The needs of parents of children with autism spectrum disorder
A literature review
DOI:
https://doi.org/10.14528/snr.2024.58.3.3233Keywords:
child, early interventions, developmental disordersAbstract
Introduction: Autism spectrum disorders represent a category of developmental disorders characterised by severe deficits in social communication and interaction. The aim of this literature review was to examine the obstacles encountered by parents raising children with autism spectrum disorders.
Methods: Methodologically, this study represents a literature review entailing a comprehensive search of multiple databases, including CINAHL, COBISS, PubMed, SpringerLink, and Google Scholar. We used the following keywords to generate the search query: "early intervention", "autism disorder", "parents", "stress", and "diagnosis". The search protocol adhered to specific inclusion criteria, which included the following parameters: publication date between 2012 and 2022, availability of full-text articles, and text in Slovenian or English.
Results: From a total of 31217 hits that met the inclusion criteria, 14 studies were selected for the final review. The results of the review were classified into four distinct categories: (1) emotional challenges experienced by parents raising children with autism spectrum disorders, (2) obstacles faced by these parents, (3) support for parents in overcoming these challenges, and (3) aspirations and requirements expressed by parents of children with autism spectrum disorders.
Discussion and conclusion: Parents caring for children with autism spectrum disorders struggle with a range of adverse emotions and sentiments, which include but are not limited to feeling overwhelmed, scared, anxious, tired, misunderstood, and encountering obstacles when seeking information and support. Timely diagnosis of an autism spectrum disorder in a child and access to the necessary services can yield several benefits, such as promoting the child’s developmental progress, mitigating financial burdens, and fostering better coping mechanisms for parental stress.
Downloads
Metrics
References
An, S. L. (2017). Parent training occupational therapy program for parents of children with autism in Korea. Occupational Therapy International, 2017(1), Article 4741634. https://doi.org/10.1155/2017/4741634 PMid:29097966; PMCid:PMC5612610
Bezenšek, A. (2019). Model izobraževanja specialnih in rehabilitacijskih pedagogov o vedenjskem pristopu za delo z otroki z motnjami avtističnega spektra [doktorska disertacija, Univerza v Ljubljani, Pedagoška fakulteta].
Bonis, S. (2016). Stress and parents of children with autism: A review of literature. Issues in Mental Health Nursing, 37(3), 153–163. https://doi.org/10.3109/01612840.2015.1116030 PMid:27028741
Bravo-Benítez, J., Pérez-Marfil, M. N., Román-Alegre, B. & Cruz-Quintana, F. (2019) Grief experiences in family caregivers of children with Autism Spectrum Disorder (ASD). International Journal of Environmental Research and Public Health, 16(23), Article 4821. https://doi.org/10.3390/ijerph16234821 PMid:31801231; PMCid:PMC6926999
rei, N. G., Schwarz, G. N. & Klein-Tasman, B. P. (2015). Predictors of parenting stress in children referred for an autism spectrum disorder diagnostic evaluation. Journal of Developmental and Physical Disabilities, 27(5), 617–635. https://doi.org/10.1007/s10882-015-9439-z
Cooke, E., Smith, V. & Brenner, M. (2020). Parents' experiences of accessing respite care for children with autism spectrum disorder (ASD) at the acute and primary care interface: A systematic review. BMC Pediatrics, 20(1), Article 244. https://doi.org/10.1186/s12887-020-02045-5 PMid:32443974; PMCid:PMC7243332
Critical Appraisal Skills Programme (2018). CASP (Qualitative Studies and Systematic Review) Checklist. https://casp-uk.net/casp-tools-checklists/
Demšar, A., & Bakracevic, K. (2023). Depression, anxiety, stress, and coping mechanisms among parents of children with autism spectrum disorder. International Journal of Disability, Development and Education, 70(6), 994–1007. https://doi.org/10.1080/1034912X.2021.1947474
DePape, A. M. & Lindsay, S. (2015). Parents' experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. https://doi.org/10.1177/1049732314552455 PMid:25246329
Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L. & Pellicano, E., (2018). The dots just don't join up: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571–584. https://doi.org/10.1177/1362361316687989 PMid:28449587
Goh, J. X., Aishworiya, R., Chun Man Ho, R., Wang, W. & He, H. G. (2021). A qualitative study exploring experiences and support needs of parents of children with autism spectrum disorder in Singapur. Journal of Clinical Nursing, 30(21/22), 3268–3280. https://doi.org/10.1111/jocn.15836 PMid:33969552
Jarc, M. (2019). Izzivi in doživljanje staršev otrok z avtistično motnjo [magistrsko delo, Univerza v Ljubljani, Pedagoška fakulteta].
Jurišić, B. D. (2016). Otroci z avtizmom: Priročnik za učitelje in starše. Center Janeza Levca.
Jurišić, B.D. (2021). Otroci z avtizmom: Priročnik za učitelje in starše (2. izd.). Izobraževalni center Pika; Center Janeza Levca.
Kompara, Š. (2023). Razbremenilno varstvo kot podpora družinam otrok z motnjami avtističnega spektra [magistrsko delo, Univerza v Ljubljani, Pedagoška fakulteta].
Maenner, M. J., Warren, Z., Williams, A. R., Amoakohene, E., Bakian, A. V., Bilder, D. A., Durkin, M. S., Fitzgerald, R. T., Furnier, S. M., Hughes, M. M., Ladd-Acosta, C. M., McArthur, D., Pas, E. T., Salinas, A., Vehorn, A., Williams, S., Esler, A., Grzybowski, A., Hall-Lande, J., ... Shaw, K. A. (2023). Prevalence and characteristics of autism spectrum disorder among children aged 8 years: Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. Surveillance Summaries, 72(2), 1–14. https://doi.org/10.15585/mmwr.ss7202a1 PMid:36952288
Medved, N. (2019). Izkušnje staršev otrok z motnjami avtističnega spektra pri obravnavi in sodelovanju z različnimi strokovnimi službami [magistrsko delo, Univerza v Ljubljani, Pedagoška fakulteta].
Moher, D., Shamseer, L., Clarke, M., Ghersi, D., Liberati, A., Petticrew, M., Shekelle, P., & Stewart, L. A. (2015). PRISMA-P Group. Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews, 4(1), Article 1. https://doi.org/10.1186/2046-4053-4-1 PMid:25554246; PMCid:PMC4320440
Polit, D. F. & Beck, C. T. (2018). Essentials of nursing research: Appraising evidence for nursing practice (9th ed.). Lippincot Williams & Wilkins.
Reddy, G., Fewster, D. L. & Gurayah, T. (2019). Parents' voices: Experiences and coping as a paren tof child with autism spectrum disorder. South African Journal of Occupational Therapy, 49(1), 43–50. http://dx.doi.org/10.17159/2310-3833/2019/vol49n1a7
Rehberger, T. (2018). Vloga družine v zgodnji obravnavi otrok z avtizmom. Socialna pedagogika, 22(3/4), 229–254. https://www.dlib.si/details/URN:NBN:SI:DOC-IWF1M2NP
Sapiets, S. J., Tostika, V., & Hastings, R. P. (2021). Factors influencing acess to early intervention for families for children with developmental disabilities: A narrative review. Journal of Applied Research in Intellectual Disabilities, 34(3), 695–711. https://doi.org/10.1111/jar.12852 PMid:33354863; PMCid:PMC8246771
Schmidt, I., Schmidt, J. & Schmidt, M. (2017). Drama je biti starš vesoljca. Pivec. Svetovalnica za avtizem (n. d.). O avtizmu. https://www.avtizem.net/o-avtizmu
Vogrinec, J. (2013). Kvalitativno raziskovanje na pedagoškem področju. Pedagoška fakulteta, Univerza v Ljubljani.
Werdoning, A. (2019). Rezultati ankete o pojavnosti avtizma v Sloveniji v predšolskih in osnovnošolskih izobraževalnih programih.
Strokovni center za avtizem. https://www.csgmavtizem.si/wp-content/uploads/2019/09/%C4%8Clanek-zasplet-o-pojavnosti-avtizma-v-Sloveniji.pdf
Wilson, S. A., & Peterson, C. C. (2018). Medical care experiences of children with autism and their parents: A scoping review. Child: Care, Health and Development, 44(6), 807–817. https://doi.org/10.1111/cch.12611 PMid:30136407
Zakon o celostni zgodnji obravnavi predšolskih otrok s posebnimi potrebami (ZOPOPP). (2017). Uradni list RS št. 41/17 (1. 9. 2019). http://www.pisrs.si/Pis.web/pregledPredpisa?id=ZAKO7681
Zwaigenbaum, L., Bauman, M. L., Choueiri, R., Kasari, C., Carter, A., Granpeesheh, D., Mailloux, Z., Roley, S. S., Wagner, S., Fein, D., Pierce, K., Buie, T., Davis, P. A., Newschaffer, C., Robins, D., Wetherby, A., Stone, W. L., Yirmiya, N., Estes, A., ... Natowicz, M. R. (2015). Early intervention for children with autism spectrum disorder under 3 years of age: Recommendations for practice and research. Pediatrics, 136 (Suppl.1), S60–S81. https://doi.org/10.1542/peds.2014-3667E PMid:26430170; PMCid:PMC9923898
Downloads
Published
How to Cite
Issue
Section
License
Copyright (c) 2024 Slovenian Nursing Review
This work is licensed under a Creative Commons Attribution 4.0 International License.
As the author undersigned hereby, I transfer, assign, or otherwise convey the following authorship rights as comprised in the Copyright and Related Rights Act (CRRA) to the Slovenian Nursing Review, Ob železnici 30A, 1000 Ljubljana: the right of reproduction - the exclusive right to fix the work in a material medium or in another copy directly or indirectly, temporarily or permanently, by any means and in any digital form, in whole or in part (CRRA, Article 23); the right of distribution (CRRA, Article 24); the right of making a work available and accessible through the internet (CRRA, Article 32a); the right of transformation, especially the exclusive right to translate a pre-existing work (CRRA, Article 33). The transfer of author rights applies to the article in its entirety, including pictorial and/or graphic works and possible supplements. The transfer of rights is exclusive and unlimited in duration or territory.
