The Impact of Autism on Parents' Lived Experiences
DOI:
https://doi.org/10.53819/81018102t7012Abstract
The study sought to understand and describe the lived experiences of parents raising children with autism, comparing the experiences of mothers and fathers. The study employed a phenomenological qualitative research design, conducted at Cebu Kid's Center for Autism Foundation, Mandaue City. Using snowball sampling, nine parents of children aged 3-12 participated in semi-structured interviews. The study found that parents often face significant stress and challenges, including financial strain, lifestyle changes, and lack of support from healthcare providers. Additionally, parents primarily sought information online rather than from doctors, highlighting a gap in the patient-provider relationship. The study also revealed shortcomings in public special education schools, such as inadequate facilities and an unfavorable student-teacher ratio. The study concludes that comprehensive support systems are essential for parents of children with autism, including better healthcare communication, improved educational resources, and family-centered mental health interventions. The study recommends that healthcare providers create therapeutic relationships with parents, governments improve working conditions for special education teachers, and mental institutions offer family-focused interventions. Increasing public awareness about autism and providing continuous support for parents are also crucial steps to enhance the overall well-being of families affected by autism.
Keywords: Autism, Lived Experiences, Phenomenological Research, Parental Stress, Support Systems
References
Ahern, K. (2000). "Something is wrong with my child": A phenomenological account of a search for a diagnosis. Early Education and Development, 11, 187-201.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders and involvement. The Future of children.Retrieved from as teachers. 866.PAT4YOU (866.728.4968) Autism community, (n.d) Retrieved from http://www.autism-community.com/education/parent-
Avdi, E., Griffin, C., &Brough, S. (2000). Parents' constructions of professional knowledge, Big Ideas OJIN: The Online Journal of Issues in Nursing Vol. 18, No. 2, Manuscript 4
Bashir, A ,khurshid, S , &Qadri, F . (2014) Awareness and problems of parents of children with autism spectrum disorders.International journal of interdisciplinary research and innovations (2). pp. 42-48
Beena, J. (2015). Review article. BHM medical journal. Retrieved from: http://www.babymhospital.org/BMH_MJ/index.php/BMHMJ/article/view/57/66
Bluth,K. Roberson,P.Billen,R.and Sams,J.(2014) A Stress Model for Couples Parenting
Boushey, A. (2001). The grief cycle-one parent's trip around. Focus on Autism and Other Developmental Disabilities, 16, 27-30.
Brobst, J. B., Clopton, J. R., &Hendrick, S. S. (2009).Parenting children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24(1), 38-49. doi:http://dx.doi.org/10.1177/1088357608323699
Brobst, J. B., Clopton, J. R., &Hendrick, S. S. (2009).Parenting children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 24(1), 38-49. doi:http://dx.doi.org/10.1177/1088357608323699
Chew, K. (2012). Autism diagnosis often delayed for African-American children. Care2. Retrieved from: http://www.care2.com/causes/autism-diagnosis-often-delayed-for- african-american-children.html
Christensen, K., Schneide, B., & Butler D, Parent roles in their children's lives: Supervision content/uploads/2014/11/Autism-Worldwode-2012.pdf
Davis. N. O. & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38(7), 1278-91. doi:http://dx.doi.org/10.1007/s10803-007-0512-z
Ekas, N. V., Lickenbrock, D. M., & Whitman, T. L. (2010).Optimism, social support, and well-being in mothers of children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(10), 1274-84. doi:http://dx.doi.org/ 10.1007/s10803-010-0986-y
Ekas, N.Timmons, L.Pruitt, M. Ghilain,C. &Alessandri, M.(2015) The power of positivity
Erjona, D. (2013). Parental stress in families of children with disabilities.Journal of educational and social research. 3(7) Doi:10.5901/jesr.2013.v3n7p579
Eve, G. (2012). Catching autism early.American psychological association. Retrieved from: http://www.apa.org/monitor/2012/10/autism.aspx
Flippin, M., &Crais, E. R. (2011). The need for more effective father involvement in early autism intervention: A systematic review and recommendations. Journal of EarlyIntervention, 33(1),24-50. Retrieved from http://search.proquest.com/ docview/868675860?accountid=141440
Goin-Kochel, R.P., Mackintosh, V.H., & Myers, B.J. (2006). How many doctors does it to make to make an autism spectrum diagnosis? Autism, 10(5), 439–451. doi: 10.1177/ 1362361306066601
Griffith, G. M., Hastings, R. P., &Petalas, M. A. (2014). Brief report: Fathers' and mothers' ratings of behavioral and emotional problems in siblings of children with autismspectrum disorder. Journal of Autism and Developmental Disorders, 44(5), 1230-5.doi:http://dx.doi.org/10.1007/s10803-013-1969-6
Hawgood, G &Ponsen, A. (1sted). (2013) Cambrigde Checkpoints.Newyork. BPA print group.
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), 629-42.doi:http://dx.doi.org/10.1007/s10803-012-1604-y
Jones, L., Totsika, V., Hastings, R. P., &Petalas, M. A. (2013). Gender differences when parenting children with autism spectrum disorders: A multilevel modelingapproach. Journal of Autism and Developmental Disorders, 43(9), 2090-8.doi:http://dx.doi.org/10.1007/s10803-012-1756-9
Keller, T., Ramisch, J., &Carolan, M. (2014).Relationships of children with autism spectrum disorders and their fathers. The Qualitative Report, 19(33), 1-15. Retrieved from http://search.proquest.com/docview/1556026564?accountid=141440
Kopetz, P., &Endowed, D., (2012) Autism worldwide: prevalence, perceptions, acceptance, action.
Kozier, B. Erb, G. Synder, S. & Berman, A. (2007).Fundamental of nursing.Singapore: Pearson Education South Asia Pte Ltd.
Lickenbrock, D. M., Ekas, N. V., & Whitman, T. L. (2011). Feeling good, feeling bad: Influences of maternal perceptions of the child and marital adjustment on well-being inmothers of children with an autism spectrum disorder. Journal of Autism andDevelopmental Disorders, 41(7), 848-58. doi:http://dx.doi.org/10.1007/s10803-010-1105-9lid=76&articleid=552§ionid=3811
Luntz, S. (2012, 10).Early autism diagnosis. Australasian Science, 33, 39. Retrieved from Nursing practice.Eighth Edition.Lippincott Williams and Wilkins, Philadelphia, PA.parenting-and-the-quality-parent-child-attachmentsparticipation/
Macks, R. J., & Reeve, R. E. (2007).The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37(6), 1060-7. doi:http://dx.doi.org/10.1007/s10803-006-0249-0
Mary V. Muse (2011) Ethical legal issues.National commission on correctional health care. Retrivedfrom http://www.ncchc.org/cnp-ethical-legal
Matange, B. (2012) .An Exploration of the Lived Experiences of Mothers Raising Children with
Meyer, K. A., Ingersoll, B., &Hambrick, D. Z. (2011).Factors influencing adjustment in siblings of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1413-1420.
Ogston, P. L., Mackintosh, V. H., & Myers, B. J. (2011). Hope and worry in mothers of children
parenting stress. Gateway. Retrieved from:http://pediatrics.aappublications.org/content/119/Supplement_1/S114
Phetrasuwan, S., & Miles, M. S. (2009).Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14(3), 157-65. Retrieved from http://search.proquest.com/docview/195757733?account id=141440
Polit, D.,& Beck, C. (2008) Nursing research: generating and assessing evidence for publishing.predictors of relationship satisfaction for parents of children with autism spectrum disorder.Journal of Autism and disorders, 2015; 45 (7): 1997 DOI:10.1007/s10803-015-2362-4
Rivard, M., Terroux, A., Parent-boursier, C., & Mercier, C. (2014).Determinants of stress in parents of children with autismpectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1609-20. doi:http://dx.doi.org/10.1007/s10803-013-2028-z
Roth, P. H. (2001). A mother's account. Focus on Autism and Other Developmental Disabilities, 16, 17-19.
Salustiano, R. (2009). Introduction to research in the health sciences (1sted). Quezon City, C&E
Santoso, T. B., Ito, Y., Ohshima, N., Hidaka, M., &Bontje, P. (2015). Resilience in daily occupations of indonesian mothers of children with autism spectrum disorder. TheAmerican Journal of Occupational Therapy, 69(5), 1-8. Retrieved fromhttp://search.proquest.com/docview/1711617458?accountid=141440
Scott, W., & Hunt, A., (2011), The Important Role of Fathers in the Lives of Young Children. Parents
Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder.Journal of Autism and Developmental Disorders, 40(2), 167-78.doi:http://dx.doi.org/10.1007/s10803-009-0844-y
Smith,& David. W. (2013).Phenomenology. The Stanford encyclopedia of philosophy
Stephen, K. (2007). Parents are powerful role models for children. Parenting exchange Retrieved from: http://www.easternflorida.edu/community-resources/child-development-centers/parent-resource-library/documents/parents-powerful-role-models.pdf
Treffert, D. (2015) Brainman. Wiscosin medical society. Retrieved from: https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/profiles-and- videos/profiles/daniel-tammet-brainman/
Tsao, L., Davenport, R., & Schmiege, C. (2012).Supporting siblings of children with autism spectrum disorders. Early Childhood Education Journal, 40(1), 47-54. doi:http://dx.doi.org/10.1007/s10643-011-0488-3
