A QUALITATIVE STUDY OF PERCEPTION OF AUTISM SUPPORT GROUPS AMONG PARENTS

Main Article Content

Sidra Ali Khan
Naima Farooq
Rabia Mansoor
Harmain Fatima
Sabi Abdullah
Ghulam Saqulain

Keywords

Autism Support Group, advocacy, psychological well-being, emotional support, DSM 5 Diagnostic and Statistical Manual of Mental Disorders

Abstract

Background:  Receiving the diagnosis of autism spectrum disorder often evokes strong psychological and emotional reaction from the parents of the diagnosed child. Autism Support group may be a necessary component to help families to adapt and meet their children’s basic needs.


Objective: This qualitative study was aimed to explore the facilitation and barriers of autism support groups.


Methodology: This qualitative research study was conducted at Riphah International University, Islamabad over a period of 6 months from 1 August 2022 to 31 January 2023, Study recruited N=20 parents of autistic children who joined a web-based autism support group. Interviews were conducted face to face and online after asking about basic demographics, their responses were recorded and written verbatim.


Results: The results confirmed that there was strong evidence of autism support groups as they help in the effectiveness of emotional, social, psychological, and mental health. Autism support groups showed strong evidence that confirms the availability of professionals and other mothers.


Conclusion: The Study concludes a favorable view of the Autism Support Group. Parents view this as valuable and successful for generating ideas, increasing awareness, and disseminating knowledge about best practices in interventional mode on a national and worldwide level without any barriers.

Abstract 85 | pdf Downloads 42

References

1. Sauer AK, Stanton J, Hans S, Grabrucker A. Autism spectrum disorders: etiology and pathology. Exon Publications. 2021 Aug 20:1-5.
2. Norbury CF, Paul R. Disorders of speech, language, and communication. Rutter's Child and Adolescent Psychiatry. 2015 Jul 10:683-701.
3. Herrera E, Baena S, Hidalgo V, Trigo E. The relationship between family quality of life, mindful attention, and social support in families of people with autism spectrum disorder. International Journal of Developmental Disabilities. 2022 Sep 7:1-1.
4. Al-Beltagi M. Autism medical comorbidities. World journal of clinical pediatrics. 2021 May 9;10(3):15.
5. Millen C. The Reality of Accessing Care for Autism Spectrum Disorder. Journal of Pediatric Health Care. 2022 Sep 29.
6. Al-Beltagi M. Autism medical comorbidities. World journal of clinical pediatrics. 2021 May 9;10(3):15.
7. Matson JL, Goldin RL. Comorbidity and autism: Trends, topics and future directions. Research in Autism Spectrum Disorders. 2013 Oct 1;7(10):1228-33.
8. Sauer AK, Stanton J, Hans S, Grabrucker A. Autism spectrum disorders: etiology and pathology. Exon Publications. 2021 Aug 20:1-5.
9. Carmona CJ. The Role That Autism Parent-Led Support Groups Play In Facilitating Advocacy (Doctoral dissertation, Walden University).
10. Scott J, Ward H, editors. Safeguarding and promoting the well-being of children, families and communities. Jessica Kingsley Publishers; 2005 Sep 20.
11. Järbrink K, Fombonne E, Knapp M. Measuring the parental, service and cost impacts of children with autistic spectrum disorder: A pilot study. Journal of autism and developmental disorders. 2003 Aug;33(4):395-402.
12. Minhas A, Vajaratkar V, Divan G, Hamdani SU, Leadbitter K, Taylor C, Aldred C, Tariq A, Tariq M, Cardoza P, Green J. Parents’ perspectives on care of children with autistic spectrum disorder in South Asia–Views from Pakistan and India. International Review of Psychiatry. 2015 May 4;27(3):247-56.
13. Delgado M. Social work with Latinos: Social, economic, political, and cultural perspectives. Oxford University Press; 2017.
14. Disorders Han E, Tan MM, Crane L, Legido-Quigley H. A qualitative study of autism services and supports in Singapore: Perspectives of service providers, autistic adults and caregivers. Autism. 2021 Nov;25(8):2279-90.
15. Mandell DS, Salzer MS. Who joins support groups among parents of children with autism?. Autism. 2007 Mar;11(2):111-22.)
16. Carter I. Positive and negative experiences of parents involved in online self-help groups for autism. Journal on Developmental Disabilities. 2009;15(1):44.)
17. Carmona CJ. The Role That Autism Parent-Led Support Groups Play In Facilitating Advocacy (Doctoral dissertation, Walden University).
18. Gentles SJ, Nicholas DB, Jack SM, McKibbon KA, Szatmari P. Coming to understand the child has autism: A process illustrating parents’ evolving readiness for engaging in care. Autism. 2020 Feb;24(2):470-83.
19. Ooi KL, Ong YS, Jacob SA, Khan TM. A meta-synthesis on parenting a child with autism. Neuropsychiatric disease and treatment. 2016 Apr 5:745-62.
20. MASSUCCO J. A qualitative case study examining parental involvement and parent-school partnership strategies in a middle school: Perspectives of parents, teachers, and administrators.
21. Solomon M, Pistrang N, Barker C. The benefits of mutual support groups for parents of children with disabilities. American journal of community psychology. 2001 Feb;29:113-32.
22. Geldenhuys A. The financial and psychological cost of raising a child with Autism Spectrum Disorder: a qualitative study (Doctoral dissertation).
23. Morgenroth T, Ryan MK, Peters K. The motivational theory of role modeling: How role models influence role aspirants’ goals. Review of general psychology. 2015 Dec;19(4):465-83.
24. Carmona CJ. The Role That Autism Parent-Led Support Groups Play In Facilitating Advocacy. Walden University; 2017.
25. Ruzek EA, Hafen CA, Allen JP, Gregory A, Mikami AY, Pianta RC. How teacher emotional support motivates students: The mediating roles of perceived peer relatedness, autonomy support, and competence. Learning and instruction. 2016 Apr 1;42:95-103.
26. Hargreaves S, Bath PA, Duffin S, Ellis J. Sharing and empathy in digital spaces: qualitative study of online health forums for breast cancer and motor neuron disease (amyotrophic lateral sclerosis). Journal of medical Internet research. 2018 Jun 14;20(6):e222.