Otizm Spektrum Bozukluğu Olan Çocuğa Sahip Ailelerin Tatil Deneyimleri Üzerine Nitel Bir Araştırma

Otizm Spektrum Bozukluğu (OSB) teşhisi konulmuş çocukların aileleri hem tatilde hem de seyahat esnasında çeşitli zorluklarla karşılaşmaktadırlar. Bu çalışmanın amacı, OSB’ye sahip çocukları olan ailelerin tatil deneyimlerini belirlemek, tatilde yaşadıkları sorunları tespit etmek ve buna uygun pazarlama stratejileri geliştirmek adına ilgili paydaşlara öneriler sunmaktır. Araştırmada yarı yapılandırılmış odak grup görüşme tekniği kullanılmış ve Konya’da yaşayan OSB’li çocuk sahibi 17 aile ile mülakatlar gerçekleştirilmiştir. Araştırma bulguları, OSB tanısı olan çocuklara sahip ailelerin tatilleri esnasında karşılaştığı en önemli sorunların; konaklama işletmelerinin sunduğu hizmetlerin bu tür aileler için erişilebilir olmadığını ve seyahat esnasında yaşanılan sorunların ailelerin tatil deneyimlerini olumsuz etkilediğini göstermiştir. Bu durum, OSB teşhisi konulmuş çocukların ve ailelerin topluma kazandırılmasının, toplumun otizm hakkındaki farkındalığının artırılmasının gerekliliğine dikkat çekmektedir.

A Qualitative Research on the Holiday Experiences of Families with a Child with Autism Spectrum Disorder

Families of children diagnosed with Autism Spectrum Disorder (ASD) face various difficulties both on vacation and during travel. This study aims to determine the holiday experiences of families with children diagnosed with ASD, identify the problems they experience throughout the vacation, and provide suggestions to relevant stakeholders to develop related marketing strategies. A semi-structured focus group interview technique was conducted with 17 families in Konya. Research findings show the most critical problems of the families are that the services offered by accommodation businesses are not accessiblefor them, the hotel staff and other families do not have sufficient awareness of the subject. This situation draws attention to the necessity of providing more accessible holiday options for them.

PDF

___

Akdu, U., & Akdu, S. (2018). Engelli turizm: Yasal düzenlemeler ve uygulamalar, Gümüşhane Üniversitesi Sosyal Bilimler Enstitüsü Dergisi, 9 (23), 99-23
Akkök, F., & Uzun B. (2018). Yaşamın Diğer Bir Penceresi Otistik Özelliklere Sahip Çocuk Babaları ve Duyguları. Pegem Akademi,3. Baskı, Ankara.
Al Horany, A. K., Hassan, S. A., & Bataineh, M. Z. (2013). A review on factors affected marital adjustment among parents of autistic children and gender effects. Life Science Journal, 10(1), 400-405
Amet, L. (2013). Holiday, what holiday? Vacation experiences of children with autism and their families. Autism-OpenAccess, 3(3). (Accessed:27.12.2020), https://doi.org/10.4172/2165-7890.1000123
Autism Speaks. (2013). What is autism? (Accessed:18.12.2020), http://www.autismspeaks.org/what-autism.
Arıkan, R. (2013). Araştırma Yöntem ve Teknikleri, Nobel Yayıncılık: Ankara.
Aslan, Y., Cihan, H., & Damla, A. (2014). Otizm spektrum bozukluğu tanılı çocuk sahibi annelerin deneyimleri, Elektronik Sosyal Bilimler Dergisi, 13 (50), 96-111.
Aydın, D., & Özgen, Z. E. (2018). Çocuklarda otizm spektrum bozukluğu ve erken tanımlamada hemşirenin rolü. Gümüşhane Üniversitesi Sağlık Bilimleri Dergisi, 7(3), 93- 101.
Bashir, A., Bashir, U., Lone, A., & Ahmad, Z. (2014). Challenges faced by families of autistic children. International Journal of Interdisciplinary Research and Innovations, 2 (1), 64-68.
Bek, H., Gülveren, H., & Şen, B. (2012). Otistik çocuğa sahip ebeveynlerle normal çocuğa sahip olan ebeveynlerin atılganlık, suçluluk ve utanç düzeyleri bakımından incelenmesi. Turkish International Journal of Special Education and Guidance & Counceling, 1,1- 7.
Blichfeldt, B.S., & Nicolaisen, J. (2011). Disabled travel: Not easy, but doable. Current Issues in Tourism, 14(1), 79-102.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101.
Bromley, J., Hare, D.J., Davison, K., Emerson, E. (2004). Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services. Autism, 8, 409-423.
Burnett, J. J., & Baker, H. (2001). Assessing the travelrelated behaviors of the mobility‐disabled consumer. Journal of Travel Research, 40(1), 4–11. https://doi.org/10.1177/004728750104000102
Büyüköztürk, Ş., Kılıç Çakmak, E., Akgün, Ö. E, Karadeniz, Ş., & Demirel, F. (2019). Eğitimde Bilimsel Araştırma Yöntemleri. Pegem Akademi: Ankara
Connell, J., & Page, S. J. (2019). Case study: Destination readiness for dementia‐friendly visitor experiences: A scoping study. Tourism Management, 70, 29–41. https://doi.org/10.1016/j.tourman.2018.05.013
Cridland, E. K., Jones, S. C., Caputi P., & Magee C.A. (2015). Qualitative research with families living with autism spectrum disorder: recommendations for conducting semistructured interviews. Journal of Intellectual & Developmental Disability, 40(1),78–91. doi:10.3109/13668250.2014.964191
Çam, O., & Özkan, Ö. (2009). Otistik çocuk sahibi ailelerin yaşam kalitelerinin incelenmesi. ÖZ-VERİ Dergisi, 6, 1425-1439
Coşkun, Y., &Akkaş, G. (2015). Engelli çocuğu olan annelerin sürekli kaygı düzeyleri ile sosyal destek algıları arasındaki ilişki. Ahi Evran Üniversitesi Kırşehir Eğitim Gümüşhane Üniversitesi Sağlık Bilimleri Dergisi, 4(1), 213-227
Çelik, S., (2019). Engelli turizmi ve engelli bireylerin turizmde yaşadığı sorunlar: Kilis örneği, Uluslararası Sosyal Araştırmalar Dergisi, 12 (67), 851-858
Çengelci, B. (2009). Otizm ve down sendromlu çocuğa sahip annelerin kaygı, umutsuzluk ve tükenmişlik duygularının karşılaştırılması. Ege Eğitim Dergisi, 10(2), 1–22.
Çopuroğlu, Y. C., & Mengi, A. (2014). Toplumsal dışlanma ve otizm. International Periodical For The Languages, Literature and History of Turkish or Turkic, 9/5 Spring, 607-626.
Darcy, S. (2010). Inherent complexity: Disability, accessible tourism and accommodation information preferences. Tourism Management, 31(6), 816–826. https://doi.org/10.1016/j.tourman.2009.08.010
Darcy, S., Cameron, B., & Pegg, S. (2010). Accessible tourism and sustain- ability: A discussion and case study. Journal of Sustainable Tourism, 18(4), 515–537. https://doi.org/10.1080/09669581003690668
Darcy, S., & Daruwalla, P.S. (1999). The trouble with travel: People with disabilities and tourism. Social Alternative, 18(1), 41-46.
Divan, G., Vajaratkar, V., Desai, M. U., Strik-Lievers, L., & Patel, V. (2012). Challenges, coping strategies, and unmet needs of families with a child with autism spectrum disorder in goa, ındia. Autism Research, 5(3), s.190-200.
Dominguez, T., Darcy. S., & González, E.A. (2015). Competing for the disability tourism market – A comparative exploration of the factors of accessible tourism competitiveness in Spain and Australia. Tourism Management, 47, 261-272.
Donovan, A.M. (1988). Family stress and ways of coping with adolescents who have handicaps: maternal perceptions. American Journal of Mental Retardation, 92, 502-509.
Equine Assisted Therapy - The Anxiety Treatment Center. (2021).(Accessed:25.03.2021),http://anxietytreatmentex perts.com/equine-assisted-therapy/
Figueiredo, E., Eusébio, C., & Kastenholz, E. (2012). How diverse are tourists with disabilities? A pilot study on accessible leisure tourism experiences in Portugal. International Journal of Tourism Research, 14, 531– 550. https://doi.org/10.1002/jtr.1913
Freund, D., Cerdán, M., Hernández, G., Guix, M., Iñesta, A., & Castelló, M. (2019). Enhancing the hospitality customer experience of families with children on the autism spectrum disorder. International Journal of Tourism Research, 21(5), 606-614. DOI:10.1002/jtr.2284
Floyd, F.J., & Zmich, D.E. (1991). Marriage and the Parenting Partnership: Perceptions and Interactions of Parents with Mentally Retarded and Typically Developing Children. Child Development, 62(6),1434- 1448.
Fombonne, E., Simmons, H., Ford, T., Meltzer, H., & Goodman, R. (2003). Prevalence of pervasive developmental disorders in the British nationwide survey of child mental health. International Reviews of Psychiatry, 15, 158-165.
Gau, S. S. F., Chou, M. C., Chiang, H. L., Lee, J. C., Wong, C. C., Chou, W. J., & Wu, Y. Y. (2012). Parental adjustment, marital relationship, and family function in families of children with autism. Research in Autism Spectrum Disorders, 6(1), 263-270.
Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Kihara, M., Vijver, F. V., & Abubakar, A. (2016). Challenges and coping strategies of parents of children with autism on the Kenyan coast. Rural Remote Health, 16 (2), 3517. https://pure.uvt.nl/ws/portalfiles/portal/11297217/article _print_3517.pdf
Gökkuşağı (2014). Amerika’da her 68 çocuktan biri Otistik. (Accessed:28.12.2020), https://blogs.voanews.com/turkish/gokkusagi/2014/04/0 8/amerikada-her-68-cocuktan-biri-otistik/
Gray, D.E. (2003). Gender and coping: the parents of children with high functioning autism. Social Science & Medicine, 56, 631-642.
Greeff, P. A., & Walt, K. J. (2010). Resilience in families with an autistic child. Education and training in autism and developmental disabilities, 45(3), 347–355.
Gröschl, S. (2007). An exploration of HR policies and practices affecting the integration of persons with disabilities in the hotel industry in major Canadian tourism destinations. Hospitality Management, 26, 666- 686.
Hamed, H.M. (2013). Tourism and autism: An initiative study for how travel companies can plan tourism trips for autistic people. American Journal of Tourism Management, 2(1), 1-14, DOI: 10.5923/j.tourism.20130201.01
Hare, D., Chapman, M., Fraser, J., Gore, S., & Burton, M. (2003). The prevalence of autistic spectrum disorders in people using a community learning disabilities service. Journal of Learning Disabilities 7, 267-281.
Hartley, S. L., Barker, E. T., Seltzer, M. M., Floyd, F., Greenberg, J., Orsmond, G. & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24(4), 449-457.
Huh, C., & Singh, A.J. (2007). Families traveling with a disabled member: Analysing the potential of an emerging niche market segment. Tourism and Hospitality Research. 7(3- 4), 212-229.
İçöz, O. (2019). Engelli çocuklar ve turizm (children with disabilities and tourism). Sivas Interdisipliner Turizm Araştırmaları Dergisi, (3), 39-46.
Järbrink, K., Fombonne, E., & Knapp, M. (2003). Measuring the parental, service and cost impacts of children with autistic spectrum disorder: a pilot study. Journal of Autism and Developmental Disorder, 33, 395-402.
Jo, S., Kosciulek, J.F., Huh, C,. & Holecek, D.F. (2004). Comparison of travel patterns of families with and without a member with a disability. Journal of Rehabilitation, 70(4), 38-45.
Jordan, R. (1999). Autistic Spectrum Disorders, London: David Fulton Publishers.
Karpat, D. (2011). Yaygın Gelişimsel Bozukluk Tanısı Alan Çocukların Ebeveynlerinin Yaşadığı Yas Tepkilerinin, Evlilik Uyumlarının ve Sosyal Destek Algılarının İncelenmesi, (Yüksek Lisans Tezi). Dokuz Eylül Üniversitesi Eğitim Bilimleri Enstitüsü, İzmir.
Kim, S.E., & Lehto, X.Y. (2012). The voice of tourists with mobility disabilities: insights from online customer complaint websites. International Journal of Contemporary Hospitality Management, 24(3), 451- 476.
Kudaibergenova, A. (2018). Otizm Spektrum Bozukluğu Olan Ailelerin Karşılaştıkları Sorunlar: Edirne Örneği. (Yüksek Lisans Tezi). Trakya Üniversitesi Sosyal Bilimler Enstitüsü, Edirne
Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic Inquiry. Newbury Park: Sage Publications.
Lord, C., Cook, E. H., Leventhal, B. L., & Amaral, D. G. (2000). Autism spectrum disorders. Neuron, 28, 355– 363
McKercher, B., & Darcy, S. (2018). Re‐conceptualizing barriers to travel by people with disabilities. Tourism Management Perspectives, 26, 59–66. https://doi.org/10.1016/j.tmp.2018.01.003
Michopoulou, E., Darcy, S., Ambrose, I., & Buhalis, D. (2015). Accessible tourism futures: The world we dream to live in and the opportunities we hope to have. Journal of Tourism Futures, 1(3), 179–188. https:// doi.org/10.1108/JTF‐08‐2015‐0043
Morrow, S.L. (2005). Quality and trustworthiness in qualitative research in counseling psychology. Journal of Counseling Psychology, 52(2), 250-260.
Neo, W. X., & Flaherty, G.T. (2018). Autism spectrum disorder and international travel. International Journal of Travel Medicine and Global Health, 7, 1–3.
Özbaran, B. (2014). Otizm spektrum bozukluklarında çevresel faktörler etkili midir? The Journal of Pediatric Research, 1(4), 170-173.
Özdemir, S., Gürel, Ö., Töret, G., & Özkubat, U. (2012). 2- 12 Yaş aralığında bulunan otizmli çocuğa sahip ebeveynlerin tanı öncesi, tanı sırası ve tanı sonrasına ilişkin görüşleri, 22. Ulusal Özel Eğitim Kongresi, Trabzon.
Özeren, S.G. (2013). Otizm spektrum bozukluğu (ASD) ve hastalığa kanıt penceresinden bakış. ACU Sağlık Bilimleril Dergisi, 4(2), 57-63.
Öztürk, M. (2011). Engellenen bireylerin gözünden otizm spektrumu: çeşitli işlevlerin gelişimi için beden eğitimi önerileri. Selçuk Üniversitesi Beden Eğitimi ve Spor Bilim Dergisi,13(Ek sayı):5-12.
Packer, T.L., McKercher, B., & Yau, M.K. (2007). Understanding the complex interplay between tourism, disability and environmental contexts. Disability and Rehabilitation, 29(4), 281-292.
Rodrigue, J. R., Morgan, S. B., & Geffken, G. (1990). Families of autistic children: Psychological functioning of mothers. Journal of clinical child psychology, 19(4), 371-379.
Ryan, S. (2005). People do odd, do they? mothers making sense of the reactions of others towards their learning disable children in public places. Children’s Geographies, 3, 291-305
Schor, E. L. (2003). American Academy of Pediatrics Task Force on the Family. Family pediatrics: report of the Task Force on the Family. Pediatrics ,111, 1541- 1571.
Sedgley, D., Pritchard, A., Morgan, N., & Hanna, P. (2017). Tourism and autism: Journeys of mixed emotions. Annals of Tourism Research, 66(Supplement C), 14–25.
Sharpe, D. L., & Baker, D. L. (2007). Financial issues associated with having a child with autism. Journal of Family and Economic Issues, 28,247–264.
Sobsey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: chicken or egg? Developmental Disabilities Bulletin, 32(1), 62-83.
Spencer, L., Ritchie, J., Ormston, R., O’Connor, W., & Barnard, M. (2014). Analysis: Principles and processes. In Ritchie, J., Lewis, J., McNaughton Nicholls, C. and Ormston, R. (eds.) Qualitative research practice: a guide for social science students and researchers (2nd edition). London: National Centre for Social Research.
Stuhl, A., & Porter, H. (2015). Riding the waves: Therapeutic surfing to improve social skills for children with autism. Therapeutic Recreation Journal, XLIX (3), 253–256.
Veal, A. J. (2011). Research Methods for Leisure and Tourism: A Practical Guide (Fourth Edition). Harlow: Prentice Hall.
Wang, W. & Cole, S. (2014). Perceived onboard service needs of passengers with mobility limitations: An investigation among flight attendants. Asia Pacific Journal of Tourism Research, 19(11), 1239-1259.
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.
World Health Organisation (2011). World Bank. World Report on Disability. Geneva. WHO. (Accessed: 20.09.2020), www.who.int/disabilities/world_report