THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM

Yıl: 2017 Cilt: 12 Sayı: 33 Sayfa Aralığı: 67 - 80 Metin Dili: Türkçe İndeks Tarihi: 29-07-2022

THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM

Öz:
Otistik çocukların ebeveynleri yüksek düzeyde stres, kaygı, hayal kırıklığı ve hoşnutsuzluk yaşarlar. Bu aileler çocuklarına tanı konulduktan sonra hayatlarında değişiklik yaparlar. Tanı sonrasında ebeveynler tedavi hizmetlerinin kullanımı, kişisel ağları ya da aile üyelerinden destek ya da dinsel başa çıkma mekanizmalarının kullanımı gibi farklı başa çıkma mekanizmaları kullanırlar. Ebeveynler bu stratejilere ek olarak bir başa çıkma mekanizması olarak sosyal destek gruplarını da kullanırlar. Özel gereksinimli çocuk sahibi ebeveynler uzun zamandır sosyal destek gruplarını kullanarak yeni bilgiye ulaşma, diğer grup üyeleri ile deneyimlerini paylaşma ve duygusal destek alma imkânına sahiptirler. Bu gruplar arasında olan yüzyüze destek grupları üyelerine deneyimlerini paylaşma, birbirlerine destek olma, yeni bilgilere ulaşma, benzer ilgi ya da kaygıyı paylaşan ebeveynler ile birlikte bir ağ oluşturma imkânı sunmaktadır. Çevrimiçi ebeveyn destek grupları da benzer desteği çevrimiçi sunmakla birlikte üyelerine istedikleri zaman ya da dünyanın neresinden olursa olsun tartışmalara katılma imkânı sunar. Bu makalenin ilk kısmında ebeveynlerin otistik bir çocuk yetiştirme ile ilgili deneyimlerine değinilmektedir. İkinci kısımda ise yüzyüze ve çevrimiçi destek grupları ile ilgili çalışmalar gözden geçirilmekte ve bu grupların avantaj ve dezavantajları tartışılmaktadır. Ayrıca literatürdeki bilgiler ışığında sonuç ve önerilere yer verilmektedir.
Anahtar Kelime:

OTİSTİK ÇOCUĞU OLAN EBEVEYNLERİN ÇEVRİMİÇİ SOSYAL DESTEK GRUPLARI KULLANIMLARI

Öz:
Parents of children with autism experience high levels of stress, anxiety, frustration and dissatisfaction. Following the diagnosis in their children families make changes in their lives. After diagnosis parents employ different coping strategies such as use of treatment services, support from other members of the family or personal network or use of religious coping mechanisms. In addition to these strategies parents also use parent support groups as a way of coping. Parents of children with special needs have long been using parent support groups in order to gather new information, share their experiences with other group members, or get emotional support. Among these groups face-to-face support groups provide their members with the opportunity to share their experiences, support each other, obtain new information, and create a network of parents with similar interests or concerns. Online parent support groups provide the same support in online environment with the advantage of participating discussion any time they want and from anywhere in the world. The first section of this article focuses on parents' experiences of raising a child with autism. The second section reviews studies on face-to-face and parent support groups and discusses advantages and disadvantages of these groups. Conclusions and recommendation are made based on literature.
Anahtar Kelime:

Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık
  • Aibinder, J. G., Blanchard, L. W., Singer, G. H. S., Sullivan, M. E., Powers, L. K., Marquis, J. G., Santelli, B., & Consortium to Evaluate Parent to Parent (1998). A qualitative study of parent to parent support for parents of children with special needs. Journal of Pediatric Psychology, 23, 99-109.
  • Baum, L. S. (2004). Internet parent support groups for primary caregivers of a child with special health care needs. Pediatric Nursing, 30, 381-401.
  • Bennet, T., Deluca, D. A., & Allen, R. W. (1995). Religion and children with disabilities. Journal of Religion and Health, 34, 301-312.
  • Bennet, T., & DeLuca, D. A. (1996). Families of children with disabilities: Positive adaptation across life cycle. Social Work in Education, 18, 31-44.
  • Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17, 208- 215.
  • Braithwaite, D. O., Waldron, V. R., & Finn, J. (1999). Communication of social support in computermediated groups for people with disabilities. Health Communication, 11, 123-151.
  • Bull, L. (2003). The use of support groups by parents of children with dyslexia. Early Child Development and Care, 173, 341-347.
  • Cassell, M. M., Jackson, C., & Cheuvront, B. (1998). Health communication on the Internet: An effective channel for health behavior change? Journal of Health Communication, 3, 71-79.
  • 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.
  • Coonrod, E. E., & Stone, W. L. (2004). Early concerns of parents of children with autistic and nonautistic disorders, Infants and Young Children, 17, 258-368.
  • Dowling, M., & Dolan, L. (2001). Families with children with disabilities--inequalities and the social model. Disability & Society, 16, 21-35.
  • Dunst, C., & Trivette, C. (1987). Enabling and empowring families: conceptual and intervention issues. School Psychology Review, 16, 443-456.
  • Dunst, C., Trivette, C., & Cross, A. (1986). Mediating influences of social support: Personal, family, and child outcomes. American Journal of Mental Deficiency, 90, 403-417.
  • Dunst, C., Trivette, C., & Deal, A. (1988). Enabling & empowering families: Principles & guidelines for practice. Cambridge, MA: Brookline Books.
  • Dyson, L. I. (1997). Fathers and mothers of school-age children with developmental disabilities: Parental stress, family functioning, and social support. American Journal of Mental Retardation, 102, 267-279.
  • Endler, N. S., & Parker, J. D. (1990). Multi-dimensional assessment of coping: A critical evaluation. Journal of Personality and Social Psychology, 42, 207-220.
  • Finfgeld, D. (2000). Therapeutic groups online: The good, the bad, and the unknown. Issues in Mental Health Nursing, 21, 241-255.
  • Gray, D. E. (1993). Perceptions of stigma: The parents of autistic children. Sociology of Health and Illness, 15, 102-120.
  • Gray, D. E. (1994). Coping with autism: Stresses and strategies. Sociology of Health & Illness, 16, 275-300.
  • Gray, D. E. (2002). Ten years on: A longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27, 215-222.
  • Han, H. R., & Belcher, A. E. (2001). Computer-mediated support group use among parents of children with cancer--an exploratory study. Computers in Nursing, 19, 27-33.
  • Hastings, R. P., Kovshoff, H., Brown, T., Ward, N. J., Espinosa, F. D., & Remington, B. (2005). Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism, 9, 377-391.
  • Heiman, T. (2002). Parents of children with disabilities: Resilience, coping, and future expectations. Journal of Developmental and Physical Disabilities, 14, 159-171.
  • Huws, J. C., Jones, R. S. P., & Ingledew, D. K. (2001). Parents of children with autism using an email group: A grounded theory study. Journal of Health Psychology, 6, 569-584.
  • Hyman, A. (2003). Twenty years of ListServ as an academic tool. Internet and Higher Education, 6, 17-24.
  • Innocenti, M. S., & Kwisun, H. (1992). Families of children with disabilities: Normative data and other considerations on parenting stress. Topics in Early Childhood Special Education, 12, 403-427.
  • Jones, R. S. P., & Lewis, H. (2001). Debunking the pathological model - The functions of an Internet discussion group. Down Syndrome Research and Practice, 6, 123-127.
  • Kerr, S. M., & McIntosh, J. B. (2000). Coping when a child has a disability: Exploring the impact of parent-to-parent support. Child: Care, Health and Development, 26, 309-322.
  • King, G., Stewart, D., King, S., & Law, M. (2000). Organizational characteristics and issues affecting longevity of self-help groups for parents of children with special needs. Qualitative Health Research, 10, 225-241.
  • Krauss, M. W., Upshur, C. C., Shonkoff, J. P., & Hauser-Cram, P. (1993). The impact of parent groups on mothers of infants with disabilities. Journal of Early Intervention, 17, 8-20.
  • Kurtz, L. F. (1997). Self-help and support groups. Thousand Oaks, CA: Sage Publications.
  • Mahoney, G., & O'Sullivan, P. (1992). The family environments of children with disabilities: Diverse but not so different. Topics in Early Childhood Special Education, 12, 386-402.
  • Makri-Botsari, E., Polychroni, F., & Megari, E. (2001). Personality characteristics of Greek mothers of children with special needs who are involved in special needs support group centres. Mediterranean Journal of Educational Studies, 6, 113-140.
  • Midence, K., & O'Neill, M. (1999). The experience of parents in the diagnosis of autism, Autism, 3, 273-285.
  • Oliver, M. (1996) Understanding disability: From theory to practice. New York: Palgrave Press.
  • Pearson, J. E., & Sternberg, A. (1986). A mutual-help project for families of handicapped children. Journal of Counseling and Development, 65, 213-215.
  • Rodrigue, J. R., Morgan, S. B., & Geffken, G. (1990). Families of autistic children: Psychological functioning of mothers. Journal of Clinical Child Psychology, 19, 371-379.
  • Sanders, J. L., & Morgan, S. B. (1997). Family stress and management as perceived by parents of children with autism and Down syndrome: Implications for intervention. Child and Family Behavior Therapy, 19, 15-32.
  • Santelli, B., Turnbull, A., Marquis, J., & Lerner, E. (1997). Parent-to-parent programs: A resource for parents and professionals. Journal of Early Intervention, 21, 73-83.
  • Sarason, I. G., Sarason, B. R., Shearin, E. N., & Pierce, G. R. (1987). A brief measure of social support: Practical and theoretical implications. Journal of Social and Personal Relationships, 4, 497-510.
  • Sharpley, C. F., & Bitsika, V. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety and depression among parents of children with autism. Journal of Intellectual & Developmental Disability, 22, 19-28.
  • Simmerman, S., Blacher, J., & Baker, B. L. (2001). Fathers' and mothers' perceptions of father involvement in families with young children with a disability. Journal of Intellectual & Developmental Disability, 26, 325-338.
  • Sixsmith, J., & Murray, C. D. (2001). Ethical issues in the documentary data analysis of internet posts and archives. Qualitative Health Research, 11, 423-432.
  • Smith, K., Gabard, D., Dale, D., & Drucker, A. (1994). Parental opinions about attending parent support groups. Children's Health Care, 23, 127-136.
  • Solomon, M., Pistrang, N., & Barker, C. (2001). The benefits of mutual support groups for parents of children with disabilities. American Journal of Community Psychology, 29, 113-132.
  • Tarakeshwar, N., & Pargament, K. I. (2001). Religious coping in families of childr en with autism. Focus on Autism and Other Developmental Disabilities, 16, 247-260.
  • Telleen, S., Herzog, A., & Kilbane, T. (1989). Impact of a family support program on mother's social support and parenting stress. American Journal of Orthopsychiatry, 59, 410-419.
  • Tichon, J. G., & Shapiro, M. (2003). The process of sharing social support in cyberspace. CyberPsychology & Behavior, 6, 161-170.
  • Valentine, D. P. (1993). Children with special needs: Sources of support and stress for families. Journal of Social Work and Human Sexuality, 8, 107-121.
  • Welteroth, D. (2001). A parent perspective. Focus on Autism and Other Developmental Disabilities, 16, 9-11.
  • Wright, K. B., & Bell, S. B. (2003). Health-related support groups on the Internet: Linking empirical findings to social support and computer-mediated communication theory. Journal of Health Psychology, 8, 39-54.
APA Alat K (2017). THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. , 67 - 80.
Chicago Alat Kazım THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. (2017): 67 - 80.
MLA Alat Kazım THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. , 2017, ss.67 - 80.
AMA Alat K THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. . 2017; 67 - 80.
Vancouver Alat K THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. . 2017; 67 - 80.
IEEE Alat K "THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM." , ss.67 - 80, 2017.
ISNAD Alat, Kazım. "THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM". (2017), 67-80.
APA Alat K (2017). THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. Turkish Studies (Elektronik), 12(33), 67 - 80.
Chicago Alat Kazım THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. Turkish Studies (Elektronik) 12, no.33 (2017): 67 - 80.
MLA Alat Kazım THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. Turkish Studies (Elektronik), vol.12, no.33, 2017, ss.67 - 80.
AMA Alat K THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. Turkish Studies (Elektronik). 2017; 12(33): 67 - 80.
Vancouver Alat K THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM. Turkish Studies (Elektronik). 2017; 12(33): 67 - 80.
IEEE Alat K "THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM." Turkish Studies (Elektronik), 12, ss.67 - 80, 2017.
ISNAD Alat, Kazım. "THE USE OF ONLINE PARENT SUPPORT GROUPS BY PARENTS OF CHILDREN WITH AUTISM". Turkish Studies (Elektronik) 12/33 (2017), 67-80.