“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study
IntroductionAdequate education, employment, and services for autistic individuals contribute significantly to their and their parents’ quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents per...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2024-02-01
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| Series: | Frontiers in Psychiatry |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpsyt.2024.1279094/full |
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| author | Vivien Németh Vivien Németh Vivien Németh Miklós Győri Bea Ehmann Bea Ehmann Márta Völgyesi-Molnár Márta Völgyesi-Molnár Krisztina Stefanik Krisztina Stefanik |
| author_facet | Vivien Németh Vivien Németh Vivien Németh Miklós Győri Bea Ehmann Bea Ehmann Márta Völgyesi-Molnár Márta Völgyesi-Molnár Krisztina Stefanik Krisztina Stefanik |
| author_sort | Vivien Németh |
| collection | DOAJ |
| description | IntroductionAdequate education, employment, and services for autistic individuals contribute significantly to their and their parents’ quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents perceive factors supporting/hindering access to services, and how they assess the quality of services.MethodsQualitative data provided by 12 parents via a semi-structured interview with a broader focus on parental quality of life and its factors were analyzed. Their autistic children were between 20 and 34 years of age. A thematic analysis was performed on parts of the narratives on their adult periods of life.ResultsA complex pattern of parental perception of supportive and hampering factors influencing access to services unfolded. The sparsity of services/activities and reliable information on them made the space for autonomous decisions on service take highly limited. Parents have modest expectations on quality of services, evaluating them along two key aspects: a safe, positive atmosphere, and communication between parents and professionals. Other aspects of individualized autism-specific support were not or just rarely mentioned.DiscussionParents perceive themselves as investing a lot of effort and resources in getting some form of regular service and/or activity for their adult child. However, these parental efforts often fail, their child becoming inactive, and dependent on their presence. This suggests system-level problems with services for autistic adults in Hungary, with literature showing it is not specific to this country. |
| first_indexed | 2024-03-07T16:14:16Z |
| format | Article |
| id | doaj.art-bce65abe03df444dbf20914f5d068428 |
| institution | Directory Open Access Journal |
| issn | 1664-0640 |
| language | English |
| last_indexed | 2024-03-07T16:14:16Z |
| publishDate | 2024-02-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Psychiatry |
| spelling | doaj.art-bce65abe03df444dbf20914f5d0684282024-03-04T13:48:21ZengFrontiers Media S.A.Frontiers in Psychiatry1664-06402024-02-011510.3389/fpsyt.2024.12790941279094“…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative studyVivien Németh0Vivien Németh1Vivien Németh2Miklós Győri3Bea Ehmann4Bea Ehmann5Márta Völgyesi-Molnár6Márta Völgyesi-Molnár7Krisztina Stefanik8Krisztina Stefanik9Bárczi Gusztáv Faculty of Special Needs Education, Institute of Special Needs Education for People with Atypical Behavior and Cognition, Eötvös Loránd University (ELTE), Budapest, HungaryHungarian Academy of Sciences (HAS) – Eötvös Loránd University (ELTE) ‘Autism in Education’ Research Group, Budapest, HungaryFaculty of Education and Psychology, Doctoral School of Education, Eötvös Loránd University (ELTE), Budapest, HungaryHungarian Academy of Sciences (HAS) – Eötvös Loránd University (ELTE) ‘Autism in Education’ Research Group, Budapest, HungaryHungarian Academy of Sciences (HAS) – Eötvös Loránd University (ELTE) ‘Autism in Education’ Research Group, Budapest, HungaryHUN-REN Research Centre for Natural Sciences, Institute of Cognitive Neuroscience and Psychology, Budapest, HungaryBárczi Gusztáv Faculty of Special Needs Education, Institute of Special Needs Education for People with Atypical Behavior and Cognition, Eötvös Loránd University (ELTE), Budapest, HungaryHungarian Academy of Sciences (HAS) – Eötvös Loránd University (ELTE) ‘Autism in Education’ Research Group, Budapest, HungaryBárczi Gusztáv Faculty of Special Needs Education, Institute of Special Needs Education for People with Atypical Behavior and Cognition, Eötvös Loránd University (ELTE), Budapest, HungaryHungarian Academy of Sciences (HAS) – Eötvös Loránd University (ELTE) ‘Autism in Education’ Research Group, Budapest, HungaryIntroductionAdequate education, employment, and services for autistic individuals contribute significantly to their and their parents’ quality of life. Services and support for adults are dramatically more limited than those for children. The main purpose of this study was to explore how parents perceive factors supporting/hindering access to services, and how they assess the quality of services.MethodsQualitative data provided by 12 parents via a semi-structured interview with a broader focus on parental quality of life and its factors were analyzed. Their autistic children were between 20 and 34 years of age. A thematic analysis was performed on parts of the narratives on their adult periods of life.ResultsA complex pattern of parental perception of supportive and hampering factors influencing access to services unfolded. The sparsity of services/activities and reliable information on them made the space for autonomous decisions on service take highly limited. Parents have modest expectations on quality of services, evaluating them along two key aspects: a safe, positive atmosphere, and communication between parents and professionals. Other aspects of individualized autism-specific support were not or just rarely mentioned.DiscussionParents perceive themselves as investing a lot of effort and resources in getting some form of regular service and/or activity for their adult child. However, these parental efforts often fail, their child becoming inactive, and dependent on their presence. This suggests system-level problems with services for autistic adults in Hungary, with literature showing it is not specific to this country.https://www.frontiersin.org/articles/10.3389/fpsyt.2024.1279094/fullautismadulthoodparental perspectiveaccess to servicesquality of services |
| spellingShingle | Vivien Németh Vivien Németh Vivien Németh Miklós Győri Bea Ehmann Bea Ehmann Márta Völgyesi-Molnár Márta Völgyesi-Molnár Krisztina Stefanik Krisztina Stefanik “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study Frontiers in Psychiatry autism adulthood parental perspective access to services quality of services |
| title | “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study |
| title_full | “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study |
| title_fullStr | “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study |
| title_full_unstemmed | “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study |
| title_short | “…in the middle of nowhere…” Access to, and quality of, services for autistic adults from parents’ perspectives: a qualitative study |
| title_sort | in the middle of nowhere access to and quality of services for autistic adults from parents perspectives a qualitative study |
| topic | autism adulthood parental perspective access to services quality of services |
| url | https://www.frontiersin.org/articles/10.3389/fpsyt.2024.1279094/full |
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