Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model
Abstract Introduction This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a high prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interacti...
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| Format: | Article |
| Language: | English |
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Springer
2024-12-01
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| Series: | Discover Social Science and Health |
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| Online Access: | https://doi.org/10.1007/s44155-024-00141-w |
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| author | Albright Obinna Azubuike Precious Chidozie Azubuike Ebuka Light Onyekachi Michael Obule Enyam Temidayo Akinreni James Abuo Chimankpam Kingsley Ogbonna Promise Nmesomachi Timothy Eberechukwu Ruth Uchegbu George Sefa Adai |
| author_facet | Albright Obinna Azubuike Precious Chidozie Azubuike Ebuka Light Onyekachi Michael Obule Enyam Temidayo Akinreni James Abuo Chimankpam Kingsley Ogbonna Promise Nmesomachi Timothy Eberechukwu Ruth Uchegbu George Sefa Adai |
| author_sort | Albright Obinna Azubuike |
| collection | DOAJ |
| description | Abstract Introduction This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a high prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research. Methods This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes. Results The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society. Conclusion Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria. |
| format | Article |
| id | doaj-art-3d0e0ef4beae4cbfaecaa72d0a1f3a0f |
| institution | Kabale University |
| issn | 2731-0469 |
| language | English |
| publishDate | 2024-12-01 |
| publisher | Springer |
| record_format | Article |
| series | Discover Social Science and Health |
| spelling | doaj-art-3d0e0ef4beae4cbfaecaa72d0a1f3a0f2024-12-29T12:47:59ZengSpringerDiscover Social Science and Health2731-04692024-12-014111310.1007/s44155-024-00141-wExperiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological modelAlbright Obinna Azubuike0Precious Chidozie Azubuike1Ebuka Light Onyekachi2Michael Obule Enyam3Temidayo Akinreni4James Abuo5Chimankpam Kingsley Ogbonna6Promise Nmesomachi Timothy7Eberechukwu Ruth Uchegbu8George Sefa Adai9Department of Human Psychology, University of UyoDepartment of Public Health, College of Medical Sciences, University of CalabarUniversity of ChesterDepartment of Kinesiology and Health Sciences, Louisiana State University ShreveportHeidelberg Institute of Global Health, Ruprecht-Karls Universität HeidelbergDepartment of Public Health, College of Medical Sciences, University of CalabarDepartment of Public Health, College of Medical Sciences, University of CalabarDepartment of Human Anatomy, University of UyoDepartment of Public Health, Federal University of TechnologyDepartment of Educational Research, Statistics, Measurement and Evaluation, University of CalabarAbstract Introduction This study examines the experiences and unmet needs of caregivers of children with autism spectrum disorder in Nigeria. With a high prevalence in Nigeria, autism spectrum disorder poses a heavy economic burden on society and the patients’ families, with limited social interactions and stigma. Despite this, the unmet needs and psychosocial burdens of autism spectrum disorder on caregivers have been understudied in Nigeria. The study contributes evidence and raises interest in this area of research. Methods This qualitative study was conducted among twenty-three purposively selected caregivers. Questions from the PREPARE and Zarit Burden Interview tools were adapted for the interview and discussion guides. Data were collected among caregivers of pupils in selected special needs schools in Cross River State, Nigeria. Inductive and deductive approaches were used for the analysis using NVivo 20 pro. The socio-ecological model was used to generate the themes and quotes. Results The study generated four themes and eleven sub-themes across four levels of the socio-ecological model. Findings from our study showed that caregivers of children undergo significant emotional distress, disbelief, and fear at the early stage of diagnosis. Furthermore, families and friends had difficulty comprehending or accepting their children’s diagnosis, which further created tension and misunderstanding. Socio-cultural contexts such as stigma and isolation were not uncommon in the society. Conclusion Given the burden of the psychological demand and stigma attached to caregivers and children with autism, there is an urgent need for a tailor-made intervention with the key interplay of individual, interpersonal, societal/institutional, and policy in Nigeria. Advocacy efforts and awareness chaired by caregivers should be strengthened across all levels of the society in Nigeria.https://doi.org/10.1007/s44155-024-00141-wAutism spectrum disorderCaregiversChildrenNigeriaStigmaCross River State |
| spellingShingle | Albright Obinna Azubuike Precious Chidozie Azubuike Ebuka Light Onyekachi Michael Obule Enyam Temidayo Akinreni James Abuo Chimankpam Kingsley Ogbonna Promise Nmesomachi Timothy Eberechukwu Ruth Uchegbu George Sefa Adai Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model Discover Social Science and Health Autism spectrum disorder Caregivers Children Nigeria Stigma Cross River State |
| title | Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model |
| title_full | Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model |
| title_fullStr | Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model |
| title_full_unstemmed | Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model |
| title_short | Experiences and unmet needs among caregivers of children living with autism spectrum disorder in Nigeria: a qualitative study using the socio-ecological model |
| title_sort | experiences and unmet needs among caregivers of children living with autism spectrum disorder in nigeria a qualitative study using the socio ecological model |
| topic | Autism spectrum disorder Caregivers Children Nigeria Stigma Cross River State |
| url | https://doi.org/10.1007/s44155-024-00141-w |
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