Autism in the Context of Humanitarian Emergency: The Lived Experiences of Syrian Refugee Mothers of Children on the Autism Spectrum
DOI:
https://doi.org/10.25071/1920-7336.41109Keywords:
Syrian crisis, autism, Syrian refugees, resettlement, forced migrationAbstract
This study explored the resettlement experiences of Syrian refugees accessing supports and services for their autistic children in Alberta, Canada. Using interpretive phenomenological analysis (IPA), in-depth interviews with three participants led to seven shared themes regarding parental experiences with the Syrian crisis, access to supports and services, barriers to resettlement, and sentiments regarding their resettlement. Findings are explained using migrant adaptation models to situate practice within a social justice orientation by understanding the perspectives of vulnerable migrant populations. Practical implications include ways to benefit refugees, imbue culture within practice, inform policy initiatives, and highlight the importance of trauma-informed care.
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References
Abid, G. (2020, October). Literature review on best practices in government-funded services supporting the resettlement and integration of government-assisted refugees. Centre for the Study of Living Standards. http://www.csls.ca/reports/csls2020-09.pdf
Agrawal, S. K. (2019). Canadian refugee sponsorship programs: Experience of Syrian refugees in Alberta, Canada. Journal of International Migration and Integration, 20(4), 941–962. https://doi.org/10.1007/s12134-018-0640-7
Alon, R. (2019). Social support and post-crisis growth among mothers of children with autism spectrum disorder and mothers of children with Down syndrome. Research in Developmental Disabilities, 90, 22–30. https://doi.org/10.1016/j.ridd.2019.04.010
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://doi.org/10.1176.appi.books.9780890425787
Amin, M. E., Nørgaard, L. S., Cavaco, A. M., Witry, M. J., Hillman, L., Cernasev, A., & Desselle, S. P. (2020). Establishing trustworthiness and authenticity in qualitative pharmacy research. Research in Social and Administrative Pharmacy, 16(10), 1472–1482. https://doi.org/10.1016/j.sapharm.2020.02.005
Attum, B., Hafiz, S., Malik, A., & Shamoon, Z. (2021). Cultural competence in the care of Muslim patients and their families. StatPearls Publishing. https://www.ncbi.nlm.nih.gov/books/NBK499933/
Autism Alliance of Canada. (2021, May 13). Policy compendium (2021): Social inclusion, diagnosis, supports, and services & economic inclusion. https://www.autismalliance.ca/policy-compendium/
Autism Mental Health Literacy Project Group. (2021). Mental health literacy guide for autism. York University. https://www.yorku.ca/health/lab/ddmh/am-help/
Banach, M., & Couse, L. J. (2012). Interdisciplinary co-facilitation of support groups for parents of children with autism: An opportunity for professional preparation. Social Work with Groups, 35(4), 313–329. https://doi.org/10.1080/01609513.2012.671103
Berry, J. W. (1997). Immigration, acculturation, and adaptation. Applied Psychology, 46(1), 5–34. https://doi.org/10.1111/j.1464-0597.1997.tb01087.x
Bhayana, A., & Bhayana, B. (2018). Approach to developmental disabilities in newcomer families. Canadian Family Physician, 64(8), 567–573. https://www.cfp.ca/content/64/8/567
Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers’ lived experience of stigma: The voice of families with a child on the autism spectrum. Health & Social Care in the Community, 25(1), 224–233. https://doi.org/10.1111/hsc.12297
Bronfenbrenner, U., & Ceci, S. J. (1994). Nature–nurture reconceptualized in developmental perspective: A bioecological model. Psychological Review, 101(4), 568–586. https://doi.org/10.1037/0033-295x.101.4.568
Brosinsky, L., Georgis, R., Gokiert, R., Mejia, T., & Kirova, A. (2018). RAISED between cultures: New resources for working with children of immigrant or refugee background. Childhood Education, 94(2), 18–27. https://doi.org/10.1080/00094056.2018.1451686
Canadian Autism Spectrum Disorder Alliance. (2020, June). Language guide. https://www.casda.ca/wp-content/uploads/2020/07/CASDA-Language-Guide-7.pdf
Çeri, V., Nasıroğlu, S., Ceri, M., & Çetin, F. Ç. (2018). Psychiatric morbidity among a school sample of Syrian refugee children in Turkey: A cross-sectional, semi-structured, standardized interview-based study. Journal of the American Academy of Child & Adolescent Psychiatry, 57(9), 696–698.E2. https://doi.org/10.1016/j.jaac.2018.05.019
Chiumento, A., Rahman, A., Machin, L., & Frith, L. (2018). Mediated research encounters: Methodological considerations in cross-language qualitative interviews. Qualitative Research, 18(6), 604–622. https://doi.org/10.1177/1468794117730121
CMAS. (2015). Caring for Syrian refugee children: A program guide for welcoming young children and their families. https://cmascanada.ca/2015/12/12/caring-for-syrian-refugee-children-a-program-guide-for-welcoming-young-children-and-their-families/
Cormier, G. (2018). The language variable in educational research: An exploration of researcher positionality, translation, and interpretation. International Journal of Research & Method in Education, 41(3), 328–341. https://doi.org/10.1080/1743727x.2017.1307335
Creswell, J. W., & Creswell, J. D. (2018). Research design (5th ed.). Sage Publications.
Creswell, J. W., & Poth, C. N. (2018). Qualitative inquiry and research design (4th ed.). Sage Publications.
Croot, E. J., Lees, J., & Grant, G. (2011). Evaluating standards in cross-language research: A critique of Squires’ criteria. International Journal of Nursing Studies, 48(8), 1002–1011. https://doi.org/10.1016/j.ijnurstu.2011.04.007
Dababnah, S., Habayeb, S., Bear, B. J., & Hussein, D. (2019). Feasibility of a trauma-informed parent–teacher cooperative training program for Syrian refugee children with autism. Autism, 23(5), 1300–1310. https://doi.org/10.1177/1362361318805368
Dahlberg, K. (2006). The essence of essences—The search for meaning structures in phenomenological analysis of lifeworld phenomena. International Journal of Qualitative Studies on Health and Well-Being, 1(1), 11–19. https://doi.org/10.1080/17482620500478405
Fossey, E., Harvey, C., McDermott, F., & Davidson, L. (2002). Understanding and evaluating qualitative research. Australian & New Zealand Journal of Psychiatry, 36(6), 717–732. https://doi.org/10.1046/j.1440-1614.2002.01100.x
Georgis, R., Brosinsky, L., Mejia, T., Kirova, A., Gokiert, R., & Knowledge Exchange Advisory. (2017). RAISED Between Cultures: A knowledge and reflection guidebook for intercultural practice in the early years. Community-University Partnership, University of Alberta. https://www.ualberta.ca/community-university-partnership/media-library/community-university-partnership/resources/publications/finalraised-guidebook-08single-pages-2.pdf
Ghahari, S., Lui, J., Nagra, S., & Morassaei, S. (2020). The life experiences of refugees in Canada: A comprehensive scoping review to identify unmet needs and barriers. Journal of International Migration and Integration, 21(4), 1249–1261. https://doi.org/10.1007/s12134-019-00727-3
Gruner, D., Magwood, O., Bair, L., Duff, L., Adel, S., & Pottie, K. (2020). Understanding supporting and hindering factors in community-based psychotherapy for refugees: A realist-informed systematic review. International Journal of Environmental Research and Public Health, 17(4618), 1–19. https://doi.org/10.3390/ijerph17134618
Hassan, A. (2019). The Syrian mental health crisis: Present findings and future directions. Harvard Public Health Review, 21, 1–5. https://www.jstor.org/stable/48515225
Hassan, G., Ventevogel, P., Jefee-Bahloul, H., Barkil-Oteo, A., & Kirmayer, L. J. (2016). Mental health and psychosocial wellbeing of Syrians affected by armed conflict. Epidemiology and Psychiatric Sciences, 25(2), 129–141. https://doi.org/10.1017/s2045796016000044
Hedar, M. (2017). Mental health during the Syrian crisis: How Syrians are dealing with the psychological effects. International Review of the Red Cross, 99(3), 927–935. https://doi.org/10.1017/s1816383119000080
Howlin, P., & Moss, P. (2012). Adults with autism spectrum disorders. The Canadian Journal of Psychiatry, 57(5), 275–283. https://doi.org/10.1177/070674371205700502
Jabri, S. (2015). The children with autism spectrum disorders in Syrian crisis: Challenges and recommendations. International Journal of Emergency Mental Health and Human Resilience, 17(4), 676–677. https://doi.org/10.4172/1522-4821.1000285
Karim, S., & Islam, M. N. (2016). Syrian crisis: Geopolitics and implications. BIISS Journal, 37(2), 107–132. https://biiss.org/publication-view/1350356258732904448
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442–462. https://doi.org/10.1177/1362361315588200
Kirmayer, L. J., & Jarvis, G. E. (2019). Culturally responsive services as a path to equity in mental healthcare. HealthcarePapers, 18(2), 11–23. https://doi.org/10.12927/hcpap.2019.25925
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., Nguyen, R. H. N., … Shaw, K. A. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and developmental disabilities monitoring network, 11 sites, United States, 2018. MMWR Surveillance Summaries, 70(11), 1–16. https://doi.org/10.15585/mmwr.ss7202a1
McGaha, K. K., & D’Urso, P. A. (2019). A non-traditional validation tool: Using cultural domain analysis for interpretive phenomenology. International Journal of Social Research Methodology, 22(6), 585–598. https://doi.org/10.1080/13645579.2019.1621474
Minhas, R. S., Graham, H., Jegathesan, T., Huber, J., Young, E., & Barozzino, T. (2017). Supporting the developmental health of refugee children and youth. Paediatrics & Child Health, 22(2), 68–71. https://doi.org/10.1093/pch/pxx003
Moore, J. A., Scharf, R. J., Malik, F., & Nyp, S. S. (2020). Beyond developmental supports for a child refugee. Journal of Developmental & Behavioral Pediatrics, 41(6), 496–498. https://doi.org/10.1097/dbp.0000000000000814
Morse, J. M. (2000). Determining sample size. Qualitative Health Research, 10(1), 3–5. https://doi.org/10.1177/104973200129118183
Oudshoorn, A., Benbow, S., & Meyer, M. (2020). Resettlement of Syrian refugees in Canada. Journal of International Migration and Integration, 21(3), 893–908. https://doi.org/10.1007/s12134-019-00695-8
Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2020). Perceptions, experiences, and needs of parents of culturally and linguistically diverse children with autism: A scoping review. Review Journal of Autism and Developmental Disorders, 8(2), 195–212. https://doi.org/10.1007/s40489-020-00210-1
Raslan, N., Hamlet, A., & Kumari, V. (2021). Mental health and psychosocial support in conflict: Children’s protection concerns and intervention outcomes in Syria. Conflict and Health, 15(1), Article 19. https://doi.org/10.1186/s13031-021-00350-z
Ritchie, K., & Sinacore, A. L. (2020). Message from the guest editors. Psynopsis: Human Rights and Social Justice, 42(4), 4–5. https://cpa.ca/docs/File/Psynopsis/2020-Vol42-4/index.html#p=1
Roberts, P., & Priest, H. (2006). Reliability and validity in research. Nursing Standard, 20(44), 41–45. https://doi.org/10.7748/ns2006.07.20.44.41.c6560
Ryan, D., Dooley, B., & Benson, C. (2008). Theoretical perspectives on post-migration adaptation and psychological well-being among refugees: Towards a resource-based model. Journal of Refugee Studies, 21(1), 1–18. https://doi.org/10.1093/jrs/fem047
Slobodin, O., Ghane, S., & De Jong, J. T. V. M. (2018). Developing a culturally sensitive mental health intervention for asylum seekers in the Netherlands: A pilot study. Intervention, 16(2), 86–94. https://doi.org/10.4103/intv.intv_2_18
Smith, B. (2018). Generalizability in qualitative research: Misunderstandings, opportunities and recommendations for the sport and exercise sciences. Qualitative Research in Sport, Exercise and Health, 10(1), 137–149. https://doi.org/10.1080/2159676x.2017.1393221
Smith, J. A. (2011). Evaluating the contribution of interpretative phenomenological analysis. Health Psychology Review, 5(1), 9–27. https://doi.org/10.1080/17437199.2010.510659
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: theory, method and research. Sage Publications.
Song, S. Y., Miranda, A. H., Radliff, K. M., & Shriberg, D. (2019). School psychology in a global society: Roles and functions. National Association of School Psychologists Publications.
Squires, A. (2009). Methodological challenges in cross-language qualitative research: A research review. International Journal of Nursing Studies, 46(2), 277–287. https://doi.org/10.1016/j.ijnurstu.2008.08.006
Squires, A., Sadarangani, T., & Jones, S. (2020). Strategies for overcoming language barriers in research. Journal of Advanced Nursing, 76(2), 706–714. https://doi.org/10.1111/jan.14007
Tuck, A., Oda, A., Hynie, M., Bennett-AbuAyyash, C., Roche, B., Agic, B., & McKenzie, K. (2019). Unmet health care needs for Syrian refugees in Canada: A follow-up study. Journal of Immigrant and Minority Health, 21(6), 1306–1312. https://doi.org/10.1007/s10903-019-00856-y
Tufford, L., & Newman, P. (2010). Bracketing in qualitative research. Qualitative Social Work, 11(1), 80–96. https://doi.org/10.1177/1473325010368316
UNHCR. (2015). Culture, context, and the mental health and psychosocial wellbeing of Syrians. https://www.unhcr.org/protection/health/55f6b90f9/culture-context-mental-health-psychosocial-wellbeing-syrians-review-mental.html
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology & Health, 15(2), 215–228. https://doi.org/10.1080/08870440008400302
Yohani, S., Brosinsky, L., & Kirova, A. (2019). Syrian refugee families with young children: An examination of strengths and challenges during early resettlement. Journal of Contemporary Issues in Education, 14(1), 13–32. https://doi.org/10.20355/jcie29356
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Copyright (c) 2024 Abdullah Bernier, Adam McCrimmon, Sumaya Nsair, Henna Hans
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