Exploring the Lived Experiences of Caregivers of Children with Autism in Accra
DOI:
https://doi.org/10.29120/jds.v12i2.859Keywords:
Autism, Caregiver Identity Theory, Caregivers, Ghana, Inclusivity.Abstract
Background: Caring for children with autism (CWA) can place substantial emotional, social, financial, and psychological demands on caregivers, particularly in low-resource settings with limited specialised services and institutional support. Despite growing research on autism caregiving in Ghana, limited attention has been given to caregivers’ lived experiences.
Objective: To explore the lived experiences of caregivers of CWA in Accra, focusing on their caregiving roles, needs, challenges, and coping mechanisms.
Methods: A qualitative interpretive phenomenological approach was used. Purposive sampling recruited 20 caregivers of CWA with support from three institutions providing autism-related services in Accra. Data were collected through individual in-depth interviews and analysed thematically using Braun and Clarke’s approach.
Results: Three interconnected educational and therapeutic roles emerged alongside traditional parental responsibilities, increasing caregivers’ burden of care. Mothers assumed greater caregiving responsibility, whereas fathers reported greater psychological stress. Caregivers’ needs centred on acceptance, which was challenged by negative societal attitudes and associated with physical, social, and psychological difficulties. Financial reframing, social support, and religious activities were important coping mechanisms.
Conclusion: Caregivers of CWA undertake complex educational and therapeutic roles in addition to routine caregiving, contributing to substantial burden. Recommendations: Social protection programmes should better address the needs of CWA and their caregivers, alongside caregiver-skills training, family-inclusive strategies, and community-based autism awareness through partnerships among government, NGOs, traditional authorities, faith-based organisations, and social workers.
Keywords: Autism, caregiver, identity theory, caregivers, inclusivity
References
Acheampong, E., Mprah, W. K., Owusu, I., & Bediako, J. (2017). Role of caregivers of children with intellectual disabilities and support systems available to them in Ghana. Disability, CBR and Inclusive Development, 28(4), 80–95. https://doi.org/10.5463/dcid.v28i4.656
Acheampong, J. O. (2024). Caring for autism in Ghana: Exploring the psychological impact and coping strategies of caregivers. Cogent Education, 11(1), 2374686. https://doi.org/10.1080/2331186X.2024.2374686
Aderinto, N., Olatunji, D., & Idowu, O. (2023). Autism in Africa: Prevalence, diagnosis, treatment and the impact of social and cultural factors on families and caregivers: A review. Annals of Medicine and Surgery, 87, 1–10. https://doi.org/10.1016/j.amsu.2023.104923
Al Awaji, N. N., Al-Taleb, S. M., Albagawi, T. O., Alshammari, M., Sharar, F. A., & Mortada, E. M. (2024). Evaluating caregivers’ concerns, needs, and levels of satisfaction with the services provided for ASD children in Saudi Arabia. Journal of Multidisciplinary Healthcare, 17, 123–146. https://doi.org/10.2147/JMDH.S447151
Allotey, E. (2019). Parental experiences of raising a child with autism spectrum disorder in Ghana: A case study research analysis (Master's thesis). University of Gothenburg. https://gupea.ub.gu.se/server/api/core/bitstreams/f4462c43-e89e-4308-b697-f260b7f47e63/content
American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorder (5thed.). American Psychiatric Publishing. https://doi.org/10.1176/appi.books.9780890425787
American Psychological Association. (2023, November 15). Autism spectrum disorder. In APA dictionary of psychology. https://dictionary.apa.org/autism-spectrum-disorder
American Psychological Association. (n.d.). Discrimination: What is it and how to cope? https://www.apa.org/topics/racism-bias-discrimination/types-stress.
Anthony, J. H. (2010). Towards inclusion: Influences of culture and internationalization on personhood, educational access, policy and provision for students with autism in Ghana (Doctoral dissertation, University of Sussex). Sussex Research Online. http://sro.sussex.ac.uk/id/eprint/2347/
Apaah, J. A., Amissah, E. M., & Agbadi, P. (2023). Exploring the psychological distress and resilience of caregivers of children with autism spectrum disorder in Ghana. BMC Psychiatry, 23(1), 518. https://doi.org/10.1186/s12888-023-05021-1
Apaah, J., Senoo-Dogbey, V. E., Armah, D., & Ohene, L. A. (2023). “We have challenges”: The cry of caregivers with children with autism spectrum disorders in Ghana. SSRN Electronic Journal. https://doi.org/10.2139/ssrn.4573325
Appiah, S., & Osei, E. A. (2023). “People keep staring at you in public for no reason”: Experiences and coping strategies of caregivers with autistic children in Accra, Ghana. International Journal of Africa Nursing Sciences, 18, Article 100536. https://doi.org/10.1016/j.ijans.2023.100536
Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators. (2012). Prevalence of autism spectrum disorders-Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. Morbidity and Mortality Weekly Report: Surveillance Summaries, 61(3), 1–19.
Autism-Europe. (2003). Autism and education: A position paper on education for people with autism. Autism-Europe AISBL.
Burrell, A., Ives, J., & Unwin, G. (2017). The experiences of fathers who have offspring with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(4), 1135–1147. https://doi.org/10.1007/s10803-017-3035-2
Charalambous, A. (2023). Caregiving and caregivers: Concepts, caregiving models, and systems. In A. Charalambous (Ed.), Informal caregivers: From hidden heroes to integral part of care (pp. 1–11). Springer. https://doi.org/10.1007/978-3-031-18385-8_1
Colic, M., Dababnah, S., Garbarino, N., & Betz, G. (2022). Parental experiences raising children with autism spectrum disorder in Eastern Europe: A scoping review. International Journal of Developmental Disabilities, 68(1), 1–13. https://doi.org/10.1080/20473869.2020.1859889
D’Arcy, E., Burnett, T., Capstick, E., Elder, C., Slee, O., Girdler, S., & Milbourn, B. (2023). The well-being and support needs of Australian caregivers of neurodiverse children. Journal of Autism and Developmental Disorders. Advance online publication. https://doi.org/10.1007/s10803-023-06146-y
Dąbrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of preschool children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266–280. https://doi.org/10.1111/j.1365-2788.2010.01258.x
Dada, S., Bastable, K., & Nassenstein, S. (2021). Autism spectrum disorder in Africa: A perspective. Frontiers in Psychiatry, 12, Article 616. https://doi.org/10.3389/fpsyt.2021.00616
Davy, G., Unwin, K. L., Barbaro, J., & Dissanayake, C. (2022). Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review. Autism, 26(8),
Dey, N. E. Y., Amponsah, B., & Wiafe-Akenteng, C. B. (2019). Spirituality and subjective well-being of Ghanaian caregivers of children with special needs: The mediating role of resilience. Journal of Health Psychology, 26(9), 1377–1388. https://doi.org/10.1177/1359105319873956
Ensign, K., & Normandin, L. (2023). Trust in therapeutic work with adolescents with and without personality disorders: A transference-focused therapy perspective. Journal of Personality Disorders, 37(5), 580–603. https://doi.org/10.1521/pedi_2023_37_570
Fombonne, E. (2024, June). Epidemiological surveys of autism spectrum disorders: Global and regional perspectives. In R. E. Tremblay, M. Boivin, & R. DeV. Peters (Eds.), Encyclopedia on Early Childhood Development. https://www.child-encyclopedia.com/autism/according-experts/epidemiological-surveys-autism-spectrum-disorders
Franz, L., Adewumi, K., Chambers, N., Viljoen, M., Baumgartner, J. N., & de Vries, P. J. (2018). Providing early detection and intervention for autism spectrum disorder in South Africa: Stakeholder perspectives from the Western Cape province. Journal of Child & Adolescent Mental Health, 30(2), 91–108. https://doi.org/10.2989/17280583.2018.1477712
Franz, L., Chambers, N., von Isenburg, M., & de Vries, P. J. (2017). Autism spectrum disorder in sub-Saharan Africa: A comprehensive scoping review. Autism Research, 10(5), 723–749. https://doi.org/10.1002/aur.1766
Gomda, A., Sulemana, N., & Zakaria, H. (2022). Access to education for persons with disabilities in Ghana: A review. Environmental Sciences Proceedings, 15(1), Article 50. https://doi.org/10.3390/environsciproc2022015050
Gona, J. K., Newton, C. R., Rimba, K. K., Mapenzi, R., Van de Vijver, F., & Abubakar, A. (2017). Challenges and coping strategies of caregivers of children with autism on the Kenyan coast. African Journal of Disability, 6, 1–9. https://doi.org/10.4102/ajod.v6i0.295
Gona, J. K., Newton, C. R., Rimba, K., Mapenzi, R., Kihara, M., Van de Vijver, F., & Abubakar, A. (2017). Caregivers’ and professionals’ perceptions on causes and treatment options for autism spectrum disorders in a Kenyan context. International Journal of Disability, Development and Education, 64(5), 521–537. https://doi.org/10.1080/1034912X.2016.1237826
Khabala, E. M. (2018). The prevalence of co-morbid autism spectrum disorder among persons with intellectual disability (Master's thesis, University of Nairobi). University of Nairobi Digital Repository. https://erepository.uonbi.ac.ke/handle/11295/82051
Lee, J. D., & Meadan, H. (2021). Parent-mediated interventions for children with ASD in low-resource settings: A scoping review. Review Journal of Autism and Developmental Disorders, 8(3), 285–298. https://doi.org/10.1007/s40489-020-00226-3
Leigh Fewster, D., Uys, C., & Govender, P. (2020). Interventions for caregivers of children with autism spectrum disorder: A cross-sectional study of current practices of stakeholders in South Africa. South African Journal of Occupational Therapy, 50(3), 4–8. https://doi.org/10.17159/2310-3833/2020/vol50n3a2
Louis-Delsoin, C., Morales, E., Ruiz Rodrigo, A., & Rousseau, J. (2022). Exploring the home environment of adults living with autism spectrum disorder: A qualitative study. International Journal of Developmental Disabilities. Advance online publication. https://doi.org/10.1080/20473869.2022.2140612
Mbamba, C. R., & Ndemole, I. K. (2021). “I paused my life”: Experiences of single mothers caring for their autistic children in Ghana. Journal of Social Service Research, 47(5), 659–669. https://doi.org/10.1080/01488376.2021.1875966
Montgomery, R. J., Rowe, J. M., & Kosloski, K. D. (2007). Caregiver identity theory: Overview. Research on Aging, 29(3), 267–290. https://doi.org/10.1177/0164027506298225
Naami, A. (2014). Breaking the barriers: Ghanaians’ perspectives about the social model. Disability, CBR & Inclusive Development, 25(1), 21–39. https://doi.org/10.5463/dcid.v25i1.294
Naidoo, M. K., & Govender, S. (2022). Parental participation in supporting the development of communication skills in autistic children. International Journal of Early Childhood Special Education, 14(1), 312–325. https://doi.org/10.9756/INT-JECSE/V14I1.221061
Nutifa, E. Y., & Amponsah, B. (2020). Sources of perceived social support on resilience amongst parents raising children with special needs in Ghana. Heliyon, 6(7), e04388. https://doi.org/10.1016/j.heliyon.2020.e04388
O’Connor, D. L. (2007). Self-identifying as a caregiver: Exploring the positioning process. Journal of Aging Studies, 21(2), 165–174. https://doi.org/10.1016/j.jaging.2006.06.002
Opoku, M. P., Nketsia, W., Banye, M., Mprah, W., Dogbe, J. A., & Badu, E. (2020). Caregiving experiences and expectations of caregivers with in-school children with intellectual disability in Ghana. Research in Developmental Disabilities, 96, 103–115. https://doi.org/10.1016/j.ridd.2019.103515
Opoku, M. P., Nketsia, W., Mprah, W. K., Agyei-Okyere, E., & Safi, J. (2021). Inclusive education for children with intellectual and developmental disabilities in Ghana: Status, challenges, and opportunities. Journal of Policy and Practice in Intellectual Disabilities, 18(2), 138–147. https://doi.org/10.1111/jppi.12378
Opoku, M. P., Nketsia, W., Mprah, W. K., Agyei-Okyere, E., & Safi, M. (2021). The interaction between typically developing students and peers with autism spectrum disorder in regular schools in Ghana: An exploration using the theory of planned behaviour. Frontiers in Psychology, 12, Article 752569. https://doi.org/10.3389/fpsyg.2021.752569
Oti-Boadi, M., Osei-Tutu, A., & Mate-Kole, C. C. (2022). Challenges and support needs of caregivers of children with developmental disabilities (DD) in Accra, Ghana. Research in Developmental Disabilities, 128, Article 104274. https://doi.org/10.1016/j.ridd.2022.104274
Oti-Boadi, M., Osei-Tutu, A., & Mate-Kole, C. C. (2022). The lived experiences of caregivers of children with autism in Ghana. Journal of Autism and Developmental Disorders, 52(1), 123–135. https://doi.org/10.1007/s10803-021-04936-4
Pop, R. S., Puia, A., & Mosoiu, D. (2022). Factors influencing the quality of life of the primary caregiver of a palliative patient: Narrative review. Journal of Palliative Medicine, 25(5), 813–829. https://doi.org/10.1089/jpm.2021.0481
Ruparelia, K., Abubakar, A., Badoe, E., Bakare, M., Visser, K., Chugani, D. C., Arab, G., & Shih, A. (2016). Autism spectrum disorders in Africa: Current challenges in identification, assessment, and treatment—A report on the International Child Neurology Association meeting on ASD in Africa, Ghana, April 3–5, 2014. Journal of Child Neurology, 31(8), 1018–1026. https://doi.org/10.1177/0883073815623628
Rylaarsdam, L., & Guemez-Gamboa, A. (2019). Genetic causes and modifiers of autism spectrum disorder. Frontiers in Cellular Neuroscience, 13, 385. https://doi.org/10.3389/fncel.2019.00385
Salomone, E., Pacione, L., Shire, S., Brown, F. L., Reichow, B., & Servili, C. (2019). Development of the WHO caregiver skills training program for developmental disorders or delays. Frontiers in Psychiatry, 10, Article 769. https://doi.org/10.3389/fpsyt.2019.00769
Samadi, H., & Samadi, S. A. (2020). Understanding different aspects of caregiving for individuals with autism spectrum disorders (ASDs): A narrative review of the literature. Brain Sciences, 10(8), Article 557. https://doi.org/10.3390/brainsci10080557
Shivers, C. M., Sonnier-Netto, L., & Lee, G. K. (2019). Needs and experiences of family caregivers of individuals with autism spectrum disorders across the lifespan. Journal of Policy and Practice in Intellectual Disabilities, 16(1), 21–29. https://doi.org/10.1111/jppi.12264
Shorey, S., Ng, E. D., Haugan, G., & Law, E. (2020). The parenting experiences and needs of Asian caregivers of children with autism: A meta-synthesis. Autism, 24(3), 591–604. https://doi.org/10.1177/1362361319878558
Skitsko, C. R. (2023). The impact of autism spectrum disorder on family (Master's thesis, Bethel University). Spark Repository. bethel.edu
Stoner, J. B., & Stoner, C. R. (2016). Career disruption: The impact of transitioning from a full-time career professional to the primary caregiver of a child with autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 31(2), 104–114. https://doi.org/10.1177/1088357614528796
Tagnan, J. N., Amponsah, O., Takyi, S., Azunre, G., & Braimah, I. (2022). A view of urban sprawl through the lens of family nuclearisation. Habitat International, 123, Article 102555. https://doi.org/10.1016/j.habitatint.2022.102555
Teodoro, A. (2020). Contesting the global development of sustainable and inclusive education: Education reform and the challenges of neoliberal globalization. Routledge.
Tye, C., Runicles, A., Whitehouse, A. J., & Alvares, G. A. (2019). Characterizing the interplay between autism spectrum disorder and comorbid medical conditions: An integrative review. Frontiers in Psychiatry, 9, Article 751. https://doi.org/10.3389/fpsyt.2018.00751
Van der Linde, J., Erasmus, S., & Kritzinger, A. (2019). Profiles of public and private autism-specific schools in Gauteng. South African Journal of Childhood Education, 9(1), 1–9. https://doi.org/10.4102/sajce.v9i1.629
Vismara, L. A., & Rogers, S. J. (2010). Behavioral treatments in autism spectrum disorder: What do we know? Annual Review of Clinical Psychology, 6(1), 447–468. https://doi.org/10.1146/annurev-clinpsy-050209-121544
Van Kessel, R., Hrzic, R., Czabanowska, K., Baranger, A., Azzopardi-Muscat, N., Charambalous-Darden, J., & Roman-Urrestarazu, A. (2020). Autism and education—International policy in small EU states: Policy mapping in Malta, Cyprus, Luxembourg, and Slovenia. European Journal of Public Health, 30(6), 1078–1083. https://doi.org/10.1093/eurpub/ckaa098
World Health Organization. (2013). Meeting report: Autism spectrum disorders and other developmental disorders: From raising awareness to building capacity (Geneva, Switzerland, 16–18 September 2013). World Health Organization. https://apps.who.int/iris/handle/10665/103312
World Health Organization. (2023, November 15). Autism. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
Zarzycki, M., Seddon, D., Prendergast, L., & Morrison, V. (2023). Informal caregiver motivations, values, challenges and gains: A qualitative study. BMC Public Health, 23(1), Article 736. https://doi.org/10.1186/s12889-023-15632-4
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