Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable

Suzannah Iadarola, Melanie Pellecchia, Aubyn Stahmer, Hyon Soo Lee, Lindsay Hauptman, Elizabeth McGhee Hassrick, Samantha Crabbe, Sarah Vejnoska, Elizabeth Morgan, Heather Nuske, Paul Luelmo, Chris Friedman, Connie Kasari, Amanda Gulsrud, David Mandell, Tristram Smith, Suzannah Iadarola, Melanie Pellecchia, Aubyn Stahmer, Hyon Soo Lee, Lindsay Hauptman, Elizabeth McGhee Hassrick, Samantha Crabbe, Sarah Vejnoska, Elizabeth Morgan, Heather Nuske, Paul Luelmo, Chris Friedman, Connie Kasari, Amanda Gulsrud, David Mandell, Tristram Smith

Abstract

Introduction: Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial.

Methods: MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various "modules," which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches).

Results: We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes.

Conclusion: Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD.

Trial registration: This study is registered with ClinicalTrials.gov: NCT03711799.

Keywords: Autism spectrum disorder; caregiver education; disparities; service access.

Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

© The Author(s) 2020.

Figures

Fig. 1
Fig. 1
CONSORT Diagram
Fig. 2
Fig. 2
Within-Treatment Digital Engagement

References

    1. Kasari C, Freeman S, Paparella T, Wong C, Kwon S, Gulsrud AJCNJoTE. Early intervention on core deficits in autism. 2005.
    1. Kasari C, Siller M, Huynh LN, Shih W, Swanson M, Hellemann GS, et al. Randomized controlled trial of parental responsiveness intervention for toddlers at high risk for autism. 2014;37(4):711-21.
    1. Iovannone R, Dunlap G, Huber H, Kincaid D. Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities. 2003;18(3):150–165. doi: 10.1177/10883576030180030301.
    1. DePape A-M, Lindsay SJQhr. Parents’ experiences of caring for a child with autism spectrum disorder. 2015;25(4):569-83.
    1. Brewer AJSS, Medicine. “We were on our own”: Mothers' experiences navigating the fragmented system of professional care for autism. 2018;215:61-8.
    1. Liptak GS, Benzoni LB, Mruzek DW, Nolan KW, Thingvoll MA, Wade CM, et al. Disparities in diagnosis and access to health services for children with autism: data from the National Survey of Children's Health. Journal of Developmental & Behavioral Pediatrics. 2008;29(3):152–160. doi: 10.1097/DBP.0b013e318165c7a0.
    1. Mandell DS, Listerud J, Levy SE, Pinto-Martin JA. Race differences in the age at diagnosis among Medicaid-eligible children with autism. Journal of the American Academy of Child & Adolescent Psychiatry. 2002;41(12):1447–1453. doi: 10.1097/00004583-200212000-00016.
    1. Magaña S, Lopez K, Aguinaga A, Morton H. Access to diagnosis and treatment services among Latino children with autism spectrum disorders. Intellectual and developmental disabilities. 2013;51(3):141–153. doi: 10.1352/1934-9556-51.3.141.
    1. Pickard KE, Ingersoll BR. Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use. Autism. 2016;20(1):106–115. doi: 10.1177/1362361315569745.
    1. Stahmer AC, Vejnoska S, Iadarola S, Straiton D, Segovia FR, Luelmo P, et al. Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services. 2019:1-22.
    1. Howell E, Lauderdale-Littin S, Blacher JJAJoA, Disabilities R. Family impact of children with autism and asperger syndrome: A case for attention and intervention. 2015;1(2):1008.
    1. Kuhlthau K, Orlich F, Hall TA, Sikora D, Kovacs EA, Delahaye J, et al. Health-related quality of life in children with autism spectrum disorders: Results from the autism treatment network. 2010;40(6):721-9.
    1. Hayes SA, Watson SLJJoa, Disorders D. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. 2013;43(3):629-42.
    1. Karst JS, Van Hecke AV. Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical child and family psychology review. 2012;15(3):247–277. doi: 10.1007/s10567-012-0119-6.
    1. McStay R, Trembath D, Dissanayake CJCDDR. Raising a child with autism: A developmental perspective on family adaptation. 2015;2(1):65-83.
    1. Grinker RR, Chambers N, Njongwe N, Lagman AE, Guthrie W, Stronach S, et al. “Communities” in Community Engagement: Lessons Learned From Autism Research in S outh K orea and S outh A frica. 2012;5(3):201-10.
    1. Burkett K, Morris E, Manning-Courtney P, Anthony J, Shambley-Ebron DJJoA, Disorders D. African American families on autism diagnosis and treatment: The influence of culture. 2015;45(10):3244-3254.
    1. Maurice C, Mannion K, Letso S, Perry LJBIT, Residential Pi, Programs CBC. Parent voices: Difficulty in accessing behavioral intervention for autism; working toward solutions. 2001;16(3):147-165.
    1. Mulligan J, MacCulloch R, Good B, Nicholas DBJSwimh. Transparency, hope, and empowerment: A model for partnering with parents of a child with autism spectrum disorder at diagnosis and beyond. 2012;10(4):311-330.
    1. Tincani M, Travers J, Boutot A. Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions. Research and Practice for Persons with Severe Disabilities. 2009;34(3-4):81–90. doi: 10.2511/rpsd.34.3-4.81.
    1. Welterlin A, LaRue RHJD, Society. Serving the needs of immigrant families of children with autism. 2007;22(7):747-760.
    1. Wellner LJL. Building Parent Trust in the Special Education Setting. 2012;41(4):16-9.
    1. Taylor JL, Hodapp RM, Burke MM, Waitz-Kudla SN, CJJoa R. disorders d. Training parents of youth with autism spectrum disorder to advocate for adult disability services: Results from a pilot randomized controlled. trial. 2017;47(3):846–857.
    1. Magaña S, Lopez K, Machalicek W. Parents Taking Action: A Psycho-Educational Intervention for Latino Parents of Children With Autism Spectrum Disorder. Family process. 2015.
    1. Magaña S, Lopez K, de Sayu RP, Miranda E. Use of promotoras de salud in interventions with Latino families of children with IDD. International Review of Research in Developmental Disabilities. 47: Elsevier; 2014. p. 39-75.
    1. Magaña S, Lopez K, Machalicek WJFp. Parents taking action: A psycho-educational intervention for Latino parents of children with autism spectrum disorder. 2017;56(1):59-74.
    1. Pellecchia M, Nuske HJ, Straiton D, Hassrick EM, Gulsrud A, Iadarola S, et al. Strategies to engage underrepresented parents in child intervention services: A review of effectiveness and co-occurring use. 2018;27(10):3141-54.
    1. Holkup PA, Tripp-Reimer T, Salois EM, Weinert CJAAins. Community-based participatory research: an approach to intervention research with a Native American community. 2004;27(3):162.
    1. Glasgow RE, Vogt TM, Boles SMJAjoph. Evaluating the public health impact of health promotion interventions: the RE-AIM framework. 1999;89(9):1322-7.
    1. Glasgow RE, Klesges LM, Dzewaltowski DA, Bull SS, Estabrooks PJAoBM. The future of health behavior change research: what is needed to improve translation of research into health promotion practice? 2004;27(1):3-12.
    1. Kuhn JC, Carter ASJAJoO. Maternal self-efficacy and associated parenting cognitions among mothers of children with autism. 2006;76(4):564-575.
    1. Firpo YMD, A.; Garcia, M.; Caveleri, M.A., McKay, M., Chavira, D.A. Psychometric Properties of a Parent-Reported Mental Health Stigma Scale. . Western Psychological Association Convention; Burlingame, CA2012.
    1. Koren PE, DeChillo N, Friesen BJJRp. Measuring empowerment in families whose children have emotional disabilities: a brief questionnaire. 1992;37(4):305.
    1. Graves KN, Shelton TLJJoC, Studies F. Family empowerment as a mediator between family-centered systems of care and changes in child functioning: Identifying an important mechanism of change. 2007;16(4):556-66.
    1. Cooper BR, Bumbarger BK, Moore JEJPS. Sustaining evidence-based prevention programs: Correlates in a large-scale dissemination initiative. 2015;16(1):145-57.
    1. Fortuna KL, DiMilia PR, Lohman MC, Bruce ML, Zubritsky CD, Halaby MR, et al. Feasibility, acceptability, and preliminary effectiveness of a peer-delivered and technology supported self-management intervention for older adults with serious mental illness. 2018;89(2):293-305.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe