Improving Service Access for Under-resourced Parents of Children on the Autism Spectrum: a Randomized Controlled Trial

doi:10.21203/rs.3.rs-3287373/v1

Background

Historically marginalized and minoritized families experience disparities in autism identification and access to services. Few interventions are co-designed in partnership with under-resourced families and the service providers who support them to help families successfully navigate the autism services system. Little is known about how to create new network connections between historically marginalized parents and professionals.

Methods

Using a community partnered participatory research model, we developed Mind the Gap (MTG), a peer navigation intervention that supports historically marginalized and minoritized families in setting goals and engaging in activities to access services for their recently diagnosed child on the autism spectrum. We compared the effects of MTG (n = 53) on randomly assigned participants to a resources-only comparison (n = 59) in a four-site randomized controlled trial. Participants were recruited from lower-resourced communities using partnered participatory research methods, with 92% of families enrolled in the study earned less than USD $50,000 per year. Our primary outcome was caregiver service access over time and our secondary outcomes were caregiver reported family and professional support networks, and family, community, and services empowerment.

Results

In our intent-to-treat analysis, MTG caregivers did not differ in service access relative to the comparison group; however, MTG caregivers had increased professional networks and improved service empowerment post intervention relative to the comparison group.

Conclusion

Results suggest this low-cost intervention can improve the support networks and service empowerment for caregivers at high risk of service disconnections and may empower their accessing other services in the future.

Clinical Trial Registration

NCT03711799; Registration Date: 10/12/2018 https://clinicaltrials.gov/ct2/show/NCT03711799?type=Intr&cond=Autism&intr=Gap&age=0&draw=2&rank=2

community partnered participatory research model

peer mentorship

service navigation

autism

service inequality

Autism is represented in every racial, ethnic, cultural, and linguistic group; however historically marginalized and minoritized children experience unequal access to timely identification, diagnosis, and services (1-4).

Timely family engagement in early intervention services

Timely access to early intervention services is crucial for promoting skill development in autistic children. Early intervention services support the family and child by enriching the child’s learning environments in ways that optimize cognitive, language, and motor learning processes (5). Best practices highlight both family engagement in the child’s services and family-centered care. Family engagement and family-centered care are associated with improvements in child development, quality of life, caregiver empowerment, and attainment of family goals for intervention, among other benefits for the child and family(6). Building connections to professionals can require social resources gained through informal connections with family and community members and formal connections with service professionals, such as information and knowledge about who, where and how to contact providers. Promoting early access and family engagement in autism services is particularly important for historically marginalized and minoritized families of autistic children with linguistic and cultural differences who face system-level barriers to successfully navigating healthcare systems (7, 8).

Disconnection of historically marginalized and minoritized caregivers from service systems

There are well documented disparities in access to services among historically marginalized and minoritized families (3). Information is often unavailable or inequitably shared with some cultural group. Such information is often public health related and, as a result, has important implications for health & disparities. Non-English speaking or English as a second language families often report difficulty navigating service systems due to lack of translation and interpretation (e.g., interpreting technical reports; managing conflicting information from different providers (3). Unfamiliar diagnostic terms from their home language and culture can add to the confusion. Undocumented immigrant mothers of autistic children reported delaying autism diagnostic evaluations and services because of fear of approaching public institutions (9).

Separate from language and cultural barriers, systemic racism is another root cause of autism diagnosis and service disparities (10). As defined by Banaji, Fisk and Massey (11), systemic racism refers to “the processes and outcomes of racial inequality and inequity in life opportunities and treatment.” They explain that systemic racism is multi-dimensional and includes institutional structures, social structures, individual mental structures, and everyday interaction patterns. Interventions developed in partnership with community members that identify socioeconomic and cultural strengths and barriers to services access can potentially aid in dismantling systemic racism for disadvantaged groups.

Lack of network connections to help initiate and navigate services

Social network connections, both informal connections with family and community, as well as more formal connections to professionals, such as clinicians and doctors, can provide caregivers with access to information and resources that can support service access and navigate service coordination (12-15). Parent network size can predict the number of autism services they access (14). Parents connect with teachers to access autism expertise and coordinate service for their child on the autism spectrum (15). Most caregiver engagement research examines barriers and facilitators to caregiver empowerment at home, in the community or with professions (16) and advocacy (17-22), however little is known about how to help caregivers of autistic children build connections to providers to help them navigate the autism service system. A meta-analysis of promising implementation strategies from research intervention studies for under-resourced parents found that adding a peer mentor to your network can significantly improve outcomes, however, few studies determine if peer mentors can help caregivers increase their connections to professionals (18). The field is poised for new navigator-mediated interventions that focus on both service navigation and expansion of social networks.

Developing and Refining a Peer Navigator Program

We used a Community Partnered Participatory Research (CPPR) approach (23), where we partnered with community organizational leaders and staff, family members and autistic people to develop a program called Mind the Gap (MTG) that engages peer navigators to connect caregivers with service providers and help them grow their services network for the child on the autism spectrum, post-diagnosis (see methods, MTG Program section for more details on the intervention). In alignment with CPPR methodology, all study materials were co-developed with community partners in monthly meetings. We used a number of implementation strategies (24) throughout this partnership including building a coalition with community partners, co-identifying barriers, locating facilitators, and continuously refining all aspects, including the use of peer navigators, the peer navigator protocols and the intervention materials, in partnership with our community collaborators.

Once study materials were finalized, we conducted and analyzed qualitative data provided by 19 focus groups with 58 caregivers of autistic children and 55 service providers and administrators. Published findings identified a common theme regarding navigational supports, where authentic, trusting partnerships between caregivers and other caregivers and professionals who served as mentors and coaches, lead to overcoming barriers to service (25). We recognize the historical harm that scholarly research projects have committed against disenfranchised and marginalized communities (i.e., BIPOC, disability, women, lower resources, etc.), and believe the start of undoing such harm demands an intentional focus of breaking the status quo and uplifting the voices of those most impacted. CPPR collaboration with community partners, together with focus group findings, resulted in the development of MTG. A MTG pilot study supported MTG as a promising program and led to refinement of materials and procedures (8). This paper aims to use a randomized control trial (RCT) to test the hypothesis that under-resourced caregivers of children on the autism spectrum who receive coaching and materials will have better outcomes, including sooner access to first service, increased connections with service professionals and a greater sense of empowerment when interacting with service providers, than caregivers who receive only materials. This research study addresses systemic and organizational barriers that under-resourced caregivers face when accessing services, using a community partnered approach.

Design

The current study RCT study compares two conditions: 1) MTG with peer navigation and accompanying resources and activities (referred to as MTG) to 2) a MTG resource only group (referred to as MTG Resources-only) to examine program impact on time to first service (primary outcome) and caregiver support and family empowerment (secondary outcomes).

Mind the Gap (MTG) Program

MTG includes both materials (i.e., resource binder) and 12 coaching sessions with a peer navigator, who was culturally and linguistically matched whenever possible. English, Korean or Spanish speaking peer navigators worked with the family to set goals and provide access to specific materials, activities and topics related to the families’ aims and needs.

MTG Family Resource Binder. The research team and community partners collaboratively created materials and collected resources in a virtual binder, available in English, Spanish, and Korean. The identification of binder topics occurred through focus groups in which caregivers and community practitioners shared about barriers to the autism service system and gave recommendations regarding what information might be most important for families of newly diagnosed children (3). Each topic included videos and/or narrated slides, a discussion guide, activities, and book resources (https://www.livebinders.com/b/2665813). Table 1 shows the catalogue of topics available to caregivers in the MTG Family Resource Binder.

Table 1. MTG Family Resource Binder Topics

Binder Topic	Description	Example Activities
What is Autism Spectrum Disorder (ASD)?	Information about autism, how a diagnosis is made, and what signs you might see	How to Request a Copy of the Diagnostic Report; Creating a Vision Statement
Navigating the System	Overview of different service systems based on age and needs of child (state-specific)	What to Expect from Various Services; Taking Notes in Meetings
How to Work Together: Providers and Families (Parent Rights and Child Advocacy)	Helps caregivers understand rights, and provides strategies to communicate with providers in a collaborative way	Writing Formal Requests; Talking with Providers
Understanding Challenging Behavior	Basic behavioral principles and suggestions for environmental supports to address challenging behavior	Making a Visual Schedule; Creating a Choice Board
Communication Development	Review of different forms of communication and techniques for building communication	Assessing Child Developmental Skills Together; Identifying your Child’s Interests
Facing the Crowd (Dealing with Stigma)	Common difficulties related to stigma, how it might be related to culture or community, and strategies to address this	Talking with Your Family about Autism; Autism Symptoms vs “Bad” Behavior
From Anxiety to Acceptance	Recognizing emotions after diagnosis, how it can affect thoughts/feelings/behaviors, and strategies towards acceptance	Identifying Coping Strategies
Your Social Network	Importance of social support and how to expand your support network	Expanding your Social Network
Healthy Lifestyle	Importance of taking care of oneself as a caregiver and how to make a plan for wellness	Choosing Self-Care Activities; Healthy Lifestyle
Basic Needs	Additional how-to resources that might be useful for caregivers	Accessing Translation Services; Preparing your Home for Service Providers

Mind the Gap Program Delivery. MTG was delivered over 12 months, which included an active intervention phase and an ongoing follow-up phase. The first 12-18 weeks included the active intervention phase during which peer navigators engaged in up to 12 meetings (or “sessions”) with the caregiver. Sessions occurred via several modalities including at least one in person visit per month (at a time and place collaboratively determined with the family), via secure Zoom teleconferences, or over the phone. The initial two sessions included an intake interview and goal setting process, which guided the program. During subsequent sessions, peer navigators engaged with families around the MTG topics. Based on parent-identified content, they shared materials relevant to the family and reviewed goals. Active intervention was considered concluded when: 1) 12 coaching sessions were completed; 2) 18 weeks passed since the first coaching session; or 3) families indicated that they had met their goals for the MTG materials. After weekly sessions ended, check-in sessions were reduced to one time per month for one year from intake. Families received full access to the virtual MTG Family Resource at the end of their participation.

Peer Navigators. During the first meeting between the coach and caregiver, Intake Visit (session 1), the coach used a structured intake interview to build rapport, learn about the child’s strengths, the family’s internal and external resources, goals for the family related to autism and autism services, and identify any potential basic needs for the family. This information guided collaborative goal setting in which the peer navigator helped the caregiver identify three goals they hoped to achieve during the program related to service access, autism knowledge and family self-care. Based on data from the pilot indicating some families could not commit to an hour each week, the navigator and caregiver collaboratively determined the length and type of each coaching session weekly (check-in, standard or enhanced session).

A check-in session (approximately 10 -15 minutes) included a brief discussion of goal progress and provision of any needed support to the caregiver. This was often completed by phone. During both standard (approximately 45 min) and enhanced (approximately 1 hour) sessions the peer navigator followed a general session structure: a) reviewing progress since the previous session; b) assisting the caregiver in selecting a new topic to review; c) setting weekly next steps and documenting them on the family’s handout; and d) setting the data and time of the next session. Enhanced sessions also included review of relevant information and collaborative material construction on the chosen topic (e.g., watching module videos, reviewing handouts, completing worksheets, providing resources) and were typically in person. Family needs and preferences guided topic selection.

Peer Navigator Training and Supervision. Peer navigators completed four training sessions in the concepts, materials, and activities of the MTG program through didactics, discussion and activities such as opportunities to role-play and practice using the materials with each other. The training sessions had a 3-hour-maximum duration, which varied slightly according the size and amount of discussion in each group. (see Table 2)

Table 2. MTG Peer Navigator Training Agenda

	Topic(s)
Session 1 (3 hours)	Overview of MTG Program Basics of Research Intake Interview Overview and Practice
Session 2 (3 hours)	Review program topics and modules Basics and Importance of Data Collection Review Data Sheets Review Live Binder
Session 3 (3 hours)	Engagement Strategies Considering the Family Context Introduction to Communication Strategies Practice Intake interview, using flow chart to choose modules and completing data sheets (role play complete first session).
Session 4 (3 hours)	Coach Boundaries Safety Role play 1 brief scripts each including completing Goal Progress Form & follow up with ParentSquare Wrap-up and review (follow-up on any topics on which coaches want more guidance)

All peer navigators also completed the “Community Partner Research Ethics Training (CPRET)” through the University of Pittsburgh CTSI (https://ctsi.pitt.edu/education-training/community-partners-research-ethics-training/). This is a program intended for community partners who are actively involved in research with human subjects, so that they can learn about conducting research that is ethical and safe. While engaged in active coaching, peer navigators participated in regular supervision meetings with study staff, as supervised by a licensed psychologist. Meetings involved a combination of didactics on identified topics (e.g., caregiver engagement, cross-cultural communication), case presentations, and group troubleshooting. If needed, the research team assisted the peer navigator by providing supervision, consultation, or access to additional resources.

Comparison Group (MTG Resources-only). Families in the resources only group did not receive coaching from a peer navigator. Once randomized into the comparison group (Resources Only) caregivers received a link to the Family Resource Binder containing all the MTG materials, along with a handout describing how to access and use the on-line version of the Family Resource Binder.

Setting/Recruitment

Recruitment occurred through Autism Intervention Research Network on Behavioral Health (AIR-B) Network affiliated universities. To increase research participation for historically marginalized groups from lower resourced, minoritized, non-english or English as second language learners communities, we worked with community partners to ensure diverse recruitment. Local Institutional Review Boards at each participating site approved the study procedures.

Participants

Caregivers of children on the autism spectrum. Participants included primary caregivers of children between the ages of 2 and 7 years with a medical diagnosis or educational classification of autism (confirmed through record review). The age range was broad to include children who receive the diagnosis at a later age (4-5 years old). Inclusion criteria were: (1) child was not receiving any autism-specific services (e.g., high-intensity applied behavior analysis or special instruction); (2) family annual household income was at or below 250% of the federal poverty level; (3) caregiver spoke English, Korean or Spanish; and (4) caregiver was willing to participate in the program for 12 weeks. Income criteria were set based upon the study aims of evaluating an intervention focused on reducing engagement barriers for under-represented families. There were no exclusion criteria regarding the child’s intellectual functioning, autism characteristics, communication skills, or co-occurring conditions. Caregivers could not participate if the child was in an out-of-home placement.

One hundred and twenty-five caregivers of children on the autism spectrum participated over two years. Eighty-three percent of caregivers identified as female, with an average age of 34.22 years (SD= 8.43). Caregivers provided their racial identities, where 35.2% identified as White, 27.2% identified as Black/African American, 6.4% identified as Asian American/Pacific Islander, 19.2% identified as Multiple Races, and 12% preferred not to answer. Thirty-four percent of caregivers identified as Hispanic/Latinx and 12% preferred not to answer. In keeping with the study aims, 92% of families earned less than USD $50,000 per year and 8% did not want to disclose their income. Eighteen families received the program in Spanish and five in Korean in Los Angeles, one family in Spanish in Rochester and five families in Spanish in Sacramento. Children’s average age at study entry was 4.16 years (SD= 1.91) and the majority were male (70.4%). See Table 3.

Table 3. Family Characteristics

Average (SD)	Total	Non-Parent Coaching	Parent Coaching	p-value
	n=125	n=63	n=62
Caregiver Age (Years)	34.22 (8.43)	34.17 (7.10)	34.26 (9.68)	0.582
Gender: n (%)				0.713
Female	104 (83%)	54 (85.7%)	50 (80.6%)
Male	12 (10%)	5 (7.9%)	7 (11.3%)
Do not wish to disclose	9 (7%)	4 (6.4%)	5 (8.1%)
Ethnicity: n (%)				0.529
Not Hispanic or Latino	67 (53.6%)	32 (50.8%)	35 (56.5%)
Hispanic or Latino	43 (34.4)	24 (38.1%)	19 (30.6%)
Prefer not to answer	15 (12%)	7 (11.1%)	8 (12.9%)
Race: n (%)				0.926
African American	34 (27.2%)	15 (23.8%)	19 (30.6%)
Asian	8 (6.4%)	4 (6.3%)	4 (6.4%)
Caucasian	44 (35.2%)	24 (38.1%)	20 (32.3%)
Other/Multiracial	24 (19.2%)	12 (19.1%)	12 (19.4%)
Prefer not to answer	15 (12%)	8 (12.7%	7 (11.3%)
English as Primary Language: n (%)				0.093
No	36 (29%)	23 (36.5%)	13 (21%)
Yes	80 (64%)	36 (57.1%)	44 (71%)
Prefer not to answer	9 (7%)	4 (6.4%)	5 (8%)
Income: n (%)				0.787
$9, 999 or less	23 (18.4%)	12 (19%)	11 (17.7%)
$10, 000 - 19, 999	29 (23.2%)	13 (20.6%)	16 (25.8%)
$20, 000 - 29, 999	20 (16%)	12 (19%)	8 (12.9%)
$30, 000 - 39, 999	20 (16%)	11 (17.5%)	9 (14.5%)
$40, 000 - 49, 999	11 (8.8%)	4 (6.4%)	7 (11.3%)
>$50, 000	12 (9.6%)	7 (11.1%)	5 (8.1%)
Do Not Wish to Disclose	10 (8%)	4 (6.4%)	6 (9.7%)
Child's Age (Years)	4.16 (1.91)	3.97 (1.90)	4.37 (1.91)	0.218
Child's Gender: n (%)				0.776
Female	27 (21.6%)	15 23.8%)	12 (19.4%)
Male	88 (70.4%)	44 (69.8%)	44 (71%)
Do Not Wish to Disclose	10 (8%)	4 (6.4%)	6 (9.6%)

Peer Navigators. Twenty-six peer navigators participated. Peer navigators were recruited through community partners, advocacy groups, and social media. Each site made efforts to recruit peer navigators who were culturally and linguistically representative of their communities. Peer navigator eligibility included: (1) status as a primary caregiver of a child aged nine years or older, diagnosed with autism or other developmental disability at least five years prior; (2) prior experience working with caregivers and/or demonstrated understanding of how to navigate the local service system; (3) fluency in English, Spanish or Korean. Peer navigators were paid an hourly rate for the work on MTG.

Table 4. Peer Coach Characteristics

	Total
Average (SD)	n=26
Age	48.19 (10.17)
Gender: n (%)
Female	25 (96%)
Male	1 (4%)
Ethnicity: n (%)
Hispanic or Latino	7 (27%)
Not Hispanic or Latino	18 (69%)
Do Not Wish to Disclose	1 (4%)
Race: n (%)
African American	6 (23%)
Asian American/Pacific Islander	1 (4%)
Caucasian	8 (31%)
Other/Multiracial	8 (31%)
Do Not Wish to Disclose	3 (11%)
Has experience working as peer coach: n (%)	13 (50%)
Educational Level: n (%)
High School/GED	2 (8%)
Some College	7 (27%)
2 Year College Degree	3 (11%)
4 Year College Degree	7 (27%)
Master's Degree	7 (27%)

Almost all peer navigators identified as female (96%). Peer navigators identified as White (31%), Black/African American (23%), Asian American/Pacific Islander (4%), Multiple Races (31%), or did not want to disclose their race (11%). Twenty-seven percent identified as Hispanic/Latinx (See Table 4).

Consent and Randomization. An initial meeting between the caregiver and member of the research team included: a) provision of consent; b) review of documentation confirming community diagnosis; and c) completion of caregiver intake questionnaires. Once consented the statistician randomized families to receive MTG (MTG content plus peer navigator) or MTG Resources-only. Caregivers randomized to MTG were assigned a peer navigator based on preferences shared during the first research call, and coach availability (see Table 1 in Supplement). Families in the comparison group received a link to the Family Resource Binder and information on how to use the materials. See the consort diagram (Figure 1).

MEASURES

Primary Outcome: Service Access

To better understand the impact of MTG on caregivers’ experience navigating the autism service system, we tracked monthly changes in the type and frequency of school-based and community services the family received, as measured through a Service and Community Resource Access Form.

Service and Community Resource Access Form. Via a monthly, structured telephone interview with research staff, caregivers identified all services their child was receiving in their school or community, as well as any services the caregiver was attempting to access for their child (e.g., on a waitlist). Uptake of new services was defined as: (1) new service was not listed or did not start during the previous month’s telephone interview; (2) caregivers identified that they started the new service at the time of interview; and (3) start date of the new service occurred during the month of the interview. In addition, the time to new service is defined as time of randomization to time of first new service listed.

Secondary Outcomes: Caregiver Support Network; Family Empowerment

We measured two secondary outcomes: caregiver social network and caregiver empowerment.

Caregiver Social Network Size & Type. Caregiver social network outcomes included family/community network size, professional network size and total network size (26). These were measured using an egocentric network survey including the number and type of social connections the caregiver had in their support network (Wasserman et al 1994). Each network survey was conducted individually, either in-person, via phone, or zoom, with the interviewer asking questions to the caregiver about their network. Network interviews with caregivers were approximately 5 to 20 minutes in length, depending on the number of people named in the caregiver’s network. Each caregiver was asked two “name generator” questions (27) to identify the people in their support network. The first question asked caregivers to identify up to 5 people from home/community who helped them and their family with key support related to their child's autism during the past two months. Examples were provided. Family/community network size was the number of family/community supporters identified by the participant. The second question asked caregivers to identify up to 5 professionals who helped them and their family with key support related to their child's autism during the past two months. Examples were provided. Professional network size was the number of professional supporters identified by the participant. For each name generated, several additional questions were asked that characterize the people in each participant's network. Total network size was the sum of all people identified by the caregiver, including up to 5 home/community people and up to 5 professional people.

Family Empowerment Scale (FES). Caregiver empowerment was measured across the home, in the community, and with service providers, using the Family Empowerment Scale - FES (16). This is a 34-item measure that measures empowerment in families with children who have emotional, behavioral, or developmental disorders. The FES has three subscales, Family, Service System, and Social Politics. Higher scores indicate higher family empowerment. Total scores for each subscale were used in the analyses.

Implementation Outcomes

We included two implementation outcomes, peer navigator MTG fidelity and MTG dosage, measured by caregiver attendance in peer navigator sessions. Both measures were collected via self-report by peer navigators using a fidelity checklist developed for this program and peer navigator fidelity was also measured using audio recorded session that were coded for fidelity by the research team.

Peer Navigator MTG Fidelity. Peer navigator fidelity to the MTG process was measured in two ways. A general session agenda (included in supplement) and data tracking sheet was used to assess (1) peer navigator self-rated fidelity to the program and (2) 25% of sessions (randomly selected) were audio recorded and coded by the research team. For self-rated fidelity, peer navigators completed the tracking sheet during or immediately following their session with the participating family. For research rated fidelity, 3 sessions (out of a possible 12) were chosen using a random number generator for each navigator/family dyad. Peer navigators were asked to record the randomly selected sessions which were subsequently coded for fidelity using the sessions checklist. Peer navigators tracked caregiver attendance (i.e., attended, cancelled, no show). Audio recordings were coded for reliability by an independent coder.

MTG Dosage. Peer navigators tracked caregiver attendance (i.e., attended, cancelled, no show).

Data Analysis

We used Cox proportional hazards model to evaluate treatment effect on time to new services (primary outcome). Not all families started new service during the treatment phase; hence, whether families started new service is the censoring variable. We used generalized linear mixed models to evaluate treatment effect on secondary outcomes (i.e. social network size and family empowerment scale). Subject level random intercepts models were used to model the longitudinal outcomes, employing an identity link for continuous outcome variables and log link function for count variables. All models controlled for the site main effect. Significance was determined by a p-value <0.05.

Primary Outcome: Uptake of New Service

There were no group differences in the time to first new service (Z=-1.019, p = 0.308, cox PH). There were also no group differences in uptake of additional new services (${\chi }_{1}^{2}$=0.03, p = 0.87). See Fig. 2. Time to first new service was similar for both groups (overall median = XX days).

Secondary Outcome: Caregiver Support Network

There was no statistically significant change in family/community network size from baseline to exit (Fig. 3A); however, there was a statistically significant change in professional network size for caregivers in MTG vs. the comparison group (Fig. 3B). On average, families in MTG increased their professional network size more than the comparison group (F(1,91) = 3.71, p = 0.05) from baseline to exit.

Secondary Outcome: Family Service Empowerment

On average, all the parents improved in service empowerment from pre to post (p < 0.001). However, there was a significant difference in improvement in average service empowerment by treatment group (p = 0.039; See Fig. 4) where MTG participants improved in comparison to control. The treatment effect did not differ by site (p = 0.421).

Implementation Outcomes

Implementation findings suggest that peer navigator implemented the MTG intervention with high fidelity, with caregivers in the MTG Program group reporting greater access of MTG materials than the caregivers in the comparison group. Caregiver dosage, measured by number of sessions attended, varied significantly by site.

Peer Navigator MTG Fidelity. Peer navigators implemented the MTG Program with high fidelity. The average self-rated fidelity across sessions was 85.7% (SD = 13). Twenty percent of each peer navigator’s sessions were coded for reliability by an independent coder with 95% agreement. Research rated fidelity was 83.9% (SD = .14) across sites.

MTG Dosage. The average number of attended peer navigator sessions for caregivers showed significant variation across sites (p = 0.043). Overall, caregivers attended an average of 9.34 sessions (SD = 3.62) across the 18-weeks of MTG. Across sites, on average, caregivers in Los Angeles attended 8.67 sessions, caregivers in Rochester attended 11.4 sessions, caregivers in Philadelphia attended 8.13 sessions, and caregivers in Sacramento attended 8.47 sessions. Among the 59 subjects in MTG Program, 28 subjects (47%) used the MTG videos at least once during the study. On average, control parents used the videos 17.74% (SD = 23.4%) of the weeks during the study (pre to post intervention); min = 0%, max = 80%.

While there were no statistically significant differences in service access, families in the treatment group significantly increased professional networks and service empowerment. To our knowledge, only one other study using social network measures has demonstrated an increase in network connections following a psychosocial intervention (Gesell et al., 2015). Furthermore, we are not aware of any other network intervention studies that have demonstrated an increase in professional networks specifically, let alone with autism professionals. Having increased professional networks may be especially helpful for historically marginalized and minoritized families of autistic children because access to multiple professionals could increase caregiver empowerment and quality of care.

Statistically significant increases in caregiver empowerment occurred in the MTG Program group as compared to the MTG Resource-only comparison group. Given that marginalized families of autistic children report lower quality of care in autism services (Smith et al., 2020), this finding suggests that the MTG Program helped to support health equity for this population. Historically marginalized families report significant challenges advocating for services, often due to implicit bias, structural racism and lack of experiences with the service system (25, 28). Increasing service empowerment has the potential to lead to increased advocacy and service access in the future, even if immediate service access did not increase.

MTG was created in partnership with community members with an intention to reduce barriers for families typically under-represented in research (e.g., flexibility in location or modality of session, scheduling, using multiple languages etc.), and in doing so made the program accessible to a broad range of families. Anecdotally, several non-English speaking families in this study shared with us that the first research study they ever participated in was MTG. This is not surprising, as most research studies to date have not provided language accommodations to linguistic minorities. More often, participants that lacked fluent English skills were excluded from participating. To support the increasing number of linguistic minority families of children on the autism spectrum, there must be intentional efforts to include these families in research and to empower linguistic minority parents to become peer navigators.

However, even though all families progressed in the program, challenges with consistency of keeping peer navigator appointments, consistent access to the MTG materials and challenges decreasing time to service access still remained challenges for under-resourced and marginalized families. Some difficulties increasing service access may stem from systemic barriers, including limited access to service providers who accept public insurance (29), the fact that school systems in high poverty areas may have fewer autism specific resources or educators with autism expertise (30), and the existence of extensive waiting lists for autism services. Additionally, competing demands related to childcare, working multiple jobs, and having limited social support may add to challenges while attending appointments and accessing services. Additional work needs to be done to adapt current systems to meet the needs of families who do not have traditional schedules and support.

Future directions of this work should extend evaluation of Mind the Gap efficacy and impact in authentic settings, via community implementation of the program. Successful implementation of public health programs (like Mind the Gap) that can be supported through existing community agencies and funding streams are more likely to have adequate reach and sustainability, thereby promoting more overall positive outcomes. Existing and future data on Mind the Gap may warrant exploration into how established state and federal funding streams can be deployed to ensure equitable access to navigator-mediated caregiver support models, which have gained significant empirical support over the past decade.

Limitations

The following study limitations should be considered. Both primary and secondary outcome measures relied on self-report rather than systematic observations or multiple person-report. The primary outcome was developed for this study so it was not a validated measure. The short time frame for the study could have precluded differences in service access due to intake time and waitlists. Self-report for networks could introduce recall bias. To address this, interviews were used for data collection, which is considered the gold standard of data collection for egocentric network data (31). Implementation outcomes were measured using both self-report and observation. It should be noted that there is still a shortage of research personnel that can serve as cultural liaisons connecting families to research teams. These unique roles may not be entirely replaced by community partnerships alone, as community partners’ time and priorities outside of research should be respected. To make research accessible and not burdensome to community members, we need to recruit culturally diverse investigators who can dedicate time and effort to research as well as understand the communities we are trying to serve.

While results suggest that MTG peer navigator support intervention did not significantly impact the time to service access, the MTG intervention did improve caregiver connections to professional supporters and caregiver service empowerment, key factors likely to impact the quality and quantity of service provisions for children on the autism spectrum. More research is needed to determine the potentially cascading effects of increased connections and empowerment with service professionals on later management and support of children on the autism spectrum, as they progress through schooling and later the transition to adulthood. Replication of findings are warranted and strategies to support adoption, implementation and maintenance in schools are needed.

Social Network Analysis (SNA); Autism Intervention Research Network on Behavioral Health (AIR-B); Community Partnered Participatory Research (CPPR)

Ethics Approval and consent to participate: Local Institutional Review Boards (IRB) at each participating site approved the study procedures, University of California, Los Angeles UCLA) and University of California, Davis sharing an IRB (IRB# 17-000029). University of Pennsylvania had their own IRB, (IRB # 824809), as did University of Rochester (IRB # 00001600). The study was conducted in compliance with the revised common rule of the United Sates Federal Policy for the Protection of Human Subjects and in accordance with the Declaration of Helsinki. Following approved IRB procedures, all participants consented to participation in this study.

Consent for Publication: Not applicable

Data Access Statement

For data sharing requests, please contact Connie Kasari, Principal Investigator.

Conflict of Interest Disclosures (includes financial disclosures): NA

Funding/Support:

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA3MC11055: Autism Intervention Research Network on Behavioral Health. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

Role of Funder/Sponsor (if any): The funder/sponsor did not participate in the work.

Clinical Trial Registration (if any): NCT03711799 Registration Date: 10/18/2018; https://clinicaltrials.gov/ct2/show/NCT03711799?type=Intr&cond=Autism&intr=Gap&age=0&draw=2&rank=2

Contributors’ Statement Page

Dr. McGhee Hassrick led the data analysis, co-designed the data collection instruments with community partners and research collaborators, drafted the initial manuscript, reviewed and revised the manuscript and submitted the paper as corresponding author for review.

Drs. Stahmer, Iadarola, Pellecchia, Gulsrud and Mandell conceptualized and designed the study, co-designed the data collection instruments with community partners and research collaborators, and drafted, reviewed, and revised the manuscript.

Dr. Shih led the data analysis, drafted the initial manuscript, reviewed and revised the manuscript.

Drs. Lee, Vejnoska, Leulmo, Morgan, and Ms. Straiton, Ms. Fitzgerald, Ms. Leon-Thomas and Ms. Garcia participated in community coordination and participation in co-designing data collection instruments, and drafted, reviewed and revised the manuscript.

Dr. Cho and Ms. Jones participated as community partners in co-designing instruments, data collection, drafted and revised the manuscript.

Dr. Kasari was the lead PI for the AIRB3 study that conducted the randomized control trial reported in this paper, conceptualized and designed the study, co-designed the data collection instruments with community partners and research collaborators, and drafted, reviewed, and revised the manuscript.

All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Acknowledgments: First and foremost, we would like to thank the families and educational teams that participated in this study. We are extremely grateful to our community partners, without them this work would have not been possible. For Los Angeles, these were: Healthy African American Families, Los Angeles Unified School District (especially James Koontz, Ed.D. and Lela Rondeau), Spectrum of Hope Foundation, Fiesta Educativa, South Central Los Angeles Regional Center and Westside Regional Center. For Davis, these were: Alta California Regional Center, Elk Grove Unified School District, Fiesta Educativa, Sacramento County Office of Education, San Juan Unified School District, Solano County Office of Education and Warmline Family Resource Center. For Philadelphia, these were: the School District of Philadelphia, Elwyn Seedlings, Easter Seals, Special People in the Northeast (SPIN), Vision for Equality, La Salle LADDER, Children’s Hospital of Philadelphia (CHOP) Early Head Start, and Intercommunity Action. For Rochester, these were: Starbridge, Common Ground Health, Rochester City School District, Mary Cariola Center, Rochester Association for the Education of Young Children, New York State Office of Persons with Developmental Disabilities, Roosevelt Children's Center, Monroe #1 BOCES and Livingston-Wyoming Arc.

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No competing interests reported.

ConsortForm1of2Checklist3.pdf

Improving Service Access for Under-resourced Parents of Children on the Autism Spectrum: a Randomized Controlled Trial

Status:

Version 1

Abstract

Figures

BACKGROUND

METHODS

RESULTS

Primary Outcome: Uptake of New Service

Secondary Outcome: Caregiver Support Network

Secondary Outcome: Family Service Empowerment

Implementation Outcomes

DISCUSSION

Limitations

CONCLUSION

Abbreviations

Declarations

References

Additional Declarations

Supplementary Files

Status:

Version 1