-parent-mediated-interventions-work-fam (accessed 22 October 2014).

21.

Wainer

Ingersoll

(2013) Intervention fidelity: an essential component for understanding ASD parent training research and practice. Clinical Psychology: Science and Practice 20(3): 335–357.

22.

Webster-Stratton

(2001) The Parents and Children Series: A Comprehensive Course. Seattle, WA: The Incredible Years, Inc.

23.

Webster-Stratton

(2007) Tailoring The Incredible Years parent programs according to children’s developmental needs and family risk factors. In: Briesmeister

Schaefer

(eds) Handbook of Parent Training. Hoboken, NJ: John Wiley & Sons, pp. 161–200.

24.

Webster-Stratton

(2011) Incredible Years Parents, Teachers, and Children’s Training Series: Program Content, Methods, Research and Dissemination (1980–2011). Seattle, WA: The Incredible Years, Inc.

25.

Whittingham

Sofronoff

Sheffield

. (2009) Stepping Stones Triple P: an RCT of a parenting program with parents of a child diagnosed with an autism spectrum disorder. Journal of Abnormal Child Psychology 37(4): 469–480.