Top

BMC International Health and Human Rights

Published in:

Open Access 01-12-2018 | Research article

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya

Authors: Joseph K. Gona, Charles R. Newton, Sally Hartley, Karen Bunning

Published in: BMC International Health and Human Rights | Issue 1/2018

Abstract

Background

The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect – education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability?

Methods

A qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members’ personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method.

Results

The emergent framework consisted of four main themes, organised as opposing constructs: ‘burden’ and ‘agency’, ‘sub-human’ and ‘human’. ‘Burden’ focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the ‘agency’ of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The ‘sub-human’ to ‘human’ construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings.

Conclusion

This study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions.

Available only for authorised users

Meloni F, Federici S, Dennis JL. Parents’ education shapes but does not originate, the disability representations of their children. PLoS One. 2015;10:e0128876. https://doi.org/10.1371/journal.pone.0128876 CrossRefPubMedPubMedCentral

Federici S, Meloni F, Catarinella A, Mazzeschi C. Models of disability in children’s pretend play: measurement of cognitive representations and affective expression using the affect in play scale. Front Psychol. 2017;8:794. https://doi.org/10.3389/fpsyg.2017.00794.CrossRefPubMedPubMedCentral

Smith LA, Williams JA. Children’s understanding of the causal origins of disability. J Cogn Dev. 2004;5:383–97. journals.sagepub.com/doi/abs/10.1177/1359105305057315 CrossRef

Gona JK, Mung’ala-Odera V, Newton CR, Hartley S. Caring for children with disabilities in Kilifi, Kenya: what is the carer’s experience? Child Care Health Dev. 2010;37:175–83. https://doi:1111/j.1365-22.2010.01124.X.

Ensor T, Cooper S. Overcoming barriers to health service access: influencing the demand side. Health Policy Plan. 2004;19:69–79. https://doi.org/10.1093/heapol/czh009.CrossRefPubMed

Bunning K, Gona JK, Odera-Mung’ala V, Newton CR, Geere J, Hong CS, Hartley S. Survey of rehabilitation support for children 0-15 years in a rural part of Kenya. Disabil Rehabil. 2014;36:1033–41. https://doi.org/10.3109/09638288.2013.829524.CrossRefPubMed

Prestwich A, Kenworthy J, Wilson M, Kwan-tat N. Differential relations between two types of contact and implicit and explicit racial attitudes. Br J Soc Psychol. 2008;47(4):575–88. https://doi.org/10.1348/014466607X267470.CrossRefPubMed

Daruwalla P, Darcy S. Personal and societal attitudes to disability. Ann Tourism Res. 2005;32:549–70. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2214.2010.01124.x/full.

Bikenbach JE, Chatterji S, Badley EM, Ustun TB. Models of disablement, universalism and the international classification of impairments, disabilities and handicaps. Social Science Medicine. 1999;48(9):1173–87. https://www.ncbi.nlm.nih.gov/pubmed/10220018 CrossRef

10.

Oliver M. Understanding disability: from theory to practice. London: MacMillan Press Ltd; 1996. https://www.amazon.com/Understanding-Disability-Practice...Oliver/dp/0230220282 CrossRef

11.

Haihambo C, Lightfoot E. Cultural beliefs regarding people with disabilities in Namibia: implications for the inclusion of people with disabilities. In J Special Educ. 2010;25:76–87. https://conservancy.umn.edu/handle/11299/171770

12.

Shumba A, Abosi OC. The nature, extent and causes of abuse of children with disabilities in schools in Botswana. Int J Disabil Dev Educ. 2011;58:373–88.CrossRef

13.

Anthony J. Conceptualising disability in Ghana: implications for EFA and inclusive education. Int J Incl Educ. 2011;15:1073–86. https://doi.org/10.1080/13603116.2011.645628

14.

Bunning K, Gona JK, Newton CR, Hartley S. The perception of disability by community groups: stories of local understanding, beliefs and challenges in a rural part of Kenya. PLoS One. 2017;12(8):e0182214. https://doi.org/10.1371/journal. pone.0182214CrossRefPubMedPubMedCentral

15.

Gona JK, Newton CR, Hartley S, Bunning K. A home-based intervention using augmentative and alternative communication (AAC) techniques in rural Kenya: what are the carers’ experiences? Child Care Health Dev. 2014;40:29–41. https://doi.org/10.1111/cch.12031.CrossRefPubMed

16.

Gona JK, Newton CR, Rimba K, Mapenzi R, Kihara M, Van de Vijver FJR, et al. Parents’ and professionals’ perceptions on causes and treatment options for autism spectrum disorders (ASD) in a multicultural context on the Kenyan coast. PLoS One. 2015;10:e0132729. https://doi.org/10.1371/journal.pone.0132729.

17.

Stone-MacDonald A. Cultural beliefs about disability in practice at a special school in Tanzania. Int J Disabil, Dev Educ. 2012;59:293–407. https://doi.org/10.1080/1034912X.2012.723947.

18.

Paget A, Mallewa M, Chinguo D, Mahabere-Chrambo C, Gladstone M. “It means you are grounded” – caregivers’ perspectives on the rehabilitation of children with neurodisability in Malawi. Disabil Rehabil. 2016:223–34. https://doi.org/10.3109/09638288.2015.1035458.

19.

Mckenzie JA, McConkey R, Adnams C. Intellectual disability in Africa: implications for research and service development. Disabil Rehabil. 2013;35:1750–5. https://doi.org/10.3109/09638288.2012.751461.CrossRefPubMed

20.

Souza Tedrus GMA, Fonseca LC, De Pietro MF, Magalhaes Mendes PH. Spiritual/religious coping in patients with epilepsy: relationship with sociodemographic and clinical aspects and quality of life. Epilepsy Behav. 2013;28:386–90. https://doi.org/10.1016/j.yebeh.2013.05.011.

21.

Pargament KI, Koenig HG, Perez LM. The many methods of religious coping: development and initial validation of the RCOPE. J Clin Psychol. 2000;56:519–43. https://pdfs.semanticscholar.org/ce8d/5d0ee4e6e8e42e5e80d49a65a237.

22.

Whyte SR, Ingstad B. Help for people with disabilities: do cultural differences matter? World Health Forum. 1998;19:42–6. PMID: 9610240.

23.

Stone-MacDonald A, Butera G. Cultural beliefs and attitudes about disability in sub-Saharan Africa. Rev Disabil Stud. 2012;8:62–77.

24.

Corrigan PW. Mental health stigma as social attribution: implications for research methods and attitude change. Clin Psychol Sci Pract. 2006;7:48–67. https://doi.org/10.1093/clipsy.7.1.48.

25.

Corrigan P, Watson AM. Understanding the impact of stigma on people with mental illness. World Psychiatry. 2002;1:16–20. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1489832/.

26.

Werner S, Corrigan P, Ditchman N, Sokol K. Stigma and intellectual disability: a review of related measures and directions. Res Dev Disabil. 2012;33:748–65. https://www.researchgate.net/.../236956010 CrossRefPubMed

27.

Dipple A, Raymond K, Docherty M. General theory of stigmergy: modelling stigma semantics. Cogn Syst Res. 2014;31–32:61–92. https://doi.org/10.1016/j.cogsys.2014.02.002.CrossRef

28.

Etieyibo E, Omiegbe O. Religion, culture, and discrimination against persons with disabilities in Nigeria. Afr J Disabil. 2016;5(1):a192. https://doi.org/10.4102/ajod.v5i1.192 CrossRef

29.

Devries KM, Kyegombe N, Zuurmond M, Parkes J, Cild JC, et al. Violence against primary school children with disabilities in Uganda: a cross-sectional study. BMC Public Health. 2014;14:1017.CrossRefPubMedPubMedCentral

30.

Allport G. The nature of prejudice. Oxford: Addison-Wesley Publishing; 1954.

31.

MacMillan M, Tarrant M, Abraham C, Morris C. The association between children’s contact with people with disabilities and their attitudes towards disability: a systematic review. Dev Med Child Neurol. 2013;56:529–46.CrossRefPubMed

32.

Schwab S. The impact of contact on students’ attitudes towards peers with disabilities. Res Dev Disabil. 2017;62:160–5. https://doi.org/10.1016/j.ridd.2017.01.015.CrossRefPubMed

33.

Armstrong M, Morris C, Abraham C, Tarrant M. Interventions utilizing contact with people with disabilities to improve children’s attitudes towards disability: a systematic review and meta-analysis. Disabil Health J. 2017;10:11–22.CrossRefPubMed

34.

Armstrong M, Morris C, Abraham C, Ukoumunne OC, Tarrant M. Children’s contact with people with disabilities and their attitudes towards disability: a cross-sectional study. Disabily Rehabil. 2016;38:879–88.CrossRef

35.

Moore D, Nettelbeck T. Effects of a short-term disability awareness training on attitudes of adolescent schoolboys towards persons with a disability. J Intellect Dev Disabil. 2013;38(3):223–31.CrossRefPubMed

36.

Papaioannou C, Evaggelinou C, Barkoukis V, Block M. Disability awareness program in a summer camp. Eur J Adapt Phys Act. 2013;6(2):19–28.

37.

Moore D, Nettelbeck T. Effects of short-term disability awareness training on attitudes of adolescent schoolboys toward persons with a disability. J Intellect Dev Disabil. 2013;38(3):223–31. https://doi.org/10.3109/13668250.2013.790532.CrossRefPubMed

38.

Krahe B, Altwasser C. Changing negative attitudes towards persons with physical disabilities: an experimental intervention. J Commun Appl Soc Psychol. 2006;16(1):59–69. https://doi.org/10.1002/casp.849.CrossRef

39.

Lindsay S, Edwards A. A systematic review of disability awareness interventions for children and youth. Disabil Rehabil. 2013;35(8):623–46. https://doi.org/10.3109/09638288.2012.702850.CrossRefPubMed

40.

Ibinda F, et al. Evaluation of Kilifi epilepsy education programme: a randomized controlled trial. Epilepsia. 2014;55(2):344–52. https://doi.org/10.1111/epi.12498.CrossRefPubMedPubMedCentral

41.

World Health Organisation. CBR Guidelines. Geneva: World Health Organisation; 2003. Available from: www.who.int/disabilities/cbr/guidelines/en/.

42.

Finkenflugel H, Wolffers I, Huijsman R. The evidence base for community-based rehabilitation: a literature review. International Journal Rehabilitation Research. 2005;28(3):187–201. https://doi.org/10.1097/00004356-200509000-00001 CrossRef

43.

Iemmi, V, Gibson L, Blanchet K,Suresh K,Rath S, Hartley S, Gudlavalleti V. Community-based rehabilitation for people with disabilities in low- and middle-income countries. 2015; Cochrane-Campbell Review. Available at: https://campbellcollaboration.org/library/community-based-rehabilitation-people-with-disabilities.html (retrieved 7 October 2017). https://www.tandfonline.com/doi/abs/10.1080/19439342.2016.1157623

44.

Weber J, Grech S, Polack S. Towards a ‘mind map’ for evaluative thinking in community based rehabilitation: reflections and learning. Disabil Glob South. 2016;3(2):951–79. www.dgsjournal.org. ISSN 2050-7364

45.

Creswell JW, Hanson WE, Plano Clark VL, Morales A. Qualitative research designs: selection and implementation. Couns Psychol. 2007;35:236–64. https://eric.ed.gov/?id=EJ754338 CrossRef

46.

Kenya National Bureau for Statistics (KNBS). Kenya Integrated Household Budget Survey (KIHBS) 2005 and 2006. Available from: http://www.knbs.or.ke/pdf/Basic%20Report%20(Revised%20Edition).pdf. Cited 7 March 2017.

47.

Oliver M, Geniets A, Winters N, Rega I, Mbae SM. What do community health workers have to say about their work, and how can this inform improved programme design? A case study with CHWs within Kenya. Glob Health Action. 2015; 8. Available from: https://doi.org/10.3402/gha.v8.27168. Cited 7 March 2017.

48.

Women groups in Kenya. SoftKenya: All about Kenya. Available from: www.softkenya.com. Cited 7 March 2017.

49.

Ritchie J, Spencer J. Qualitative data analysis for applied policy research. In: Analyzing qualitative data, ed. by A Bryman & RG Burgess. 2002; London: Taylor & Francis e-Library, pp. 173–194. https://pdfs.semanticscholar.org/7b71/8dc8ace7b9618361c14d2186fef9994b474a.pdf.

50.

Honneth, A.. Reification: a new look at an old idea. Oxford University Press; 2008 https://global.oup.com/academic/product/reification-9780195320466.

Title: Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya
Authors: Joseph K. Gona
Charles R. Newton
Sally Hartley
Karen Bunning
Publication date: 01-12-2018
Publisher: BioMed Central
Published in: BMC International Health and Human Rights / Issue 1/2018
Electronic ISSN: 1472-698X
DOI: https://doi.org/10.1186/s12914-018-0158-2

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya

Abstract

Background

Methods

Results

Conclusion

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusion

Please log in to get access to this content

Other articles of this Issue 1/2018

Socioeconomic and environmental determinants of under-five mortality in Gamo Gofa Zone, Southern Ethiopia: a matched case control study

Attitudes towards help-seeking for sexual and gender-based violence in humanitarian settings: the case of Rwamwanja refugee settlement scheme in Uganda

Realising the right to sexual and reproductive health: access to essential medicines for medical abortion as a core obligation

Adolescents’ reproductive health knowledge, choices and factors affecting reproductive health choices: a qualitative study in the West Gonja District in Northern region, Ghana

Words matter: a call for humanizing and respectful language to describe people who experience incarceration

HIV prevention: mapping Mozambican people’s views on the acceptability of the widow’s sexual cleansing ritual called pita-kufa