Family Focus Groups to Refine an Online Intervention to Support Interactions Between Siblings With and Without Autism

Abstract

Children with autism spectrum disorder (ASD) experience differences in social communication skills which are reflected in their interactions with others, including family members. Family-based interventions can support interactions and improve developmental outcomes. Using a person-based approach, we obtained feedback and perspectives from family members’ related to the Speak, Play & Listen intervention—an online, family-mediated intervention to support social communication development for children with ASD. The Speak, Play & Listen intervention uses a cascading model where a researcher supports the parent who then trains and coaches siblings without ASD during play with their sibling with ASD. We conducted a formative qualitative research study to improve and refine the Speak, Play & Listen intervention using four focus groups to obtain feedback. Focus groups included parents of children with ASD (two groups; N = 14), as well as siblings without ASD ages 13 to 17 (one group; N = 7) and ages 18 to 21 (one group; N = 9). Results included parent and sibling perceptions related to positive features, benefits, and potential challenges of the intervention, as well as suggestions to improve the intervention.

Keywords

family-mediated intervention social communication autism online delivery intervention refinements

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References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Author.

Beffel

J. H.

Gerde

H. K.

Nuttall

A. K.

(2021). Siblings and interventions: How siblings influence development and why practitioners should consider including them in interventions. Early Childhood Education Journal, 20, 1439–1448. https://doi.org/10.1007/s10643-021-01273-3

Biggs

E. E.

Meadan

(2018). Early communication interventions for young children with intellectual and developmental disabilities: The roles of natural communication partners. International Review of Research in Developmental Disabilities, 55, 1–37. https://doi.org/10.1016/bs.irrdd.2018.08.005

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 37(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Casagrande

K. A.

Ingersoll

B. R.

(2017). Parent-mediated interventions for social communication in young children with ASD. In Leaf

J. B.

(Ed.), Handbook of social skills and autism spectrum disorder (pp. 285–312). Springer.

Chazin

K. T.

Ledford

J. R.

Wilson-Moses

J. M.

Rajaraman

Juárez

A. P.

(2024). Centering autistic perspectives: Social acceptability of goals, learning contexts, and procedures for young autistic children. Journal of Autism and Developmental Disorders, 55, 812–831. https://doi.org/10.1007/s10803-024-06242-4

Cheng

W. M.

Smith

T. B.

Butler

Taylor

T. M.

Clayton

(2022). Effects of parent-implemented interventions on outcomes of children with autism: A meta-analysis. Journal of Autism and Developmental Disorders, 53, 4147–4163. https://doi.org/10.1007/s10803-022-05688-8

Critchley

Cuadros

Harper

Smith-Howell

Rogish

(2021). A parent-sibling dyadic interview to explore how an individual with autism spectrum disorder can impact family dynamics. Research in Developmental Disabilities, 111, 103884. https://doi.org/10.1016/j.ridd.2021.103884

Dansby

R. A.

Turns

Whiting

J. B.

Crane

(2018). A phenomenological content analysis of online support seeking by siblings of people with autism. Journal of Family Psychotherapy, 29(3), 181–200. https://doi.org/10.1080/08975353.2017.1395256

10.

Division for Early Childhood. (2014). DEC recommended practices: Enhancing services for young children with disabilities and their families. https://www.dec-sped.org/product-page/dec-recommendedpractices-enhancing-services-for-young-children.

11.

Douglas

S. N.

Bagawan

West

(2023). A theory-generating qualitative meta-synthesis to understand neurotypical sibling perceptions of their relationship with siblings with autism spectrum disorders. Review Journal of Autism and Developmental Disorders, 11, 667–681. https://doi.org/10.1007/s40489-023-00360-y

12.

Douglas

S. N.

Meadan

Biggs

E. E.

Bagawan

Terol

A. K.

(2022). Building family capacity: Supporting multiple family members to implement aided language modeling. Journal of Autism and Developmental Disorders, 53, 2587–2599. https://doi.org/10.1007/s10803-022-05492-4

13.

Ferraioli

S. J.

Hansford

Harris

S. L.

(2012). Benefits of including siblings in the treatment of autism spectrum disorders. Cognitive and Behavioral Practice, 19(3), 413–422. https://doi.org/10.1016/j.cbpra.2010.05.005

14.

Glugatch

L. B.

Machalicek

(2021). Examination of the effectiveness and acceptability of a play-based sibling intervention for children with autism: A single-case research design. Education and Treatment of Children, 44(4), 249–267. https://doi.org/10.1007/s43494-021-00043-5

15.

Guest

MacQueen

K. M.

Namey

E. E.

(2012). Applied thematic analysis. Sage.

16.

Holt

Denford

Bowers

Kuberka

Muller

Amlot

Yardley

(2025). The person-based approach to intervention development: A scoping review of methods and applications. Digital Health, 11, 1–15. https://doi.org/10.1177/20552076241305934

17.

Kovshoff

Cebula

Tsai

H.-W. J.

Hastings

R. P.

(2017). Siblings of children with autism: The siblings embedded systems framework. Current Developmental Disorders Reports, 4(2), 37–45. https://doi.org/10.1007/s40474-017-0110-5

18.

Krueger

R. A.

Casey

M. A.

(2015). Focus group: A practical guide for applied research (5th ed.). Sage.

19.

Kryzak

L. A.

Jones

E. A.

(2017). Sibling self-management: Programming for generalization to improve interactions between typically developing siblings and children with autism spectrum disorders. Developmental Neurorehabilitation, 20(8), 525–537. https://doi.org/10.1080/17518423.2017.1289270

20.

Levante

Martis

Del Prete

C. M.

Martino

Pascali

Primiceri

Vergari

Lecciso

(2023). Parentification, distress, and relationship with parents as factors shaping the relationship between adult siblings and their brother/sister with disabilities. Frontiers in Psychiatry, 13, 1079608. https://doi.org/10.3389/fpsyt.2022.1079608

21.

Maye

Boyd

B. A.

Martínez-Pedraza

Halladay

Thurm

Mandell

D. S.

(2022). Biases, barriers, and possible solutions: Steps towards addressing autism researchers under-engagement with racially, ethnically, and socioeconomically diverse communities. Journal of Autism and Developmental Disorders, 52(9), 4206–4211. https://doi.org/10.1007/s10803-021-05250-y

22.

Meadan

Stoner

J. B.

Angell

M. E.

(2010). Review of literature related to the social, emotional, and behavioral adjustment of siblings of individuals with autism spectrum disorder. Journal of Developmental and Physical Disabilities, 22(1), 83–100. https://doi.org/10.1007/s10882-009-9171-7

23.

Olawade

D. B.

Omeni

Gore

M. N.

Hadi

(2025). Enhancing qualitative research through virtual focus groups and artificial intelligence: A review. International Journal of Medical Informatics, 203, 106004. https://doi.org/10.1016/j.ijmedinf.2025.106004

24.

Orsmond

G. I.

Seltzer

M. M.

(2007). Siblings of individuals with autism spectrum disordersacross the life course. Mental Retardation and Developmental Disabilities Research Reviews, 13(4), 313–320. https://doi.org/10.1002/mrdd.20171

25.

Pacia

Holloway

Gunning

Lee

(2021). A systematic review of family-mediated social communication interventions for young children with autism. Review Journal of Autism and Developmental Disorders, 9(2), 208–234. https://doi.org/10.1007/s40489-021-00249-8

26.

Sheikh

Patino

Cengher

Fiani

Jones

E. A.

(2019). Augmenting sibling support with parent-sibling training in families of children with autism. Developmental Neurorehabilitation, 22(8), 542–552. https://doi.org/10.1080/17518423.2019.1629662

27.

Shivers

C. M.

Deisenroth

L. K.

Taylor

J. L.

(2013). Patterns and predictors of anxiety among siblings of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43(6), 1336–1346. https://doi.org/10.1007/s10803-012-1685-7

28.

Smithson

(2008). Focus groups. In Alasuutari

Bickman

Brannen

(Eds.), Handbook of social research methods (pp. 357–430). Sage.

29.

Teitcher

J. E.

Bockting

W. O.

Bauermeister

J. A.

Hoefer

C. J.

Miner

M. H.

Klitzman

R. L.

(2015). Detecting, preventing, and responding to “fraudsters” in internet research: Ethics and tradeoffs. The Journal of Law, Medicine & Ethics, 43(1), 116–133. https://doi.org/10.1111/jlme.12200

30.

Tomeny

T. S.

Barry

T. D.

Fair

E. C.

(2017). Parentification of adult siblings of individuals with autism spectrum disorder: Distress, sibling relationship attitudes, and the role of social support. Journal of Intellectual and Developmental Disability, 42(4), 320–331. https://doi.org/10.3109/13668250.2016.1248376

31.

Tsao

L. L.

(2020). Brothers as playmates for their siblings with developmental disabilities: A multiple-baseline design study. Child & Youth Care Forum, 49(3), 409–430. https://doi.org/10.1007/s10566-019-09534-4

32.

Tsao

L. L.

Odom

S. L.

(2006). Sibling-mediated social interaction intervention for young children with autism. Topics in Early Childhood Special Education, 26(2), 106–123. https://doi.org/10.1177/02711214060260020

33.

Turnbull

A. T.

Turnbull

H. R.

Erwin

E. J.

Soodak

L. C.

Shogren

K. A.

(2015). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. Pearson.

34.

Walton

K. M.

Ingersoll

B. R.

(2015). Psychosocial adjustment and sibling relationships in siblings of children with autism spectrum disorder: Risk and protective factors. Journal of Autism and Developmental Disorders, 45(9), 2764–2778. https://doi.org/10.1007/s10803-015-2440-7

35.

Wong

Odom

S. L.

Hume

K. A.

Cox

A. W.

Fettig

Kucharczyk

Brock

M. E.

Plavnick

J. B.

Fleury

V. P.

Schultz

T. R.

(2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism and Developmental Disorders, 45(7), 1951–1966. https://doi.org/10.1007/s10803-014-2351-z

36.

Yardley

Morrison

Bradbudy

Muller

(2015). The person-based approach to intervention development application to digital health-related behavior change interventions. Journal of Medical Internet Research, 17(1), e30. https://doi.org/10.2196/jmir.4055