4,717
Views
20
CrossRef citations to date
0
Altmetric
Articles

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

ORCID Icon, , & ORCID Icon
Pages 95-120 | Received 09 Mar 2017, Accepted 09 Aug 2018, Published online: 23 Nov 2018

References

  • ACPF. 2011. Children with Disabilities in South Africa: The Hidden Reality. Addis Abeba: The African Child Policy Forum.
  • Alkire, Sabina. 2011. Multidimensional Poverty and its Discontents. Oxford: University of Oxford.
  • Azeem, Muhammad Waqar, Imtiaz Ahmad Dogar, Snehal Shah, Mohsin Ali Cheema, Alia Asmat, Madeeha Akbar, Sumira Kousar, and Imran Ijaz Haider. 2013. “Anxiety and Depression among Parents of Children with Intellectual Disability in Pakistan.” J Can Acad Child Adolesc Psychiatry 22 (4): 290–295.
  • Bannink, Femke, Geert Van Hove, and Richard Idro. 2016. “Parental Stress and Support of Parents of Children with Spina Bifida in Uganda.” African Journal of Disability 5 (1): 1–10.
  • Barratt, Joanne and Claire Penn. 2009. “Listening to the Voices of Disability: Experiences of Caring for Children with Cerebral Palsy in a Rural South African Setting.” In Disability & International Development: Towards Inclusive Global Health., edited by M. MacLachlan and L. Swartz, 191–212. New York: Springer.
  • Beresford, Peter. 2016. “Presenting Welfare Reform: Poverty Porn, Telling Sad Stories Or Achieving Change?” Disability & Society 31 (3): 421–425.
  • Brohm, R. and W. Jansen. 2010. Kwalitatief Onderzoeken. Praktische Kennis Voor De Onderzoekende Professional. Delft: Uitgeverij Eburon.
  • Brunn, Stanley D. and Matthew W. Wilson. 2012. “Cape Town's Million Plus Black Township of Khayelitsha: Terrae Incognitae and the Geographies and Cartographies of Silence.” Habitat International 39: 284–294.
  • Chambers, Robert. 2010. “Paradigms, Poverty and Adaptive Pluralism.” IDS Working Papers 2010 (344): 1–57.
  • Chang, Mei-Ying and Roy McConkey. 2008. “The Perceptions and Experiences of Taiwanese Parents Who have Children with an Intellectual Disability.” International Journal of Disability, Development and Education 55 (1): 27–41.
  • Chiang, Linda H. and Azar Hadadian. 2007. “Chinese and Chinese-American Families of Children with Disabilities.” International Journal of Special Education 22 (2): 19–23.
  • Cluver, Lucie and Mark Orkin. 2009. “Cumulative Risk and AIDS-Orphanhood: Interactions of Stigma, Bullying and Poverty on Child Mental Health in South Africa.” Soc Sci Med 69 (8): 1186–1193.
  • DSD and CDA. 2013. National Drug Master Plan 2013 – 2017. Pretoria: Department of Social Development, Republic of South Africa/Central Drug Authority.
  • DSD, DWCPD, and UNICEF. 2012. Children with Disabilities in South Africa: A Situation Analysis: 2001-2011. Pretoria: Department of Social Development/Department of Women, Children and People with Disabilities, Republic of South Africa/UNICEF.
  • Geertz, C. 1973. The Interpretation of Cultures: Selected Essays. . New York: Basic Books.
  • Goebel, Allison, Belinda Dodson, and Trevor Hill. 2010. “Urban Advantage Or Urban Penalty? A Case Study of Female-Headed Households in a South African City.” Health & Place 16 (3): 573–580.
  • Gona, J. K., V. Mung'ala‐Odera, C. R. Newton, and S. Hartley. 2011. “Caring for Children with Disabilities in Kilifi, Kenya: What is the Carer's Experience?” Child: Care, Health and Development 37 (2): 175–183.
  • Gona, JK, CR Newton, KK Rimba, R. Mapenzi, M. Kihara, FV Vijver, and A. Abubakar. 2016. “Challenges and Coping Strategies of Parents of Children with Autism on the Kenyan Coast.” Rural and Remote Health 16: 3517.
  • Gordon, Steven, B. Roberts, and J. Struwig. 2013. “Shouldering the Burden: Gender Attitudes Towards Balancing Work and Family.” South African Social Attitudes Survey, HSRC Review: November 2016. http://www.hsrc.ac.za/en/review/hsrc-review-september-2013/shouldering-the-burden-gender-attitudes-towards-balancing-work-and-family.
  • Grech, Shaun. 2009. “Disability, Poverty and Development: Critical Reflections on the Majority World Debate.” Disability & Society 24 (6): 771–784.
  • Green, Sara Eleanor. 2007. “We're tired, not sad: benefits and burdens of mothering a child with a disability ”: Soc Sci Med 64 (1): 150–163.
  • Groce, Nora, Maria Kett, Raymond Lang, and Jean-Francois Trani. 2011. “Disability and Poverty: The Need for a More Nuanced Understanding of Implications for Development Policy and Practice.” Third World Quarterly 32 (8): 1493–1513.
  • Hartley, S. O. V. P., P. Ojwang, A. Baguwemu, M. Ddamulira, and A. Chavuta. 2005. “How do Carers of Disabled Children Cope? The Ugandan Perspective.” Child: Care, Health and Development 31 (2): 167–180.
  • Heiman, Tali. 2002. “Parents of Children with Disabilities: Resilience, Coping, and Future Expectations.” Journal of Developmental and Physical Disabilities 14 (2): 159–171.
  • Huang, Yu‐Ping, Shu‐Ling Chen, and Sen‐Wei Tsai. 2012. Father's experiences of involvement in the daily care of their child with developmental disability in a Chinese context Journal of Clinical Nursing 21 (21-22): 3287–3296.
  • Hunter, N. 2010. Measuring and Valuing Unpaid Care Work: Assessing the Gendered Implications of South Africa's Home-Based Care Policy University of KwaZulu-Natal, Durban.
  • Jones, SL, M. Weinberg, RI Ehrlich, and K. Roberts. 2000. “Knowledge, Attitudes, and Practices of Parents of Asthmatic Children in Cape Town.” J Asthma 37 (6): 519–528.
  • Kayfitz, A. D., M. N. Gragg, and R. Orr. 2010. “Positive Experiences of Mothers and Fathers of Children with Autism.” Journal of Applied Research in Intellectual Disabilities 23 (4): 337–343.
  • Khanlou, Nazilla and Elizabeth Peter. 2005. “Participatory Action Research: Considerations for Ethical Review.” Social Science & Medicine 60 (10): 2333–2340.
  • Kimura, M. and Y. Yamazaki. 2013. “The Lived Experience of Mothers of Multiple Children with Intellectual Disabilities.” Qualitative Health Research 23 (10): 1307–1319.
  • Kishore, M. T. 2011. “Disability Impact and Coping in Mothers of Children with Intellectual Disabilities and Multiple Disabilities.” Journal of Intellectual Disabilities: JOID 15 (4): 241–251.
  • Lansdown, G. 2002. Disabled Children in South Africa: Progress in Implementing the Convention on the Rights of the Child. London, United Kingdom: DAA.
  • Mathye, Desmond and Carina A. Eksteen. 2016. “Causes of Childhood Disabilities in a Rural South African Community: Caregivers' Perspective.” African Journal for Physical Activity and Health Sciences (AJPHES) 22 (2.2): 590–604.
  • Matt, Susan B. 2014. “Perceptions of Disability among Parents of Children with Disabilities in Nicaragua: Implications for Future Opportunities and Health Care Access.” Disability Studies Quarterly 34 (4): January 2016. doi:http://dx.doi.org/10.18061/dsq.v34i4.3863.
  • McConkey, Roy, Maria Truesdale-Kennedy, Mei-Ying Chang, Samiha Jarrah, and Raghda Shukri. 2008. “The Impact on Mothers of Bringing Up a Child with Intellectual Disabilities: A Cross-Cultural Study.” International Journal of Nursing Studies 45 (1): 65–74.
  • McConnell, David, Amber Savage, Dick Sobsey, and Bruce Uditsky. 2015. “Benefit-Finding or Finding Benefits? The Positive Impact of having a Disabled Child.” Disability & Society 30 (1): 29–45.
  • Minkler, Meredith, Pamela Fadem, Martha Perry, Klaus Blum, Leroy Moore, and Judith Rogers. 2002. “Ethical Dilemmas in Participatory Action Research: A Case Study from the Disability Community.” Health Educ Behav 29 (1): 14–29.
  • Mitra, Sophie, Aleksandra Posarac, and Brandon Vick. 2013. “Disability and Poverty in Developing Countries: A Multidimensional Study.” World Development 41: 1–18.
  • Morse, J. M. 1994. “Emerging from the Data: The Cognitive Processes of Analysis in Qualitative Inquiry. .” Critical Issues in Qualitative Research Methods 346: 350–351.
  • Neely-Barnes, Susan L. and David A. Dia. 2008. “Families of Children with Disabilities: A Review of Literature and Recommendations for Interventions.” Journal of Early and Intensive Behavior Intervention 5 (3): 93–107.
  • Nleya, Ndodana and Lisa Thompson. 2009. “Survey Methodology in Violence-Prone Khayelitsha, Cape Town, South Africa.” IDS Bulletin 40 (3): 50–57.
  • Norizan, A. and K. Shamsuddin. 2010. “Predictors of Parenting Stress among Malaysian Mothers of Children with Down Syndrome.” Journal of Intellectual Disability Research 54 (11): 992–1003.
  • Oelofsen, Natius and Phil Richardson. 2006. “Sense of Coherence and Parenting Stress in Mothers and Fathers of Preschool Children with Developmental Disability.” J Intellect Dev Disabil 31 (1): 1–12.
  • Palmer, Michael. 2011. “Disability and Poverty: A Conceptual Review.” Journal of Disability Policy Studies 21 (4): 210–218.
  • Park, H. J. and G. H. Chung. 2015. “A Multifaceted Model of Changes and Adaptation among Korean Mothers of Children with Disabilities.” Journal of Child and Family Studies 24 (4): 915–929.
  • Philpott, S. 2006. “Vulnerability of Children with Disability: The Impact of Current Policy and Legislation.” In South African Health Review 2006, edited by P. Ijumba and A. Padarath, 271–282. Durban: Health Systems Trust.
  • Philpott, S. and P. McLaren. 2011. Hearing the Voices of Children and Caregivers: Children with Disabilities in South Africa; A Situation Analysis, 2001-2011. Pretoria: Department of Social Development, Republic of South Africa/UNICEF.
  • Plant, Karen M. and Matthew R. Sanders. 2007. “Predictors of Care‐giver Stress in Families of Preschool‐aged Children with Developmental Disabilities.” Journal of Intellectual Disability Research 51 (2): 109–124.
  • Raina, Parminder, Maureen O'Donnell, Peter Rosenbaum, Jamie Brehaut, Stephen D. Walter, Dianne Russell, Marilyn Swinton, Bin Zhu, and Ellen Wood. 2005. “The Health and Well-being of Caregivers of Children with Cerebral Palsy.” Pediatrics 115 (6): 626–636.
  • Resch, J. A., Gerardo Mireles, Michael R. Benz, Cheryl Grenwelge, Rick Peterson, and Dalun Zhang. 2010. “Giving Parents a Voice: A Qualitative Study of the Challenges Experienced by Parents of Children with Disabilities.” Rehabilitation Psychology 55 (2): 139–150.
  • Ryan, Sara and Katherine Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability & Society 23 (3): 199–210.
  • Saloojee, G., M. Phohole, H. Saloojee, and C. IJsselmuiden. 2007. “Unmet Health, Welfare and Educational Needs of Disabled Children in an Impoverished South African Peri-Urban Township.” Child: Care, Health and Development 33 (3): 230–235.
  • Sandy, PT, JC Kgole, and TR Mavundla. 2013. “Support Needs of Caregivers: Case Studies in South Africa.” International Nursing Review 60 (3): 344–350.
  • SASSA. “South African Social Security Agency: Care Dependency Grant.”, accessed December 10, 2016, http://www.sassa.gov.za/index.php/social-grants/care-dependency-grant.
  • Seekings, J. 2013. Economy, Society and Municipal Services in Khayelitsha. Cape Town: Centre for Social Science Research, University of Cape Town.
  • Seekings, J. and N. Nattrass. 2014. Policy, Politics and Poverty in South Africa. Basingstoke: Palgrave Macmillan Ltd.
  • Sen, Amartya. 1999. Development as Freedom. Oxford: Oxford University Press.
  • Stats SA. 2015. Methodological Report on Rebasing of National Poverty Lines and Development of Pilot Provincial Poverty Lines. Pretoria: Statistics South Africa.
  • Stringer, Ernest T. 2007. Action Research. 3rd ed. Thousand Oaks, CA: Sage Publications.
  • Taanila, Anja, Leena Syrjälä, Jorma Kokkonen, and M‐R Järvelin. 2002. “Coping of Parents with Physically and/Or Intellectually Disabled Children.” Child: Care, Health and Development 28 (1): 73–86.
  • Terreblanche, Sampie. 2002. A History of Inequality in South Africa, 1652-2002. Scottsville: University of Kwazulu Natal Press.
  • UNICEF. 2013. The State of the World's Children 2013. Children with Disabilities. New York: United Nations Children's Fund.
  • van der Mark, E. J. and H. Verrest. 2014. “Fighting the Odds: Strategies of Female Caregivers of Disabled Children in Zimbabwe.” Disability & Society 29 (9): 1412–1427.
  • van der Mark, E. J., I. Conradie, C. W. M. Dedding, and J. E. W. Broerse. 2017. “How Poverty Shapes Caring for a Disabled Child: A Narrative Literature Review.” Journal of International Development 29(8): 1187–1206. doi: 10.1002/jid.3308.
  • Wang, Peishi, Craig A. Michaels, and Matthew S. Day. 2011. “Stresses and Coping Strategies of Chinese Families with Children with Autism and Other Developmental Disabilities.” Journal of Autism and Developmental Disorders 41 (6): 783–795.
  • Webster, Colin and Sarah Kingston. 2014. Anti-Poverty Strategies for the UK: Poverty and Crime Review. Centre for Applied Social Research (CeASR), Leeds Metropolitan University, Leeds: Joseph Rowntree Foundation.
  • Wijesinghe, Champa J., Natasha Cunningham, Pushpa Fonseka, Chandanie G. Hewage, and Truls Østbye. 2015. “Factors Associated with Caregiver Burden among Caregivers of Children with Cerebral Palsy in Sri Lanka.” Asia-Pacific Journal of Public Health 27 (1): 85–95.
  • Yagmurlu, Bilge, H. Melis Yavuz, and Hilal Sen. 2015. “Well-being of Mothers of Children with Orthopedic Disabilities in a Disadvantaged Context: Findings from Turkey.” Journal of Child and Family Studies 24 (4): 948–956.
  • Ylvén, Regina, E. Björck-Åkesson, and Mats Granlund. 2006. “Literature Review of Positive Functioning in Families with Children with a Disability.” Journal of Policy and Practice in Intellectual Disabilities 3 (4): 253–270.