Numerous review studies examining the efficacy of interventions for children with autism spectrum disorder (ASD) have been published in recent years (e.g., National Autism Center, 2015; Prior, Roberts, Rodger, & Williams, Reference Prior, Roberts, Rodger, Williams, Dodd, Ridley and Sutherland2011; Wong et al., Reference Wong, Odom, Hume, Cox, Fettig, Kucharczyk and Schultz2015). For a variety of reasons, however, ineffective and controversial interventions for ASD continue to be employed (Matson, Adams, Williams, & Rieske, Reference Matson, Adams, Williams and Rieske2013). These interventions are typically used concurrently with other interventions that have empirical support, and/or with interventions for which the efficacy is currently unknown (Carlon, Stephenson, & Carter, Reference Carlon, Stephenson and Carter2014; Salomone, Charman, McConachie, & Warreyn, Reference Salomone, Charman, McConachie and Warreyn2015). Factors including cost, availability, recommendations from others, and research evidence have been declared by parents in recent studies as influencing their intervention decisions (Bowker, D'Angelo, Hicks, & Wells, Reference Bowker, D'Angelo, Hicks and Wells2011; Grant, Rodger, & Hoffman, Reference Grant, Rodger and Hoffman2016; Valentine, Reference Valentine2010; Wong & Smith, Reference Wong and Smith2006).
Government bodies and other organisations have attempted to use the internet to disseminate information about the efficacy of different interventions to parents (e.g., Raising Children Network, 2006–2014; Research Autism, 2006–2014). The Raising Children Network website is supported by the Australian Government Department of Social Services, and the ASD component of the website was developed as part of the Australian Federal Government's Helping Children with Autism (HCWA) package (Raising Children Network, 2014b). The content development team of the website is assisted by both experts and advisors in the area of ASD and a scientific advisory board (Raising Children Network, 2014a). They have synthesised the findings of the reviews conducted by the National Autism Center and the Cochrane Collaboration to provide research ratings for common interventions for ASD used in Australia.
Another website that provides research ratings for interventions for ASD is the Research Autism (2006–2014) website. Research Autism is a United Kingdom–based charity that undertakes research related to autism interventions (Research Autism, 2015a). An information manager compiles a summary of information about different interventions for ASD for the website. For each summary, three experts in the area of autism interventions review the information summary along with research evidence from peer-reviewed journal articles in order to provide a research ranking and opinion on the intervention. These information summaries, rankings, and opinions are then reviewed and approved by the whole Scientific and Advisory Committee of Research Autism before being published on the website (Research Autism, 2015b).
Clearly, considerable effort has been invested in attempting to provide reliable and trustworthy research-based information to parents to assist them in making informed decisions regarding intervention options. Nevertheless, this information has been provided alongside many other websites offering unfiltered information about ASD and possible interventions. After recent reviews of autism-related websites, Reichow et al. (Reference Reichow, Halpern, Steinhoff, Letsinger, Naples and Volkmar2012) recommended that parents use caution when accessing information from any website, and that they should only use it to supplement rather than replace information received directly from professionals. Nevertheless, parents of children with ASD frequently use the internet to access information about ASD and interventions for ASD (Grant et al., Reference Grant, Rodger and Hoffman2016; Mackintosh, Myers, & Goin-Kochel, Reference Mackintosh, Myers and Goin-Kochel2005; Sabo & Lorenzen, Reference Sabo and Lorenzen2008).
Although information regarding the level of research support for interventions is provided in public forums, including the internet, some studies suggest that research evidence is not necessarily a major consideration for many parents in their decision-making regarding interventions to use with their children. Parents employ interventions without empirical support (Carlon et al., Reference Carlon, Stephenson and Carter2014; Salomone et al., Reference Salomone, Charman, McConachie and Warreyn2015), which indicates that they may not place a high level of importance on research evidence in their decision-making. Furthermore, when parents of preschoolers with ASD were asked to rate the importance of different factors in decision-making, other factors such as the parents’ intuition, staff attributes, and whether or not the intervention was ASD specific were given more weight than research evidence (Carlon, Carter, & Stephenson, Reference Carlon, Carter and Stephenson2015). It is not clear whether parents place less importance on research evidence because they are dismissive of the evidence, unaware of the concept of evidence-based practice, unaware of the level of research support for different interventions for ASD, or a combination of these and other factors.
A recent evaluation of the Australian Federal Government's HCWA package revealed that only 42% of the 4,437 families registered for HCWA funding surveyed had used the Raising Children Network website, and 63% of those who did not use it were unaware of it (ARTD Consultants, 2012). This indicates that parents may not be accessing information about the efficacy of different interventions even when it is made publicly available, and raises the question of whether increased awareness of this information would influence their decision-making. There does not appear to be any research examining the impact of such reliable sources of information about the evidence base for interventions on the preferences or decision-making of parents.
The present small-scale pilot study aimed to investigate whether a DVD providing guided access to two websites that presented reasonably balanced and accurate information about interventions for ASD would change parental views and/or intentions related to intervention decision-making. Specifically, the following research questions were addressed:
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1. Would the parents regard the guided access DVD as a useful resource?
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2. Would the parents become more confident in making decisions about interventions to use with their children with ASD after using the websites?
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3. Would the parents’ ratings of the importance of different factors in decision-making change after using the websites?
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4. Would the parents’ understanding of the level of research evidence supporting different interventions become more reflective of the information provided on the websites after using the websites?
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5. Would the parents’ desire to use different interventions (with/without empirical support) change after using the websites?
Method
Research Design
A single group pretest/posttest research design was employed for this pilot study. The independent variable involved the use of a DVD providing guided access to websites with information about the efficacy of interventions and the dependent variables related to parental ratings of the efficacy of interventions and their desire to use interventions.
Participants
Participants were parents of preschool-aged children with ASD. Four parents had previously expressed interest in participating in research regarding intervention decision-making with the researchers by providing their contact details separately when completing a previous anonymous survey. Ten had responded to recruitment notices distributed via autism associations and service providers in Australia (see Procedure). Those 14 parents began the trial; however, two did not complete the posttest interviews. The participants were eight mothers and four fathers covering five of the eight states and territories in Australia. Seven parents stated that they were the primary intervention decision-maker for the family, and five indicated that they shared this role equally with their child's other parent. The highest level of education obtained was Technical and Further Education (TAFE), college, or further training for three of the participants; an undergraduate university degree for two of the participants; and a postgraduate university degree for seven of the participants. The children were nine boys and three girls. At the time of recruitment their ages ranged from 21 to 66 months (M = 51.8), their ages at diagnosis ranged from 18 to 55 months (M = 36.6), and the time since diagnosis ranged from 2 to 32 months (M = 15.2). All parents reported that their child had been formally diagnosed with an ASD (eight with ASD, three with autistic disorder, and one with pervasive developmental disorder not otherwise specified). Seven parents considered their child's ASD to be mild and five considered it moderate. Parent completion of the Childhood Autism Rating Scale – Second Edition (CARS-2; Schopler, Van Bourgondien, Wellman, & Love, Reference Schopler, Van Bourgondien, Wellman and Love2010) indicated that three children had minimal-to-no symptoms of ASD, five had mild-to-moderate symptoms, and four had severe symptoms.
Guided Access DVD
To ensure that parents were able to appropriately access and interpret the information provided on the websites, a supporting DVD was developed. It contained two sections. The first section reiterated guidelines for choosing interventions that were presented on Raising Children Network (2009). It included information about evidence-based interventions, the importance of questioning claims and evidence, choosing a good fit for the child and family, and warning signs that an intervention may be ineffective. The second section contained directions for how to access two websites, including navigation, a summary of the type of information provided, and an explanation of ratings scales and symbols used. The websites, which were chosen by the authors, were selected because they provided generally accurate information about the evidence support for different interventions for children with ASD (i.e., a reasonably balanced and accurate view of the available research was presented; Raising Children Network, 2006–2014; Research Autism, 2006–2014). Two external experts in the area of ASD, both senior academics with extensive international publication profiles, also examined the websites at the request of the authors, and they confirmed that the sites provided a reasonably balanced and accurate view of the available research.
To facilitate the comparison of the research ratings supplied on the two websites and the ratings provided by participants, the ratings on the two websites were evaluated by the authors to give a ‘summary research rating’. Interventions were rated as having (a) no or negative research evidence, (b) weak research evidence, (c) moderate research evidence, (d) strong research evidence, (e) not rated, or (f) unable to be rated. Details of the rating procedure are available from the authors on request.
Instruments
The authors developed pretest and posttest questionnaires. The first section of the pretest questionnaire included items regarding demographic information about the participant and their family. The second section included items regarding decision-making, including the primary intervention decision-maker in the household, how confident the participant felt in making decisions about interventions (on a 5-point Likert-type scale ranging from 1 = not at all confident to 5 = very confident), and how important they considered different factors to be in decision-making (on a 5-point Likert-type scale ranging from 1 = very unimportant to 5 = very important; adapted from Carlon, Carter, & Stephenson, Reference Carlon, Carter and Stephenson2015).
The final section of the pretest questionnaire listed interventions for preschool-aged children with ASD that were available in Australia and was developed from several sources (Carter et al., Reference Carter, Roberts, Williams, Evans, Parmenter, Silove and Warren2011; Prior et al., Reference Prior, Roberts, Rodger, Williams, Dodd, Ridley and Sutherland2011; Raising Children Network, 2006–2014; Research Autism, 2006–2014). Parents were asked to indicate on Likert-type scales (a) their desire to use the intervention (1 = no desire to use, 2 = some desire to use, 3 = strong desire to use, 4 = currently using, with the additional option ‘have not heard of this’); and (b) their understanding of the level of research support (1 = no evidence, or negative evidence, 2 = weak research evidence, 3 = moderate research evidence, 4 = strong research evidence, with the additional option ‘unsure’). Parents were also asked whether they had ever looked for information about interventions for ASD on the Raising Children Network website or Research Autism website, and if so, how many hours they had spent looking at each of the websites.
The posttest questionnaire included items related to whether the parents completed all parts of the guided access DVD package, and their impressions of the usefulness of the guided access DVD and the websites. In addition, it included the repetition of items from sections two and three of the pretest questionnaire.
Procedure
Ethics approvals were obtained from the Macquarie University Faculty of Human Sciences Human Research Ethics Sub-Committee (reference no. 5201200602), the Aspect Research Approvals Committee (reference no. 1220), the Professional Practice Committee of Autism SA, and the STaR Research Committee.
Participants of a previous survey project who had expressed interest in participating in future research regarding intervention decision-making were sent recruitment notices for the present study (via email or post). Additionally, electronic and/or hard copy recruitment notices were distributed to parents of preschoolers with ASD via seven early intervention providers and autism-specific early learning and care centres in the Australian Capital Territory, New South Wales, Tasmania, Victoria, and Western Australia. Furthermore, all state- and territory-based autism associations in Australia were contacted and recruitment notices were distributed (via email, on autism association websites, and/or autism association Facebook pages). Twenty-two parents expressed interest in participating and were sent an information and consent form. Sixteen parents returned the consent form (providing written consent), but two withdrew prior to the commencement of the study (one because her child had started school and was therefore no longer eligible to participate).
The 14 participants were sent a copy of the pretest questionnaire and the CARS-2 (Schopler et al., Reference Schopler, Van Bourgondien, Wellman and Love2010). They completed these over the phone with the first author and were sent the guided access DVD package. The posttest questionnaire was administered over the phone to participants approximately three months later. Two participants were not contactable at the time of the posttest interview.
Results
Use of the Websites Prior to the Study
One participant estimated that they had looked for information about interventions for ASD on the Research Autism website for approximately 10 hours prior to involvement in the current study. Six parents stated that they had previously spent between 2 and 6 hours looking for information about interventions for ASD on the Raising Children Network website, and three parents estimated that they had spent 100 hours or more looking for information about interventions for ASD on the Raising Children Network website.
Usefulness of the Package
The participants provided feedback regarding the guided access DVD package overall, the guidelines for choosing interventions (adapted from Raising Children Network, 2009), and each of the websites. All of the parents reported that they had watched the DVD. They all indicated that they would recommend the guided access DVD package to other parents of children with ASD, and half of the parents added that they believed it would be helpful for parents whose children had recently been diagnosed with ASD. Eight parents indicated that it was very likely that they would consult the guidelines for choosing interventions before commencing an intervention in the future, two somewhat likely, one very unlikely, and one unsure. Eleven parents indicated that it was very likely that they would visit the Raising Children Network website before commencing an intervention in the future, and that they would recommend the website to other parents of preschool-aged children with ASD.
Two parents did not look at the Research Autism website. Seven parents indicated that it was very likely that they would visit it before commencing an intervention, and three that it was somewhat likely. All 10 parents who had visited the website indicated that they would recommend it to other parents of preschool-aged children with ASD, although three added that they would be more likely to recommend the Raising Children Network website and/or that they would only recommend this website to certain people, because they believed the Raising Children Network website was more accessible to parents.
Parent Confidence
The mean score increased from 3.8 in the pretest to 4.7 in the posttest. A Wilcoxon signed-rank test revealed that the difference between pretest and posttest scores was not statistically significant (z = –1.802, p = .072).
Importance of Factors in Decision-Making
As shown in Table 1, there was very little change in the importance placed on different factors. Those factors with the greatest change in the mean were hope for a cure (−0.91), advice from friends/relatives (−0.50), and the hope that it would work (−0.41). The mean (4.75), range (4–5), and standard deviation (0.45) for research evidence remained constant.
TABLE 1 Participant Ratings of Importance of Factors in Decision-Making at Pretest and Posttest
Parent Desire to Use, and Ratings of the Level of Research Support for, Interventions
Table 2 shows a summary of the participant ratings of the desire to use and understanding of the level of research support for the interventions asked about in the survey, at pretest and posttest, as well as a summary of change in the final columns. The interventions are presented in the first column, grouped by the study research rating. Those interventions for which six or more parents either had a strong desire to use or were currently using at pretest are shaded grey.
TABLE 2 Participant Ratings of Desire to Use, and Level of Research Support for, Interventions at Pretest and Posttest
Note. Grey shading indicates that six or more participants were either using the intervention or had a strong desire to use the intervention at pretest.
A general trend was for a pretest to posttest decrease in the number of parents stating that they had not heard of interventions and in the number of parents who were unsure about the level of research support for interventions.
It seems reasonable to expect that parents would be more likely to seek information about the interventions that they were either currently using or had a strong desire to use at pretest. The parents’ accuracy regarding the level of research support for the interventions (compared to the ratings supplied on the websites, illustrated through the ‘summary research rating’), however, did not improve when we examined only interventions that six or more of the participants were using or had a strong desire to use at pretest. For example, Social Stories, which had a study rating of moderate support (3), had a mean score of 3.6 for research support, with four participants unsure, which increased to 3.9 at posttest, with two participants changing their response from unsure to providing a rating. Similarly, three more participants provided a rating for visual schedules/picture schedules/visual strategies/visual supports at posttest, but the accuracy of the rating for this intervention with weak research support (study rating = 2) improved only slightly, with the mean score changing from 3.9 at pretest to 3.8 at posttest. There was very little change in the high mean research ratings given to occupational therapy and speech therapy at pretest. None of the participants changed their rating to ‘unsure’ even though these interventions were not rated on the Raising Children Network (2006–2014) website and were given the rating of ‘not applicable’ on the Research Autism (2006–2014) website because they incorporated a wide range of possible techniques, methods, and interventions.
It was of interest to determine if the research ratings provided by participants were related to their desire to use interventions rather than the actual level of research support for the interventions. Spearman correlation coefficients were therefore calculated to examine the relationships between the pretest desire to use interventions and pretest research ratings, and the posttest desire to use interventions and posttest research ratings, for each participant. One participant did not have any variance in the ratings supplied for the four interventions rated at pretest (this participant rated all of these interventions as highly effective); therefore, the pretest correlation coefficient for this participant could not be calculated. For the remaining participants, ratings were supplied at pretest for both the desire to use interventions and research support for these interventions for a mean of 16.2 interventions (range: 9–24, SD = 4.51). The mean of the correlation coefficients was .47 (range: –.03– .93, SD = 0.29), representing a moderate positive relationship. Ratings for both the desire to use interventions and research support for interventions at posttest were supplied for a mean of 18.8 interventions (range: 10–27, SD = 5.57). The mean of the correlation coefficients was .27 (range: –.44– .77, SD = 0.38), representing a small-to-moderate positive relationship.
Discussion
This pilot study provided an investigation of the effect of a DVD-based package providing guided access to reliable websites for parents of preschool-aged children with ASD. Overall, the parents’ views of the guided access DVD package were positive, with all of the parents stating that they would recommend the guided access DVD to other parents of preschoolers with ASD. Half of the parents added that they believed it would be particularly helpful to parents of newly diagnosed children. Parents have reported becoming overwhelmed with the information received after their child's diagnosis (Mulligan, MacCulloch, Good, & Nicholas, Reference Mulligan, MacCulloch, Good and Nicholas2012; Valentine, Reference Valentine2010), and the guided access DVD may provide some structure to parents in terms of how to assess the information received about interventions during this time. Most of the parents also stated that they would personally use and would recommend the use of the websites to other parents of preschoolers with ASD. Some responses indicated that the Raising Children Network (2006–2014) website appeared to be more accessible and user-friendly compared to the Research Autism (2006–2014) website. Reichow et al. (Reference Reichow, Halpern, Steinhoff, Letsinger, Naples and Volkmar2012), Sabo (Reference Sabo2008), and Sabo and Lorenzen (Reference Sabo and Lorenzen2008) reported that the high reading level of information presented on many autism-related websites may act as a barrier to parents of children with ASD accessing relevant information, which may be reflected in the parents’ impressions of the Research Autism (2006–2014) website in the present study.
The parents’ ratings of confidence in making decisions increased substantially from pretest to posttest, although this increase was not statistically significant, probably reflecting the size of the sample. There was also little change in the level of importance placed by parents on different factors in decision-making. It was predicted that the intervention may have increased the level of importance placed by parents on research evidence and decreased the level of importance placed on factors such as advice from others and emotional factors such as hope and intuition. The hope for a cure and advice from friends or relatives were the only factors with a change of 0.5 or more in the mean score. They both decreased in importance from pretest to posttest, which may be a reflection of the influence of the guidelines for choosing interventions (Raising Children Network, 2009) provided in the DVD. Conversely, the mean scores for both research evidence and intuition/gut feelings remained at a high level of 4.75 from pretest to posttest. It appears counterintuitive that parents who placed a high level of importance on research evidence would also place the same high level of importance on intuition. This finding, however, is consistent with findings presented in a previous study of parent reports of the importance of factors in decision-making (Carlon, Carter, & Stephenson, Reference Carlon, Carter and Stephenson2015).
In the present study, the parents were more likely to provide a rating of the level of research support for interventions at posttest, which was consistent with their reported increased confidence. However, the ratings provided were not necessarily consistent with the ratings supplied on the websites, indicating that the guided access DVD package did not appear to have an effect on the parents’ understanding of the level of research support for interventions in most cases. It should be noted that the DVD used in the current study provided parents with general advice, modelled on that provided in the Raising Children Network (2009) website, as well as guided instruction on the use of two reliable websites. Thus, parents were provided with considerably more guidance than those who may just access the websites independently. Noting this, and acknowledging that only tentative conclusions should be drawn from this pilot study, this finding does raise the question as to whether websites such as Raising Children Network (2006–2014), which provide information about the empirical support for different interventions, do actually have an impact on parents’ views about the efficacy of different interventions. Given the current preliminary findings, the impact of such websites on parents’ views and decision-making, both in the short-term and longitudinally, could be assessed systematically with a much larger sample in the future.
The ratings of research evidence appeared to be related to the parent's current use or desire to use the intervention (rather than the level of research support for the intervention). This relationship was confirmed by correlations between desire to use an intervention and parent research ratings. The relationship between the desire to use and research ratings was not as strong at posttest; this may have been due to parents discontinuing the use of interventions that they still believed to have strong research evidence. Some parents reported, for example, that they had discontinued the use of occupational therapy and autism-specific early intervention during the time between the pretest and posttest because their children had commenced school, but still rated these interventions as having strong research support.
Although it may have been expected that being informed about evidence-based practice and being provided with information about the efficacy of interventions (via the websites) would have influenced the participant's level of desire to use interventions, this did not appear to be the case. There did not appear to be a relationship between the ratings of desire to use interventions at posttest and the ratings of research support for interventions provided on the websites. Other factors, which may or may not be associated with good practice in early intervention, potentially had more influence on the parents’ desire to use interventions than research evidence.
A tendency to ignore information that may conflict with a person's original opinion on a given topic and to seek confirming information has been described as selective exposure (Hart et al., Reference Hart, Albarracín, Eagly, Brechan, Lindberg and Merrill2009), and is part of a psychological phenomenon known as confirmation bias (Nickerson, Reference Nickerson1998). Nickerson (Reference Nickerson1998) has noted that ‘if one were to attempt to identify a single problematic aspect of human reasoning that deserves attention above all others, the confirmation bias would have to be among the candidates for consideration’ (p. 175). Thus, participants in the present study may have given greater weight to information that confirmed their decisions regarding intervention use and disregarded conflicting information. Parents in the present study were all currently using interventions, and it is possible that their reasoning was motivated, tending to rationalise and justify past decisions. Motivated reasoning refers to the tendency to construe information in such a way that the individual is most likely to arrive at the desired conclusion (Kunda, Reference Kunda1990). In this case, parents may have concluded that those interventions that they were using or had a high level of desire to use were considered to be those with strong research support. This would explain the limited correspondence between their views on research evidence and the information on the websites. Furthermore, the difficulty in recruiting participants for the study might reflect a lack of interest in seeking further information once decisions have been made regarding interventions.
Decision-making research in naturalistic environments (Klein, Reference Klein2008; Meso, Troutt, & Rudnicka, Reference Meso, Troutt and Rudnicka2002) has provided evidence that expert decision-makers do not systematically and objectively weigh up all available options. Experts tend to use pattern matching to identify when they have made similar decisions in the past (Klein, Reference Klein2008; Meso et al., Reference Meso, Troutt and Rudnicka2002). Parents may attempt a similar process but do not necessarily have adequate skills or background to evaluate situations in the same way that experts do when making decisions; therefore, further support may be needed. Reichow et al. (Reference Reichow, Halpern, Steinhoff, Letsinger, Naples and Volkmar2012) have recommended that website information should only supplement professional advice, but there is evidence that some Australian parents feel inadequately supported in decision-making (Carlon, Stephenson, & Carter, Reference Carlon, Stephenson and Carter2015; Grant et al., Reference Grant, Rodger and Hoffman2016).
Considering the results of the current pilot study, it could be argued that a greater emphasis might be better placed on ensuring that professionals are better equipped to offer parents evidence-based advice on autism interventions based on current research and including recognition of limitations in this knowledge base. Given possible professional and commercial conflicts of interest, consensus guidelines would probably need to be developed and adopted by relevant professional bodies. It is possible that improving the quality and specificity of information for professionals will have a greater impact on parent decision-making than provision of website-based information, and this would be an appropriate area for future research.
Limitations
Limitations of the present study should be acknowledged. The present study was a small-scale pilot, and as such used a pretest/posttest design. Despite efforts to recruit participants for the study from all states and territories in Australia, only 14 parents participated and two of these did not complete the posttest interviews. Further, the sample was well educated and probably highly motivated. The reader should therefore use requisite caution in interpreting the current research.
In the recruitment process, two different service providers suggested to the researchers that parents may not wish to be involved in the present study because they had already made decisions regarding interventions to employ. It is also possible that the guided website access package may have different impacts on parents who had not yet committed to a specific intervention, and this could be a direction for future research.
Data regarding the frequency and duration of the viewing of the websites during the intervention was not collected from participants. However, in the present study even those participants who reported viewing the Raising Children Network website (2006–2014) for more than 100 hours prior to the study did not provide accurate ratings of research evidence for interventions at pretest nor at posttest after the guided access to the websites. Whether longer and/or more frequent guided exposure to the websites would have a greater impact on parental beliefs or decisions may be explored in future research with a larger sample. Future research could also include the trial of different media to deliver guided website access to parents, such as the use of a YouTube clip or similar video embedded on a website as opposed to a physical DVD.
Conclusion
Parents in the present pilot study had increased confidence in making decisions after using the guided access DVD package. However, the guided access DVD package did not appear to influence the factors that parents considered important in decision-making, their understanding of the level of research support for interventions, nor their desire to use different interventions.
Financial Support
This research received no specific grant from any funding agency, commercial, or not-for-profit sectors.
Conflicts of Interest
None.
