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Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process

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Title: Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process
Language: English
Authors: Rachel Haine-Schlagel (ORCID 0000-0001-9123-3704), Christina Corsello, Barbara Caplan, Hilary Gould, Lauren Brookman-Frazee
Source: Journal of Autism and Developmental Disorders. 2024 54(3):1221-1230.
Availability: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
Peer Reviewed: Y
Page Count: 10
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Descriptors: Autism Spectrum Disorders, Clinical Diagnosis, Diagnostic Tests, Parent Attitudes, Program Effectiveness, Barriers, Access to Education
DOI: 10.1007/s10803-022-05601-3
ISSN: 0162-3257
1573-3432
Abstract: Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (1) developed and implemented a toolkit to tailor ASD evaluation feedback to families' needs, and (2) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit development. Seven providers participated in pilot training and implementation. Provider and caregiver toolkit perceptions were assessed using interviews, surveys, and a fidelity checklist. Toolkit strategies reflect focus group themes. Provider and caregiver ratings suggest the initial feasibility, acceptability, and utility of the toolkit. This toolkit may be feasible to implement in community settings and may increase caregiver satisfaction, though further refinements are needed to support service connection.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1415141
Database: ERIC
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  Value: <anid>AN0175829981;aut01mar.24;2024Mar06.06:49;v2.2.500</anid> <title id="AN0175829981-1">Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process </title> <p>Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (<reflink idref="bib1" id="ref1">1</reflink>) developed and implemented a toolkit to tailor ASD evaluation feedback to families' needs, and (<reflink idref="bib2" id="ref2">2</reflink>) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit development. Seven providers participated in pilot training and implementation. Provider and caregiver toolkit perceptions were assessed using interviews, surveys, and a fidelity checklist. Toolkit strategies reflect focus group themes. Provider and caregiver ratings suggest the initial feasibility, acceptability, and utility of the toolkit. This toolkit may be feasible to implement in community settings and may increase caregiver satisfaction, though further refinements are needed to support service connection.</p> <p>Keywords: ASD; Diagnostic evaluation; Caregivers; Services; Linkage</p> <p>Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s10803-022-05601-3.</p> <hd id="AN0175829981-2">Introduction</hd> <p>Children with autism spectrum disorder (ASD) are a growing population with complex service needs estimated to cost $268 billion annually in the U.S. (Leigh & Du, [<reflink idref="bib20" id="ref3">20</reflink>]), a cost that can be dramatically reduced through early diagnosis and intervention (Jacobson et al., [<reflink idref="bib16" id="ref4">16</reflink>]). Early intervention is critical to promote positive developmental outcomes for children with ASD (Dawson et al., [<reflink idref="bib12" id="ref5">12</reflink>]; Schertz et al., [<reflink idref="bib32" id="ref6">32</reflink>]; Zwaigenbaum et al., [<reflink idref="bib40" id="ref7">40</reflink>]) as well as increase parent or caregiver (hereafter referred to as parent) sense of competence and empowerment (Stahmer et al., [<reflink idref="bib36" id="ref8">36</reflink>]). Guidelines indicate that intervention should be initiated as soon as a child receives a diagnosis or is identified as having a high likelihood of ASD (Dawson & Burner, [<reflink idref="bib11" id="ref9">11</reflink>]). However, data suggest that autistic children often do not receive recommended services following diagnosis, such as occupational therapy, physical therapy, speech therapy, and behavioral interventions (Shivers et al., [<reflink idref="bib34" id="ref10">34</reflink>]).</p> <p>Parent engagement is particularly critical in parent‐mediated early interventions (e.g., Oono et al., [<reflink idref="bib27" id="ref11">27</reflink>]; Schreibman et al., [<reflink idref="bib33" id="ref12">33</reflink>]; Stahmer et al., [<reflink idref="bib35" id="ref13">35</reflink>]), yet begins at the time of seeking and receiving a diagnosis. Parents report challenges accessing recommended services following a diagnostic evaluation for ASD, including not understanding services or how to access them (Krauss et al., [<reflink idref="bib18" id="ref14">18</reflink>]; Rouse et al., [<reflink idref="bib31" id="ref15">31</reflink>]). Parent characteristics, such as beliefs and perceptions around ASD, may contribute to a child's service use trajectory following diagnosis (Mire et al., [<reflink idref="bib23" id="ref16">23</reflink>]). Training providers to tailor ASD evaluation feedback in light of family characteristics and beliefs may optimize parents' decision making about services following diagnosis (Zuckerman et al., [<reflink idref="bib39" id="ref17">39</reflink>]). For instance, parents may experience strong emotional reactions or reluctance following a child's initial ASD diagnosis (Boshoff et al., [<reflink idref="bib6" id="ref18">6</reflink>]; Twombly et al., [<reflink idref="bib38" id="ref19">38</reflink>]), which can influence readiness for service engagement (Azad et al., [<reflink idref="bib3" id="ref20">3</reflink>]; Cunningham et al., [<reflink idref="bib10" id="ref21">10</reflink>]).</p> <p>Thus, while tools to aid providers in the delivery of diagnostic feedback are particularly relevant in ASD, very few programs have been tested. One pilot study has evaluated a training program specifically designed to improve delivering an ASD diagnosis to families (Kawamura et al., [<reflink idref="bib17" id="ref22">17</reflink>]). The training program consisted of pediatric residents and interns working in groups to practice three case simulations. Qualitative results emphasized trainees' increased attentiveness and responsiveness to parents following training, though a need to include more training on coaching parents through next steps was identified.</p> <p>Tools for tailoring the ASD diagnostic feedback process may be advanced through: (a) formative assessment of family barriers and needs, and (b) collaborative development with community providers. The Exploration, Preparation, Implementation, Sustainment (EPIS) framework provides a guiding framework to pursue such advancements, by identifying key factors and processes that facilitate the implementation of innovative clinical tools (Aarons et al., [<reflink idref="bib2" id="ref23">2</reflink>]; Moullin et al., [<reflink idref="bib25" id="ref24">25</reflink>]). The current study drew from the EPIS framework (Moullin et al., [<reflink idref="bib25" id="ref25">25</reflink>]), research on family service engagement and diagnostic feedback delivery (e.g., Becker et al., [<reflink idref="bib4" id="ref26">4</reflink>]; Cunningham et al., [<reflink idref="bib10" id="ref27">10</reflink>]; Kawamura et al., [<reflink idref="bib17" id="ref28">17</reflink>]), and community participatory research methodology (Brookman-Frazee et al., [<reflink idref="bib8" id="ref29">8</reflink>]) to develop SPIRIT, named for its six steps for the responsive delivery of ASD evaluation feedback: Start off on the right foot, Pause to plan, Individualize diagnostic communication, Readjust plan, Individualize recommendations communication, and Thank the parent (see Table 1). SPIRIT targets the Preparation and Implementation phases of EPIS, attends to both innovation and bridging factors (e.g., co-development with community partners), and emphasizes fit with the inner context (organization, provider). SPIRIT steps also map onto domains of the REACH (Relationship, Expectancy, Attendance, Clarity, and Homework) child mental health service engagement framework (Becker et al., [<reflink idref="bib4" id="ref30">4</reflink>]). For example, "Start off on the right foot" maps onto the Relationship domain, while "Individualize diagnostic communication" maps onto the Clarity domain.</p> <p>Table 1 SPIRIT strategies within each step</p> <p> <ephtml> <table frame="hsides" rules="groups"><tbody><tr><td align="left"><p>Start off on the right foot</p></td></tr><tr><td align="left"><p> Consider cultural responsiveness of evaluation</p></td></tr><tr><td align="left"><p> Assess parent purpose for obtaining evaluation</p></td></tr><tr><td align="left"><p> Assess and address previous negative experiences</p></td></tr><tr><td align="left"><p> Promote parent efficacy</p></td></tr><tr><td align="left"><p> Encourage collaboration and question asking</p></td></tr><tr><td align="left"><p>Pause to Plan</p></td></tr><tr><td align="left"><p> Consider parent profile(s) and evaluation goal(s)</p></td></tr><tr><td align="left"><p> Create plan to reach evaluation goal(s)</p></td></tr><tr><td align="left"><p>Individualize Diagnostic Communication</p></td></tr><tr><td align="left"><p> Enlist parent's input</p></td></tr><tr><td align="left"><p> Review child's strengths</p></td></tr><tr><td align="left"><p> Review child's current functioning</p></td></tr><tr><td align="left"><p> Promote discussion</p></td></tr><tr><td align="left"><p> Individualize based on parent profile(s)</p></td></tr><tr><td align="left"><p>Readjust The Plan</p></td></tr><tr><td align="left"><p> Consider parent profile and evaluation goal(s) again</p></td></tr><tr><td align="left"><p> Consider individual and unique needs for recommendations</p></td></tr><tr><td align="left"><p> Consider time left for communicating recommendations</p></td></tr><tr><td align="left"><p> Adjust plan to reach evaluation goal(s)</p></td></tr><tr><td align="left"><p>Individualize Recommendation Communication</p></td></tr><tr><td align="left"><p> Emphasize methods for obtaining copy of report</p></td></tr><tr><td align="left"><p> Incorporate parent's concerns</p></td></tr><tr><td align="left"><p> Review Service Path Tool</p></td></tr><tr><td align="left"><p> Provide completed enhanced Patient Instructions handout</p></td></tr><tr><td align="left"><p> Individualize based on parent profile(s)</p></td></tr><tr><td align="left"><p>Thank The Parent</p></td></tr><tr><td align="left"><p> Thank parent for being partner in evaluation process</p></td></tr></tbody></table> </ephtml> </p> <p>The toolkit is designed to support families in processing the ASD diagnosis and service recommendations to enhance follow-through. This study aimed to: (<reflink idref="bib1" id="ref31">1</reflink>) identify family needs and challenges during the ASD evaluation, and collaboratively develop a clinical toolkit to address these needs (Phase 1); and (<reflink idref="bib2" id="ref32">2</reflink>) pilot the SPIRIT training and delivery model and assess provider and parent perceptions of feasibility, acceptability, appropriateness, and utility (Phase 2).</p> <hd id="AN0175829981-3">Methods</hd> <p></p> <hd id="AN0175829981-4">Study Overview</hd> <p>This study was completed as part of the 2016–2017 annual Quality Assurance and Performance Improvement (QAPI) project conducted by a developmental evaluation clinic at a large, university-affiliated children's hospital in Southern California. In line with community participatory research models (Brookman-Frazee et al., [<reflink idref="bib8" id="ref33">8</reflink>]), the QAPI team chose to target the diagnostic evaluation feedback process given provider-identified challenges with engaging parents and communicating recommendations, and contacted the research team to collaborate on an innovative clinical toolkit to address this need. Diagnostic evaluations at the clinic included a parent interview, gold standard autism assessment measures (Autism Diagnostic Observation Schedule, 2nd Edition: ADOS-2; Lord, et al., [<reflink idref="bib21" id="ref34">21</reflink>]), as well as validated and standardized assessments of developmental/cognitive functioning and adaptive behavior. Parents were present and actively participated throughout their child's evaluation.</p> <p>Development and testing of the toolkit occurred in two phases. <emph>Phase 1</emph> involved provider focus groups and the development of the toolkit. <emph>Phase 2</emph> involved pilot testing of the toolkit. For Phase 1, the research team recruited and implemented provider focus groups. The QAPI team lead (second author) then co-created the tools with the first author, and the QAPI team gave feedback on an initial version of the tools. For Phase 2, the research team and QAPI team lead jointly provided toolkit training to Phase 2 provider participants. The QAPI team collected parent data (i.e., recruited and interviewed family participants) and provided de-identified data to the research team for analysis. The research team collected provider fidelity data and conducted provider interviews. All activities were conducted with IRB approval. Participants provided informed consent and received modest compensation for research activities.</p> <hd id="AN0175829981-5">Participants</hd> <p>All psychologists employed in the participating hospital's developmental evaluation and autism-specific clinics were invited to participate in Phase 1 focus groups and all 11 participated. All psychologists were then invited to participate in the Phase 2 pilot study and seven participated. Most providers were female (91% Phase 1; 100% Phase 2), and non-Hispanic white (82% Phase 1; 86% Phase 2). Two of the 11 providers were bilingual in English and Spanish and conducted evaluations in both languages. When the provider did not speak the family's primary language, interpreters were used (primarily in person, with rare phone/video-based interpreting). Sixteen parents were invited to participate in Phase 2 interviews if their child: (a) was under the age of 5 years, (b) participated in an evaluation at the clinic one to three months prior to the interview, and (c) received an ASD diagnosis. While no demographic data are available on the parents, their children who received evaluations from participating providers were predominantly male (90%) with a mean age of 3.4 years (SD = 1.3; range 2–7 years), half (50.0%) were Hispanic, and 43.8% had publicly funded health insurance, an indicator of low socio-economic status. A total of 18.8% of parents were interviewed in Spanish.</p> <hd id="AN0175829981-6">Procedures</hd> <p></p> <hd id="AN0175829981-7">Phase 1</hd> <p>Three 60-min recorded focus groups were conducted with providers to assess their perspectives on challenges parents faced in following through with recommendations. Following the focus groups, the toolkit was then collaboratively developed by the research and QAPI teams, drawing on: (<reflink idref="bib1" id="ref35">1</reflink>) challenges identified in focus groups; (<reflink idref="bib2" id="ref36">2</reflink>) empirical literature regarding sharing diagnostic results (e.g., Buckman, [<reflink idref="bib9" id="ref37">9</reflink>]); (<reflink idref="bib3" id="ref38">3</reflink>) an evidence-based parent engagement toolkit for child mental health services (Parent And Parent Active Participation Toolkit; PACT; Haine-Schlagel et al., [<reflink idref="bib15" id="ref39">15</reflink>]); and (<reflink idref="bib4" id="ref40">4</reflink>) the clinical experience of the QAPI and research teams. The co-creation process consisted of iterative drafts of materials circulated among the team with ongoing discussion and refinements.</p> <hd id="AN0175829981-8">Phase 2</hd> <p>Participating providers attended a two-hour, in person toolkit training. Providers then submitted toolkit fidelity checklists following their ASD evaluations with children under the age of 5 years for two months post-training. Additionally, providers completed an electronic survey at two months post-training, and a recorded 15–20 min phone interview 10 months post-training. Parents completed a 15-min interview 1–3 months following their child's ASD evaluation, which occurred prior to (<emph>n</emph> = 10) or following (<emph>n</emph> = 6) provider training in SPIRIT.</p> <hd id="AN0175829981-9">Measures</hd> <p></p> <hd id="AN0175829981-10">Phase 1</hd> <p>The focus group guide, developed for this study, included open-ended questions and specific probes regarding perceived challenges parents experience following through with evaluation recommendations, as well as perceptions of initial drafts of proposed toolkit elements.</p> <hd id="AN0175829981-11">Phase 2</hd> <p>Several measures were utilized for Phase 2.</p> <p> <emph>Provider feedback survey</emph> A 30-item survey was developed to measure provider perceptions of implementation outcomes (e.g., feasibility, acceptability, appropriateness, utility) according to Proctor et al.'s ([<reflink idref="bib30" id="ref41">30</reflink>]) framework. Reponses were reported on a Likert scale from <emph>Strongly Disagree</emph> (<reflink idref="bib1" id="ref42">1</reflink>) to <emph>Strongly Agree</emph> (<reflink idref="bib5" id="ref43">5</reflink>) and included an area for comments. Subscales included toolkit feasibility (α = 0.89), acceptability (α = 0.77), and appropriateness (α = 0.76), as well as training utility (α = 0.77), and training acceptability (α = 0.79).</p> <p> <emph>Fidelity checklist</emph> Providers were asked to complete a 22-item self-rated fidelity checklist to indicate whether they had utilized each toolkit strategy (yes/no), with an area for comments (see Appendix for a copy of the checklist).</p> <p> <emph>Provider interview</emph> A semi-structured interview guide was developed to complement and expand on results from the provider survey (e.g., how providers used information gained during the toolkit training, feedback regarding specific toolkit elements, efforts at continued toolkit use).</p> <p> <emph>Parent interview</emph> A structured interview guide including both open-ended and close-ended questions was developed to assess family initiation of services, parents' satisfaction with the evaluation feedback, perceptions of the provider's prioritization of recommendations, and ability to access the evaluation report. Family service initiation was calculated as the proportion of total recommendation services initiated. Recommended services included both ASD-related services and services sought to address challenges that often co-occur with ASD.</p> <hd id="AN0175829981-12">Data Analysis</hd> <p>Mixed quantitative and qualitative methods were examined for the purposes of complementarity and expansion (Palinkas et al., [<reflink idref="bib29" id="ref44">29</reflink>]). For quantitative data, SPSS was used to calculate frequencies of provider responses and run analysis of covariance tests [with Glass delta (Δ) effect size; Lakens, [<reflink idref="bib19" id="ref45">19</reflink>]] to compare responses for parents who received an evaluation before versus after toolkit training. Phase 1 provider focus group and Phase 2 interview data were analyzed using elements of the Rapid Assessment Procedure (RAP; Beebe, [<reflink idref="bib5" id="ref46">5</reflink>]; Palinkas & Zatzick, [<reflink idref="bib28" id="ref47">28</reflink>]). First, an interview summary template was created from the main topics or domains in the interview guide. Two coders independently reviewed each recording and completed a summary template. The templates were compared, and any inconsistencies were discussed with a third member of the research team to achieve consensus. Consensus templates were entered into a matrix to allow results to be compared to generate feedback themes. Resulting themes were then validated by the QAPI team lead (second author). This method has yielded reliable results when compared to more in-depth qualitative coding (Gale et al., [<reflink idref="bib13" id="ref48">13</reflink>]). Provider and parent interview open-ended responses were coded using an open-coding process whereby two research staff developed a set of codes based on the responses (Haine-Schlagel et al., [<reflink idref="bib14" id="ref49">14</reflink>]) and then independently coded each recording and met to achieve consensus on coding decisions. The coders then compiled a master coding matrix that included themes across each focus group/interview's responses. Code disagreements were discussed, and a final disposition was assigned. Coding validity was then reviewed by the first and second authors.</p> <hd id="AN0175829981-13">Results</hd> <p></p> <hd id="AN0175829981-14">Phase 1</hd> <p>Two main themes were extracted from providers regarding challenges parents face in following through with evaluation recommendations (see Table 2). The first theme reflected challenges parents may individually experience, including: (<reflink idref="bib1" id="ref50">1</reflink>) grief and inability to process service recommendations following the diagnosis; (<reflink idref="bib2" id="ref51">2</reflink>) difficulty navigating a complex ASD service system; (<reflink idref="bib3" id="ref52">3</reflink>) lack of knowledge about ASD and ASD services; and (<reflink idref="bib4" id="ref53">4</reflink>) resource limitations. The second theme related to challenges with the evaluation process itself, including: (<reflink idref="bib1" id="ref54">1</reflink>) time/funding constraints (e.g., clinic or insurance requirements to conduct the clinical assessment and feedback in one session, thus hurrying the feedback process); (<reflink idref="bib2" id="ref55">2</reflink>) the lack of resources to facilitate linkage to recommended services; (<reflink idref="bib3" id="ref56">3</reflink>) structural challenges in accessing the evaluation report; (<reflink idref="bib4" id="ref57">4</reflink>) variability in providers' skill in clearly communicating recommendations to parents.</p> <p>Table 2 SPIRIT tools description and both phase 1 and phase 2 provider qualitative feedback themes</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>SPIRIT tool</p></th><th align="left"><p>Description</p></th><th align="left"><p>SPIRIT Step(s) each tool supports</p></th><th align="left"><p>Challenge(s) Addressed<sup>a</sup></p></th><th align="left"><p>How used<sup>b</sup></p></th></tr></thead><tbody><tr><td align="left"><p>SPIRIT fidelity checklist</p></td><td align="left"><p>This checklist included a set of 22 strategies organized under the 6 SPIRIT steps<sup>c</sup></p></td><td align="left"><p>All steps</p></td><td align="left"><p>Parent grief and inability to "hear" anything after diagnosis is given</p><p>Parent lack of knowledge</p><p>Parent difficulty processing recommendations</p><p>Need for care coordination</p></td><td align="left"><p>No consistent reports of sustained use</p></td></tr><tr><td align="left"><p>Parent profiles cheat sheet & guidelines</p></td><td align="left"><p>Organized into six emotional profiles<sup>d</sup>; each profile includes characteristics of the profile, specific tips for delivering the diagnosis and recommendations, and the overall evaluation goal</p></td><td align="left"><p>All steps</p></td><td align="left"><p>Parent grief and inability to "hear" anything after diagnosis is given</p></td><td align="left"><p>Used as a reference tool for providers</p></td></tr><tr><td align="left"><p>Service path tool</p></td><td align="left"><p>Visual path of the separate health plan and public/community service systems; provider can indicate K (keep doing), N (do now), or L (consider for later) for each recommended service</p></td><td align="left"><p><bold><underline>I</underline></bold>ndividualize recommendations</p><p><bold><underline>T</underline></bold>hank parent</p></td><td align="left"><p>Parent lack of knowledge</p><p>Parent difficulty processing recommendations</p><p>Need for care coordination</p></td><td align="left"><p>Primary use as a reference tool for providers and to share with colleagues</p><p>Secondary use is with families directly (not always indicated)</p></td></tr><tr><td align="left"><p>Enhanced patient instructions</p></td><td align="left"><p>The patient instructions were enhanced to: 1) match the Service Path Tool organization; 2) provide more detail on how to access the evaluation report; and 3) include definitions for each recommended service</p></td><td align="left"><p><bold><underline>I</underline></bold>ndividualize recommendations</p><p><bold><underline>T</underline></bold>hank parent</p></td><td align="left"><p>Parent lack of knowledge</p></td><td align="left"><p>Informed a future quality improvement project for another service within the department</p><p>Serves as reference tool for providers</p></td></tr></tbody></table> </ephtml> </p> <p> <sups>a</sups>Based on Phase 1 provider focus group results <sups>b</sups>Based on Phase 2 provider follow-up interviews <sups>c</sups>The six SPIRIT steps include: (<reflink idref="bib1" id="ref58">1</reflink>) <bold><uline>S</uline></bold>tart off on the right foot, (<reflink idref="bib2" id="ref59">2</reflink>) <bold><uline>P</uline></bold>ause to plan, (<reflink idref="bib3" id="ref60">3</reflink>) <bold><uline>I</uline></bold>ndividualize diagnosis, (<reflink idref="bib4" id="ref61">4</reflink>) <bold><uline>R</uline></bold>eadjust plan, (<reflink idref="bib5" id="ref62">5</reflink>) <bold><uline>I</uline></bold>ndividualize recommendations, (<reflink idref="bib6" id="ref63">6</reflink>) <bold><uline>T</uline></bold>hank parent) <sups>d</sups>Emotional profiles within the Parent Profile Cheat Sheet include: Sad, Overwhelmed, Zealous/Inquisitive, Reluctant, Distrustful, Relieved and Ready. See the Appendix for examples of each SPIRIT tool</p> <p>Considering these findings, the research and QAPI teams collaborated to develop the SPIRIT toolkit (see Table 1). Several resources were developed to this end (see Appendix for exemplary materials): (<reflink idref="bib1" id="ref64">1</reflink>) a Parent Profile Cheat Sheet that suggests feedback delivery strategies based on a parent's emotional profile; (<reflink idref="bib2" id="ref65">2</reflink>) a Service Path Tool to help contextualize recommendations for parents; (<reflink idref="bib3" id="ref66">3</reflink>) Enhanced Patient Instructions highlighting next steps; and (<reflink idref="bib4" id="ref67">4</reflink>) a SPIRIT Fidelity Checklist. A two-hour training was also developed that included a didactic presentation, worksheets, small group activities, and training tips were sent via email weekly for eight weeks.</p> <hd id="AN0175829981-15">Phase 2</hd> <p></p> <hd id="AN0175829981-16">Provider Perceptions and Fidelity</hd> <p>Providers rated the SPIRIT toolkit to have a moderate to high degree of feasibility, acceptability, appropriateness, and utility (see Table 3). Themes from open-ended survey responses and qualitative interviews (see Tables 2 and 3) revealed that providers: (a) found the Parent Profile Cheat Sheet to be most useful, (b) found the Service Path Tool and Enhanced Patient Instructions to be useful as provider resources but needed revisions to be more appropriate for parents, and (c) planned to use SPIRIT in the future. Providers also indicated sharing SPIRIT materials with colleagues and developing a subsequent QAPI project modeled after SPIRIT. Providers reported using 11 of the 22 SPIRIT strategies 100% of the time. Strategies utilized with lowest frequency were reviewing the Service Path Tool (58%) and providing Enhanced Patient Instructions (63%). Providers indicated challenges using certain tools due to parent/provider factors (e.g., provider not speaking parents' primary language, parent stress) and tool characteristics (e.g., length/complexity, inability to edit/tailor).</p> <p>Table 3 Provider feedback on implementation outcomes</p> <p> <ephtml> <table frame="hsides" rules="groups"><thead><tr><th align="left"><p>Outcome</p></th><th align="left"><p>Provider feedback survey – Close-Ended Questions</p></th><th align="left"><p>Provider feedback survey – Open-Ended response themes</p></th><th align="left"><p>Provider Follow-up interview exemplary quotes</p></th></tr></thead><tbody><tr><td align="left"><p>Toolkit feasibility</p></td><td align="left"><p>Toolkit is feasible to use in practice: composite M = 4.21; SD = 0.57; 6 out of 7 agreed</p><p>Specific barriers: (1) Heavy workload at agency: M = 4.00; SD = 1.00; 4 out of 7 agreed; and (2) Structure of service delivery: M = 3.57; SD = 1.27; 4 out of 7 agreed</p><p>Specific facilitators: (1) Reasonable amount of time required for training: M = 3.86; SD = 1.46; 5 out of 7 agreed; and (2) Leadership support: M = 3.71; SD = 1.38; 5 out of 7 agreed</p></td><td align="left"><p>–</p></td><td align="left"><p>"...I found it [<italic>Service Path Tool</italic>], I didn't find it to be very easy for families. So many things weren't checked off that I felt like it was hard for them to follow it."</p></td></tr><tr><td align="left"><p>Toolkit Utility/Acceptability</p></td><td align="left"><p>Toolkit utility to encourage tailoring of evaluation feedback: composite M = 3.89; SD = 0.48; 4 out of 7 agreed</p><p>Toolkit utility to help parents be ready to act on revaluation recommendations: M = 4.14; SD = 0.90; 5 out of 7 agreed</p><p>Perceived acceptability of the toolkit: composite M = 4.36; SD = 0.56; 6 out of 7 agreed</p></td><td align="left"><p>Parent profiles and handouts were the most useful elements of the toolkit</p><p>A need to revise patient instructions further to allow for ease of use and individualized for each family, as well as a Spanish version</p></td><td align="left"><p>"...I use [<italic>the</italic>] Parent Profile Cheat Sheet taped up in the office on the inside of a cupboard door to remind myself of, you know, families that are struggling and how to approach that. I've found that extremely useful."</p><p>"I continue to use it [<italic>Service Path Tool</italic>]; not as often as initially, but I continue to use it when explaining the different um just agencies and services for families that need the visual, a road map."</p></td></tr><tr><td align="left"><p>Toolkit appropriateness</p></td><td align="left"><p>Perceived appropriateness of the toolkit for use in their practice setting: composite M = 4.50; SD = 0.50; 6 out of 7 agreed</p><p>Perceived appropriateness of the toolkit for use with their broader patient population: M = 4.29; SD = 4.90; 7 out of 7 agreed</p></td><td align="left"><p>–</p></td><td align="left"><p>"...but I found that using it [<italic>Service Path Tool</italic>] was again kind of unwieldy and the parents that I did try to use it with I felt like they were overwhelmed by everything that's on it and they had so many questions about, 'well do I need this?' and even though I had checked off things or highlighted certain things there's so much on there and I think it just takes so long to try to explain what they needed or didn't need..."</p></td></tr><tr><td align="left"><p>Toolkit sustainment</p></td><td align="left"><p>Planned sustained use with new clients: M = 4.43; SD = 0.54; 7 out of 7 agreed</p></td><td align="left"><p>–</p></td><td align="left"><p>"...hopefully we are going to be hiring new staff and um I hope we can think of ways to continue including the spirit approach in our feedback because I do think it is really important and I was glad to be a part of it."</p></td></tr><tr><td align="left"><p>Training Utility/Acceptability</p></td><td align="left"><p>Utility of the training: composite M = 3.81; SD = 0.57; 3 out of 7 agreed</p><p>Perceived acceptability of the training: composite M = 4.70; SD = 0.39; 7 out of 7 agreed</p><p>In-person training was the most useful part of the training protocol (M = 4.71; SD = 0.49; 7 out of 7 agreed) followed by the written materials (M = 4.57; SD = 0.54; 7 out of 7 agreed) and then the weekly email tips (M = 3.71; SD = 1.11; 4 out of 7 agreed)</p></td><td align="left"><p>Training could be improved through more case examples and interactive practice</p><p>Most helpful parts of the training included handouts, the organization of information, and opportunities for group discussion. To improve utility, suggestions included adding case vignettes</p></td><td align="left"><p>"The training itself felt useful – kind of a reminder of the things that are important and I do continue to use, you know, like the different SPIRIT strategies but I have to say I was doing those things before and I don't think they would be new for most psychologists who have been practicing for a while."</p></td></tr></tbody></table> </ephtml> </p> <hd id="AN0175829981-17">Parent Perceptions</hd> <p>As shown in Fig. 1, parents who received a diagnostic evaluation after SPIRIT training reported greater provider prioritization of recommendations and clarity of guidelines for obtaining the evaluation report than those who received an evaluation prior to SPIRIT training. Parents also reported higher evaluation feedback satisfaction ratings when their provider had received SPIRIT training [pre-training M = 4.4 (SD = 0.7); post-training M = 5.0 (SD = 0.0); range 1–5; (Δ = 0.77)]. There were no group differences in obtaining the report, perceived confidence in next steps, and the proportion of recommendations.</p> <p>Graph: Fig. 1Parent perceptions of evaluation feedback before and after provider SPIRIT training. Ratings on a three-point scale: 0 (Disagree), 1 (Somewhat Agree), or 2 (Very Much Agree); Before SPIRIT n = 10; After SPIRIT n = 6; Glass delta (Δ) effect size (Lakens, [<reflink idref="bib19" id="ref68">19</reflink>]) for comparisons were as follows: prioritized recommendations Δ = 0.93, received guidelines for obtaining the report Δ = 0.91, obtained the report Δ = 0.27, confidence in next steps Δ = 0.22</p> <p>Themes extracted from the parent interviews conducted prior to SPIRIT include: (<reflink idref="bib1" id="ref69">1</reflink>) difficulties obtaining the report (e.g., "I had to call to get additional instructions on how to obtain it from [the electronic medical record]. I didn't know I had to put in a request first-I kept looking for the report but it wasn't there."); and (<reflink idref="bib2" id="ref70">2</reflink>) the need for additional support in obtaining services (e.g., "[I] want more help getting ABA.")<emph>.</emph> Only one parent mentioned these challenges following SPIRIT training (e.g., "A follow up appointment to review the report after it was written and reviewed [would be helpful]."). Both parent groups reported challenges initiating services related to connecting with the primary local disability services agency.</p> <hd id="AN0175829981-18">Discussion</hd> <p>This study developed and pilot tested SPIRIT, a toolkit to assist providers in tailoring ASD evaluation feedback to meet parents' needs and promote service recommendation initiation. The first objective was to identify family needs and challenges during the ASD evaluation, and collaboratively develop a clinical toolkit to address these needs. Two primary themes emerged regarding perceived challenges families face in initiating recommended services that informed the toolkit: (<reflink idref="bib1" id="ref71">1</reflink>) challenges parents may individually experience; and (<reflink idref="bib2" id="ref72">2</reflink>) challenges with the evaluation process itself. The second objective was to pilot the SPIRIT training and delivery model and assess provider and parent perceptions of feasibility, acceptability, appropriateness, and utility. SPIRIT was rated to be feasible, acceptable, appropriate, and useful to providers (with some noted challenges) and preliminarily associated with increased parent-reported satisfaction and provider clarity in communicating recommendations and instructions for accessing the report. Overall, these results are promising, as feasibility, acceptability, appropriateness, and utility are key factors that facilitate real-world implementation of clinical tools (Proctor et al., [<reflink idref="bib30" id="ref73">30</reflink>]). Given that tailoring the feedback process is important to optimize decision making following a diagnosis (Zuckerman et al., [<reflink idref="bib39" id="ref74">39</reflink>]; Zwingmann et al., [<reflink idref="bib41" id="ref75">41</reflink>]) and that very few methods for tailoring ASD evaluation feedback are available, further refinement and uptake of SPIRIT in community settings may be highly impactful.</p> <p>Specifically, findings suggest SPIRIT's utility in addressing parent emotional readiness, a key challenge to child service initiation (Cunningham et al., [<reflink idref="bib10" id="ref76">10</reflink>]). Providers rated SPIRIT resources aimed at supporting parents' emotional readiness (e.g., Parent Profile Cheat Sheet) to have the highest utility. In turn, parent satisfaction and ratings of provider communication were higher following, as compared to before, provider SPIRIT training. However, the lack of differences found in families' service initiation suggests that delivery of SPIRIT alone (as currently designed) may not be sufficient in addressing the many barriers families face in initiating services. For example, parents across both groups indicated difficulties connecting with developmental disability services. Family navigation models, which involve a case manager providing direct support to overcome logistical barriers related to obtaining an ASD diagnosis and treatment, show promise to increase linkage to services (Broder-Fingert et al., [<reflink idref="bib7" id="ref77">7</reflink>]), and may be an important complement to SPIRIT. In turn, SPIRIT may address identified barriers to family navigation models (e.g., families' lack of receptivity; Broder-Fingert et al., [<reflink idref="bib7" id="ref78">7</reflink>]).</p> <p>Importantly, results will inform refinements to the SPIRIT toolkit to enhance its utility and effectiveness, notably the development of simplified and technology-enhanced parent resources. Finding also suggest the need to further examine the adaptability of SPIRIT within different service delivery models and levels of provider workload burden. Limited time to learn and apply new ideas is a common implementation barrier across service systems (e.g., O'Connor & Pettigrew, [<reflink idref="bib26" id="ref79">26</reflink>]), and suggests that inclusion of leaders who play a role in managing provider workloads may help to facilitate downstream implementation (Aarons et al., [<reflink idref="bib1" id="ref80">1</reflink>]).</p> <hd id="AN0175829981-19">Limitations and Future Directions</hd> <p>Results should be interpreted as preliminary given the pilot nature of this trial, which took place within one community partnered organization. Testing across sites and geographic regions with larger samples will be important for establishing effectiveness in future trials. Further, while SPIRIT training largely focuses on sharing information in a manner sensitive to a parent's emotional profile, information about parents' emotional readiness (e.g., beliefs about ASD or perceptions of child ASD symptoms pre-evaluation) was not available and therefore could not be considered in relation to SPIRIT's effectiveness, though this will be important to address in future trials. Further, information was not available regarding services families were already accessing prior to the evaluation, which could impact the service initiation findings. In addition, only limited information was collected about the families interviewed. Family-provider match on factors such as primary language and cultural background could impact the results (Stahmer et al., [<reflink idref="bib37" id="ref81">37</reflink>]). Another limitation was reliance on provider self-report of SPIRIT fidelity, which is subject to rater bias. Future trials may consider observer-rated fidelity. Finally, the SPIRIT toolkit was developed to be delivered by providers with expertise in ASD in a hospital context and may not generalize to other providers and settings.</p> <p>Overall, SPIRIT offers providers tools for considering a parent's emotional readiness to process service recommendations and take immediate action. Such tools can be important resources for busy community and hospital evaluation clinics, where the emphasis is often placed on what is said (i.e., that a diagnosis is provided) and not how the information is presented. Families of autistic children in particular face high levels of stress following initial ASD evaluation (McGrew & Keyes, [<reflink idref="bib22" id="ref82">22</reflink>]) and unique challenges related to navigating a complex service system (Moodie-Dyer et al., [<reflink idref="bib24" id="ref83">24</reflink>]), and stand to benefit from diagnostic evaluation feedback enhanced with resources such as SPIRIT.</p> <hd id="AN0175829981-20">Author Contributions</hd> <p>RHS led all aspects of the study and manuscript preparation. CC contributed to the development of the toolkit, led data collection, and contributed to manuscript preparation. BC contributed to manuscript preparation. HG contributed to data analyses and manuscript preparation. LBF contributed to the study design, toolkit development, and manuscript preparation.</p> <hd id="AN0175829981-21">Funding</hd> <p>San Diego State University.</p> <hd id="AN0175829981-22">Declarations</hd> <p></p> <hd id="AN0175829981-23">Conflict of interest</hd> <p>The authors have no conflicts of interest to declare.</p> <hd id="AN0175829981-24">Informed consent</hd> <p>Informed consent was obtained for all research-related activities.</p> <hd id="AN0175829981-25">Research Involved in Human and Animal Rights</hd> <p>The research reported here did involve human participants and research activities received IRB approval.</p> <hd id="AN0175829981-26">Supplementary Information</hd> <p>Below is the link to the electronic supplementary material.</p> <p>Graph: Supplementary file1 (DOCX 551 kb)</p> <hd id="AN0175829981-27">Publisher's Note</hd> <p>Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.</p> <ref id="AN0175829981-28"> <title> References </title> <blist> <bibl id="bib1" idref="ref1" type="bt">1</bibl> <bibtext> Aarons GA, Ehrhart MG, Farahnak LR, Hurlburt MS. 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Items – Name: Title
  Label: Title
  Group: Ti
  Data: Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process
– Name: Language
  Label: Language
  Group: Lang
  Data: English
– Name: Author
  Label: Authors
  Group: Au
  Data: <searchLink fieldCode="AR" term="%22Rachel+Haine-Schlagel%22">Rachel Haine-Schlagel</searchLink> (ORCID <externalLink term="http://orcid.org/0000-0001-9123-3704">0000-0001-9123-3704</externalLink>)<br /><searchLink fieldCode="AR" term="%22Christina+Corsello%22">Christina Corsello</searchLink><br /><searchLink fieldCode="AR" term="%22Barbara+Caplan%22">Barbara Caplan</searchLink><br /><searchLink fieldCode="AR" term="%22Hilary+Gould%22">Hilary Gould</searchLink><br /><searchLink fieldCode="AR" term="%22Lauren+Brookman-Frazee%22">Lauren Brookman-Frazee</searchLink>
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  Label: Source
  Group: Src
  Data: <searchLink fieldCode="SO" term="%22Journal+of+Autism+and+Developmental+Disorders%22"><i>Journal of Autism and Developmental Disorders</i></searchLink>. 2024 54(3):1221-1230.
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  Label: Availability
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  Data: Springer. Available from: Springer Nature. One New York Plaza, Suite 4600, New York, NY 10004. Tel: 800-777-4643; Tel: 212-460-1500; Fax: 212-460-1700; e-mail: customerservice@springernature.com; Web site: https://link.springer.com/
– Name: PeerReviewed
  Label: Peer Reviewed
  Group: SrcInfo
  Data: Y
– Name: Pages
  Label: Page Count
  Group: Src
  Data: 10
– Name: DatePubCY
  Label: Publication Date
  Group: Date
  Data: 2024
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Autism+Spectrum+Disorders%22">Autism Spectrum Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Diagnostic+Tests%22">Diagnostic Tests</searchLink><br /><searchLink fieldCode="DE" term="%22Parent+Attitudes%22">Parent Attitudes</searchLink><br /><searchLink fieldCode="DE" term="%22Program+Effectiveness%22">Program Effectiveness</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Education%22">Access to Education</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1007/s10803-022-05601-3
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 0162-3257<br />1573-3432
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Families of children with autism spectrum disorder (ASD) face challenges engaging in services following diagnosis. This study: (1) developed and implemented a toolkit to tailor ASD evaluation feedback to families' needs, and (2) evaluated caregiver and provider perceptions of the toolkit. Focus groups with providers (N = 11) informed toolkit development. Seven providers participated in pilot training and implementation. Provider and caregiver toolkit perceptions were assessed using interviews, surveys, and a fidelity checklist. Toolkit strategies reflect focus group themes. Provider and caregiver ratings suggest the initial feasibility, acceptability, and utility of the toolkit. This toolkit may be feasible to implement in community settings and may increase caregiver satisfaction, though further refinements are needed to support service connection.
– Name: AbstractInfo
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  Data: As Provided
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  Label: Entry Date
  Group: Date
  Data: 2024
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  Data: EJ1415141
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1415141
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      – Type: doi
        Value: 10.1007/s10803-022-05601-3
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 10
        StartPage: 1221
    Subjects:
      – SubjectFull: Autism Spectrum Disorders
        Type: general
      – SubjectFull: Clinical Diagnosis
        Type: general
      – SubjectFull: Diagnostic Tests
        Type: general
      – SubjectFull: Parent Attitudes
        Type: general
      – SubjectFull: Program Effectiveness
        Type: general
      – SubjectFull: Barriers
        Type: general
      – SubjectFull: Access to Education
        Type: general
    Titles:
      – TitleFull: Setting Families Up for Success: A Pilot Study of a Toolkit to Enhance the Autism Spectrum Disorder Diagnostic Evaluation Process
        Type: main
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          Name:
            NameFull: Rachel Haine-Schlagel
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            NameFull: Christina Corsello
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            NameFull: Barbara Caplan
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            NameFull: Hilary Gould
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            NameFull: Lauren Brookman-Frazee
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            – D: 01
              M: 01
              Type: published
              Y: 2024
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            – Type: issn-print
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              Value: 54
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            – TitleFull: Journal of Autism and Developmental Disorders
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