Identifying the Unique Determinants Influencing Rural Families’ Engagement with an Existing Tele-assessment Approach for Autism Identification: A Qualitative Study

Abstract

Accurate identification of autism is a pressing challenge for rural, medically underserved communities. Tele-assessment could address some barriers to care by increasing access to expert diagnosticians, but questions remain regarding how best to implement these approaches. To gather community input regarding rural families’ perceptions and use of tele-assessment for autism identification, we conducted four focus groups with caregivers of children with autism (n = 22) and community service providers (n = 10) living and working in rural areas in the Southeast region of the United States. An iterative inductive/deductive approach guided qualitative data analysis. Coding reflected four core attitudes central to community perceptions, including 1) questions surrounding the validity (scientific legitimacy) of tele-mediated autism assessment; 2) level of trust in the evaluation process in general (and tele-assessment specifically); 3) beliefs about the feasibility of tele-assessment; and 4) concerns related to privacy. These attitudes and beliefs are influenced by determinants at multiple levels and stages, highlighting the need to adapt the existing tele-assessment approach by embedding implementation strategies that support multiple actors at each stage. This work identifies important targets for ensuring equitable access to tele-assessment for rural families.

Lay Abstract

It is difficult for families in rural communities to access autism evaluations for their children when they have concerns. Tele-assessment could make it easier for them to see specialists who give autism diagnoses, but we still need to figure out the best way to carry out these approaches. To understand how rural families view tele-assessment, as well as barriers they may face, we held focus groups with caregivers of children with autism and local service providers in the Southeastern United States. We met with 22 caregivers and 10 providers. We analyzed the discussions and found four key attitudes: 1) questions about whether autism assessment can really be done online; 2) level of trust in the evaluation process, especially tele-assessment; 3) beliefs about whether tele-assessment is practical for families; and 4) worries about privacy. These attitudes and beliefs are shaped by various factors at different stages, indicating that we need to improve tele-assessment by better supporting everyone involved at different stages of the tele-assessment process. This research highlights important areas for improvement to provide fair access to tele-assessment for rural families (e.g., creating education materials, conducting barrier counseling).

Timely, accurate identification of autism is a pressing public health challenge, especially within diverse geographies and communities (IACC, October 2017). The COVID-19 pandemic limited opportunities for in-person evaluation and, subsequently, service initiation and exacerbated disparities in diagnostic care and treatment related to geography, provider shortages, socioeconomic status, race/ethnicity, primary language, and age (Constantino et al., 2020; Durkin et al., 2010; Fountain, King, & Bearman, 2011; Liptak et al., 2008; Maenner et al., 2020; Zuckerman et al., 2017; Zwaigenbaum et al., 2021). Innovative telemedicine approaches have the potential to address service barriers by bringing expert providers into communities that may have increased difficulty accessing care (Alfuraydan et al., 2020; Berger et al., 2021; Dahiya et al., 2021; Ingersoll et al., 2023; Rooks-Ellis et al., 2020). One such approach is tele-assessment, a multi-step process through which a remote diagnostician evaluates a child in their home using caregiver-mediated tools and provides diagnostic feedback and service mapping (i.e., individualized care recommendations and service navigation) in a single visit.

Preliminary telemedicine data suggest many children can be accurately identified with autism via tele-assessment, and implementation of this model dramatically increases the number of children identified while reducing referrals for tertiary assessment (Corona et al., 2023; Stainbrook et al., 2019). Further, tele-assessment has the potential to facilitate more efficient care in a mutually beneficial manner for families and providers, using a model that is potentially more convenient and fiscally advantageous (i.e., reducing need for resource-intensive, under-reimbursed models of care). The potential value and impact of this model has seen investment from NIH in the creation and rigorous psychometric evaluation of new tools for tele-assessment (Corona et al., 2023). Since the pandemic, providers across the country have continued to provide tele-assessment services using largely the same approach disseminated by our institution in 2020, which involves (1) diagnostic interviewing, (2) measure(s) of adaptive and developmental functioning, (3) administration of the TELE-ASD-PEDS (TAP) or other tools designed to elicit characteristics of autism in the context of structured play-based interactions, and (4) observation of spontaneous child behaviors throughout the visit (Wagner et al., 2020; Wagner et al., 2022).

Due to the emergency circumstances of the pandemic, our tele-assessment approach entered public use with several important questions still unanswered. In addition, subsequent research highlights challenges that may limit its utility for every family (e.g., caregiver difficulty following provider instructions, lack of comfort with the process, technology difficulties; Wagner et al., 2020), underscoring a need to investigate characteristics of families and children for whom tele-assessment is, and is not, successful. Although our tele-assessment approach was originally intended for populations impacted by existing disparities in care, community input from these populations was not a part of its design, nor did we have time to research or develop contextually appropriate implementation strategies to disseminate alongside the approach. These omissions potentially weaken tele-assessment’s relevance and sustainability (Aarons et al., 2012; Wingood, 2008).

There is emerging research to suggest that telemedicine may be exacerbating rather than ameliorating disparities among traditionally underserved and disproportionately affected groups. Relative to White persons, families from historically marginalized racial and ethnic groups and families living in poverty and rural, medically underserved areas are less likely to complete scheduled telehealth visits (Chunara, 2021; Lau et al., 2022; Sachs, 2021; Wood, 2020). Myriad factors likely contribute to these disparities, including decreased access to necessary equipment (e.g., an internet-capable device such as a smartphone, laptop, or tablet), a reliable internet connection that can support a secure videoconferencing platform, and private, distraction-free spaces, as well as decreased comfort and experience utilizing technology for healthcare (Gingles, 2022). More research is needed to systematically explore how both real and perceived barriers may hinder autism-related services delivered via telehealth. The purpose of this study was to begin to understand the unique determinants influencing rural families’ engagement with an existing tele-assessment approach for autism identification, with the goal of identifying targeted implementation strategies that could potentially promote equitable, sustained use. We used a qualitative approach to identify factors influencing rural families’ perceptions and use of tele-assessment, by interviewing caregivers of children with autism and community service providers living and working in rural, medically underserved areas in the Southeast region of the United States.

Methods

Overview

We conducted focus groups to understand the perspectives of a sample of caregivers and community providers concerning the use of tele-assessment in rural communities. The purpose of these groups was to identify factors influencing caregiver attitudes about tele-assessment, specific barriers these communities may face, as well as potential facilitators that could be translated into implementation strategies. All study procedures were approved by the institution’s IRB.

Participants

To increase the trustworthiness of the qualitative data (Patton, 1999), we conducted focus groups with separate groups of stakeholders: caregivers of children with autism, and community providers serving children with autism or related neurodevelopmental disabilities. Community providers were not limited to referring or diagnosing clinicians, as the research team hoped to include perspectives from providers with more regular, consistent contact with families (and thus, a more informed understanding of the barriers facing them). There were a total of 32 participants across two groups: 22 caregivers of children with autism, and 10 community providers serving children with autism or related disabilities (Table 1). All participants lived and/or worked in a rural, medically underserved county as defined by the Health Resources and Services Administration (HRSA), with a mean household income of $46,671 across all participating counties. Forty-six percent of caregivers had previously participated in a tele-assessment visit with their child. All caregivers were female, and the majority were White (n = 59%) and non-Hispanic (91%), which is representative of the population in rural counties in this Southeastern state. Ninety percent of providers had experience with tele-assessment (i.e., had attended at least one tele-assessment visit either virtually or in person with a client family). We did not gather participant-specific data on socioeconomic status and educational attainment, as we were concerned that collecting this sensitive information would negatively impact rapport; instead, we collected socioeconomic data from the areas in which participants were recruited.

Table 1.

Demographics of focus group participants

	Total Sample	Caregiver Focus Groups	Provider Focus Groups
N	32	22	10
Gender
Male	0	0	0
Female	34 (100%)	22 (100%)	10 (100%)
Race
Black or AA	8 (25.0%)	8 (36.4%)	0
White	23 (71.9%)	13 (59.1%)	10 (100%)
Other	1 (3.1%)	1 (4.5%)	0
Ethnicity
Hispanic or Latino/a	2 (6.3%)	2 (9.1%)	0
Not Hispanic or Latino/a	30 (93.8%)	20 (90.1%)	10 (100%)
Experience with Tele-assessment
Yes	19 (59.4%)	10 (45.5%)	9 (90%)
No	13 (40.1%)	12 (54.5%)	1 (10%)

Focus Group Procedures

We initially conducted four focus groups, two with caregivers and two with providers. We conducted two additional caregiver groups approximately 10 months after the initial groups in an effort to capture the perspectives of a more racially diverse rural population. Sample size was informed by guidelines published by Hennink et al. (2019) stating that a minimum of four focus groups is necessary for identifying core issues in the data, with two groups per stratum necessary for a richer understanding of the issues. The research team limited focus groups to 5–6 participants per group, as recommended by our institution’s Qualitative Research Core for ease of facilitation.

Caregivers were eligible to participate if they had a child with an autism diagnosis aged 6 years or younger, as the tele-assessment approach referenced in the current study was intended for use with young children (Wagner et al., 2020). We recruited caregivers through an existing IRB-approved clinical research database, with particular efforts to oversample families living in rural counties and medically underserved areas, as defined by the U.S. Census Bureau and HRSA. We specifically focused recruitment on four early intervention service districts almost entirely comprised of rural counties, and excluded any districts representing metropolitan areas within our state (Table 2). Community providers were eligible to participate if they worked with at least five children with developmental differences per week as part of community healthcare or educational entities, and regularly worked with children and families living in rural areas. These providers included primary care physicians, early interventionists, speech-language pathologists, and Board Certified Behavior Analysts. We recruited providers through relationships with our state’s early intervention system and a statewide learning collaborative for primary care providers, and through providers’ past involvement in professional development activities offered through our institution.

Table 2.

Early intervention service districts

	Counties	MUA Counties*	Mean HHI**	Racial/Ethnic Minority
District 1	16	63%	$44,687	13%
District 2	13	38%	$41,658	27%
District 3	10	90%	$46,550	44%
District 4	15	47%	$53,791	33%
Total	54	60%	$46,671	29%

^*MUA = Medically Underserved; HHI = Household Income

We held separate focus groups with caregivers and providers (such that caregivers and providers were not included within the same group) to encourage open and honest discussion. Focus groups occurred over a HIPAA-compliant teleconferencing platform (Zoom) and averaged 60 min in length. The research team recorded all sessions to allow for review and transcription.

Interview Guide

The research team created two versions of a semi-structured interview guide – one for caregivers and one for community providers – to facilitate consistency in data collection. We structured the interview guide around the Consolidated Framework for Implementation Research (CFIR), which is commonly used in research to identify contextual barriers and facilitators to intervention implementation and to help guide the tailoring of implementation strategies (Damschroder, 2015; Damschroder et al., 2009). The CFIR has been used across a variety of healthcare settings, including rural and low-income contexts (Bell, 2023; Moss, 2023; Ryan, 2023). The first author developed the interview questions based on her own experience conducting tele-assessment visits and available literature related to barriers to telehealth for rural and otherwise underserved populations (Stainbrook et al., 2019). Study authors reviewed the questions for clarity and appropriateness for a focus group format.

During focus groups, the moderator first provided a brief description of the current tele-assessment approach, as participants had varying levels of experience with tele-mediated services. The moderator then asked participants questions regarding their attitudes toward tele-assessment, and prompted them to think about potential benefits and barriers that families from rural, under-resourced communities may experience related to tele-mediated services. Finally, the moderator asked participants to think about supports that could facilitate the use of tele-assessment in their family/community.

Description of Moderators/Reflexivity

All focus groups were moderated by the first author, a psychologist with graduate training in clinical interviewing and experience leading focus groups. Prior to conducting the focus groups, the first author met with the home institution’s Qualitative Research Core to review guidelines for focus group moderation (e.g., maintaining a neutral, warm presence; fostering a non-judgmental atmosphere; and encouraging equal participation across participants) and to define procedures should a participant express distress or a desire to discontinue participation (which she communicated to participants prior to each session).

Data Collection

At the beginning of each focus group, the moderator reviewed limits to confidentiality and informed participants that the study team would record discussions for data collection purposes. She encouraged participants to be respectful of others’ time, perspectives, and privacy, and followed the interview guide, with further probes or follow-up questions administered as necessary. All participants had the opportunity to provide their thoughts for each question.

Coding and Analysis

Members of the study team coded and analyzed verbatim transcripts for each focus group using a hierarchical coding system based on the interview guide and a preliminary review of two transcripts (one from each participant type). The initial broad qualitative categories included barriers and facilitators to tele-assessment, advantages to tele-assessment, characteristics of individuals, and characteristics of tele-assessment, with discrete codes under each category. The study team met to review the clarity of codes and to check for and remove codes due to duplication. This resulted in creation of a master codebook comprised of 99 codes, each with a written definition.

Two study authors coded all transcripts. Each participant statement could be assigned up to ten different codes. To maintain trustworthiness throughout the coding process, another member of the study team (an experienced qualitative coder) read all transcripts and coded 50% of transcripts. The study team resolved all coding discrepancies using established procedures within qualitative research (i.e., discussion to reach consensus; Goodell, 2016); they discussed discrepancies through multiple teleconferencing sessions and refined and/or added codes in the master codebook. The first or fourth author re-coded transcripts following any changes to the codebook. Transcripts and codes were managed using Microsoft Excel.

We used an iterative inductive/deductive approach to guide data analysis. Inductively, we sorted all quotes within transcripts by coding category to identify overarching themes. Deductively, coding was guided by the CFIR framework, the Health Belief Model, and Ecological Systems Theory, or the Social-Ecological model (Bronfenbrenner, 1977; Darling, 2007). The Health Belief Model is a psychosocial theory of health-based decision-making that outlines different influences on health behaviors (i.e., personal characteristics, attitudes/beliefs, perceived barriers and benefits, and cues to action; Rosenstock, 1974). Ecological Systems Theory examines the interplay between individual, relationship, community, and societal factors; we selected this model for this project so we could better understand the effect of social determinants of health on families’ attitudes towards tele-assessment. With influence from these models, we created a conceptual framework to visually present the focus group results.

Participatory Methods

This study did not involve members of the autistic or autism communities in the development of research questions, study design, measures, implementation, interpretation, or dissemination of findings. However, insights gained from our conversations with caregivers of young children with autism will directly inform the creation of future implementation strategies and supports. We will strive to ensure that future directions of this research include community feedback and involvement. The authors have extensive autism-specific clinical and research experience.

Data Availability

The full data that support the findings of this study are available from the first author, upon reasonable request. The codebook and focus group interview guides are available as supplementary files.

Results

In this section, we will present focus group findings, including specific individual, family, and community/systems factors that were identified as key barriers or facilitators to tele-assessment engagement. The themes identified through qualitative analysis were largely consistent across focus groups; thus, information has been synthesized and presented in one overarching conceptual framework (Figure 1). The center of the figure displays core attitudes and beliefs about tele-assessment (influenced by the Health Belief Model). Surrounding these attitudes and beliefs are specific contextual factors that might influence one or more of the attitudes. Consistent with the Social-Ecological model, these factors are situated across multiple contexts (inner, family, outer). This framework is intended to help conceptualize the interacting factors that influence families’ decisions regarding tele-assessment engagement. A goal of this process was to better understand these decision-making factors to ultimately develop potential implementation strategies tailored to address them. In the sections below, we will first describe the core attitudes influencing rural families’ decision-making related to tele-assessment engagement. Next, we will describe the factors influencing those attitudes, which are organized into three groups: personal factors, factors related to the family environment, and external factors. Exemplary quotes from focus groups are provided and identified by their participant type (Caregiver or Provider), their focus group number (1–4 for caregiver groups, 1–2 for provider groups), and their individual participant number. For example, C2–2 would indicate the quote came from Participant #2 within the second Caregiver focus group.

Figure 1.

Conceptual Framework: Factors Influencing Tele-assessment Engagement for Rural Families

Attitudes and Beliefs about Tele-assessment

Four major themes emerged from focus groups pertaining to families’ attitudes about tele-assessment: (1) Validity, (2) Trust, (3) Feasibility, and (4) Disclosure. Validity encompasses attitudes and beliefs regarding tele-assessment’s accuracy and scientific legitimacy as a modality both for diagnosing autism (compared to in-person assessment) and for capturing a representative sample of a child’s skills and behaviors. Trust reflects the extent to which caregivers subjectively trust that tele-assessment will work for their specific family. This can include trust in the professional’s ability to elicit the behavior(s) they need to feel confident in their diagnostic impression, as well as trust that if a professional is not confident, they will take measures to increase their confidence. Feasibility reflects families’ consideration of logistical challenges and possibilities, including practical variables like effort, resources, and support. Finally, disclosure relates to caregivers’ complex attitudes regarding privacy and comfort in revealing their personal/home lives (e.g., space/setting, dynamics, material possessions) via tele-assessment. While these four themes likely interact to influence family decision-making related to tele-assessment, they can also reflect distinct concepts. For example, a family might believe tele-assessment is a valid (i.e. scientifically sound) way of diagnosing autism, while subjectively not trusting that it is appropriate for their specific family or child. Conversely, some families might fully trust the assessment process without needing evidence of its scientific legitimacy.

Validity: “In my mind, it is not going to be 100% accurate...maybe that is something I imagine, but that is what is going on in my head.” (C2–1)

Trust: “[I hope] the provider would be, like, I can see that this may not be the best situation for this particular child, so maybe it’s better if we see them in person to confirm the diagnosis versus someone else that may be, like, oh, yeah, they definitely have autism. So I think telehealth definitely is a great resource, and it’s a good starting place. And from there, the professional can figure out if it’s appropriate or not. (C3–1)

Feasibility: “I see that more with the under-resourced families. Just thinking of it, the ones that are not quite as quick to say, ‘Yes, we can do this. Or yeah, let’s try that.’

“I don’t know what I would’ve done [if] the child ran out of the room and I’m attached to a cord...’” (P1–1)

Disclosure: “Some families who are concerned about having anybody into their home...some families decline in-home therapy even though it’ll be so much easier for them. So they’ll drive somewhere just to avoid, because they’re ashamed.” (P2–1)

Participants highlighted several specific factors that might influence and underlie these attitudes and beliefs. These included personal factors (inner context), factors specific to their family environment (family context), and external factors (outer context).

Inner Context

When asked about decision-making related to tele-assessment, participants endorsed several personal factors that might influence a family’s decision to participate. Several caregivers highlighted specific characteristics of their children that might influence their attitudes regarding the feasibility and validity of the assessment, as well as their level of trust in the evaluation process. For example, some worried that their children would be too active to remain in front of the camera, while others worried that their concerns about their children would not be evident in the context of a telehealth visit. In contrast, other caregivers noted that certain child preferences and characteristics might increase their comfort and the overall ease of the visit.

“I mean, because watching them over a video, I just don’t see how you’re getting the full effect of the child. Like when we did the evaluation in person, he was very hands-on with my son.... And you have, like everybody’s mentioning, their children running away, not staying in front of the camera.” (C4–1)

“My son is more on a higher functioning thing and a lot of people who watch videos are like, ‘I didn’t see that he had autism.’ Seems very noticeable when you’re with him in person.”

“The benefit of it being over telehealth is he’s comfortable in his home...He’ll scream and cry in the doctor’s office.” (C1–1)

Another personal factor that emerged as having potential influence on a family’s decision-making and attitudes was caregiver knowledge related to child development and, more specifically, autism—as families with a lower level of knowledge may be less likely to understand and trust the evaluation process and to accept the validity of innovative measures of identification.

Knowledge about autism: “I used to live in a very small town, and ...there [are] a lot of parents that doesn’t have the knowledge. I think that’s going to be a huge barrier because, even in person, it’s really hard for them to understand what is happening with their son. I don’t know if just by phone they going to be able to...understand what is happening.” (C2–1)

Participants also reported that personal feelings of stress and anxiety likely impact decisions about tele-assessment participation. While the convenience of tele-assessment may alleviate some burdens for families, its novelty and unfamiliarity may exacerbate the stress a family is already feeling related to their child’s development, and raise concerns related to its validity and feasibility. Further, some participants also voiced that families experience stress at the thought of outside providers seeing inside their homes during tele-assessment visits (i.e., disclosure).

Stress: “You worry, like, what if this person thinks my house is a mess? What if they think these kids are just wild around here or something? So I think you obviously worry about how your home’s being presented, you know, kind of like if you were inviting somebody over” (C3–2)

“I’ve had families really stressed about whether it’s going to work or not. I had one mom... sitting there with her finger hovering over the button before the [evaluation started].” (P2–2)

“Are they sure they’ve seen, you know, my concerns? Like, I think you worry about that aspect.” (C3–2)

Finally, participants reported that an individual’s level of experience and comfort with technology would likely play a significant role in their decision to try tele-assessment, reflecting their attitudes related to its feasibility and ultimately, their trust in the evaluation process.

Comfort with technology: “I do this for work all the time, so this is fine for me, but I know a lot of people that I interact with don’t have this knowledge or technology to work in a Zoom call or know how to manage those kinds of videos.” (C2–2)

“Many of our patients are being raised by extended family who are older. And even yesterday, I had a grandpa...really heels dug in, doesn’t want to do telehealth... He was not willing to even try.” (P2–1)

Family Context

In addition to noting the personal factors detailed above, focus group participants identified family-level resources and support as important influences on their attitudes about tele-assessment. For families from under-resourced communities in particular, access to key physical resources (technology, a private space they are comfortable showing over telehealth, materials, transportation) and additional support may strongly influence families’ attitudes/beliefs about feasibility and disclosure, and ultimately preclude or facilitate tele-assessment engagement.

Participants reported limitations related to internet access or stable Wi-Fi, especially for families in more rural areas. Further, some families lack the necessary devices to participate in tele-assessment. Finally, many of these families reportedly lack the experience or comfort with technology necessary to navigate downloading the software, managing the visit, or troubleshooting any technology-related issues.

Physical resources (Technology): “I had many families that just chose to opt out of [tele-services]. They got frustrated with it, they didn’t even have the technology to do it...So, I’ve had to go to them to let them borrow my technology so that they can just get this testing done for their children.” (P2–3)

Other noted barriers related to physical resources included access to a private, distraction-free space and materials to use during testing.

Physical resources (Space): “We live in an RV until we actually find a place. If I have to assess her today inside the RV, where we do have internet is a very confined space, and she don’t stay still. Having the right space right here would be difficult.” (C1–2)

Physical resources (Materials):“Some of our families... would feel like, ‘Oh I got to go buy a container with a lid. Or I’ve got to go buy those blocks or something.’ So, I think it has to be really careful to say things your child is familiar with so that they don’t feel the need to spend money. Because a lot of my families would not have $2 to go to the dollar store to get something extra.” (P1–2)

Along with identifying these potential barriers to tele-assessment, focus group participants also highlighted resource-related considerations that might encourage families to participate. Participants mentioned that, especially for rural, under-resourced families, the ability to conduct the tele-assessment visit at home and not to have to travel would be beneficial, as families may lack transportation or have difficulty taking an entire day off of work to drive to an in-person visit.

Physical resources (Transportation): “I would say just the fact that I wouldn’t have to travel. That would be a big plus because some people don’t have good reliable transportation or even money to travel very far.” (C1–3)

Regarding support, participants in both groups mentioned that tele-assessment might be more feasible with another person available to assist; participants reported that the level of effort it takes to facilitate a tele-assessment visit might be prohibitive for some families. Caregivers voiced that having to manage their child(ren), materials, and technology, all while following the diagnostician’s directions and answering questions may be too much to manage without support.

Support: “If I had just one more set of hands to help me manage a camera, interact with my child, talk to the [clinician], that would help.” (C2–2)

“I’ve never used Zoom before, but I could figure it out. But if I was a grandparent that was not very familiar with anything past texting, then it could be more complicated.” (C4–2)

In addition, participants noted that family support (e.g., availability of childcare for siblings) might also impact families’ decisions to opt into tele-assessment as opposed to in-person services. The ability to hold the assessment in the family’s home was noted to be beneficial for families with multiple children.

Support: “Families with multiple children, because I know especially with COVID, obviously you can’t even think about bringing a younger sibling in [to an in-person evaluation]. I feel like that would be an easier option so that they could just not have to hassle with finding the babysitter, babysitter canceling, and all that.” (C2–3)

Outer Context

Extending beyond personal and family-level characteristics, specific external factors were noted to have a potential influence on families’ participation and attitudes towards tele-assessment. Focus group participants emphasized the importance of information and outside opinions about tele-assessment, and families’ existing connections and engagement with local service systems.

Both community providers and caregivers mentioned that not all referring providers seem to have the same level of awareness, familiarity, and confidence related to tele-assessment. This may impact how, and if, tele-assessment is introduced as an option to families at the time of referral. Participants reported that most families do not receive information related to the accuracy of tele-assessment, nor do they have a thorough understanding of what to expect during the visit. This lack of information contributes to family stress and prevents families from making an informed decision and preparing for the visit ahead of time. It also may significantly impact families’ attitudes and beliefs regarding the validity and feasibility of tele-assessment, as well as their trust in the evaluation process.

Information about tele-assessment: “The other thing I’ve encountered a few times recently... is skepticism from other providers about the process. I’ve encountered a pediatrician recently that was like, ‘I don’t know that that’s a valid way to diagnose autism.’ I’ve encountered a speech pathologist that made the same comment. From different places and different areas. I don’t think they were trying to be negative in either sense. They just genuinely weren’t familiar with the validity around it ...” (P1–3)

“I think it’s sometimes an initial feeling and some of it comes down to how the service is presented and how it’s described. But yeah, I think sometimes families are worried about whether the psychologist could really know based on a telehealth if a child has autism or not.” (P2–2)

Families’ engagement with local care/service systems (i.e., Part C, or early intervention) may influence the information and opinions they receive related to tele-assessment, as well as their attitudes and beliefs regarding their trust in the service, in addition to its validity. Families are more likely to be receptive to information shared by trusted supports and connections, particularly when considering services offered by unfamiliar providers outside their communities. They are also likely to weigh perceived benefits with existing resources/options available to them. In particular, focus group participants noted consideration of wait times and access to specialty care systems. They reported that families are sometimes able to schedule telehealth visits more quickly than in-person visits, although this is not always the case.

Service system engagement: “I actually think that’s a great idea to have [your early intervention team] there with you because you have somebody that is likely familiar with the process themselves, and they can kind of help direct and guide with your child... (C3–1)

“There’s a lot of times families will be like they want an in person and then realize, ‘Well, you may not get seen before you turn three then. It could be nine months, but if you want to do telehealth, I can get you seen next month.’ And they’re like, ‘Oh yeah, okay, I’ll do telehealth.’” (P1–4)

Participants also noted that existing connections with service systems might be a source of additional support for families, including direct assistance with their participation in tele-assessment.

Service system engagement: “My kids are all over the place. Then, he has an older brother that is also all over the place and likes to distract him. If there was ... that option of having someone from early intervention come in or setting it up at the pediatric office and doing it there, so you have that extra help, I think that to me, that would work better than just you and your kid at home, and whatever else you got going inside your house. Especially if you have multiple kids.” (C2–4)

Discussion

This study used focus group methodology to gain an initial understanding of rural families’ beliefs and attitudes about tele-assessment, along with the multi-level factors that influence them. Analysis of qualitative data reflected four core themes central to these families’ perceptions, including 1) questions surrounding the validity (scientific legitimacy) of tele-mediated autism assessment; 2) the extent to which families trust the evaluation process in general (and tele-assessment specifically); 3) beliefs regarding the feasibility of tele-assessment; and 4) complex concerns related to privacy and disclosure (i.e., allowing providers to see their homes). These attitudes and beliefs are influenced by personal factors (knowledge about autism, stress, comfort with technology, child characteristics), factors specific to the family environment (resources, support), and external factors (access to information about tele-assessment, service system engagement), all of which can either serve as barriers or facilitators to engagement and success with tele-assessment. In addition to gaining a richer understanding of the multi-level determinants influencing caregiver attitudes and beliefs towards tele-assessment, another goal of this project was to identify corresponding implementation strategies that could potentially leverage existing facilitators and address barriers to increase tele-assessment engagement and success for those rural families who decide to participate. Substantial work supports the necessity of adapting interventions to fit specific characteristics of the target setting and population (Aarons et al., 2012; Wingood, 2008). The creation and application of community-informed implementation strategies, defined as “methods or techniques used to enhance the adoption, implementation, and sustainability of a clinical program or practice” (Proctor et al., 2013), may be a way to increase the value of tele-assessment for rural populations and limit unintended drawbacks (e.g., unintentionally exacerbating existing disparities in care). Several studies have identified strategies to support implementation of telehealth in general, including training administrators and providers on telehealth processes (Berg et al., 2020; Helleman et al., 2020), creating resources to prepare families for their telehealth appointment (Berg et al., 2020), and involving patients in the creation of telehealth processes to improve attitudes towards telehealth (Helleman et al., 2020). Based on these existing studies and input from our focus group participants, we offer the following practical implications and preliminary strategies:

Develop and Disseminate Educational Materials

As some caregivers and providers reported questioning their trust of the evaluation process and the validity of tele-assessment, one possible solution might involve creating and disseminating educational materials to referring providers and service systems that may already have established, trusting relationships with families. These materials might be beneficial specifically for primary care and early intervention providers whose lack of awareness related to tele-assessment’s accuracy, acceptability, and flexibility may prevent them from recommending it to rural, traditionally underserved families who most stand to benefit.

Assess Readiness and Identify Barriers and Facilitators

Consistent with the identification of specific, multi-level factors that influence families’ perceptions of tele-assessment, it is important that families have a thorough understanding of its requirements, components, and potential benefits and limitations so that they can give truly informed consent and identify potential barriers at the outset. Further, for those families who choose to participate in tele-assessment, it will be important for caregivers to understand what, if any, aspects of the tele-assessment visit can be modified to increase the chance of a successful visit. Having a family navigator conduct a “discovery call” in advance of the diagnostic appointment to understand needs and concerns, provide information about the process, problem-solve, and empower caregivers to ultimately make the most appropriate decisions for their family could be one strategy to address core attitudes and beliefs regarding validity, trust, feasibility, and disclosure. The impact of this strategy might also be strengthened with the inclusion of visual supports (e.g., videos of tele-assessment visits, pictures of possible layouts), as some focus group participants reported assuming that factors related to space and resources would make tele-assessment an infeasible option.

Inclusion of a Trusted Intermediary

Many focus group participants voiced concerns that caregivers are sometimes unable to manage tele-assessment visits on their own due to myriad reasons (e.g., presence of siblings, characteristics of the child being evaluated, lack of comfort with technology, overall stress). Some participants discussed the benefits of having a trusted person available during the tele-assessment visit to help facilitate the activities, translate or elaborate on any questions that might be confusing, provide additional perspective on the child, and troubleshoot any issues with technology. Further, some of the community service providers reported that being present for the diagnostic decision, feedback, and recommendations allowed them to assist families in interpreting the results and connecting observations during the assessment to appropriate goals and recommendations for the child. This may be especially important for families who are less prepared for an autism diagnosis. One possible solution to family concerns regarding feasibility would be the explicit and planned inclusion of a trusted support person before, during, and after the tele-assessment visit. This could be a professional already involved in the child’s care (e.g., a developmental therapist) or even a family friend.

Limitations

This study has important limitations. The first relates to the transferability of our findings. Although efforts were made to recruit a representative sample of families living in rural counties, our qualitative data reflect the opinions and experiences of a relatively small number of individuals. Most participants identified as female and White, although targeted efforts were made to recruit a more racially diverse group of caregivers following initial recruitment. It is important to know that this sample accurately represented the population of individuals living within rural, medically underserved areas in the state—a group who could potentially benefit greatly from tele-assessment. It will be important in future research to recruit a larger number of participants across different demographic groups (e.g., individuals speaking languages other than English; people from different regions and racial/ethnic groups with different levels of income, education, and comfort with the medical system), with varying levels of experience and interest in tele-assessment; it is likely that the many concerns and considerations identified in this study would only be multiplied by these differences. Another important limitation relates to our study’s focus group format, which required participants to speak and share their views in front of other people. This may have inadvertently introduced selection bias, as certain individuals may not be comfortable sharing their opinions in the presence of others. Efforts were made to increase participant comfort within each group (e.g., rapport building, discussions of confidentiality, small group size). However, as is the case with many focus groups, some individuals spoke more than others, despite efforts to encourage group participation. The study team did not present findings to participants following the study for validation purposes, which may limit credibility. However, multiple members of the study team attended the focus groups, read the transcripts, and reviewed and analyzed the data. Finally, future research should strive to include community members (i.e., individuals with lived experience) as members of the study team.

Despite these limitations, this study provides crucial insight into rural families’ attitudes, beliefs, and experiences related to existing tele-assessment approaches, which have become increasingly common in the years since the pandemic. Only by considering community and family input can we properly evaluate tele-assessment’s true relevance, value, and impact, and identify specific factors and tactics to enhance them. Findings point to a few preliminary strategies that might address identified barriers and facilitate tele-assessment engagement and success. Future research should evaluate these further, to determine how such tailored supports might influence families’ decision-making and care experiences. Understanding and addressing families’ complex attitudes and beliefs surrounding service engagement will be critically important in meeting the pressing needs of rural communities.