Doğa Gatos
ABSTRACT
Parents with children on the autism spectrum often use online resources to find information and social support, but it is unclear whether these online spaces emulate the support and care practices that parents seek offline. Based on a series of interviews with 15 parents of children on the autism spectrum, we studied the qualitative aspects of how these parents seek, acquire, and share support in relation to their needs and caregiving practices. Our findings reveal that seeking and receiving support entail considerable efforts due to the challenges parents face while conveying information about their children to others, and due to how the provided support clashes with their needs. Analyzing these parents’ accounts, we discuss implications for designing online spaces to help autism parents benefit from each other’s experiential knowledge while accessing to emotional, instrumental and validated informational support.
- Deepti Aggarwal, Robyn Garnett, Bernd Ploderer, Frank Vetere, Patricia Eadie, and Bronwyn Joy Davidson. 2015. Understanding video based parent training intervention for children with autism. In Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human Interaction. 10–19.Google Scholar
Digital Library
- Tawfiq Ammari and Sarita Schoenebeck. 2015. Networked empowerment on Facebook groups for parents of children with special needs. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. 2805–2814.Google ScholarDigital Library
- Tawfiq Ammari and Sarita Schoenebeck. 2015. Understanding and Supporting Fathers and Fatherhood on Social Media Sites. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems - CHI ’15. ACM Press, Seoul, Republic of Korea, 1905–1914. https://doi.org/10.1145/2702123.2702205Google ScholarDigital Library
- Tawfiq Ammari, Sarita Yardi Schoenebeck, and Meredith Ringel Morris. 2014. Accessing social support and overcoming judgment on social media among parents of children with special needs. In Eighth International AAAI Conference on Weblogs and Social Media.Google ScholarCross Ref
- autismspeaks.org. 2020. Parent. Retrieved March 11, 2020 from https://www.autismspeaks.org/parentGoogle Scholar
- Cornelia Betsch, Frank Renkewitz, Tilmann Betsch, and Corina Ulshöfer. 2010. The influence of vaccine-critical websites on perceiving vaccination risks. Journal of health psychology 15, 3 (2010), 446–455.Google ScholarCross Ref
- Neeraj Bhandari, Yunfeng Shi, and Kyoungrae Jung. 2014. Seeking health information online: does limited healthcare access matter?Journal of the American Medical Informatics Association 21, 6(2014), 1113–1117.Google Scholar
- Katya Borgos-Rodriguez, Kathryn E Ringland, and Anne Marie Piper. 2019. MyAutsomeFamilyLife: Analyzing Parents of Children with Developmental Disabilities on YouTube. Proceedings of the ACM on Human-Computer Interaction 3, CSCW(2019), 1–26.Google ScholarDigital Library
- Ellen Brady and Suzanne Guerin. 2010. “Not the romantic, all happy, coochy coo experience”: A qualitative analysis of interactions on an Irish parenting web site. Family relations 59, 1 (2010), 14–27.Google Scholar
- Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative research in psychology 3, 2 (2006), 77–101.Google Scholar
- Alexander Burrell, Jonathan Ives, and Gemma Unwin. 2017. The experiences of fathers who have offspring with autism spectrum disorder. Journal of autism and developmental disorders 47, 4 (2017), 1135–1147.Google ScholarCross Ref
- Irene Carter. 2009. Positive and negative experiences of parents involved in online self-help groups for autism. Journal on Developmental Disabilities 15, 1 (2009), 44.Google Scholar
- Denise Catalano, Linda Holloway, and Elias Mpofu. 2018. Mental health interventions for parent carers of children with autistic spectrum disorder: Practice guidelines from a Critical Interpretive Synthesis (CIS) systematic review. International journal of environmental research and public health 15, 2(2018), 341.Google Scholar
- Centers for Disease Control CDC and Prevention. 2019. Data & Statistics on Autism Spectrum Disorder. Article. Retrieved August 13, 2019 from https://www.cdc.gov/ncbddd/autism/data.html.Google Scholar
- Tessen Clifford and Patricia Minnes. 2013. Logging on: Evaluating an online support group for parents of children with autism spectrum disorders. Journal of autism and developmental disorders 43, 7 (2013), 1662–1675.Google ScholarCross Ref
- Laura Cole, Yasmin Kharwa, Nomfundo Khumalo, Jennifer S. Reinke, and Saira B. S. Karrim. 2017. Caregivers of School-aged Children with Autism: Social Media as a Source of Support. Journal of Child and Family Studies 26, 12 (Dec. 2017), 3464–3475. https://doi.org/10.1007/s10826-017-0855-9Google ScholarCross Ref
- Munmun De Choudhury, Meredith Ringel Morris, and Ryen W White. 2014. Seeking and sharing health information online: comparing search engines and social media. In Proceedings of the SIGCHI conference on human factors in computing systems. 1365–1376.Google ScholarDigital Library
- Juliette Lynn De Wolfe. 2013. Parents speak: An ethnographic study of autism parents. Ph.D. Dissertation. Columbia University.Google Scholar
- Julie S Downs, Wändi Bruine de Bruin, and Baruch Fischhoff. 2008. Parents’ vaccination comprehension and decisions. Vaccine 26, 12 (2008), 1595–1607.Google ScholarCross Ref
- Mayada Elsabbagh, Gauri Divan, Yun-Joo Koh, Young Shin Kim, Shuaib Kauchali, Carlos Marcín, Cecilia Montiel-Nava, Vikram Patel, Cristiane S Paula, Chongying Wang, 2012. Global prevalence of autism and other pervasive developmental disorders. Autism research 5, 3 (2012), 160–179.Google Scholar
- Flash Eurobarometer. 2014. European citizens’ digital health literacy. A report to the European Commission(2014).Google Scholar
- Amos Fleischmann. 2004. Narratives published on the Internet by parents of children with autism: What do they reveal and why is it important?Focus on Autism and Other Developmental Disabilities 19, 1(2004), 35–43.Google Scholar
- Amos Fleischmann. 2005. The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism 9, 3 (2005), 299–316.Google ScholarCross Ref
- Lorna Gibson and Vicki L Hanson. 2013. Digital motherhood: How does technology help new mothers?. In Proceedings of the SIGCHI conference on human factors in computing systems. 313–322.Google ScholarDigital Library
- Carol Heins Gonzales, Gondy Leroy, and Gianluca De Leo. 2009. Requirements engineering using appreciative inquiry for an online community of caregivers of children with autism. In Proceedings of the 2009 ACM symposium on Applied Computing. 142–146.Google ScholarDigital Library
- N Grant, S Rodger, and T Hoffmann. 2016. Intervention decision-making processes and information preferences of parents of children with autism spectrum disorders. Child: care, health and development 42, 1 (2016), 125–134.Google Scholar
- Xinning Gui, Yu Chen, Yubo Kou, Katie Pine, and Yunan Chen. 2017. Investigating Support Seeking from Peers for Pregnancy in Online Health Communities. Proceedings of the ACM on Human-Computer Interaction 1, CSCW(2017), 50.Google ScholarDigital Library
- Ian Hacking. 2009. How we have been learning to talk about autism: A role for stories. Metaphilosophy 40, 3-4 (2009), 499–516.Google ScholarCross Ref
- Jina Huh and Mark S Ackerman. 2012. Collaborative help in chronic disease management: supporting individualized problems. In Proceedings of the ACM 2012 conference on Computer Supported Cooperative Work. 853–862.Google ScholarDigital Library
- Jonas Kjeldmand Jensen, Tawfiq Ammari, and Pernille Bjørn. 2019. Into Scandinavia: When Online Fatherhood Reflects Societal Infrastructures. Proceedings of the ACM on Human-Computer Interaction 3, GROUP(2019), 1–21.Google ScholarDigital Library
- Chloe J. Jordan. 2010. Evolution of Autism Support and Understanding Via the World Wide Web. Intellectual and Developmental Disabilities 48, 3 (June 2010), 220–227. https://doi.org/10.1352/1934-9556-48.3.220Google ScholarCross Ref
- Mickey Keenan, Karola Dillenburger, Alvin Doherty, Tony Byrne, and Stephen Gallagher. 2010. The experiences of parents during diagnosis and forward planning for children with autism spectrum disorder. Journal of Applied Research in Intellectual Disabilities 23, 4(2010), 390–397.Google ScholarCross Ref
- Lorcan Kenny, Caroline Hattersley, Bonnie Molins, Carole Buckley, Carol Povey, and Elizabeth Pellicano. 2016. Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20, 4 (2016), 442–462.Google ScholarCross Ref
- Priya Lalvani and Lauren Polvere. 2013. Historical perspectives on studying families of children with disabilities: A case for critical research. Disability Studies Quarterly 33, 3 (2013).Google Scholar
- Sophie Lewis, Samantha L Thomas, R Warwick Blood, David Castle, Jim Hyde, and Paul A Komesaroff. 2011. ‘I’m searching for solutions’: why are obese individuals turning to the Internet for help and support with ‘being fat’?Health expectations 14, 4 (2011), 339–350.Google Scholar
- Amanda Ludlow, Charlotte Skelly, and Poul Rohleder. 2012. Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of health psychology 17, 5 (2012), 702–711.Google ScholarCross Ref
- Lena Mamykina, Drashko Nakikj, and Noemie Elhadad. 2015. Collective sensemaking in online health forums. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems. 3217–3226.Google ScholarDigital Library
- Gabriela Marcu, Anind K Dey, and Sara Kiesler. 2012. Parent-driven use of wearable cameras for autism support: a field study with families. In Proceedings of the 2012 ACM Conference on Ubiquitous Computing. 401–410.Google ScholarDigital Library
- Siti Hajar Mohd Roffeei, Noorhidawati Abdullah, and Siti Khairatul Razifah Basar. 2015. Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International Journal of Medical Informatics 84, 5 (May 2015), 375–385. https://doi.org/10.1016/j.ijmedinf.2015.01.015Google ScholarCross Ref
- Drashko Nakikj and Lena Mamykina. 2017. A park or a highway: Overcoming tensions in designing for socio-emotional and informational needs in online health communities. In Proceedings of the 2017 ACM Conference on Computer Supported Cooperative Work and Social Computing. 1304–1319.Google ScholarDigital Library
- Drashko Nakikj and Lena Mamykina. 2018. Lost in migration: Information management and community building in an online health community. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. 1–14.Google ScholarDigital Library
- N Nazneen, Agata Rozga, Mario Romero, Addie J Findley, Nathan A Call, Gregory D Abowd, and Rosa I Arriaga. 2012. Supporting parents for in-home capture of problem behaviors of children with developmental disabilities. Personal and Ubiquitous Computing 16, 2 (2012), 193–207.Google ScholarDigital Library
- Michelle S Nicholson and Julie Leask. 2012. Lessons from an online debate about measles–mumps–rubella (MMR) immunization. Vaccine 30, 25 (2012), 3806–3812.Google ScholarCross Ref
- ODFED. 2013. TURKIYE’DE OTIZM. Article. Retrieved January 17, 2018 from http://www.odfed.org/otizm/.Google Scholar
- [45] Human Library Org.[n.d.]. Retrieved April 1, 2020 from https://humanlibrary.org/.Google Scholar
- Susan L Parish, Marsha Mailick Seltzer, Jan S Greenberg, and Frank Floyd. 2004. Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental retardation 42, 6 (2004), 413–426.Google Scholar
- Jessica Paynter, Michael Davies, and Wendi Beamish. 2018. Recognising the “forgotten man”: fathers’ experiences in caring for a young child with autism spectrum disorder. Journal of Intellectual & Developmental Disability 43, 1(2018), 112–124.Google ScholarCross Ref
- Kathryn E Ringland, Christine T Wolf, Lynn Dombrowski, and Gillian R Hayes. 2015. Making” Safe” Community-Centered Practices in a Virtual World Dedicated to Children with Autism. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 1788–1800.Google Scholar
- Siti Hajar Mohd Roffeei, Noorhidawati Abdullah, and Siti Khairatul Razifah Basar. 2015. Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International journal of medical informatics 84, 5(2015), 375–385.Google Scholar
- Amrita Sahay, Jai Prakash, Abdul Khaique, Priti Kumar, SP Meenakshi, K Ravichandran, N Patel, VK Gautaman, S Jangir, and NS Singh. 2013. Parents of intellectually disabled children: a study of their needs and expectations. International Journal of Humanities and Social Science Invention 2, 7(2013), 1–8.Google Scholar
- Sayyed Ali Samadi and Roy McConkey. 2011. Autism in developing countries: Lessons from Iran. Autism research and treatment 2011 (2011).Google Scholar
- Deanna L Sharpe and Dana Lee Baker. 2007. Financial issues associated with having a child with autism. Journal of Family and Economic Issues 28, 2 (2007), 247–264.Google ScholarCross Ref
- Ashley Shelby and Karen Ernst. 2013. Story and science: how providers and parents can utilize storytelling to combat anti-vaccine misinformation. Human vaccines & immunotherapeutics 9, 8 (2013), 1795–1801.Google ScholarCross Ref
- Carolyn M Shivers, Libbie Sonnier-Netto, and Gloria K Lee. 2019. Needs and Experiences of Family Caregivers of Individuals With Autism Spectrum Disorders Across the Lifespan. Journal of Policy and Practice in Intellectual Disabilities 16, 1(2019), 21–29.Google ScholarCross Ref
- Oren Shtayermman. 2013. Stress and marital satisfaction of parents to children diagnosed with autism. Journal of family social work 16, 3 (2013), 243–259.Google ScholarCross Ref
- Alexandra H Solomon and Beth Chung. 2012. Understanding autism: How family therapists can support parents of children with autism spectrum disorders. Family process 51, 2 (2012), 250–264.Google Scholar
- Elisabeth Staksrud and Sonia Livingstone. 2009. Children and online risk: Powerless victims or resourceful participants?Information, Communication & Society 12, 3 (2009), 364–387.Google ScholarCross Ref
- Matthieu Tixier, Gérald Gaglio, and Myriam Lewkowicz. 2009. Translating social support practices into online services for family caregivers. In Proceedings of the ACM 2009 international conference on Supporting group work. 71–80.Google ScholarDigital Library
- Tohum Otizm Vakfı TOHUM. 2020. Down Sendromu, Otizm ve Diger Gelisim Bozukluklarinin Yayginliginin Tespiti ile ilgili Bireylerin ve Ailelerinin Sorunlarinin Cozumu icin Alinmasi Gereken Tedbirlerin Belirlenmesi Amaciyla Kurulan Meclis Arastirmasi Komisyonu Raporu. Article. Retrieved July 16, 2020 from https://www.tohumotizm.org.tr/otizm/otizm-kaynaklari/raporlar/.Google Scholar
- Austin L Toombs, Kellie Morrissey, Emma Simpson, Colin M Gray, John Vines, and Madeline Balaam. 2018. Supporting the complex social lives of new parents. In Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems. ACM, 420.Google ScholarDigital Library
- Joseph B Walther and Shawn Boyd. 2002. Attraction to computer-mediated social support. Communication technology and society: Audience adoption and uses 153188(2002), 50–88.Google Scholar
- Yiwei Wang and Chirag Shah. 2016. Exploring support for the unconquerable barriers in information seeking. Proceedings of the Association for Information Science and Technology 53, 1 (2016), 1–5.Google ScholarCross Ref
- James M. Wilce. 2009. Medical Discourse. Annual Review of Anthropology 38, 1 (Oct. 2009), 199–215. https://doi.org/10.1146/annurev-anthro-091908-164450Google ScholarCross Ref
- Roberta L Woodgate, Christine Ateah, and Loretta Secco. 2008. Living in a world of our own: The experience of parents who have a child with autism. Qualitative health research 18, 8 (2008), 1075–1083.Google Scholar
- Zeynep Yildiz, Doga Gatos, Özge Subasi, Asim Evren Yantac, and Kemal Kuscu. 2019. Examining Online Practices of an Autism Parent Community in Turkey: Goals, Needs, and Opportunities. In Proceedings of the 2019 on Designing Interactive Systems Conference. ACM, 373–384.Google ScholarDigital Library
Index Terms
- “Oxygen Mask”: Understanding How Autism Parents Seek Support
Index terms have been assigned to the content through auto-classification.
Recommendations
The Need for Smart Parenting Module for Parenting Self-Efficacy of Parents with Autism Children During Covid-19 Pandemic
ICLIQE '21: Proceedings of the 5th International Conference on Learning Innovation and Quality EducationDuring the COVID-19 pandemic, the role of parents in assisting and educating children with autism is limited to their ability and knowledge of how to educate children with autism, parents with low parenting self-efficacy should work hard to meet the ...
Investigating Support Seeking from Peers for Pregnancy in Online Health Communities
We report a study of peer support in online health communities for pregnancy care along three gestational stages (trimesters) to investigate how pregnant women seek and receive peer support during different stages of pregnancy. Using Babycenter.com as ...
Comments