Abstract
Keywords
There are many different approaches to supporting autistic children and their families (Trembath et al., 2023). Naturalistic Developmental Behavioral Interventions (NDBIs) are one form of early support program with quality evidence for supporting the development of young autistic children (Sandbank et al., 2020; Tiede & Walton, 2019; Trembath et al., 2023). NDBIs are support programs that involve several key elements, including being implemented in natural settings, involving both adult and child-initiated interactions, utilizing behavioral strategies to scaffold child learning, and using naturally occurring consequences as reinforcement for child behaviors (Schreibman et al., 2015). In many NDBIs, parents are coached to use strategies with their own child through parent-mediated support (Schreibman et al., 2015).
The Early Start Denver Model (ESDM) is one NDBI that is considered promising for improving child outcomes including communication and cognition (Fuller & Kaiser, 2020; Trembath et al., 2023). The ESDM is a manualized, comprehensive NDBI that focuses on teaching pivotal developmental skills (i.e., skills that are considered to be developmentally significant, such as joint attention and imitation) through play and everyday routines with an adult (Waddington et al., 2022). Parents can learn to implement the ESDM with high levels of fidelity (Fuller et al., 2020), and the ESDM can have positive outcomes for parent wellbeing (Estes et al., 2014; Mirenda et al., 2022; Waddington et al., 2016; Weitlauf et al., 2020).
Coaching parents to implement support strategies with their own autistic children may be an appropriate service delivery model for several reasons. First, parent-mediated supports are a potentially time and cost-effective approach to service delivery (Minjarez et al., 2011; Shalev et al., 2020). Parent-mediated programs also align with a number of guidelines for best practice (National Institute for Health and Care Excellence, 2013; National Research Council, 2001; Wallace & Rogers, 2010; Whaikaha—Ministry of Disabled People & Ministry of Education, 2022). Some parents might be well suited to the delivery of support to their autistic child because they may be able to provide an increased number of learning opportunities across daily routines, which could enhance their child’s learning, skill maintenance, and generalization (Nevill et al., 2018; Oono et al., 2013). In addition, parents may experience benefits, including increased self-efficacy (Keen et al., 2010; Schertz et al., 2020), reduced stress (Jurek et al., 2022; Tarver et al., 2019), and increased psychological wellbeing (Estes et al., 2019). The family system may also benefit through improved adaptive functioning (Estes et al., 2019) and improved family relationships and interactions (Jurek et al., 2022).
Qualitative research approaches might enhance the delineation and understanding of factors that make programs feasible, relevant, sustainable, and effective from the perspective of key stakeholders (Callahan et al., 2008; Mackintosh et al., 2012; Stahmer et al., 2017). Qualitative methods can also contribute information regarding participants’ perspectives of “how and why” particular changes have occurred (Rhodes, 2012, p. 496). Furthermore, understanding participant perspectives regarding the social validity of a program can be important because these factors might influence parents’ engagement with and commitment to a program (Callahan et al., 2008; Mackintosh et al., 2012; Stahmer et al., 2017).
Understanding parent perceptions of autism early support programs could also be seen as helpful for improving access and outcomes for marginalized groups such as low-resourced families (Wallace-Watkin et al., 2022) and racial and ethnic minority groups (Singh & Bunyak, 2019). By acknowledging and addressing diverse perspectives, interventions can be better designed to reduce barriers and promote facilitators ensuring equitable participation and effectiveness in these programs. Understanding parent perspectives may also allow community clinicians to make informed decisions on when and how to implement coaching strategies with a wide range of families, which may reduce some of the inequities experienced by people from marginalized groups when accessing autism support (Tomczuk et al., 2022). Developing programs that have stakeholder buy-in might also facilitate community implementation of these programs (Stahmer et al., 2017).
Several qualitative studies have found that parents generally perceive parent-mediated NDBIs positively. Some parents report benefits to their own wellbeing, including reduced stress and increased empowerment (de Korte et al., 2022; Sengupta et al., 2023; Stahmer et al., 2017). Many parents also perceive improvements for their children, including social communication, wellbeing, and generalization of skills (Carr & Lord, 2016; de Korte et al., 2022; Pickard et al., 2016). These findings are supported by the literature on parent-mediated supports more broadly (Jurek et al., 2022). However, there are many emotional struggles associated with participating in parent coaching programs (Jurek et al., 2022), and these programs may not be effective in addressing psychological, physical health, or caregiving burdens for all parents (MacKenzie & Eack, 2022).
At least three qualitative studies have focused on parent perceptions of participating in parent-mediated ESDM (P-ESDM; Qu et al., 2022; Seo et al., 2022; Waddington et al., 2020). These three programs were each 12 weeks in duration. Two of the programs included 1–1 in-home parent coaching in New Zealand (Seo et al., 2022; Waddington et al., 2020), and one involved a group telehealth coaching model in China (Qu et al., 2022). Across these studies, many parents reported that the ESDM fit in well with their lives and values (Qu et al., 2022; Seo et al., 2022; Waddington et al., 2020). Parents in all three studies also reported improvements in some of their child’s behaviors especially improving communication (Qu et al., 2022; Seo et al., 2022; Waddington et al., 2020), reducing harmful behaviors (Qu et al., 2022; Seo et al., 2022), and improving parent-child interactions (Qu et al., 2022; Waddington et al., 2020). Parents also perceived benefits for themselves, including, reduced stress (Qu et al., 2022; Seo et al., 2022), increased self-efficacy (Qu et al., 2022; Seo et al., 2022), and improved mental health (Qu et al., 2022). Qu et al (2022) reported that parents generally found the group format motivating and valued the peer support and learning that occurred. However, some parents reported that they found it difficult to make time to attend the program or implement the strategies and some also reported wanting more parent coaching support (Qu et al., 2022).
Multi-tiered approaches to service provision may be helpful for providing equitable, personalized supports to autistic children and their families (Lord et al., 2022). Given the variable parent and child outcomes both within and between parent coaching studies, there could be value in parent education approaches that are flexible to meet family needs and can be adapted based on parent response (Phaneuf & McIntyre, 2011). In a stepped-care approach, less intensive supports are offered initially, with higher tiers of more intensive supports available as needed on individual bases (Bower & Gilbody, 2005). Multi-tiered approaches to autism service delivery might improve outcomes for children and their families through individualizing supports, overcoming barriers, and improving program effectiveness (McIntyre & Phaneuf, 2008; Phaneuf & McIntyre, 2011; Wainer et al., 2021) while perhaps also promoting a more efficient prioritization of resources (Green, 2019; Steever, 2011; Webb et al., 2014).
There does not appear to be any published qualitative research that has explored multi-tiered approaches to NDBIs. However, the efficacy of a two-tiered parent-mediated ESDM (P-ESDM) program is reported in (van Noorden et al., 2022). The original study was a 20-week, in-person, two-tiered group (Tier 1) and individual (Tier 2) P-ESDM program, for parents of seven autistic preschool children. van Noorden et al. (2022) found improvements in most children’s engagement, and object imitation, with some improvements in communication, as well as increases in parent use of ESDM strategies, and reductions in most parents’ stress.
Up to now, there does not appear to be any published qualitative evaluations of in-person group coaching in P-ESDM, nor published qualitative research on multi-tiered (i.e., stepped care or response to intervention) parent coaching programs in the NDBI research more broadly. Furthermore, conducting further qualitative inquiry into parent perceptions of P-NDBIs is important, as the inherently subjective and individual nature of each study underscores the need for a comprehensive understanding that can only be achieved through a robust body of research.
Therefore, the aims of this current research were to evaluate parent perceptions of participating in the two-tiered parent-mediated program conducted by van Noorden et al. (2022). Two interviews were conducted, one at the end of each tier of the program, to understand parent perceptions of the group coaching phase, the individual phase, and the additive nature of the program. An inductive exploration of parent perceptions of the program was conducted to understand barriers, facilitators, outcomes, and experiences. It is hypothesized that a deeper understanding of these perceptions could elucidate ways of increasing the social validity of future support programs and improving outcomes that are important to parents of young autistic children.
The research questions were:
Method
Ethics
This study was approved by the Central Health and Disability Ethics Committee [20/CEN/253], an ethics committee established by the New Zealand Ministry of Health to review all human health and disability research. Ethical approval was obtained before the program began and before any data was collected.
Participants
Participants were nine parents of seven autistic preschool boys, who were participating in a two-tiered P-ESDM program. Families were recruited for the program through a university-based autism clinic. Five mothers and two mother–father couples gave informed consent to participate and were interviewed. Family, parent, and child characteristics are summarized in Table 1. Eligibility criteria and detailed information about the participating parents and children are reported in the original study (van Noorden et al., 2022). Briefly, the seven participating children were all boys aged between 3:0 (yrs: months) and 4:4, who were diagnosed with autism spectrum disorder by clinical professionals either before or during the current study. The parents were all caregivers of a participating child.
.Family Demographic Characteristics.
Zack’s parents were living separately due to international COVID-19 restrictions throughout this research.
Parent Coaching Program
The parent coaching program is described in detail in van Noorden et al. (2022). Briefly, the children and parents interviewed for the current study had previously participated in a non-concurrent multiple baseline across groups design aimed at evaluating the impact of a two-tiered parent coaching program on parent use of ESDM strategies, and child communication, imitation, and engagement. Two groups of parents participated in the following phases: (a) baseline 1, (b) group parent coaching program (Tier 1), (c) interview 1, (d) baseline 2, (e) individual parent coaching program (Tier 2), and (f) interview 2. Group 1 involved four families (four parents, four children), and Group 2 involved three families (five parents, three children). The group coaching program (Tier 1) was a 10-week program with weekly in-clinic group coaching sessions that lasted 60 to 90 min. However, the second group only received nine sessions due to a COVID-19 lockdown. During the group program, parents were encouraged to watch online modules from Help is in Your Hands (Rogers & Stahmer, 2023), they were also given one-page summaries of each topic, and the coach used collaborative discussions, occasional modeling, and note-taking on a white board. The content was designed in ways that were intended to enable parents to embed the 13 ESDM fidelity items into their play and interactions with their child (Rogers & Dawson, 2010). Parents attended the group coaching sessions with their child. Student volunteers supervised the children while parents discussed P-ESDM strategies with the coach in a group, then parents practiced the strategies with their child with feedback from the coach and opportunities for reflection and collaborative goal setting. The individual coaching program (Tier 2) was also a 10-week phase, that consisted of one goal review session, followed by nine weekly 50-min individual coaching sessions attended by one child and their parent(s). The focus of each individual coaching session was decided collaboratively between the parent(s) and the coach. Individual coaching sessions followed the P-ESDM Coaching Fidelity Rating Tool (Rogers et al., 2021) and involved discussion, guided practice, reflection, and goal setting. Kelly and Elijah withdrew from the program after five sessions in Tier 2, following a 3-week COVID-19 lockdown.
Parent Interviews
Parents were invited to participate in one interview following group coaching (Tier 1) and another following individual coaching (Tier 2). All parents participated in both interviews, except Kelly who participated in the post-Tier 1 interview but declined to participate in an exit interview after withdrawing halfway through Tier 2. Semi-structured interview protocols (in the Supplementary Materials) were used to conduct interviews with parents. In both interviews the interviewer asked broad questions such as “What was it like for you and your child to take part in the parent coaching program?” and there was flexibility to respond to parents’ ideas as they arose, with follow-up probes such as “Could you tell me more about that?.”
All interviews were conducted between 1 and 6 weeks after parents had completed each tier of parent coaching (dependent on parent availability). The post-group-coaching interviews were conducted before parents began the individual coaching tier. Parents of each child were interviewed individually or in couples, according to family preference, at a time and location that suited them, in this case, either in-home or in-clinic. Interviews lasted between 30 and 60 min (
Qualitative Analysis
The transcripts of the interviews were entered into NVivo qualitative analysis software (Lumivero, 2022) and analyzed using reflexive thematic analysis (Braun & Clarke, 2021a). A reflexive thematic analysis approach was chosen as it is a systematic approach to identifying important meanings, patterns, and experiences in the data (Braun & Clarke, 2021a). The first author (who was also the parent coach) transcribed, then read, and re-read the transcripts to acquaint herself with the data while writing familiarization notes (Braun & Clarke, 2021a). Seven of the 13 interview transcriptions were checked by a second researcher to check for reliability of transcription, there were very few, and only minor disagreements. The first author then analyzed the data using an inductive approach (Braun & Clarke, 2006). That is, the initial codes and resulting themes were tied very closely to the data and the first author refrained from creating a codebook or familiarizing herself with similar research and theories until after the initial coding had occurred. The inductive approach was well suited to the broad research aim of understanding parent experiences and perceptions of the two-tiered P-ESDM program. A semantic approach to coding was adopted, where parent utterances were coded based on their explicit or surface meanings (Braun & Clarke, 2006). The initial coding process generated more than 80 codes. These codes were reviewed against the transcripts by a secondary coder and then discussed with the second and fourth authors. This process of peer debriefing and reflection helped to refine the codes and generate initial themes. The themes were then reviewed by the first author in an iterative and reflexive process with comparison against each transcript and a codebook was developed. The codebook was reviewed by the third and fourth authors at different points in the process. Developing the codebook helped to “refine and define” the themes (Braun & Clarke, 2006, p. 92) and ensure there was internal homogeneity within and external heterogeneity between themes (Patton, 2014).
The interviews were not analyzed until after all parents had completed both tiers of parent coaching, and all interviews had been conducted. Delaying the analysis was due to logistical constraints, and to ensure that both groups of parents (who completed the tiers non-concurrently) received the same coaching program. Unfortunately, this precluded opportunities to revise the interview framework in light of the data collected in earlier interviews.
Data saturation, a common requirement for thematic analysis, may not be universally relevant to all qualitative inquiry (Nelson, 2017; O’Reilly & Parker, 2013) and is particularly unsuitable for
Trustworthiness
In an attempt to establish the trustworthiness of these data, several measures were utilized. First, data were triangulated (Brantlinger et al., 2005) between transcripts as the researcher looked for consistency among parent experiences in developing the themes. For example, while refining the codes and forming the themes, the first and third authors ensured that themes included data from all interviews, across all participants. The frequency of data for each theme is demonstrated in the codebook (see Supplementary Materials). However, the authors also made sure to include and report on disconfirming evidence (Brantlinger et al., 2005) or experiences of parents that were discrepant from those of other parents. For example, describing how parents reported emotional challenges associated with attending this program, despite most parents expressing improvements in mental and emotional health. Multivocality was upheld by ensuring that quotes and experiences from all parents were included, especially those who were of different ethnicities and genders from the author (Tracy, 2010). Multivocality was also supported by including thick, detailed descriptions (Brantlinger et al., 2005) through extensive use of parent quotes to “show rather than tell” (Tracy, 2010) the findings and to substantiate the conclusions that are drawn by the researcher. Collaborative work in designing the study, and peer debriefing (Brantlinger et al., 2005) on the codes, themes, and written reports of this research also help to reduce bias and increase the credibility of these findings (Tracy, 2010). The first author’s positionality was explored through self-reflection to increase the sincerity of this research (Tracy, 2010); see Supplementary Materials for a personal refection statement.
Member checking (i.e., asking participants to “confirm” their transcripts or the resulting themes) was not used in this research. The decision to not include member checks was made in line with recommendations from Motulsky (2021), taking several factors into consideration. First, the interviews were transcribed and analyzed after participants had completed both Tiers of the program due to logistical constraints. Therefore, the assumption of member checking allowing for more “accurate” data may have been jeopardized by the passage of time, and lack of accuracy of recall regarding Tier 1 after also completing Tier 2. Second, several parents had declined to participate in a follow-up phase of the research (around the time that interviews were being transcribed), and it was perceived by the researchers that the ongoing research participation demands were too high for many families. Therefore, there was concern that asking participants to review transcripts or themes would place unnecessary burden on these busy parents, some of whom had first begun their involvement 12 months prior.
Results
Figure 1 outlines the 4 key themes and 13 subthemes that were developed through the reflexive thematic analysis.
Schematic Diagram of Key Themes and Subthemes Generated From Parent Interviews
Accessibility and Participation
Family Knowledge
The knowledge families held about autism, diagnosis, and relevant supports was relevant for all parents in finding and choosing to participate in this program. For Jay, diagnostic waitlists and relevant referrals were barriers to finding out about this program. Many parents described not knowing how to support their child, even post-diagnosis. For example, Kiran “didn’t have any idea, any direction, where to go, how to do it.” Some extended family members were also hesitant to be involved due to lack of knowledge about autism, for example, “at times [Grandma] still maybe doesn’t quite believe about the autism or ASD. So that kind of does hinder her a little bit” (Amanda). Issues around family knowledge were mostly raised in the Tier 1 interview.
Program Accessibility
All participants raised factors relating to program accessibility. Several parents discussed affordability as a potential barrier, because “money-wise. . .for some families [participating in the whole course] would be quite hard” (Amanda). Participating in this research program was free which was a facilitator for two families, although transport costs to attend were a challenge for one family. Traveling to the clinic was a barrier for some families. Providing courses locally for “people from out of region” (Holly) or online courses (Amanda) were suggested as options to facilitate access. These topics were raised by parents in both the Tier 1 and Tier 2 interviews.
Being busy was a barrier for all families at both interviews, particularly as the course ran during work hours. Several family members could not attend ‘because he works a lot, so he didn’t really have a lot of time’ (Holly). Conversely, the flexibility of the program to work around families’ commitments was a facilitator for several families, especially bringing siblings and rescheduling individual sessions. For example, Jay felt that “[The coach has] just been so accommodating of the whole family, like as a unit.”
Language and Culture
Language and culture were also factors that influenced some parents’ experiences of this program. From a Māori perspective, Kelly suggested that including karakia (Māori prayer) at the start of the sessions would be helpful “because I’m just frazzled, just trying to get here on time. . . Doing a karakia would have been like, okay cool, just going to get rid of all my worries that I had just trying to get here, cleans the slate, sets good tones, sets the energy.” Annie expressed some cultural differences in understanding autism from a Chinese perspective, including “we didn’t think that joint attention required eye contact.” While, for Sally and Sam, language barriers created difficulties for participation, especially in the group sessions, as they “sometimes don’t have the right word to express our feelings and . . . what we want to ask” and they suggested that adding “some Samoan terms into the conversation, into the discussion” and the resources would increase accessibility for Pasifika families. There were also challenges “trying to make sense of . . . two worldviews,” such as how some “Pacific parents, that they still think that this child might be a curse.” A suggestion was to hire Samoan cultural advisors “who are in the area, to help us, and help our people to understand” and to have “food on the table.” Sally expressed that the language barriers were less in the individual (Tier 2) sessions; ‘individually like, it’s okay. Like we’re safe no matter if it’s wrong or right.’ Two New Zealand European parents, one Pakistani parent, and one Māori/European family did not think there were any cultural issues.
Experience of the Two-Tiered Coaching Process
Program Content and Design
Program Design
Several factors were important to parents regarding program design. Many parents felt that “the structure was good, the topics were good” (Kiran) and there was a clear “focus on like, one thing a week” (Jay). The structure of sessions and progression of topics was described positively across both the Tier 1 and Tier 2 interviews. The structure of group (Tier 1) then individual sessions (Tier 2) was described as “very complimentary” (Amanda). Merry felt “the group one just gave us a nice baseline on what to expect and how, on the skills we can use. Whereas the focus one gave us more of an in-depth view of those techniques.” In the group sessions, four parents described the volunteers as helpful; “to play with the kids so that we could actually listen and talk to [the coach]” (Holly).
Program Duration
Regarding session length, Heather was concerned “to begin with, I thought it was a little bit long. But then [Zack] got used to it.” Others felt like “any longer than [an hour] probably would be too much, but I thought the length was, like it was just right” (Kelly). Regarding session quantity, most parents wanted more sessions even after the full 20 weeks, although Amanda felt “the length was very good for us.” Two parents felt that fewer sessions would not be sufficient; “considering how much information was packed into them, it was pretty much the perfect amount [of sessions]” (Holly). Kiran felt weekly sessions worked because “when we are going weekly on the programs, then we stay more connected to [the techniques].”
Program Content
The program content was described as “relevant” (Amanda, Kiran), “applicable,” ‘important,’ (Amanda), “helpful” (Holly, Heather), “useful” (Sally), and “interesting,” (Kiran). “There was a reason for talking about things” (Kelly), and for Merry “everything we’ve learned here, it’s been put to use.” The content being specifically “focused on children with autism” (Sally) was important to several parents. The focus on incorporating strategies into child routines was also discussed as a strength; “play-based learning really, is really important to us” (Jay). A couple of parents mentioned that the program content aligned with their existing knowledge. Predominantly in the Tier 2 interview, parents reported content areas they felt were missing included “emotional coaching” (Amanda), breaking down goals (Jay), dealing with child anxiety and shyness (Sally), sleeping, “toileting and eating” (Heather), “gastrointestinal” issues (Kelly), and sensory challenges (Amanda, Heather). In addition, in Tier 1, Jay felt that some of the content from Help is in your Hands was not neurodiversity affirming. Specifically in relation to teaching play goals there was one part of one of videos we really didn’t like . . . the parent wanted [the child] to play with the car properly. And I was like, well it’s not play if you’re forcing them to do something the way it “should” be done.
Learning Process
Learning the Theory
For learning the theory, many aspects of the multi-modal approach were considered helpful, including (a) “the video and the commentary” from Help is in Your Hands, (b) demonstrations by the coach and other parents, (c) having written notes, (d) the way the coach “explains things in a way that makes sense to me” (Kelly), and (e) “using the whiteboard” (Kiran). However, Merry “found the videos very boring,” and Heather was not able to access Help is in Your Hands on her device. Parents mostly discussed issues around learning the theory in the Tier-1 interviews.
Learning to Implement
For learning to implement the strategies with their own children, all parents found “the practical hands-on stuff” (Merry) helpful. Several parents expressly stated that they prefer experiential learning to “bookish knowledge” (Kiran), stating that “we need real children to apply the theory” (Sally). All parents also commented positively on the coach’s guidance during practical sessions. For example, it “was really good to. . . be able to get the feedback then and there” (Holly). The coach’s guidance and feedback were particular strengths of the individual sessions where “[the coach] could work with us more focused” (Merry). However, Merry and Jay found it difficult to be “put on the spot” (Jay), and Holly and Kiran wished there was more written feedback.
Learning From Other Parents
Six parents described learning from other parents in the group sessions as a positive experience. Comments regarding learning from other parents included “seeing others do it” (Heather), and parents working together to “troubleshoot” (Merry). However, for Sam and Sally the individual sessions were easier “because the language [barriers] makes us a little bit worried. . . to share. . . and play in the group session.”
Program Alignment With Parent and Child Needs
Individualized Program
All parents described how individualized the program was across both Tiers of the program. Individualization of the program included how the coach would “tailor the learning thing to each one of us” (Holly) in the group sessions, and how the individual sessions were ‘very targeted for Steve’s needs and that was really helpful’ (Amanda). All parents also mentioned the flexibility of the program to meet either the child’s needs or the parents’ needs. For example, Heather felt the individual sessions were “really good because she still stuck to [a topic] until I was actually comfortable before moving onto the next.”
Collaborative Process
Many parents described how collaborative the sessions were. In the individual sessions Jay felt that ‘it was like our time and how we wanted to use it. She really, like, emphasized that. . . what’s important to you is important to her.’ Several parents specifically mentioned how the coach listened to understand the parents’ needs; “she was always very good at listening to what our concerns or goals were and trying to tailor her knowledge and expertise to that area” (Amanda). The coach’s ability to “tailor the learning thing to each one of us” (Holly) was also described in several Tier 1 interviews. A possible downside of the collaborative approach was outlined by Kelly however, as “there’s a pro and a con to it because the pro is that the power is with us as a parent. But then also like the con is that we got to do all the thinking and it’s just another thing to do.”
Safe Learning Environment
Many parents described how the coach made them feel safe and valued during the coaching process, in both the Tier 1 and Tier 2 interviews. Specifically, the coach was “so approachable and friendly and easy to talk to” (Heather), and “she’s not judgey [sic] or anything like that” (Holly). Sam said “we feel safe to share with [the coach] . . .. about how we feel and how can she help us meet our goals as parents.”
Wanting Ongoing Support
Parents’ reasons for continuing with Tier 2 after Tier 1 included a focus on the child, such as feeling like their child had “made great leaps and strides during the group sessions, so yeah, could only get better and keep going” (Merry), or wanting to achieve child goals that had not been achieved in Tier 1. For example, Kiran stated “I was looking forward to that, we will achieve these goals in a better way in individual coaching because we have more 1 to 1 attention.” Some parents also focused on their own learning, such as wanting “just to learn more” (Heather), and ‘looking for more like personalized [support]. . . that maybe suited Merry’s learning style a bit better’ (Jay). For Sally and Sam, it was also about wanting to “equip us more around how to play with Dominic” and making time to see Dominic’s strengths in a 1–1 setting.
Child Experience
Parents identified both positive and negative factors in their child’s experience of this program. Having sessions at the clinic was viewed positively by several parents across both Tier 1 and Tier 2. For example, Kiran felt that “in the clinic [Muhammed] was more focused and in the whole hour we, he was focused more here.” However, Heather felt that the individual session rooms were “claustrophobic” and “to begin with [Zack] hated being in those rooms.” Reflecting on the group sessions in the Tier 1 interviews, some parents described their child as being “easily distracted by what other kids were doing” (Holly) and therefore difficult to engage with, or conversely “not much interested in playing with someone else” (Kiran) and therefore clinging to their parent during group discussions. For three children the group session environment was challenging. For Zack and Elijah this improved over time. While, for Dominic, Sally felt that “when we come here, a new environment he’s still shy” even after 10 weeks. Factors that parents perceived positively for their child included “being so welcomed there, he felt comfortable” (Heather), and the availability of high-interest toys (Holly). Overall, across both interviews, most parents described their child “liking” or “loving” coming to the clinic, being “happy,” or so “excited going down the street . . . as soon as we pulled up he would want to jump out of his car seat” (Heather).
Commitment and Perseverance
Challenges to Implementation
All parents expressed difficulty with some aspects of strategy implementation. For some parents, the number of new strategies to implement was “so hard to keep up with” (Holly), especially in the second Tier. For other parents, understanding the content was easy, but they “found the application a bit harder” (Amanda). All parents described situations where they did not want to use the strategies with their child or admitted they “never really 100% stuck to it” (Heather). For Jay, it was ‘an inner battle for me because I don’t want to be, like, the mean parent the whole time.’ Another factor that decreased parent motivation to implement strategies was when they felt their child was not progressing; ‘because I found it so hard. It was like, I’m getting nowhere with this’ (Amanda). Kiran was the only parent who mentioned the challenges associated with a lack of progress across both Tier 1 and Tier 2 interviews. Finally, finding time and energy to implement the strategies with their child was difficult for several parents. It was “taxing as parents. . .. Like just trying to implement the [strategies] and just trying to do normal life is hard” (Kelly).
Mind-set, Perseverance, and Commitment
Despite the challenges faced in implementing the strategies, most parents described a sense of commitment to the process. For example, in Tier 2 Heather explained ‘I have to find time and make time because it’s going to help him in the end. So even if it’s just an hour a day, you know, between kindy, [sic] work and a million and one appointments.’ Many parents described the effort they put into the process across both Tier 1 and Tier 2 interviews using terms including “working,” “trying,” and “persevering.” The importance of “repetition” (Merry) and practicing new strategies until “it becomes automatic for you” (Kelly) was emphasized. Factors that increased parent commitment to the process included “putting faith in the strategy. . . that it does work” (Kelly) and understanding that “it’s a lifetime process’ (Kiran). Parents also perceived it was important to ‘have an open mind and. . .find out ways that we’ll be able to help us improve” (Sally), with all parents mentioning a willingness to learn. Finally, seeing child progress was a reinforcer for all parents across both tiers of interviews. Jay described it as “uplifting if you’re like ‘oh wow, I’ve done that. I’ve helped make that progress.”
Outcomes
Alignment Between Goals and Outcomes
Pre-Program Goals
Parents had many goals for the parent coaching program. Skills that parents wished for their child to learn included increased communication, social skills and engagement, following instructions, imitation, “getting dressed” (Holly), reducing “his rigidity” (Amanda), and reducing behavior challenges such as tantrums. Jay expressed a focus on wanting to “understand him more,” how to ‘better integrate into what he’s doing’ and “to be more patient.” Sally expressed wanting to learn how to “manage our stress levels” as parents. Six parents mentioned being “keen to learn anything” (Amanda) that they could use to help their child.
Extent of Satisfaction With Outcomes
Overall, parents expressed being “very happy and satisfied with [the program]” (Kiran) for both their own learning and their child’s learning, especially in the Tier 2 interviews. Parents expressed being “grateful” to be involved and two parents felt that the program “exceeded my expectations.” Some parents were satisfied with the changes in their child, for example “he’s just progressed so far in the six months” (Jay). However, several parents hoped for their child to achieve goals that were not attained during this program, including “we need more improvements on his shyness, on the behavior” (Sally). Two parents felt that even if their goals had not been fully achieved, their child was “still like better than he was” (Holly) at the target skills. Some parents saw improvements for their children but expressed uncertainty about what had caused the improvements. For example, Heather found it “hard to toss up whether it was this playgroup or whether it was kindy, [sic] but I think it’s a bit of both.” Several other parents identified both their own learning and their child’s as important, for example, “I don’t think Charles would be where he is today without all the stuff he’s done at the [clinic]. And it’s been so helpful to me” (Holly).
Individual and Family Wellbeing
Parent Mental and Emotional Wellbeing
Many parents expressed experiences of negative mental health pre-program, including being “very upset” when their child was diagnosed (Kiran), and experiencing very high anxiety (Heather). Kiran and Jay described feeling overwhelmed or “deadlocked” (Jay), and “then you get worried about the future and stop doing anything with the present” (Kiran). During the Tier 1 interviews, Kiran described sometimes feeling “a little bit depressed” seeing other children doing things that Muhammed could not, and Amanda began this program before Steve was diagnosed so it was a “little bit confronting for us, like, ‘oh, we’re going to an autism clinic.’” Across the two interviews however, most parents described how participating in the program improved their mental health or wellbeing, including “my ability to cope” (Amanda), “less stress” (Merry, Jay, Sally), “manag[ing] our anger” (Sally, Sam), being able to “go with the flow” (Kiran), and Heather found that ‘[before] I was getting anxious, leaving the house and going to the shops and stuff. But now I don’t because we did learn how to deal with that.’ Sally summarized it as, ‘if we compare now to before, our stress level, it’s, we can breathe, we can finally breathe.’ However, three parents expressed some ongoing emotional challenges in the Tier 2 interviews. Starting school was something that Jay felt “nervous” about, and Amanda felt the uncertainty around Steve’s future was “maybe a bit sensitive or unnerving for us.”
Child Skills and Participation in Family Routines
Parents described several child improvements that led to increased quality of life for the child and their families, and increased participation in family routines. Noted improvements in their child included improved listening skills, improved emotion regulation and decreased “tantrums” or “meltdowns,” improved adaptive functioning, decreased self-injury, decreased “rigidity” (Amanda), greater tolerance for transitions, and new places, and understanding limits set by parents. Kiran felt that “these are big goals, I think, because before that he wasn’t doing anything.”
Family Wellbeing
Many parents perceived benefits to the wider family from participating in this program, especially in the Tier 2 interviews. Sally felt that the program benefited the communication and collaboration in her marriage, saying “I think if we are to rate our relationship . . . it’s healthier now.” Conversely, Amanda felt that because her husband had not been able to attend the program, they were now “a little bit discrepant” in their approach to interacting with Steve. Many parents felt the program led to benefits for other family members, including grandparents, parents who were not attending the course, and siblings. Kelly felt that “everybody gains out of it from, you know, from our whole family’s perspective.” Sally and Kiran both described being able to participate in more community and social events as a family because their child is more “part of our lives” (Kiran) and it was important that they can now “have that family time” (Sally).
Community, Connection, and Relationships
Parent Connections
Several parents felt “there’s a lot of isolation” (Merry) associated with parenting an autistic child. In the Tier 1 interviews, many parents described it as a positive experience to meet parents with “similar struggles” (Jay). Such as Holly, who felt that ‘we’re all going through the same thing. So, it’s great to have that understanding as well.’ This “sense of togetherness” (Kelly) and “almost kinship” (Jay) that came from meeting “other people that understand” (Merry) and shared the same “goals and values” (Sally) was echoed by many parents. Parents’ connection with the coach was also an important aspect of the program for some parents across both Tiers. Kiran said ‘she’s like involved with us, like a close friend or like family member. Not only our teacher.’
Parent and Child Relationships
Parents described times pre-program where they felt like they ‘couldn’
Child Connection
Parents described times both before and during the program when their child was not integrated into social interactions. Parent descriptions of their children included them generally being “quite closed off, he liked to keep to himself” (Merry), peer interactions that were negative or non-existent, other adults—including teachers—not being able to connect with their child, and difficult interactions with siblings. After participating in both Tiers of this program, all parents perceived a difference in their child’s social interactions, and social communication. Parents described their child as playing with other people more, being more interactive, more “open,” having increased attention to others, and being “more engaging” (Amanda). Four parents saw their child playing more with their sibling(s). Two parents noticed positive peer interactions during the group sessions (Tier 1 interviews), and two other parents described improved social interactions with peers at kindergarten. All families except Kelly also described their child using more social communication to interact with others, including using more verbal communication, initiating social interactions, sharing or taking turns, using eye contact, imitating others, and greeting others. Four parents also commented on the positive relationship that their child had with the coach even at Tier 1, for example, “she formed a bond with all the kids. . . they all knew who she was” (Heather).
Empowered Parents
Learning New Skills
Perceived improvements in parent skills were reported in both interviews. Many parents gained “a lot of extra skills” (Holly) or “developed new strategies” (Kelly) in this program that “taught us to teach” (Sally) their own children. Five parents described learning strategies that positively impacted their child’s communication, for example, “he’s using a lot more words and mimicking what I’m saying because of my narrating” (Heather). Kiran and Sally described changing their approach to play with their child, and for Amanda “it felt like actually we were just changing how we interact.” Some parents described gaining skills to prompt their child to be successful. Many parents described gaining strategies to cope with challenging situations. For example, Sally believed that “this is the right program to come in and learn more about. . . [ways] to handle stress and to deal with children with difficulties in their behaviors.”
Gaining New Perspectives
Across both interviews, many parents described increased understanding of their child including, understanding “how he perceives the world” (Merry), and being “more in tune” with their child (Amanda). Two parents also described learning more about the autistic characteristics their child showed, for example, “I did see that during the course. Wow. He really does have trouble imitating” (Amanda). Several parents described learning to be more “patient” with their child, and Jay felt “a lot more acceptance.” Several parents described thinking more positively about their child’s abilities because of this course, for example, it “just opened up the possibility that anything’s possible with time and a lot of patience” (Jay).
Discussion
Using thematic analysis, this qualitative study provides insight into nine parents’ experiences of participating in a two-tiered P-ESDM support program. Many parents described barriers to accessing this program including cultural considerations. Parents described many benefits of the two-tiered coaching design, and both strengths and challenges regarding the program content, duration, process, coaching approach, and child experience. Parents reported both barriers and facilitators to implementing the program strategies at home. Overall, parents were mostly satisfied with the program outcomes, citing improvements for their child, themselves, and their families.
There are many factors that impact the accessibility of autism support programs. This study adds to the growing body of literature that has found limited knowledge about autism and available supports, affordability of programs, time and work constraints, and logistical challenges, create barriers to parents accessing and implementing support programs (de Korte et al., 2022; Jurek et al., 2022; Malik-Soni et al., 2022; Seo et al., 2022; Singh & Bunyak, 2019; Waddington et al., 2020; Wallace-Watkin et al., 2022). More research is needed that systematically addresses these issues to create equitable access to relevant supports. For example, telehealth can be a feasible and effective approach to delivering parent coaching (e.g., Pan et al., 2023; Vismara et al., 2012), and parents perceive several benefits of telehealth including increased flexibility (Cheung et al., 2023) which may help to reduce barriers associated with travel and logistical constraints. Additionally, however, there were times in this program when parents did not want to or did not have the capacity to implement the strategies. Making sure strategies are manageable and feasible for parents to implement, and understanding the protective factors that motivate parents to learn and implement the strategies despite these challenges, is therefore important. Parents in this program described being open-minded and keen to learn anything that could help their child, therefore suggesting that they had the levels of motivation for learning new skills that is required for parent coaching to be successful (Kaiser & Hancock, 2003).
The reports of some parents experiencing cultural and language barriers in this research is a key finding, as New Zealand is a bi-cultural society where some minoritized communities such as Māori and Pasifika people experience inequitable health outcomes (Ministry of Health, 2020, 2023). Reports of cultural and language barriers suggest that programs such as the ESDM which have been developed in the United States may not be appropriate for dissemination with culturally and linguistically diverse groups without adaptations. Under New Zealand’s Treaty obligations, it is particularly important to ensure that autism support services are culturally appropriate for Māori (Tupou et al., 2021). Research exploring parent and teacher perceptions of supporting tamariki takiwātanga (autistic Māori children) has suggested that including Māori cultural resources, te reo (language), and activities is important, and, that support approaches that align with a neurodiversity perspective might also align with te ao Māori (Māori world view; Tupou, Ataera, et al., 2023; Tupou, Ataera, & Waddington, 2023). One of the participants in the current study, whose child was also Māori, commented on how some of the video examples from Help is in Your Hands were not neurodiversity affirming. Therefore, cultural adaptations and aligning NDBI models and their goals with the neurodiversity movement, could make these supports more accessible and acceptable to a diverse range of families (Dawson et al., 2022; Schuck, Dwyer, et al., 2022; Schuck, Tagavi, et al., 2022; Waddington et al., 2023). Community-based participatory research which actively includes autistic individuals at all stages of design and implementation could help to achieve neurodiversity affirming supports (Autistic Self-Advocacy Network, 2021; den Houting et al., 2021; Fletcher-Watson et al., 2019).
The parents’ positive perceptions of the coach and coaching process may have facilitated this program. Strong therapeutic alliances, collaborative decision-making, parent implementation with feedback, a sense of connection, and a safe learning environment have all been identified as strengths of other recent parent-mediated NDBIs (de Korte et al., 2022; Sengupta et al., 2023; Seo et al., 2022). This is important, as “having a good relationship with a provider, easy communication, and providers understanding the family’s and child’s needs” are important facilitators for parents accessing autism support services (Wallace-Watkin et al., 2023, p. 9). However, parents in some parent coaching programs report feeling stressed or undervalued by coaches (Jurek et al., 2022). It is possible that directive approaches to coaching, where the therapist is positioned as the expert, may not be as effective for parent learning as collaborative approaches (Rush & Shelden, 2011; Tomeny et al., 2020). Even clinicians who are skilled at delivering support to children may need explicit training to be able to engage effectively and collaboratively with parents (Brookman-Frazee et al., 2009). The coach in this current study had completed the ESDM parent training course and followed the P-ESDM coaching manual (Rogers et al., 2021), which emphasizes many of the elements parents perceived positively in this program. Furthermore, the quantitative study measured and reported very high P-ESDM coaching fidelity (van Noorden et al., 2022), therefore suggesting that training in and adherence to the P-ESDM coaching method may be an effective approach to supporting clinicians to coach parents in ways that are perceived as supportive and effective by parents.
Including a group coaching phase in this program may have helped to address the holistic needs of the parents, especially through the opportunities for peer-to-peer support (Jurek et al., 2022; Zhao et al., 2021). Parents felt that the strengths of the group sessions included learning from the other parents as well as reducing parental feelings of isolation, and increasing connection with other parents of autistic children. Peer support may have contributed to the increased feelings of wellbeing and confidence reported by parents. In addition, parents reported enjoying the group sessions and seeing them as an important “baseline” before moving into the individual sessions. The individual coaching sessions were described as complimentary to the group sessions. Individual sessions could be viewed as providing the more “advanced program” desired by many parents in Jurek et al.’s (2022) systematic review. Indeed, all parents chose to continue with Tier 2 after participating in Tier 1 (even Kelly who later withdrew halfway through Tier 2). Parents cited wanting more support for their child, themselves, or both, suggesting a high demand for ongoing “advanced” support. Several researchers have found that participants in 12- to 14-week P-ESDM studies want more support (Qu et al., 2022; Seo et al., 2022; Waddington et al., 2020). In contrast, findings from a 24-week P-ESDM program indicated high levels of parent satisfaction with duration (Mirenda et al., 2022). Despite this current study being one of the longest P-ESDM programs in the published literature at 20 weeks, most parents still reported wanting a longer program duration and stated that any fewer sessions would not have been sufficient. Parent desire for longer support programs has important clinical implications.
Parents reported further positive effects that were not detected by the quantitative data. Most parents experienced improvements in mental health factors not measured in the quantitative study (van Noorden et al., 2022), including reduced anxiety, better anger management strategies, increased ability to “go with the flow,” and feeling empowered to make a difference in their child’s lives. Many parents also commented on their child’s increased ability to participate in family routines that led to decreased harm and improved quality of life for the child, perceived benefits to their wider family, and the child’s increased connection with other peers, siblings, and adults. These findings highlight the importance of mixed methods research approaches as these emotional and relational outcomes are often not accessible through quantitative measurement (Leadbitter et al., 2020). These are also important findings given the scarcity of research measuring the impact of support programs on child and family wellbeing, including quality of life (Trembath et al., 2023).
There were some differences between parent perceptions collected through interviews at the end of Tier 1 compared with end of Tier 2. Specifically, parents reflected more on issues related to family knowledge in the first interview, perhaps reflecting that parent knowledge and education is a particularly relevant barriers to initiating support services (Wallace-Watkin et al., 2023). Other barriers to accessibility such as travel times and costs and the timing of sessions were reported across both tiers of the program, suggesting that even the relative flexibility of scheduling individual sessions at parents’ preferred times was not sufficient to reduce these pressures on families. Language and culture barriers were raised predominantly in the Tier 1 interview. It may be that the group sessions made cultural differences more salient, and greater care needs to be taken to support diverse families when conducting group coaching sessions. Some parents focused on the challenges of learning the theory in Tier 1 but discussed challenges regarding the application of strategies more in Tier 2. The progression from theory to application perhaps reflects different stages of learning and parallels the quantitative results reported in (van Noorden et al., 2022) where more parents reached high levels of fidelity in Tier 2 than in Tier 1. Parent perceptions of their own learning could also offer support for providing longer parent coaching programs as it may be that parents need longer than 10 weeks and/or more individualized coaching support to feel confident implementing strategies. Parent perceptions of desired and observed outcomes across Tier 1 and Tier 2 were unique to each family; perhaps due to the unique presentations, needs, and responses to support that are observed across the autism literature more broadly (Jurek et al., 2022; Masi et al., 2017; Trembath et al., 2019). Generally, parents reported greater satisfaction and more benefits for themselves, their children, and their wider family at Tier 2 than at Tier 1. The perceived benefits and satisfaction align with parents’ rationales for continuing with Tier 2 in that they all wanted more support for either their child or themselves.
Not all parent goals were achieved through this program, however, nor were all topics included that parents wanted. Despite the ESDM being a comprehensive support program, other research has also found that parents want additional goals and/or topics to be addressed beyond P-ESDM (Qu et al., 2022). Parent desire for more topics to be covered in support programs is also reflected in the parent coaching literature more generally (Jurek et al., 2022). In this program, some parents wanted more support with emotional coaching and reducing anxiety, sleeping, toileting, eating, and sensory challenges. Therefore, it is important to ensure that other programs are accessible that meet these parents’ needs and that parents are referred to these supports as required.
Limitations
There are several limitations that should be considered when interpreting the results of this research. First, only seven families of autistic boys participated in this program, so these findings may not be representative of all experiences of this type of P-ESDM. Second, the one parent who withdrew declined an exit interview, therefore important qualitative data regarding the limitations of this program may not have been captured. The perspectives of the children were not collected; therefore, it is not understood how the program was experienced by these key participants. This research also utilized a semi-structured interview guide which allows the interviewer to respond flexibly to the ideas raised by interviewees (Brinkmann, 2020); however, this can also introduce discrepancies between the questions asked and information elicited in different interviews (Wengraf, 2001). Interview data can also be influenced by factors such as what the interviewee thinks the researcher wants to hear, and conventions about what topics can be spoken about between different people (Hammersley, 2008) and therefore needs to be interpreted with caution. Finally, the interviews were not analyzed until after both groups of parents had concluded their participation in both tiers of the program; therefore, it was not possible to adapt this program in response to parent feedback.
Implications and Future Research
Several implications for clinical practice could be drawn from these findings. First, it is imperative that autism service providers in New Zealand are responsive to the diverse needs of Māori accessing autism early supports (Tupou, Ataera, & Waddington, 2023). Translation services and cultural advisors could also facilitate access to support services for underrepresented cultural groups (Wallace-Watkin et al., 2022). Second, practitioners should be aware of the burden of participating in parent coaching programs, as the expectation that parents are solely responsible for their child’s learning and development may be overwhelming (Jurek et al., 2022; Roberts & Dissanayake, 2013). Practitioners need to be empathetic toward the reality that not all parents will have the capacity to be fully involved, or to implement complex strategies consistently (Trembath et al., 2019), and ensure that other supports are available for both parents and children as needed (Jurek et al., 2022; Vivanti & Stahmer, 2018). Third, coaching parents in groups should be explored by autism service providers as not only is it an efficient service delivery model (Minjarez et al., 2011), but also parents report it can provide holistic support through community building, peer support, and learning. However, designing group programs where participating children share similar characteristics may be beneficial (Jurek et al., 2022), as some parents may find it difficult if their child has higher or lower support needs compared with other children in the group. Appropriate advanced courses and individualized supports should also be included, as the group format was not comfortable for all parents, and van Noorden et al. (2022) found that several parents did not learn to use the strategies accurately until during the individual coaching sessions.
Several areas for future research are indicated by this study. First, given the time constraints faced by parents, research should explore what the mechanisms for change in child outcomes are in the P-ESDM (Vivanti et al., 2018), so that P-ESDM coaching can be made as time- and resource-efficient as possible. Similarly, researchers should explore ways to include more family members through flexible or individualized delivery. This could include telehealth delivery or asynchronous meetings (Qu et al., 2022; Raulston et al., 2019). Determining optimal program intensity and duration is also important, given that parents in some P-ESDM research have indicated that two sessions per week may be too intensive (Mirenda et al., 2022). There may also be a preference for P-ESDM programs longer than 12 weeks (Qu et al., 2022; Waddington et al., 2020), or even longer than the 20 weeks of this program. Finally, it is important that autistic individual’s voices are represented in research and decisions about clinical practice (Dawson et al., 2022). Therefore, future research should explore ways to ask children directly about their perceptions of participating in early support services and involve autistic adults at all stages of study design and implementation.
Supplemental Material
sj-docx-1-jei-10.1177_10538151231214749 – Supplemental material for Parent Perceptions of Participating in a Parent-Mediated Program for Young Autistic Children
Supplemental material, sj-docx-1-jei-10.1177_10538151231214749 for Parent Perceptions of Participating in a Parent-Mediated Program for Young Autistic Children by Lauren E. van Noorden, Jeff Sigafoos, Carla Wallace-Watkin and Hannah L. Waddington in Journal of Early Intervention
Footnotes
Declaration of Conflicting Interests
Funding
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Supplemental Material
References
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