Title:

The life scenarios of family who have autistic child at home

Author:

Mail Cau Kim Jiu(1*)
Mail Somporn Rungreangkulkij(2)

(1) Faculty Of Nursing Khon Kaen University Thailand, Thailand
(2) Faculty Of Nursing Khon Kaen University Thailand, Thailand
(*) Corresponding Author
10.31101/jhtam.765| Abstract views : 1613 | PDF views : 468

Abstract


Living with autism is not easy for the autistic children themselves and their family members. Especially the family members who are also the main caregivers. This ethnographic study aimed to describe the ways of life of families who have children with autism at home. Data were collected through participant observations, focus group discussions and in-depth interviews. There were 20 families as key informants taken by purposive sampling who consist of mothers, grandmothers, and siblings. The data were analyzed by thematic analysis. There were four family life scenarios of family living with autistism including: 1) basic self care activity, 2) locking doors to protect the autistic children, 3) woman act as a main caregiver, 4) risk of child abuse, and 5) supporting from spouse and other family members. Main caregivers risk psychological, physical and social problems. Nurses should provide counseling to the main caregiver by deep listening to their concerns and teaching them how to manage stress. In addition, caregivers need supports from the family member particularly the husband.

Keywords


autistic children, life scenarios, family

Full Text:

PDF

References


Agustiar. (2004). Gender Dalam Budaya Puak Melayu Riau. Jurnal Ilmu Budaya, 1(1), 67–75.

Bal, V. H., Kim, S., Cheong, D., & Lord, C. (2016). Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. HHS Public Access, 19(7), 774–784

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

CDC. (2016). Community Report on Autism 2016. National Center on Birth Defects and Developmental Disabilities Division of Congenital and Developmental Disorders. Retrieved from http://www.cdc.gov/ncbddd/autism/states/comm_report_autism_2014.pdf

Dudley, C., & Emery, J. C. H. (2014). The value of caregiver time : costs of support and care for individuals living with autism spectrum disorder. The School of Public Policy University of Calgary, 7(1). Retrieved from www.pol icyschool.ca

Gray, D. E. (2003). Gender and coping: The parents of children with high functioning autism. Social Scienceand Medicine, 56, 631–642.

Gorsky, S. M. (2014). Self-Care Strategies Among Parents With a Child Diagnosed With Autism Spectrum Disorder. California State University - San Bernardino, gorskys@coyote.csusb.edu. 1-47

Hartmann, A. (2012). Autism and its Impact on Families. School of Social Work St. Catherine University & St. Thomas University St. Paul, Minnesota. 1-78. Retrieved from http://sophia.stkate.edu/m

Hawley, D. R., & DeHaan, L. (1996). Toward a definition of family resilience: integrating life span and family perspectives. Family Process, 35,283–298

Hoffman, E. (2012). Raising a child with Autism : Exploring family support structures. Stellenbosch University http://scholar.sun.ac.za

Kusumastuti, A. N. (2014). Stress Ibu Tunggal Yang Memiliki Anak Autis. Jurnal Psikologi, 2, 54–60.

Koydemir, S., & Tosun, Ü. (2009). Impact of autistic children on the lives of mothers. Procedia - Social and Behavioral Sciences, 1(1), 2534–2540.

Lindgren, S., & Doobay, A. (2011). Evidence-Based Interventions for Autism Spectrum Disorders. Department of Human Services by the Center for Disabilities and Development of the University of Iowa Children’s Hospital., 2-24

Maulana, M. P. (2015). Peran Keluarga Bagi Anak Autis (Studi Kasus 3 Keluarga Yang Memiliki Anak Autis di Lembaga Child Care Center). Departemen Ilmu Kesejahteraan Sosial, Fakultas Ilmu Sosial Dan Ilmu Politik Universitas Indonesia Depok.

Newschaffer, C., Croen, L. A., Daniels, J., Giarelli, E., Grether, J. K., Levy, S. E., & Windham, G. C. (2007). The epidemiology of autism spectrum disorders. Annual Review of Public Health, 28, 235–58.

Olson, M. (2010). Impact Autism Spectrum Disorders Has On Parents. The Graduate School University of Wisconsin-Stout.1-60

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.

Sharma, N., Chakrabarti,S., & Grover,S.(2016). Gender differences in caregiving among family - caregivers of people with mental illnesses, World J Psychiatr, 6(1): 7-17

Walsh, F. (1996). The concept of family resilience: Crisis and challenge. Family Process, 35, 261–281.




DOI: https://doi.org/10.31101/jhtam.765

Article Metrics

Abstract view : 1613 times
PDF - 468 times

Cited By

Refbacks

  • There are currently no refbacks.


Bookmark and Share


Copyright (c) 2019 Cau Kim Jiu, Somporn Rungreangkulkij

Creative Commons License
This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Journal of Health Technology Assessment in Midwifery

Indexing by

GarudaSinta Google Scholar Crossref DimensionsDOAJ


Universitas 'Aisyiyah (UNISA) Yogyakarta
Kampus Terpadu: Jl. Siliwangi (Ring Road Barat) No. 63, Nogotirto, Gamping, Sleman, Yogyakarta 55292 
Telepon: (0274) 4469199
Fax.: (0274) 4469204
Email: jhtam@unisayogya.ac.id

View My Stats