Support groups, self-help groups and associations of parents of children with autism – the source of emotional, informational or instrumental support?

Ewa Dobrogowska-Schlebusch



Introduction: Getting a diagnosis of autism spectrum disorder and the problems related to raising a child with a disability can be a major source of stress for parents of children with autism. Parents often join parent support groups to better deal with this situation and be able to share their experiences with other people.

The aim of the study was to assess the importance of joining such groups for parents and to identify types of social support offered through such groups.

Materials and methods: The study was part of a larger research project. Twelve in-depth interviews were conducted with parents of children with autism from Małopolskie Province, Poland. Seven of them had some experience with membership of various support groups for parents. Transcripts of interviews were analyzed using interpretative phenomenological analysis.

Results: Seven themes were identified in which parents talked about their feelings connected with participation in support groups for patients with autism.

Conclusions: Being a member of support groups, self-help groups or associations of parents of children with autism could be an important source of: emotional support (giving parents the sense of security and belonging to the group), and informational and instrumental support (thanks to information and instructions received from other parents). Parents were not only the passive recipients of support, but active individuals who were providing emotional and informational support for other parents. Seeing others as a reference point, parents could more easily adapt to the situation of raising a child with special needs and achieve the phase of constructive adaptation.


social support; psychosocial support systems; autistic disorder; parents; qualitative research

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Pisula E. Rodzice dzieci z autyzmem. Warszawa: Wyd. Nauk. PWN; 2012.

Twardowski A. Sytuacja rodzin dzieci niepełnosprawnych. In: Obuchowska I, editor. Dziecko niepełnosprawne w rodzinie. Warszawa: Wyd. Szkolne i Pedagogiczne; 1991. p. 18-54.

Szafrańska A. Systemy i rodzaje wsparcia społecznego rodziny z dzieckiem autystycznym. Zesz Nauk Wyższej Szk Humanit Pedagog 2015;11:37-45.

Law M, King S, Stewart D, King G. The perceived effects of parent-led support groups for parents of children with disabilities. Phys Occup Ther Pediatr 2001;21(2-3):29-48.

Papageorgiou V, Kalyva E. Self-reported needs and expectations of parents of children with autism spectrum disorders who participate in support groups. Res Autism Spectr Disord 2010;4(4):653-60.

Shilling V, Morris C, Thompson-Coon J, Ukoumunne O, Rogers M, Logan S. Peer support for parents of children with chronic disabling conditions: a systematic review of quantitative and qualitative studies. Dev Med Child Neurol 2013;55(7):602-9. doi: 10.1111/dmcn.12091.

Konecki K. Metoda fenomenologicznego objaśniania doświadczanych zjawisk na podstawie autoobserwacji. Materiały wykorzystywane podczas warsztatów metodologicznych „Metoda fenomenologicznego objaśniania doświadczania zjawisk na podstawie autoobserwacji” organizowanych podczas VI Transdyscyplinarnego Sympozjum Badań Jakościowych; 2017.

Hycner RH. Some guidelines for the Phenomenological Analysis of interview data. Hum Stud 1985;8:279-303.

Solomon P. Peer support/peer provide services undelying processes, benefits and critical ingridients. Psychiatr Rehabil J 2004;27:392-401.

Solomon M, Pistrang N, Barker C. The benefits of mutual support groups for parents of children with disabilities. Am J Community Psychol 2001;29(1):113-32.


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