Ostracised: Experiences of Mothers of Children with Disabilities in Zimbabwe

Authors

  • Tafadzwa Rugoho Leonard Cheshire
  • France Maphosa Department of Sociology University of Botswana

DOI:

https://doi.org/10.25159/2412-8457/1053

Keywords:

Zimbabwe, children with disabilities, mothers, community, experiences, challenges, witchcraft

Abstract

The birth of a child normally brings joy and celebration to the family. On the other hand, the birth of a disabled child brings a number of challenges to the family. This article resulted from a qualitative study aimed at describing the experiences of mothers of children with disabilities in Zimbabwe. Data were collected using focus group discussions (FGDs). The composition of the focus groups was based on age. The first group comprised women in the 18–24-year age group; the second group was made up of 25–30-year olds; the third one was of those between the ages of 31–35 years; the fourth group comprised 36–43 year olds; and the fifth group was made up of women of 44 years and older. The study found that mothers of children with disabilities face a plethora of psychological, social and economic challenges, some of which seem to escape the attention of policy makers and development practitioners. Witchcraft accusation was identified in this study as the greatest challenge that mothers of children with disabilities face. As a result these mothers do not get support from family members and the community. In the absence of family and community support, government and non-governmental organisations have to come up with initiatives to support mothers of children with disabilities.

References

Arfan, R. 2012. “A Study of Problems Faced by Mothers of the Disabled Children in Rural Areas of District Faisalabad.†Global Journal of Human Social Science Sociology, Economics and Political Science 12 (12): Version 1.0.

Baker, J., and Fenning, R. M. 2007. “Prediction of Social Skills in 6-year-old Children without Development Delays.†American Journal of Intellectual and Developmental Disability, no. 112, 375–91. http://dx.doi.org/10.1352/0895-8017(2007)112[0375:POSSIY]2.0.CO;2 DOI: https://doi.org/10.1352/0895-8017(2007)112[0375:POSSIY]2.0.CO;2

Barr, O., McConkey, R., and McConaghie, J. 2003. “Views of People with Learning Difficulties about Current and Future Accommodation: The Use of Focus Groups to promote Discussion.†Disability and society, no. 18, 577–598. https://doi.org/10.1080/0968759032000097834 DOI: https://doi.org/10.1080/0968759032000097834

Baxamusa, B. N. 2011. Types of disabilities. http://www.buzzle.com/articles/types-of-disabilities.html

Berker, A. N. and Yalçin, M. S. 2008. “Cerebral Palsy: Orthopedic Aspects and Rehabilitation.†Pediatric Clinics of North America 55 (5): 1209–25. https://doi.org/10.1016/j.pcl.2008.07.011 DOI: https://doi.org/10.1016/j.pcl.2008.07.011

Blachar, J., and Bakar, B. 2007. “Positive Impact of Intellectual Disability on Families.†American Journal of Mental Retardation, no. 112, 330–48. https://doi.org/10.1352/0895-8017(2007)112[0330:PIOIDO]2.0.CO;2 DOI: https://doi.org/10.1352/0895-8017(2007)112[0330:PIOIDO]2.0.CO;2

Booth, T., and Booth, W. 1996. “Sounds of Silence: Narrative Research with Inarticulate Subjects.†Disability and Society, no. 11, 55–69. https://doi.org/10.1080/09687599650023326 DOI: https://doi.org/10.1080/09687599650023326

Boyle , C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., and Kogan, M. D. 2011. “Trends in the Prevalence of Developmental Disabilities in US Children, 1997-2008.†Pediatrics, No. 1034-42. DOI: https://doi.org/10.1542/peds.2010-2989

Bryman, A, 2001. Social Research Methods. Oxford: Oxford University Press.

Chang, Heng-Hao. 2009. “From Housewives to Activists: Lived Experiences of Mothers for Disability Rights in Taiwan.†AJWS 15 (3): 34–59. DOI: https://doi.org/10.1080/12259276.2009.11666072

Choruma, T. 2007. The Forgotten Tribe: Disability and Poverty. London: Progression.

Crocco, A. G., Villasis-Keever, M., and Jadad, A. R. 2002. “Analysis of Cases of Harm associated with use of Health Information on the Internet. JAMA: The Journal of the American Medical Association 287 (21): 2869–2871. https://doi.org/10.1001/jama.287.21.2869 DOI: https://doi.org/10.1001/jama.287.21.2869

Croot, E. J., Grant, G., and Cooper, C. L. 2008. “Perceptions of the Causes of Childhood Disability among Pakistani Families living in the UK.†Health and Social Care in the Community, 16 (6): 606–613. https://doi.org/10.1111/j.1365-2524.2008.00784.x DOI: https://doi.org/10.1111/j.1365-2524.2008.00784.x

Davis, N. O., Carter, A. S. 2008. “Parenting Stress in Mothers and Fathers of Toddlers with Autism Spectrum Disorders: Associations with Child Characteristics.†Journal of Autism and Developmental Disorders, 38 (7): 1278–1291. https://doi.org/10.1007/s10803-007-0512-z DOI: https://doi.org/10.1007/s10803-007-0512-z

Deepthi, K., and Krishnamurthy, R. R. 2011. “Mental Health and Quality of Life of Caregivers of Individuals with Cerebral Palsy in a Community Based Rehabilitation Programme in Rural Karnataka.†Disability, CBR and Inclusive Development, no. 22, 29–38. DOI: https://doi.org/10.5463/dcid.v22i3.56

Edwardraj S, S., Mumtaj, K., Prasad, J. H., Kuruvilla, A., and Jacob, K. S. 2010. “Perceptions about Intellectual Disability: A Qualitative Study from Vellore, South India.†Journal of Intellectual Disabilility Research, 736-48. DOI: https://doi.org/10.1111/j.1365-2788.2010.01301.x

Floyd , F. J., and Gallagher, E. M. 1997. “Parental Stress, Care Demands, and Use of Support Services for School-Age Children with Disabilities and Behavior Problems.†Family Relations, 359-37. https://doi.org/10.2307/585096 DOI: https://doi.org/10.2307/585096

Forchuk, C. Jeffrey, P., Reiss, T., O’Regan, P., Ethridge, L. D., and Rudnick, A. 2015. Client Perceptions of the Mental Health Engagement Network: A Qualitative Analysis of an Electronic Personal Health Record. BMC Psychiatry. https://doi.org/10.1186/s12888-015-0614-7 DOI: https://doi.org/10.1186/s12888-015-0614-7

Glazzard, J., and Overall, K. 2012. “Living with Autistic Spectrum Disorder: Parental experiences of raising a child with Autistic Spectrum Disorder (ASD).†British Journal of Learning Support 27 (1): 37–45. https://doi.org/10.1111/j.1467-9604.2011.01505.x DOI: https://doi.org/10.1111/j.1467-9604.2011.01505.x

Gona, J. K., Mung’ala-Odera, V., Newton, C. R., and Hartley, S. 2011. “Caring for Children with Disabilities in Kilifi, Kenya: What is the Carer’s Experience?†Child: Care, Health and Development 37 (2): 175–183. http://dx.doi.org/10.1111/j.1365-2214. 2010.01124.x DOI: https://doi.org/10.1111/j.1365-2214.2010.01124.x

Government of Zimbabwe. 2013. Constitution of Zimbabwe (Amendment 20). Harare: GoZ.

Green, S. E. 2003. “What do you mean ‘what's wrong with her?’†Stigma and the Lives of Families of children with Disabilities.†Social Science and Medicine 57 (8): 1361–1374. https://doi.org/10.1016/S0277-9536(02)00511-7 DOI: https://doi.org/10.1016/S0277-9536(02)00511-7

Green, S. E. 2007. “We’re Tired, not Sad: Benefits and Burdens of mothering a Child with a Disability.†Social Science and Medicine, no. 64, 150–163. https://doi.org/10.1016/j.socscimed.2006.08.025 DOI: https://doi.org/10.1016/j.socscimed.2006.08.025

Halls, T. T. 2008. The Experience of Parents raising a Child with Special Health Care Needs while living in a Rural Area.†(Nursing, Nursing). ProQuest dissertations and theses, retrieved from http://search.proquest.com.proxy1.lib.uwo.ca/docview/304453505?accountid=15115

Hamedanchi, A., Khankeh, H. R., Fadaye, R., Fadayevatan, R., Teymouri, R., and Sahaf, R. 2016. “Bitter Experiences of Elderly Parents of Children with Intellectual Disabilities: A Phenomenological Study.†Iranian Journal of Nursing and Midwifery Research, 278-283. DOI: https://doi.org/10.4103/1735-9066.180385

Hartley, S., Ojwang, P., Baguwemu, A., Ddamulira, M., and Chavuta, A. 2005. “How do Carers of Disabled Children cope? The Ugandan Perspective.†Child: Care, Health and Development 31 (2): 167–180. http://dx.doi.org/10.1111/j.1365-2214.2004.00464.x DOI: https://doi.org/10.1111/j.1365-2214.2004.00464.x

Hodapp, R., and Krasner, D. 1994. “Families of Children with Disabilities: Findings from a National Sample of Eight-Grade Students.†Exceptionality 5 (2): 71–81. https://doi.org/10.1207/s15327035ex0502_2 DOI: https://doi.org/10.1207/s15327035ex0502_2

Koszela, K. 2013. “The Stigmatization of Disabilities in Africa and the Developmental Effects.†Independent Study Project (ISP) Collection, 1639.

Ivanoff, S., and Hultberg, J. 2006. “Understanding the Multiple Realities of Everyday Life: Basic Assumptions in Focus-Group Methodology.†Scandinavian Journal of Occupational Therapy, no. 13, 125–132. https://doi.org/10.1080/11038120600691082 DOI: https://doi.org/10.1080/11038120600691082

Jackson, C. 1998. “Listen to mother.†Mental Health Care 1 (7): 217–219.

Jones, P., and Stenfert Kroese, B. 2007. “Service users’ views of Physical Restraint Procedures in Secure Settings for People with Learning Disabilities.†British Journal of Learning Disabilities 35 (1): 50–54. https://doi.org/10.1111/j.1468-3156.2006.00390.x DOI: https://doi.org/10.1111/j.1468-3156.2006.00390.x

Kaiser, A. P., and Trent, J. A. 2007. “Communication Intervention for Young Children with Disabilities: Naturalistic Approaches to Promoting Development.†In Handbook of Developmental Disabilities, edited by S. L. Odom, R. H. Horner, M. E. Snell and J. B. Blacher. New York: Guilford Press, 224–246.

Kermanshahi, S. M., Vanaki, Z., and Ahmadi, F. 2008. “Iranian Mother’s Perceptions of their Lives with Children with Mental Retardation: A Preliminary Phenomenological Investigation.†Journal of Dev Phys Disability, no. 20, 317–326. http://dx.doi.org/10.1007/s10882-008-9099-3. DOI: https://doi.org/10.1007/s10882-008-9099-3

Lasby, K., Newton, S., and Von Platen, A. 2004. “Neonatal Transitional Care.†Canadian Nurse 100 (8): 18–23. DOI: https://doi.org/10.1097/00003465-200403000-00015

Lawal, H., Enyebe, E., Obiako, O., and Garba, S. 2015. “Socio-economic Challenges of Parents of Children with Neurological Disorder: A Hospital Based Study in North West Nigeria.†International Journal of Nursing and Midwifery, no. 6, 58–68. DOI: https://doi.org/10.5897/IJNM2014.0122

Leedy, P. D., and Ormrod, J. E. 2005. Practical Research Planning and Design, 5th edition. New Jersey: Pearson Merrill Prentice Hall.

Melamed , Y. 2010. “Mentally ill Persons who commit Crimes: Punishment or Treatment?†Journal of American Academy of Psychiatry Law, 100-3.

Mason, P., and Wilkinson, G. 1996. “The Prevalence of Psychiatric Morbidity. OPCS Survey of Psychiatric Morbidity in Great Britain.†The British Journal of Psychiatry 168 (1): 1–3. https://doi.org/10.1192/bjp.168.1.1 DOI: https://doi.org/10.1192/bjp.168.1.1

Matveev, E. V. 2003. “Devices and Systems for Psychophysiological Examination.†Biomedical Engineering 37 (1): 26–30. https://doi.org/10.1023/A:1023781628555 DOI: https://doi.org/10.1023/A:1023781628555

McMillan and Schumacher. 2003. Research in Education: A Conceptual Introduction, 5th edition. New York, Longman.

Mirza, I., Tareen, A., Davidson, L. L., and Rahman, A. 2009. “Community Management of Intellectual Disabilities in Pakistan: A Mixed Methods Study.†Journal of Intellectual Disability Research, no. 53, 559–570. https://doi.org/10.1111/j.1365-2788.2009.01176.x DOI: https://doi.org/10.1111/j.1365-2788.2009.01176.x

Mitra. 2011. Disability and Poverty in Developing Countries: A snapshot from the World Health Survey. SP Discussion Paper, World Bank. DOI: https://doi.org/10.1596/27369

Moh, T. A., and Magiati, I. 2012. Factors associated with parental stress and satisfaction during the process of diagnosis of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders 6 (1): 293–303. doi: http://dx.doi.org/10.1016/j.rasd.2011.05.011 DOI: https://doi.org/10.1016/j.rasd.2011.05.011

Mol, R., and Sujatha, R. 2013. “Lived Experiences of Mothers of Children with Down’s Syndrome in Selected Schools at Mangalore, Nitte University.†Journal of Health Science NUJHS 3 (3): September 2013, ISSN 2249-7110.

Mugenda, O. N., and Mugenda, A. G. 2003. Research Methods: A Quantitative and Qualitative Approach. Nairobi: ACTS Press.

Mugo, K. J., Oanga, J., and Singal, N. 2010. “Testing Youth Transitions in Kenya: Are Young People with Disabilities falling through the Cracks?†RECOUP Working Paper No. 34. www.dfi d.gov.uk/R4D/PDF/Outputs/ ImpOutcomes_RPC/WP34-JKM.pdf (accessed 1 August 2011).

Oh, H., and Lee, E. O. 2009. “Caregiver Burden and Social Support among Mothers raising Children with Developmental Disabilities in South Korea.†International Journal of Disability, Development and Education 56: 149–167. http://dx.doi.org/10.1080/10349120902868624 DOI: https://doi.org/10.1080/10349120902868624

O’Shea, T. M. 2008. “Diagnosis, Treatment, and Prevention of Cerebral Palsy.†Clinical Obstetrics and Gynaecology 51 (4): 816–828. https://doi.org/10.1097/GRF.0b013e3181870ba7 DOI: https://doi.org/10.1097/GRF.0b013e3181870ba7

Olshansky, S. 1962. “Chronic Sorrow: A Response to having a Mentally Defective Child.†Social Casework, no. 43, 191–193. DOI: https://doi.org/10.1177/104438946204300404

Pizur-Barnekow, K., Doering, J., Cashin, S., and Timothy, P. (Rhyner, Paula PhD). “Functional Health Literacy and Mental Health in Urban and Rural Mothers of Children Enrolled in Early Intervention Programs.†Infants & Young Children, 42-51. DOI: https://doi.org/10.1097/IYC.0b013e3181c97633

Polit, D. F., Beck, C. T., and Hungler, B. P. 2001. Essentials of Nursing Research: Methods, Appraisal, and Utilization, 5th edition. Philadelphia: Lippincott Williams and Wilkins, 544.

Rao, S. 2001. “A Little Inconvenience: Perspectives of Bengali families of Children with Disabilities on Labelling and Inclusion.†Disability and Society, no. 16, 531–548. https://doi.org/10.1080/09687590120059522 DOI: https://doi.org/10.1080/09687590120059522

Rodrigues dos Santos, M. T., Biancardi, M., Celiberti, P., and De Oliveira Guaré, R. 2009. “Dental Cares in Cerebral Palsied Individuals and their Caregivers’ Quality of Life.†Child Care Health Development, no. 35, 475–81. https://doi.org/10.1111/j.1365-2214.2009.00976.x DOI: https://doi.org/10.1111/j.1365-2214.2009.00976.x

Rugoho, T., and Maphosa, F. 2015. “Gender Based Violence amongst Women with Disabilities: A Case Study of Mwenezi District, Zimbabwe.†Gender Questions, no. 3, 97–113. DOI: https://doi.org/10.25159/2412-8457/822

Rugoho, T., and B. Siziba. 2014. “Rejected People: Beggars with Disabilities in the City of Harare, Zimbabwe.†Developing Country Studies 4 (26): 51–57.

Ryan, S., and Runswick-Cole, K. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.†Disability and Society 23 (3): 199–210. https://doi.org/10.1080/09687590801953937 DOI: https://doi.org/10.1080/09687590801953937

Sabih, F., and Sajid, W. B. 2008. “There is a Significant Stress among Parents having Children with Autism.†Pakistan Journal of Social Sciences, no. 1, 1–4.

Scorgie, A., and Sobsey. B. 2000. Beyond the Limits. Mothers caring for Children with Disabilities. Children and Family Series, North York, Canada: Rocher Institute.

Shaw, J. P. 2009. “The problems faced by families with disabled children.†Helium. A Study of Problems Faced by Mothers of the Disabled Children in Rural Areas of District Faisalabad http://www.helium.com/items/1342179-theproblems-faced-by-families-with-disabled-children#

Shimabukuro, T. T., Grosse, S. D., and Rice, C. 2008. “Medical Expenditures for Children with an Autism Spectrum Disorder in a Privately Insured Population.†Journal of Autism and Developmental Disorders 38 (3): 546–552. https://doi.org/10.1007/s10803-007-0424-y DOI: https://doi.org/10.1007/s10803-007-0424-y

Smith, K. 2002. “Who’s minding the Kids? Child Care Arrangements: Spring 1997.†In Current Population Reports, 70–86. Washington, DC: U.S. Census, Bureau.

Stewart, D., Shamdasani, P., and Rook, D. 2007. Focus Groups: Theory and Practice, 2nd edition. Thousand Oaks: SAGE Publications. https://doi.org/10.4135/9781412991841 DOI: https://doi.org/10.4135/9781412991841

Swartz, L., and Watermeyer, B. 2008. “Cyborg Anxiety: Oscar Pistorius and the Boundaries of what it means to be Human.†Disability and Society 3 (2): 187–190. http://dx.doi.org/10.1080/09687590701841232 DOI: https://doi.org/10.1080/09687590701841232

Tesemma, T. S. 2011. Educating Children with Disabilities in Africa: Towards a Policy of Inclusion. Addis: The African child Policy forum (AcPf).

Thwala, S. K. 2004. “Understanding inclusion in Swaziland: An Agenda for Change.†Unpublished master’s thesis. University of Exeter, Exeter.

Thwala, S. K., Thwala, L., Kayi Ntinda, L., and Buyisile, Hlanze. 2015. “Lived Experiences of Parents’ of Children with Disabilities in Swaziland.†Journal of Education and Training Studies, no. 3 (4). DOI: https://doi.org/10.11114/jets.v3i4.902

Upadhyaya, G. R., and Havalappanavar, N. B. 2008. “Stress in Parents of the Mentally Challenged.†Journal of the Indian Academy of Applied Psychology, no. 34, 53–55.

Valdivia, J. S. 2007. Classroom Management Strategies for Students with Autism. Online submission. ED495856.

Vijesh, P. V., and Sukumaran, P. S. 2007. “Stress among Mothers of Children with Cerebral Palsy attending Special Schools.†Asia Pacific Disability Rehabilitation Journal 18 (1): 76–92.

Wang, C., Guttmann, A., To, T., and Dick, P. T. 2009. “Neighborhood Income and Health Outcomes in Infants: How do those with Complex Chronic Conditions fare?†Archives of Paediatrics and Adolescent Medicine 163 (7): 608–615. doi:10.1001/archpediatrics.2009.36 DOI: https://doi.org/10.1001/archpediatrics.2009.36

Wikler, L., Haack, J., and Intagliata, J. 1984. “Bearing the Burden alone? Helping Divorced Mothers of Children with Developmental Disabilities.†Family Therapy Collections, no. 11, 44–62. DOI: https://doi.org/10.1037/e401592004-001

World Health Organisation. 2004. The Global Burden of Disease. Geneva: World Health Organisation.

Yilmaz, H., Erkin and Ezke. 2013. “Quality of Life in Mothers of Children with Cerebral Palsy.†Hindawi Publishing Corporation ISRN Rehabilitation Volume 2013, Article ID 914738, 5 pages http://dx.doi.org/10.1155/2013/914738 DOI: https://doi.org/10.1155/2013/914738

Yin, R. K. 2011. Qualitative Research from Start to Finish. New York, NY: The Guilford Press.

Yousafzai, A. K., Farrukh, Z., and Khan, K. 2011. “A Source of Strength and Empowerment? An Exploration of the Influence of Disabled Children on the Lives of their Mothers in Karachi, Pakistan.†Disability Rehabilitation 33 (12): 989–998. https://doi.org/10.3109/09638288.2010.520811 DOI: https://doi.org/10.3109/09638288.2010.520811

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2017-08-24

How to Cite

Rugoho, Tafadzwa, and France Maphosa. 2016. “Ostracised: Experiences of Mothers of Children With Disabilities in Zimbabwe”. Gender Questions 4 (1):18 pages. https://doi.org/10.25159/2412-8457/1053.

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Articles
Received 2016-04-22
Accepted 2017-04-12
Published 2017-08-24