University Students’ Experiences as Volunteers in Hospitals for Individuals with Autism Spectrum Disorder and Their Families: “Be My Hospital Friend”

Parents of children with autism spectrum disorder (ASD) routinely visit healthcare institutions for medical examinations. Hospital visits can be a difficult experience because of core challenges of ASD, a general lack, or low level, of ASD knowledge among healthcare providers and lack of volunteer services. This study investigates results of a program developed to overcome these problems. The program under the name of “Be My Hospital Friend” aimed to encourage university students to engage in volunteer services in health issues. The purpose of this qualitative study was to describe the experiences of participants via reflections. Also, student’s levels of ASD knowledge were examined. The results show that the program was beneficial for participants’ ASD knowledge and personal development. The results discussed in terms of implications for research and practices.

Üniversite Öğrencilerinin Otizm Spektrum Bozukluğu Olan Bireylere ve Ailelerine Yönelik Hastane Ortamlarındaki Gönüllülük Deneyimleri: “Hastane Arkadaşım Ol”

Otizm spektrum Bozukluğu (OSB) tanılı bireyler yaşadıkları çeşitli sağlık sorunları nedeniyle tıbbî kontrolleri için ailelerince sağlık kurumlarına düzenli olarak götürmektedirler. OSB’ye özgü temel güçlükler, sağlık çalışanlarının OSB bilgilerindeki yetersizlikler ve bu süreçte aileye destek olacak gönüllülük hizmetlerinin eksikliği nedenleriyle, sağlık kurumlarına gidildiği günler OSB tanılı birey ve ailesi için zor bir süreç haline gelebilmektedir. Bu araştırma kapsamında, OSB tanılı bireylere ve ailelerine, sağlıkla ilgili süreçlerinde gönüllü destek olmak amacıyla üniversite öğrencileri ile yürütülen “Hastane Arkadaşım Olur musun?” adlı bir program başlatılmıştır. Bu nitel araştırmanın amacı, yansıtma formları ile toplanan veriler aracılıyla öğrencilerin bu gönüllülük çalışmasındaki deneyimlerinin incelenmesidir. Ayrıca, öğrencilerin OSB bilgi düzeyleri de niceliksel olarak incelenmiştir. Araştırma bulguları, programın öğrencilerin OSB bilgi düzeylerini ve kişisel gelişimlerini sağlama bağlamında faydalı olduğunu göstermiştir. Bulgular gelecekteki uygulama ve araştırmalar doğrultusunda tartışılmıştır.

___

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

Brachlow, A. E., Ness, K. K., McPheeters, M. L. and Gurney, J. G. (2007). Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs. National Survey of Children’s Health. Archives of Pediatrics & Adolescent Medicine, 161, 399-405.

Brantlinger, E., Jimenez, R., Klingner, J., Pugach, M. and Richardson, V. (2005). Qualitative studies in special education. Exceptional Children, 71(2), 195-207.

Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J. and Stein, N. (2012). Brief report: The medicalcare of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42, 2498-2504.

Caissie, L. and Halpenny, E. (2003). Volunteering for nature: Motivations for participating in a biodiversity conservation volunteer program. World Leisure, 45(2), 38-50.

Carbone, P. S., Behl, D. D., Azor, V. and Murphy, N. A. (2010). The medical home for children with autism spectrum disorder: Parent and pediatrician perspectives. Journal of Autism and Developmental Disorders, 40, 317-324.

Carbone, P. S., Murphy, N. A., Norlin, C., Azor, V., Sheng, X. and Young, P. C. (2013). Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 43, 964-972.

Cheak-Zamora, N. C. and Farmer, J. (2015). The impact of the medical home on access to care for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 45(3), 636-644.

Chiri, G. and Warfield, M. E. (2012). Unmet need and problems accessing core health care services for children with autism spectrum disorder. Journal of Maternaland Child Health, 16(5), 1081-1091.

Collier, V., Rothwell, E., Vanzo, R. and Carbone, P. (2015). Initial investigation of comfort levels, motivations, and attitudes of volunteers during therapeutic recreation programs. Therapeutic Recreation Journal, 3, 207-219.

Creswell, J. W. (2014). Educational research: planning, conducting, and evaluating quantitative and qualitative research. Upper Saddler River, N.J.: Pearson.

Creswell, J. W. and Plano-Clark, V. L. (2011). Designing and conducting mixed-methods research. Thousand Oaks, CA: Sage.

Daley, T. and Sigman, M. (2002). Diagnostic conceptualization of autism among Indian psychiatrists, psychologists, and pediatricians. Journal of Autism and Developmental Disorders, 32, 13-23.

Desai, M. U., Divan, G., Wertz, F. J. and Patel, V. (2012). The discovery of autism: Indian parents’ experiences of caring for their child with an autism spectrum disorder. Transcultural Psychiatry, 49(3-4), 613-637.

Gardiner, E. and Iarocci, G. (2014). Students with autism spectrum disorder in the university context: Peer acceptance predicts intention to volunteer. Journal of Autism and Developmental Disorders, 44(5), 1008-1017.

Golnik, A., Ireland, M. and Borowsky, I. W. (2009). Medical homes for children with autism: A physician survey. Pediatrics, 123(3), 966-971.

Hall, H. and Minnes, P. (1999). Attitudes toward persons with downsyndrome: The impact of television. Journal of Developmental and Physical Disabilities, 11(1), 61-76.

Hall, H. R. (2012). Families of children with autism: Behaviors of children, community support and coping. Issues in Comprehensive Pediatric Nursing, 35(2), 111-132.

Havercamp, S. M., Ratliff-Schaub, K., Navas Macho, P., Johnson, C. N., Bush, K. L. and Souders, H. T. (2016). Preparing tomorrow’s doctors to care for patients with autism spectrum disorder. Intellectual and Developmental Disabilities, 5(3), 202-216.

Hyman, S. L. and Johnson, J. K. (2012). Autism and pediatric practice: Toward a medical home. Journal of Autism and Developmental Disorders, 42, 1156-1164.

Kamp-Becker, I., Schröder, J., Remschmidt, H. and Bachman, C. J. (2010). Health-related quality of life in adolescents and young adults with high fuctioning autism-spectrum disorder. Psycho-Social Medicine, 31(7), 1-10.

Lancee, B. and Radl, J. (2014). Volunteering over the life course. Social Forces, 93(2), 833-862.

Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Austin, TX: Pro-Ed.

Mahoney, D. (2008). College students’ attitudes toward individuals with autism. Unpublished doctoral dissertation, University of North Carolina at Chapel Hill, NC.

Mazurik-Charles, R. and Stefanou, C. (2010). Using paraprofessionals to teach social skills to children with autism spectrum disorders in the general education classroom. Journal of Instructional Psychology, 37(2), 161-169.

McCabe, H. (2008). Autism and family in the People’s Republic of China: Learning from parents perspectives. Research and Practice for Persons With Severe Disabilities, 33(1-2), 37-47.

Mandell, D. S. and Novak, M. (2005). The role of culture in families’ treatment decisions for children with autism spectrum disorders. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 110-115.

Mavropoulou, S. and Padeliadou, S. (2000). Greek teachers’ perceptions of autism and implications for educational practice: A preliminary analysis. Autism, 4(2), 173-183.

Nieto, C., Murillo, E., Belinchón, M., Giménez, A., Saldaña, D., Martínez, M.-Á. and Frontera, M. (2015). Supporting people with autism spectrum disorders in leisure time: Impact of an university volunteer program, and related factors. Anales de Psicología, 31(1), 145-154.

Nolan, R., Walker, T., Hanson J. L. and Friedman, S. (2016). Developmental behavioral pediatrician support of the medical home for children with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics, 37(9), 87-693.

Nougaret, A. A., Scruggs, T. E. and Mastropieri, M. A. (2005). Does teacher education produce better special education teachers? Exceptional Children, 71(3), 217-229.

Robinson, S. E. (2011). Teaching paraprofessionals of students with autism to implement pivotal response treatment in inclusive school settings using a brief video feedback training package. Focus on Autism and Other Developmental Disabilities, 26(2), 105-118.

Samuel, O., Wolf, P. and Schilling, A. (2013). Corporate volunteeering: Benefits and challenges for nonprofits. Nonprofit Management and Leadership, 24(2) 163-179.

Shah, K. (2001). What do medical students know about autism? Autism, 5(2), 127-133.

Smith, J. A. and Osborn, M. (2004). Interpretative phenomenological analysis. In J. A. Smith, (Ed.), Qualitative psychology: A practical guide to research methods (pp. 51-80). London, UK: Sage.

Swiezy, N., Fairbanks, J., Stuart, M., Ashby, I., Ables, E. M. and Stone, W. (2005). Autism knowledge survey. Indianapolis, IN: Christian Sarkine Autism Treatment Center, HANDS in Autism. Volunteer Opportunities in Boston. (n.d.). Retrieved from http://www.childrenshospital.org/ways-to-help/volunteer-services/volunteer-i n-boston#

Von-Essen, J. (2016). On the meaning of volunteering: A study of world views in everyday life. Foundations of Science, 21(2), 315-333.

Yin, K. R. (2003). Case study research. London, UK: Sage Publications.

Yuker, H. E., Block, J. R. and Young, J. H. (1970). The measurement of attitudes towards disabled persons. New York, NY: Institute at Human Resources Center.