Evidence map›Paper›PMID 41252024›Full record

ArticleAdvances in experimental medicine and biology2026

The Lived Experience of Parents Raising a Child with Autism Spectrum Disorder: "Losing Your Way, Being on a Rollercoaster with Ups and Downs".

Efthalia Tsagkli, Ioanna Prasini, Evdokia Missouridou, Paraskevi Apostolara, Ourania Govina, Chrysoula Tsiou, Marianna Mantzorou, Marianthi Paraskeva, Lydia Lentzari, Theodoula Adamakidou and 3 more

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Article in Advances in experimental medicine and biology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

13 authors.

Efthalia TsagkliUniversity of West Attica, Athens, Greece.
Ioanna PrasiniDepartment of Nursing, University of West Attica, Athens, Greece.
Evdokia MissouridouDepartment of Nursing, University of West Attica, Athens, Greece.
Paraskevi ApostolaraDepartment of Nursing, University of West Attica, Athens, Greece.
Ourania GovinaDepartment of Nursing, University of West Attica, Athens, Greece.
Chrysoula TsiouDepartment of Nursing, University of West Attica, Athens, Greece.
Marianna MantzorouDepartment of Nursing, University of West Attica, Athens, Greece.
Marianthi ParaskevaUniversity of West Attica, Athens, Greece.
Lydia Lentzari"Open Door"/CP Day Center, Athens, Greece.
Theodoula AdamakidouDepartment of Nursing, University of West Attica, Athens, Greece.
Helen DokoutsidouDepartment of Nursing, University of West Attica, Athens, Greece.
Fiona TimminsSchool of Nursing & Midwifery, University College Dublin, Dublin, Republic of Ireland.
Stelios ParissopoulosDepartment of Nursing, University of West Attica, Athens, Greece. spariss@uniwa.gr.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionRaising a child with Autism Spectrum Disorder (ASD) poses distinct challenges for the parents. The responsibilities that come with securing ongoing support are often described as daunting by them. Parents need support, guidance, and access to specialists to come to terms with the first diagnosis of ASD and to safely guide their child through the developmental stages into adulthood.

aimTo investigate the experiences of parents who are raising children diagnosed with ASD in Greece.

methodsSemi-structured interviews were conducted with eight parents of children with ASD. Interviews were analyzed according to Braun and Clarke's thematic methodology. Qualitative analysis software program ATLAS.TI version 8 was used for data organization and analysis.

findingsData analysis resulted in one core theme, as the participants experienced raising their child with ASD as "losing your way, being on a rollercoaster with ups and downs". The core theme comprised of five sub-themes: (a) Experiencing loneliness, isolation, and social stigma, (b) Positive development in the long run and finding solutions to problems, (c) Advocating for their child, being the link, (d) Uncertainty, stress, fear for what the future holds, and (e) Losing themselves, identity crisis.

conclusionsThe parents grappled with feelings of loneliness, isolation, and stigma. Engaging in social interactions with friends and extended family proved particularly challenging. Additionally, they made substantial life adjustments, including changing or even stopping their careers. Nevertheless, despite their many challenges, the children progressed over time. This prompted the parents to devise solutions, be proactive and keep going, for the best interest of their child.

Indexed as

Autism Spectrum DisorderParentingParentsAdultChildFemaleGreeceHumansLonelinessMaleMiddle AgedParent-Child RelationsQualitative ResearchSocial IsolationSocial StigmaASDAutismAutism spectrum disorderLived experienceParentsPhenomenologyQualitative research

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.