Examining Sibling Dynamics in Ghanaian Families Affected by Autism: A Qualitative Investigation in Accra, Ghana

Priscilla Amanorkuor Dseagu; Emmanuel Adjei-Boateng; Joshua Ofori Essiam; Priscilla Commey-Mintah; Ephraim Quaynor Teye; Cynthia Afua Akwaah Ofori-Atta; Grace Sintim Adasi; Abraham Kwadwo Okrah

doi:10.51867/ajernet.6.1.48

Authors

Priscilla Amanorkuor Dseagu University of Education Winneba, Ghana https://orcid.org/0000-0003-4976-6122
Emmanuel Adjei-Boateng
eadjei-boateng@ug.edu.gh
University of Ghana, Ghana https://orcid.org/0000-0003-1786-8116
Joshua Ofori Essiam University of Professional Studies, Accra, Ghana https://orcid.org/0000-0002-3487-4801
Priscilla Commey-Mintah University of Ghana, Ghana https://orcid.org/0000-0002-6575-4335
Ephraim Quaynor Teye University of Education Winneba, Ghana https://orcid.org/0000-0001-7358-5597
Cynthia Afua Akwaah Ofori-Atta Karisa Foundation, Ghana
Grace Sintim Adasi Agogo Women’s College of Education, Ghana https://orcid.org/0009-0009-8367-2972
Abraham Kwadwo Okrah University of Ghana, Ghana https://orcid.org/0000-0003-4482-1276

Keywords:

Autism, Caregiving Roles, Families, Ghana, Psychological Impact, Sibling Dynamics, Siblings, Support and Coping Strategies

Abstract

The study was a phenomenological study which explored the relationship between siblings without autism and their siblings with autism in Ghana. The family systems theory served as the theory that guided the study. The population of the study entailed siblings and parents of children with autism in Accra. Five siblings and five parents were conveniently sampled from Accra, Ghana, for the study. In-depth interviews were used to collect data. The data were coded and analysed using the thematic approach. The results of the study showed that siblings without autism generally had positive attitudes towards their siblings with autism. This was observed in their willingness to support their siblings when there was a need for such support. It was further revealed that siblings without autism were found to mostly play the role of caregivers to their siblings with autism. Again, the study found that the presence of children with autism in families had some challenging impacts on siblings without autism. These challenging impacts include stigmatisation from members of society, psychological stress and fear of acquiring a disability. From the outcome of the study, it was recommended that professional guidance and counselling sessions should be organized for siblings without autism in families with children with autism. This was to make them well-equipped to deal with the challenges of taking care of their siblings with autism. The study also suggested that future research could focus on exploring the coping strategies used by siblings without autism and their families as they cater to their children and siblings with autism. This study concluded that siblings of individuals with autism in Ghana play very crucial caregiver roles in the lives of their siblings with autism with autism, however they go through psychological stress and social stigma because of their siblings with autism, and therefore require professional counselling on coping strategies.

Dimensions

REFERENCES

American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425787 DOI: https://doi.org/10.1176/appi.books.9780890425787

Appah, J., Senoo-Dogbey, V. E., Armah, D., Wuaku, D. A., & Ohene, L. A. (2024). A qualitative enquiry into the challenging roles of caregivers caring for children with autism spectrum disorders in Ghana. Journal of Pediatric Nursing, 76(6), 23-29. https://doi.org/10.1016/j.pedn.2024.01.029 DOI: https://doi.org/10.1016/j.pedn.2024.01.029

Appiah, S., & Osei, E. A. (2023). "People keep staring at you in public for no reason": Experiences and coping strategies of parents with autistic children in Accra, Ghana. International Journal of Africa Nursing Sciences, 18, 100536. https://doi.org/10.1016/j.ijans.2023.100536 DOI: https://doi.org/10.1016/j.ijans.2023.100536

Bogdan, R. C., & Biklen, S. K. (2007). Qualitative research in education: An introduction to theory and methods (5th ed.). Pearson Education.

Bowen, M. (1978). Family therapy in clinical practice. Aronson.

Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Harvard University Press. https://doi.org/10.4159/9780674028845 DOI: https://doi.org/10.4159/9780674028845

Cohen, L., Manion, L., & Morrison, K. (2007). Research methods in education (6th ed.). Routledge.

https://doi.org/10.4324/9780203029053 DOI: https://doi.org/10.4324/9780203029053

Corsano, P., Musetti, A., Guidotti, L., & Capelli, F. (2017). Typically developing adolescents experience growing up with a brother with an autism spectrum disorder. Journal of Intellectual & Developmental Disability, 42(2), 151-161. https://doi.org/10.3109/13668250.2016.1226277 DOI: https://doi.org/10.3109/13668250.2016.1226277

Creswell, J. W. (2012). Educational research: Planning, conducting, and evaluating quantitative and qualitative research (4th ed.). Sage.

Dixon, P., Badoe, E. V., & Owusu, V. N. A. (2015). Family perspectives of autism spectrum disorder in urban Ghana. Journal of the International Child Neurology Association, 1(1), 1-7. https://doi.org/10.17724/jicna.2015.107 DOI: https://doi.org/10.17724/jicna.2015.107

Dogbe, D. S. Q. (2015). Preparing students with disabilities to transition from secondary school to postschool settings in Ghana: Perceptions of teachers and administrators (Doctoral dissertation). Ball State University.

Dogbe, J. A., Kyeremateng, J. D. A., Opoku, M. P., Nketsia, W., & Hammond, C. (2019). "There is family tension, but they understand…": Familial and sibling relationships following the diagnosis of cerebral palsy in children in Ghana. International Journal of Developmental Disabilities, 68(1), 35-46. https://doi.org/10.1080/20473869.2019.1573572 DOI: https://doi.org/10.1080/20473869.2019.1573572

Forero, R., Nahidi, S., De Costa, J., Mohsin, M., Fitzgerald, G., Gibson, N., McCarthy, S., & Aboagye-Sarfo, P. (2018). Application of four-dimension criteria to assess rigour of qualitative research in emergency medicine. BMC Health Services Research, 18, 1-11. https://doi.org/10.1186/s12913-018-2915-2 DOI: https://doi.org/10.1186/s12913-018-2915-2

Fraenkel, J. R., & Wallen, N. E. (2009). How to design and evaluate research in education (7th ed.). McGraw-Hill.

Green, L. (2013). The wellbeing of siblings of individuals with autism. International Scholarly Research Notices - Neurology, 13(1), 1-7. https://doi.org/10.1155/2013/417194 DOI: https://doi.org/10.1155/2013/417194

Hall, S. A., & Rossetti, Z. (2018). The roles of adult siblings in the lives of people with severe intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 31(3), 423-434.

https://doi.org/10.1111/jar.12421 DOI: https://doi.org/10.1111/jar.12421

Jager, J., Putnick, D. L., & Bornstein, M. H. (2017). More than just convenient: The scientific merits of homogeneous convenience samples. Monographs of the Society for Research in Child Development, 82(2), 13-30. https://doi.org/10.1111/mono.12296 DOI: https://doi.org/10.1111/mono.12296

Johnson, M. T., Williamson, R. L., Casey, L. B., Stockton, M., & Elswick, S. (2020). Sibling relationships when one sibling has ASD: A preliminary investigation to inform the field and strengthen the bond. Children and Youth Services Review, 116, 105190. https://doi.org/10.1016/j.childyouth.2020.105190 DOI: https://doi.org/10.1016/j.childyouth.2020.105190

Jones, E. A., Fiani, T., Stewart, J. L., Sheikh, R., Neil, N., & Fienup, D. M. (2019). When one sibling has autism: Adjustment and sibling relationship. Journal of Child and Family Studies, 28(6), 1272-1282. https://doi.org/10.1007/s10826-019-01374-z DOI: https://doi.org/10.1007/s10826-019-01374-z

Kovshoff, H., Cebula, K., Tsai, H. W. J., & Hastings, R. P. (2017). Siblings of children with autism: The Siblings Embedded Systems Framework. Current Developmental Disorders Reports, 4(2), 37-45. https://doi.org/10.1007/s40474-017-0110-5 DOI: https://doi.org/10.1007/s40474-017-0110-5

Kuhlthau, K. A., Traeger, L., Luberto, C. M., Perez, G. K., Goshe, B. M., Fell, L., Iannuzzi, D., & Park, E. R. (2023). Resiliency intervention for siblings of children with autism spectrum disorder: A randomized pilot trial. Academic Pediatrics, 23(6), 1187-1195. https://doi.org/10.1016/j.acap.2022.11.011 DOI: https://doi.org/10.1016/j.acap.2022.11.011

Kyngäs, H. (2020). Qualitative research and content analysis. In H. Kyngäs, K. Mikkonen, & M. Kääriäinen (Eds.), The application of content analysis in nursing science research (pp. 3-11). Springer. https://doi.org/10.1007/978-3-030-30199-6_1 DOI: https://doi.org/10.1007/978-3-030-30199-6_1

Lincoln, Y., & Guba, E. (1985). Naturalistic inquiry. Sage. https://doi.org/10.1016/0147-1767(85)90062-8 DOI: https://doi.org/10.1016/0147-1767(85)90062-8

Martinez, B., Pechlivanoglou, P., Meng, D., Traubici, B., Mahood, Q., Korczak, D., Colasanto, M., Mahant, S., Orkin, J., & Cohen, E. (2022). Clinical health outcomes of siblings of children with chronic conditions: A systematic review and meta-analysis. The Journal of Pediatrics, 25(6), 83-92. https://doi.org/10.1016/j.jpeds.2022.07.002 DOI: https://doi.org/10.1016/j.jpeds.2022.07.002

Mazumder, R., & Thompson-Hodgetts, S. (2019). Stigmatization of children and adolescents with autism spectrum disorders and their families: A scoping study. Review Journal of Autism and Developmental Disorders, 6(2), 96-107. https://doi.org/10.1007/s40489-018-00156-5 DOI: https://doi.org/10.1007/s40489-018-00156-5

McMillan, J. H., & Schumacher, S. (2001). Education research: A conceptual introduction (5th ed.). Longman.

Melli, S., Grossi, E., & Zarbo, C. (2016). Mental stress in parents and siblings of autistic children: Review of the literature and an original study of the related psychological dimensions. Nova Science Publishers.

Mokoena, N., & Kern, A. (2022). Experiences of siblings to children with autism spectrum disorder. Frontiers in Psychiatry, 13, 959117. https://doi.org/10.3389/fpsyt.2022.959117 DOI: https://doi.org/10.3389/fpsyt.2022.959117

Moss, P., Eirinaki, V., Savage, S., & Howlin, P. (2019). Growing older with autism: The experiences of adult siblings of individuals with autism. Research in Autism Spectrum Disorders, 63, 42-51.

https://doi.org/10.1016/j.rasd.2018.10.005 DOI: https://doi.org/10.1016/j.rasd.2018.10.005

Qutoshi, S. B. (2018). Phenomenology: A philosophy and method of inquiry. Journal of Education and Educational Development, 5(1), 215-222. https://doi.org/10.22555/joeed.v5i1.2154 DOI: https://doi.org/10.22555/joeed.v5i1.2154

Roberts, R. E. (2020). Qualitative interview questions: Guidance for novice researchers. Qualitative Report, 25(9). 3185-3203. https://doi.org/10.46743/2160-3715/2020.4640 DOI: https://doi.org/10.46743/2160-3715/2020.4640

Shivers, C. M. (2019). Empathy and perceptions of their brother or sister among adolescent siblings of individuals with and without autism spectrum disorder. Research in Developmental Disabilities, 92, 103451. https://doi.org/10.1016/j.ridd.2019.103451 DOI: https://doi.org/10.1016/j.ridd.2019.103451

Smith, T., & Perry, A. (2005). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11(1), 77-88.

Sutton, J., & Austin, Z. (2015). Qualitative research: Data collection, analysis, and management. The Canadian Journal of Hospital Pharmacy, 68(3), 226-231. https://doi.org/10.4212/cjhp.v68i3.1456 DOI: https://doi.org/10.4212/cjhp.v68i3.1456

Van der Merwe, C., Bornman, J., Donohue, D., & Harty, M. (2017). The attitude of typically developing adolescents towards their siblings with autism spectrum disorder. South African Journal of Communication Disorders, 64(1), a184. https://doi.org/10.4102/sajcd.v64i1.184 DOI: https://doi.org/10.4102/sajcd.v64i1.184

Varpio, L., Ajjawi, R., Monrouxe, L. V., O'Brien, B. C., & Rees, C. E. (2017). Shedding the cobra effect: problematising thematic emergence, triangulation, saturation and member checking. Medical education, 51(1), 40-50. https://doi.org/10.1111/medu.13124 DOI: https://doi.org/10.1111/medu.13124

Viswanathan, P., Kishore, M. T., & Seshadri, S. P. (2022). Lived experiences of siblings of individuals with autism spectrum disorder in India: An interpretative phenomenological analysis. Indian Journal of Psychological Medicine, 44(1), 45-52. https://doi.org/10.1177/02537176211029111 DOI: https://doi.org/10.1177/02537176211029111