“It’s Such an Inclusive and Welcoming Environment”: Caregiver Perspectives of a Play-Based Program for Autistic Children and Youth

Autori

  • Sofia J. So Dalhousie University
  • Son Truong Dalhousie University
  • Kimberley Woodford Dalhousie University
  • Sarah Moore Dalhousie University

DOI:

https://doi.org/10.15273/hpj.v4i3.11983

Parole chiave:

children, youth, caregivers, play-based program, autism, therapeutic intervention

Abstract

Introduction: Play-based programs provide therapeutic benefits to children and youth with disabilities and their caregivers. However, there is limited literature regarding the effects of these programs on the physical and psychosocial outcomes for autistic children andyouth. Objective: This program evaluation examined the perspectives of caregivers of autistic children and youth ages 6–18 years in a play-based program in Nova Scotia. Methods: A qualitative case evaluation design was employed, with 10 caregivers completing semi-structured interviews. Interviews were conducted virtually using Microsoft Teams and were each approximately 60 minutes in length. Interview data were transcribed verbatim and transferred to NVivo. Data were analyzed using reflexive thematic analysis. Results: Three themes were generated: (a) Play (in Their Own Way) is Beneficial, (b) An Important Respite for Families, and (c) A Lot Can Get in the Way of Participation. Findings illustrated that caregivers perceived the program as beneficial for their child’s physical and psychosocial development skills. They also highlighted the need for family respite time to rest and recharge. Caregivers noted that there are relatively few inclusive programs specifically for autistic children, and that lack of transportation and high costs can reduce accessibility of programs. Conclusion: Play-based programs have notable caregiver-perceived benefits for autistic children and youth, but there may be barriers to participation as well. Findings of this program evaluation may help knowledge users and service providers address program barriers and inform programming moving forward.

Riferimenti bibliografici

Accessibility Act, R.S.N.S. (2017). Retrieved from https://www.nslegislature.ca/legc/bills/62nd_3rd/3rd_read/b059.htm

Anaby, D., & Pozniak, K. (2019). Participation-based intervention in childhood disability: A family-centred approach. Developmental Medicine and Child Neurology, 61(5), 502. https://doi.org/10.1111/dmcn.14156

Anderson, L. S., & Heyne, L. A. (2013). A strengths approach to assessment in therapeutic recreation: Tools for positive change. Therapeutic Recreation Journal, 47(2), 89–108.

Arbour-Nicitopoulos, K. P., James, M. E., Moore, S. A., Sharma, R., & Martin Ginis, K. A. (2022). Movement behaviours and health of children and youth with disabilities: Impact of the 2020 COVID-19 pandemic. Paediatrics & Child Health, 27(Supplement 1), S66–S71. https://doi.org/10.1093/pch/pxac007

Autism Nova Scotia (n.d.). About autism: What is autism?Retrieved July 14, 2023, from https://www.autismnovascotia.ca/about-autism/#what-is-autism

Barblett, L. (2010). Why play-based learning?Every Child,16(3), 4–5.

Basso, T., Charlop, M. H., & Gumaer, C. B. (2021). Using a functional play intervention to increase joint attention of school-aged, non-verbal children with autism spectrum disorder (ASD). International Electronic Journal of Elementary Education, 13(3), 323–331. https://doi.org/10.26822/IEJEE.2021.193

Beames, J. R., Kikas, K., O’Gradey-Lee, M., Gale, N., Werner-Seidler, A., Boydell, K. M., & Hudson, J. L. (2021). A new normal: Integrating lived experience into scientific data syntheses. Frontiers in Psychiatry, 12, Article 763005. https://doi.org/10.3389/fpsyt.2021.763005

Blau, D., & Currie, J. (2006). Pre-school, day care, and after-school care: Who’s minding the kids?Handbook of the Economics of Education, 2, 1163–1278. https://doi.org/10.1016/S1574-0692(06)02020-4

Boucher, S., Downing, J., & Shemilt, R. (2014). The role of play in children’s palliative care.Children,1(3), 302–317. https://doi.org/10.3390/children1030302

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806

Bult, M. K., Verschuren, O., Jongmans, M. J., Lindeman, E., & Ketelaar, M. (2011). What influences participation in leisure activities of children and youth with physical disabilities? A systematic review. Research in Developmental Disabilities, 32(5), 1521–1529. https://doi.org/10.1016/j.ridd.2011.01.045

Canadian Evaluation Society. (n.d.). Guidance for ethical evaluation practice. Retrieved March 5, 2024, from https://evaluationcanada.ca/career/ethical-guidance.html

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada. (2022, December). Tri-council policy statement: Ethical conduct for research involving humans—TCPS 2 (2022). Government of Canada. https://ethics.gc.ca/eng/documents/tcps2-2022-en.pdf

Chellappa, S. L. (2024). Neuroaffirming services for autistic people.The Lancet Psychiatry,11(2), 96–97. https://doi.org/10.1016/S2215-0366(23)00405-4

Cholewicki, J., Drasgow, E., & Chezan, L. C. (2019). Parental perception of quality of life for children with autism spectrum disorder.Journal of Developmental and Physical Disabilities,31(5), 575–592. https://doi.org/10.1007/s10882-019-09660-w

Creswell, J. W., & Creswell, J. D. (2018). Research design: Qualitative, quantitative, and mixed methods approaches(5th ed.). Sage Publications.

Cuzzocrea, F., Murdaca, A. M., Costa, S., Filippello, P., & Larcan, R. (2016). Parental stress, coping strategies and support in families of children with a disability. Child Care in Practice, 22(1), 3–19. https://doi.org/10.1080/13575279.2015.1064357

Donaldson, A. L., Krejcha, K., & McMillin, A. (2017). A strengths-based approach to autism: Neurodiversity and partnering with the autism community. Perspectives of the ASHA Special Interest Groups, 2(1), 56–68. http://dx.doi.org/10.1044/persp2.SIG1.56

Eshraghi, A. A., Li, C., Alessandri, M., Messinger, D. S., Eshraghi, R. S., Mittal, R., & Armstrong, F. D. (2020). COVID-19: Overcoming the challenges faced by individuals with autism and their families. The Lancet Psychiatry, 7(6), 481–483. https://doi.org/10.1016/S2215-0366(20)30197-8

Fehr, K. K., Boog, K. E., & Leraas, B. C. (2019). Play behaviors: Definition and typology. In S. Hupp & J. D. Jewell (Eds.),The encyclopedia of child and adolescent development. Wiley. https://doi.org/10.1002/9781119171492.wecad272

Home, A. (2004). The work that never ends: Employed mothers of children with disabilities. Journal of the Association for Research on Mothering, 6(2), 37–47. https://jarm.journals.yorku.ca/index.php/jarm/article/view/4920/4114

Hood, C. D., & Carruthers, C. P. (2016). Strengths-based TR program development using the Leisure and Well-Being Model: Translating theory into practice. Therapeutic Recreation Journal, 50(1), 4–20.https://doi.org/10.18666/TRJ-2016-V50-I1-6780

James, M. E., Jianopoulos, E., Ross, T., Buliung, R., & Arbour-Nicitopoulos, K. P. (2022). Children’s usage of inclusive playgrounds: A naturalistic observation study of play. International Journal of Environmental Research and Public Health, 19(20), Article 13648. https://doi.org/10.3390/ijerph192013648

Kakooza-Mwesige, A., Bakare, M., Gaddour, N., & Juneja, M. (2022). The need to improve autism services in lower-resource settings. The Lancet, 399(10321), 217–220. https://doi.org/10.1016/S0140-6736(21)02658-1

Karst, J. S., & Van Hecke, A. V. (2012). Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation.Clinical Child and Family Psychology Review,15(3), 247–277. https://doi.org/10.1007/s10567-012-0119-6

Kuper, H., Monteath-van Dok, A., Wing, K., Danquah, L., Evans, J., Zuurmond, M., & Gallinetti, J. (2014). The impact of disability on the lives of children; Cross-sectional data including 8,900 children with disabilities and 898,834 children without disabilities across 30 countries. PLOS ONE, 9(9), Article e107300. https://doi.org/10.1371/journal.pone.0107300

Larsen, L., Helland, M. S., & Holt, T. (2022). The impact of school closure and social isolation on children in vulnerable families during COVID-19: A focus on children’s reactions. European Child & Adolescent Psychiatry, 31(8), 1–11. https://doi.org/10.1007/s00787-021-01758-x

Learningo. (n.d.). Learningo—Community, recreation and education society.Retrieved October 20, 2024, from https://learningo.org/

Lee, E. A. L., Scott, M., Black, M. H., D’Arcy, E., Tan, T., Sheehy, L., Bölte, S., & Girdler, S. (2024). “He sees his autism as a strength, not a deficit now”: A repeated cross-sectional study investigating the impact of strengths-based programs on autistic adolescents. Journal of Autism and Developmental Disorders, 54(5), 1656–1671. https://doi.org/10.1007/s10803-022-05881-9

Loades, M. E., Chatburn, E., Higson-Sweeney, N., Reynolds, S., Shafran, R., Brigden, A., Linney, C., McManus, M. N., Borwick, C., & Crawley, E. (2020). Rapid systematic review: The impact of social isolation and loneliness on the mental health of children and adolescents in the context of COVID-19. Journal of the American Academy of Child and Adolescent Psychiatry, 59(11), 1218–1239.e3. https://doi.org/10.1016/j.jaac.2020.05.009

Masi, A., Mendoza Diaz, A., Tully, L., Azim, S. I., Woolfenden, S., Efron, D., & Eapen, V. (2021). Impact of the COVID-19 pandemic on the well-being of children with neurodevelopmental disabilities and their parents. Journal of Paediatrics and Child Health, 57(5), 631–636. https://doi.org/10.1111/jpc.15285

Moore, S. A., & Phelan, S. K. (2021). Using longitudinal trajectories and reference percentiles for participation in activities for children with disabilities: An evidence to practice commentary.Physical & Occupational Therapy in Pediatrics,41(1), 38–43. https://doi.org/10.1080/01942638.2021.1853440

Moore, S. A., Sharma, R., Martin Ginis, K. A., & Arbour-Nicitopoulos, K. P. (2021). Adverse effects of the COVID-19 pandemic on movement and play behaviours of children and youth living with disabilities: Findings from the National Physical Activity Measurement (NPAM) study. nternational Journal of Environmental Research and Public Health, 18(24), Article 12950. https://doi.org/10.3390/ijerph182412950

Parchomiuk, M. (2022). Work-family balance and satisfaction with roles in parents of disabled children. Community, Work & Family, 25(3), 353–373. https://doi.org/10.1080/13668803.2020.1764499

Posavac, E. J. (2011). Program evaluation: Methods and case studies(8th ed.). Routledge. https://doi.org/10.4324/9781315664972

Putri, A. M., & Lutfianawati, D. (2021). Parenting stress, social support, and parental characteristic in parents of ASD children. International Journal of Early Childhood Special Education, 13(1), 144–151. https://doi.org/10.9756/INT-JECSE/V13I1.211017

Raghavendra, P., Virgo, R., Olsson, C., Connell, T., & Lane, A. E. (2011). Activity participation of children with complex communication needs, physical disabilities and typically-developing peers. Developmental Neurorehabilitation, 14(3), 145–155. https://doi.org/10.3109/17518423.2011.568994

Ratcliff, K., Hong, I., & Hilton, C. (2018). Leisure participation patterns for school age youth with autism spectrum disorders: Findings from the 2016 National Survey of Children’s Health. Journal of Autism and Developmental Disorders, 48(11), 3783–3793. https://doi.org/10.1007/s10803-018-3643-5

Ray, D., Bratton, S., Rhine, T., & Jones, L. (2001). The effectiveness of play therapy: Responding to the critics.International Journal of Play Therapy,10(1), 85–108. https://doi.org/10.1037/h0089444Reichman, N. E., Corman, H., & Noonan, K. (2008). Impact of child disability on the family.Maternal and Child Health Journal,12(6), 679–683. https://doi.org/10.1007/s10995-007-0307-z

Schopler, E., & Mesibov, G. B. (Eds.). (2013).The effects of autism on the family. Springer. https://doi.org/10.1007/978-1-4899-2293-9Statistics Canada. (2018, November 28). Canadian survey on disability, 2017. https://www150.statcan.gc.ca/n1/daily-quotidien/181128/dq181128a-eng.htm

Teachman, G., & Gibson, B. E. (2013). Children and youth with disabilities: Innovative methods for single qualitative interviews. Qualitative Health Research, 23(2), 264–274. https://doi.org/10.1177/1049732312468063

Tesfaye, R., Courchesne, V., Mirenda, P., Mitchell, W., Nicholas, D., Singh, I., Zwaigenbaum, L., & Elsabbagh, M. (2023). Autism voices: Perspectives of the needs, challenges, and hopes for the future of autistic youth. Autism, 27(4), 1142–1156. https://doi.org/10.1177/13623613221132108

Urbanowicz, A., Nicolaidis, C., den Houting, J., Shore, S. M., Gaudion, K., Girdler, S., & Savarese, R. J. (2019). An expert discussion on strengths-based approaches in autism. Autism in Adulthood, 1(2), 82–89. https://doi.org/10.1089/aut.2019.29002.aju

Whitmore, K. E. (2016). Respite care and stress among caregivers of children with autism spectrum disorder: An integrative review. Journal of Pediatric Nursing, 31(6), 630–652. https://doi.org/10.1016/j.pedn.2016.07.009

Whitmore, K. E., & Snethen, J. (2018). Respite care services for children with special healthcare needs: Parental perceptions. Journal for Specialists in Pediatric Nursing, 23(3), Article e12217. https://doi.org/10.1111/jspn.12217

Woodmansee, C., Hahne, A., Imms, C., & Shields, N. (2016). Comparing participation in physical recreation activities between children with disability and children with typical development: A secondary analysis of matched data. Research in Developmental Disabilities, 49–50, 268–276. https://doi.org/10.1016/j.ridd.2015.12.004

Pubblicato

2024-11-28

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