Digital storytellers: Parents facing with children’s autism in an Italian web forum

Valentina Boursier, Francesca Gioia, Federica Coppola, Adriano Schimmenti

Abstract


The diagnosis of Autism Spectrum Disorders (ASDs) in children has a relevant impact also on their parents. Parental websites offer opportunities to share social support, personal experiences, and health-related information. This study aimed at exploring how parents of ASDs children use specific online forums for ASDs. We selected an online forum of parents of ASDs children and analyzed 2469 messages using the latent thematic analysis. We identified four major themes, that we defined in terms of: The supporting group; the difficulties; the activities; and a perspective know-how. Results showed that parents with ASDs children often experience a need of emotional and practical support to cope with the difficulties with their lives. The online community seems to allow them to share experiences and solve doubts about their parental role, proposing practical advice and sustaining them. Belonging to the same group further acts as a support for parental well-being through peer similarity.

Keywords


Autism; Parenting; Internet forum, E-group; Thematic analysis.

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References


Abel, S., Machin, T., & Brownlow, C. (2019). Support, socialise and advocate: An exploration of the stated purposes of Facebook autism groups. Research in Autism Spectrum Disorders, 61, 10-21.

Alsem, M. W., Ausems, F., Verhoef, M., Jongmans, M. J., Meily-Visser, J. M. A., & Ketelaar, M. (2017). Information seeking by parents of children with physical disabilities: An exploratory qualitative study. Research in developmental disabilities, 60, 125-134.

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

American Psychological Association (2019) Autism. Available at: http://www.apa.org/topics/autism/index.

Baker, S., Sanders, M. R., & Morawska, A. (2017). Who uses online parenting support? A cross-sectional survey exploring Australian parents’ internet use for parenting. Journal of Child and Family Studies, 26(3), 916-927.

Baum, L.S. (2004) Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric nursing, 30(5), 381.

Boursier, V., Manna, V., Gioia, F., Coppola, F., & Venosa, N. (2018). Cyber-Moms Facing Motherhood: Holding Functions and Regressive Movements in Parenting Websites. In Global Perspectives on Health Communication in the Age of Social Media (pp. 29-58). IGI Global.

Brady, E. & Guerin, S. (2010) “Not the romantic, all happy, coochy coo experience”: A qualitative analysis of interactions on an Irish parenting web site. Family relations, 59(1), 14-27.

Braun, V. & Clarke, V. (2006) Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101.

Braun, V. & Clarke, V. (2013) Successful qualitative research: A practical guide for beginners. Sage.

Brazy, J., H Anderson, B., Becker, P., & Becker, M. (2001) How parents of premature infants gather information and obtain support. Neonatal network, 20(2), 41-48.

Clifford, T. & Minnes, P. (2013) Logging on: evaluating an online support group for parents of children with autism spectrum disorders. Journal of autism and developmental disorders, 43(7), 1662-1675.

Dabrowska, A. & Pisula, E. (2010) Parenting stress and coping styles in mothers and fathers of pre‐school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280.

Drentea, P. & Moren‐Cross, J.L. (2005) Social capital and social support on the web: the case of an internet mother site. Sociology of health & illness, 27(7), 920-943.

Dworkin, J., Connell, J., & Doty, J. (2013). A literature review of parents’ online behavior. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 7(2).

Fleischmann, A. (2005) The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism, 9(3), 299-316.

Freda, M. F., Savarese, L., Dolce, P., & De Luca Picione, R. (2019). Caregivers’ sensemaking of children’s Hereditary Angioedema: a semiotic narrative analysis of the Sense of Grip on the Disease. Frontiers in Psychology, 10, 2609.

Gentles, S. J., Nicholas, D. B., Jack, S. M., McKibbon, K. A., & Szatmari, P. (2019). Parent engagement in autism-related care: a qualitative grounded theory study. Health Psychology and Behavioral Medicine, 7(1), 1-18.

Grant, N., Rodger, S., & Hoffmann, T. (2015) Evaluation of Autism‐Related Health Information on the Web. Journal of Applied Research in Intellectual Disabilities, 28(4), 276-282.

Hall, C.M., Culler, E.D., & Frank-Webb, A. (2016) Online Dissemination of Resources and Services for Parents of Children with Autism Spectrum Disorders (ASDs): a Systematic Review of Evidence. Review Journal of Autism and Developmental Disorders, 3(4), 273-285.

Hall, H. R., & Graff, J. C. (2010). Parenting challenges in families of children with autism: A pilot study. Issues in comprehensive pediatric nursing, 33(4), 187-204.

Hall, W. & Irvine, V. (2009) E‐communication among mothers of infants and toddlers in a community‐based cohort: A content analysis. Journal of advanced nursing, 65(1), 175-183.

Hartley, S.L., Seltzer, M.M., Head, L., & Abbeduto, L. (2012) Psychological well‐being in fathers of adolescents and young adults with Down Syndrome, Fragile X syndrome, and autism. Family Relations, 61(2), 327-342.

Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of autism and developmental disorders, 43(3), 629-642.

Holtz, B., Smock, A., & Reyes-Gastelum, D. (2015). Connected motherhood: Social support for moms and moms-to-be on Facebook. Telemedicine and e-Health, 21(5), 415-421.

Holtz, P., Kronberger, N. & Wagner, W. (2012) ‘Analyzing Internet forums: a practical guide’. Journal of Media Psychology, 24(2), 55–66.

Howlin, P. & Moore, A. (1997) Diagnosis in autism: a survey of over 1200 patients in the UK. Autism, 1(2), 135-162.

Ilias, K., Liaw, J.H.J., Cornish, K., Park, M.S.-A., & Golden, K.J. (2016) Wellbeing of mothers of children with “AUTISM” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual and Developmental Disability, 42(1), 74-89.

Jang, J., Dworkin, J., & Connell, J. (2012). Babycenter. com: New parent behavior in an online community. The Forum for Family and Consumer Issues, 17(2).

Jones, L., Gold, E., Totsika, V., Hastings, R. P., Jones, M., Griffiths, A., & Silverton, S. (2018). A mindfulness parent well-being course: Evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools. European Journal of Special Needs Education, 33(1), 16-30.

Jones, R. & Lewis, H. (2001) Debunking the pathological model-The functions of an Internet discussion group. Down Syndrome Research and Practice, 6(3), 123-127.

Jordan, C.J. (2010) Evolution of autism support and understanding via the World Wide Web. Intellectual and developmental disabilities, 48(3), 220-227.

Kingsnorth, S., Gall, C., Beayni, S., & Rigby, P. (2011) Parents as transition experts? Qualitative findings from a pilot parent‐led peer support group. Child: care, health and development, 37(6), 833-840.

Kirk, S. & Milnes, L. (2016) An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expectations, 19(2), 309-321.

Kraut, R., Olson, J., Banaji, M., Bruckman, A., Cohen, J., & Couper, M. (2004) Psychological research online: report of Board of Scientific Affairs' Advisory Group on the Conduct of Research on the Internet. American psychologist, 59(2), 105-117.

Lam, L.-W. & Mackenzie, A.E. (2002) Coping with a child with Down syndrome: The experiences of mothers in Hong Kong. Qualitative health research, 12(2), 223-237.

Mackintosh, V.H., Myers, B.J., & Goin-Kochel, R.P. (2005) Sources of information and support used by parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 12(1), 41-51.

Manna, V., & Boursier, V. (2018). Mirroring effects: Using psychodynamic-oriented video feedback to work on dyadic risk. A pilot experience. Psychodynamic Practice, 24(2), 124-144.

Margherita, G., & Gargiulo, A. (2018). A comparison between pro-anorexia and non-suicidal self-injury blogs: From symptom-based identity to sharing of emotions. Psychodynamic Practice, 24(4), 346-363.

Martino, M. L., Gargiulo, A., Lemmo, D., & Margherita, G. (2019). Cancer Blog Narratives: The Experience of Under-Fifty Women with Breast Cancer during Different Times after Diagnosis. The Qualitative Report, 24(1), 158-173.

Martino, M. L., Picione, R. D. L., Lemmo, D., Boursier, V., & Freda, M. F. (2019). Meaning-Making Trajectories of Resilience in Narratives of Adolescents with MS. Mediterranean Journal of Clinical Psychology, 7(2).

McDaniel, B.T., Coyne, S.M., & Holmes, E.K. (2012) New mothers and media use: Associations between blogging, social networking, and maternal well-being. Maternal and child health journal, 16(7), 1509-1517.

Molteni, P. & Maggiolini, S. (2015) Parents’ perspectives towards the diagnosis of autism: An Italian case study research. Journal of Child and Family Studies, 24(4), 1088-1096.

Moqbel, M. & Little, L. (2014) Social networking site use among caregivers of children with Autism Spectrum Disorders. Thirty Fifth International Conference on Information Systems, 1-11.

Navot, N., Jorgenson, A.G., Vander Stoep, A., Toth, K., & Webb, S.J. (2016) Family planning and family vision in mothers after diagnosis of a child with autism spectrum disorder. Autism, 20(5), 605-615.

Niela-Vilén, H., Axelin, A., Salanterä, S., & Melender, H.-L. (2014) Internet-based peer support for parents: A systematic integrative review. International journal of nursing studies, 51(11), 1524-1537.

Nieuwboer, C.C., Fukkink, R.G., & Hermanns, J.M. (2013) Peer and professional parenting support on the Internet: a systematic review. Cyberpsychology, behavior, and social networking, 16(7), 518-528.

O'Connor, H., & Madge, C. (2004). Cyber-mothers: Online synchronous interviewing using conferencing software. Sociological Research Online, 9(2), 1-17.

Ooi, K. L., Ong, Y. S., Jacob, S. A., & Khan, T. M. (2016). A meta-synthesis on parenting a child with autism. Neuropsychiatric disease and treatment, 12, 745.

Palmén, M., Korpela, M., & Saranto, K. (2012) Identifying health and wellbeing related information management activities and needs in families with young children. Finnish Journal of eHealth and eWelfare, 4(3), 165-176.

Papp, L. M., & Hartley, S. L. (2019). Child-present and child-themed marital conflict in daily life of parents of children with and without autism spectrum disorder. Developmental psychology, 55(1), 148.

Parrello, S. & Giacco, N. (2014), Aggiungere vita ai giorni: la Distrofia Muscolare di Duchenne nella narrazione delle madri. Psicologia della Salute, 1, 113-124.

Pedersen, S., & Lupton, D. (2018). ‘What are you feeling right now?’communities of maternal feeling on Mumsnet. Emotion, Space and Society, 26, 57-63.

Pennefather, J., Hieneman, M., Raulston, T. J., & Caraway, N. (2018). Evaluation of an online training program to improve family routines, parental well-being, and the behavior of children with autism. Research in Autism Spectrum Disorders, 54, 21-26.

Plantin, L. & Daneback, K. (2009) Parenthood, information and support on the internet. A literature review of research on parents and professionals online. BMC family practice, 10(1), 34.

Qian, H., & Scott, C. R. (2007). Anonymity and self‐disclosure on weblogs. Journal of Computer‐Mediated Communication, 12(4), 1428-1451.

Reichow, B., Halpern, J.I., Steinhoff, T.B., Letsinger, N., Naples, A., & Volkmar, F.R. (2012) Characteristics and quality of autism websites. Journal of autism and developmental disorders, 42(6), 1263-1274.

Reinke, J.S. & Solheim, C.A. (2015) Online social support experiences of mothers of children with autism spectrum disorder. Journal of Child and Family Studies, 24(8), 2364-2373.

Roffeei, S.H.M., Abdullah, N., & Basar, S.K.R. (2015) Seeking social support on Facebook for children with Autism Spectrum Disorders (ASDs). International journal of medical informatics, 84(5), 375-385.

Ruthven, I., Buchanan, S., & Jardine, C. (2018). Relationships, environment, health and development: The information needs expressed online by young first‐time mothers. Journal of the Association for Information Science and Technology, 69(8), 985-995.

Samadi, S. A., Abdollahi-Boghrabadi, G., & McConkey, R. (2018). Parental satisfaction with caregiving among parents of children with autism spectrum disorders, attention deficit and hyperactivity, intellectual disabilities and typically developing. Early Child Development and Care, 1-8.

Schaaf, R.C., Toth-Cohen, S., Johnson, S.L., Outten, G., & Benevides, T.W. (2011) The everyday routines of families of children with autism: Examining the impact of sensory processing difficulties on the family. Autism, 15(3), 373-389.

Scharer, K. (2005) Internet social support for parents: the state of science. Journal of Child and Adolescent Psychiatric Nursing, 18(1), 26-35.

Shilling, V., Morris, C., Thompson‐Coon, J., Ukoumunne, O., Rogers, M., & Logan, S. (2013) Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Developmental Medicine & Child Neurology, 55(7), 602-609.

Sim, A., Cordier, R., Vaz, S., & Falkmer, T. (2019). “We are in this together”: Experiences of relationship satisfaction in couples raising a child with autism spectrum disorder. Research in Autism Spectrum Disorders, 58, 39-51.

Skotko, B. (2005) Mothers of children with Down syndrome reflect on their postnatal support. Pediatrics, 115(1), 64-77.

Suárez, A., Rodrigo, M. J., & Muneton, M. (2016a). Parental activities seeking online parenting support: Is there a digital skill divide?. Revista de Cercetare si Interventie Sociala, 54, 36.

Suárez, A., Rodríguez, J.A., & Rodrigo, M.J. (2016b) The Spanish online program “Educar en Positivo” (“The Positive Parent”): Whom does it benefit the most? Psychosocial Intervention, 25(2), 119-126.

Suler, J. (2004). The online disinhibition effect. Cyberpsychology & behavior, 7(3), 321-326.

Totsika, V., Hastings, R.P., Emerson, E., Lancaster, G.A., Berridge, D.M., & Vagenas, D. (2013) Is there a bidirectional relationship between maternal well‐being and child behavior problems in autism spectrum disorders? Longitudinal analysis of a population‐defined sample of young children. Autism Research, 6(3), 201-211.

Tozzi, A.E., Mingarelli, R., Gonfiantini, M., Pandolfi, E., Carloni, E., Gesualdo, F., & Dallapiccola, B. (2013) The internet user profile of Italian families of patients with rare diseases: a web survey. Orphanet journal of rare diseases, 8(1), 76.

Vassallo, T. (2016) " It's such a battle": A phenomenological account of raising a child on the autistic spectrum; a battle with bureaucracy and behaviour. The Plymouth Student Scientist, 9(1), 229-251.

Waizbard-Bartov, E., Yehonatan-Schori, M., & Golan, O. (2018). Personal Growth Experiences of Parents to Children with Autism Spectrum Disorder. Journal of autism and developmental disorders, 1-12.

Walker, L. O., Mackert, M. S., Ahn, J., Vaughan, M. W., Sterling, B. S., Guy, S., & Hendrickson, S. (2017). e‐Health and new moms: Contextual factors associated with sources of health information. Public Health Nursing, 34(6), 561-568.

Webb, S.J., Jones, E.J., Kelly, J., & Dawson, G. (2014) The motivation for very early intervention for infants at high risk for autism spectrum disorders. International journal of speech-language pathology, 16(1), 36-42.

Weiss, J.A., Wingsiong, A., & Lunsky, Y. (2013) Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985-995.

Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: The experience of parents who have a child with autism. Qualitative health research, 18(8), 1075-1083.




DOI: https://doi.org/10.6092/2282-1619/2019.7.2104

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