The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy

References

• APHRC. (2014). Population and health dynamics in Nairobi's informal settlements: Report of the Nairobi cross-Sectional Slums survey (NCSS) 2012. https://assets.publishing.service.gov.uk/media/57a089f240f0b64974000338/NCSS2-FINAL-Report.pdf.
   Google Scholar
• Bower, J. H., & Zenebe, G. (2005). Neurologic services in the nations of Africa. Neurology, 64(3), 412–415. https://doi.org/10.1212/01.wnl.0000150894.53961.e2
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Charmaz, K. (1983). Loss of self: A fundamental form of suffering in the chronically ill. Sociology of Health & Illness, 5(2), 168–195. https://doi.org/10.1111/1467-9566.ep10491512
   PubMedGoogle Scholar
• Cohen, S. (2004). Social relationships and health. American Psychologist, 59(8), 676–684. https://doi.org/10.1037/0003-066x.59.8.676
   PubMed Web of Science ®Google Scholar
• Connolly, B. S., & Lang, A. E. (2014). Pharmacological treatment of Parkinson disease: A review. JAMA, 311(16), 1670–1683. https://doi.org/10.1001/jama.2014.3654
   PubMed Web of Science ®Google Scholar
• DeMaagd, G., & Philip, A. (2015). Parkinson's disease and Its management: Part 1: disease entity, risk factors, pathophysiology, clinical presentation, and diagnosis. P & T, 40(8), 504–532. https://www.ncbi.nlm.nih.gov/pubmed/26236139.
   PubMedGoogle Scholar
• Dorsey, E., & Bloem, B. (2018). The Parkinson pandemic-A call to action. JAMA Neurology, 75(1), 9–10. https://doi.org/10.1001/jamaneurol.2017.3299
   PubMed Web of Science ®Google Scholar
• Dorsey, E. R., Elbaz, A., Nichols, E., Abd-Allah, F., Abdelalim, A., Adsuar, J. C., Ansha, M. G., Brayne, C., Choi, J.-Y. J., Collado-Mateo, D., Dahodwala, N., Do, H. P., Edessa, D., Endres, M., Fereshtehnejad, S.-M., Foreman, K. J., Gankpe, F. G., Gupta, R., Hankey, G. J., … Murray, C. J. L. (2018). Global, regional, and national burden of Parkinson's disease, 1990-2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, 17(11), 939–953. https://doi.org/10.1016/S1474-4422(18)30295-3
   PubMed Web of Science ®Google Scholar
• Dotchin, C. L., Msuya, O., & Walker, R. W. (2007). The challenge of Parkinson's disease management in Africa. Age and Ageing, 36(2), 122–127. https://doi.org/10.1093/ageing/afl172
   PubMed Web of Science ®Google Scholar
• Feigin, V. L., Nichols, E., Alam, T., Bannick, M. S., Beghi, E., Blake, N., Culpepper, W. J., Dorsey, E. R., Elbaz, A., Ellenbogen, R. G., Fisher, J. L., Fitzmaurice, C., Giussani, G., Glennie, L., James, S. L., Johnson, C. O., Kassebaum, N. J., Logroscino, G., Marin, B., … Vos, T. (2019). Global, regional, and national burden of neurological disorders, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, 18(5), 459–480. https://doi.org/10.1016/S1474-4422(18)30499-X
   PubMed Web of Science ®Google Scholar
• Festinger, L. (1954). A theory of social comparison processes. Human Relations, 7(2), 117–140. https://doi.org/10.1177/001872675400700202
   Web of Science ®Google Scholar
• Fothergill-Misbah, N., Maroo, H., Hooker, J., Kwasa, J., & Walker, R. (2020). Parkinson's disease medication in Kenya – Situation analysis. Pharmaceutical Journal of Kenya, 24(2), 38–41. https://psk.or.ke/journals/article-74.
   Google Scholar
• Fothergill-Misbah, N., Walker, R., Kwasa, J., Hooker, J., & Hampshire, K. (2021). “Old people problems”, uncertainty and legitimacy: Challenges with diagnosing Parkinson's disease in Kenya. Social Science & Medicine, 282, 114148. https://doi.org/10.1016/j.socscimed.2021.114148
   PubMed Web of Science ®Google Scholar
• Geertz, C. (1973). The interpretation of cultures. Basic Books, Inc., Publishers. https://monoskop.org/images/5/54/Geertz_Clifford_The_Interpretation_of_Cultures_Selected_Essays.pdf.
   Google Scholar
• Giansanti, D., & Veltro, G. (2021). The digital divide in the era of COVID-19: An investigation into an important obstacle to the access to the mHealth by the citizen. Healthcare (Basel), 9(4), 371, https://doi.org/10.3390/healthcare9040371
   PubMedGoogle Scholar
• Gillett, H. J., & Parr, J. (2010). Disclosure among HIV-positive women: The role of HIV/AIDS support groups in rural Kenya. African Journal of AIDS Research, 9(4), 337–344. https://doi.org/10.2989/16085906.2010.545633
   PubMed Web of Science ®Google Scholar
• Hermanns, M. (2013). The invisible and visible stigmatization of Parkinson's disease. Journal of the American Association of Nurse Practitioners, 25(10), 563–566. https://doi.org/10.1111/1745-7599.12008
   PubMed Web of Science ®Google Scholar
• Hudson, P. L., Toye, C., & Kristjanson, L. J. (2006). Would people with Parkinson's disease benefit from palliative care? Palliative Medicine, 20(2), 87–94. https://doi.org/10.1191/0269216306pm1108oa
   PubMed Web of Science ®Google Scholar
• Kaddumukasa, M., Kakooza, A., Kaddumukasa, M. N., Ddumba, E., Mugenyi, L., Sajatovic, M., & Katabira, E. (2015). Knowledge and attitudes of Parkinson's disease in rural and urban mukono district, Uganda: A cross-sectional, community-based study. Parkinson's Disease, 2015(196150), 1–7. https://doi.org/10.1155/2015/196150
   Google Scholar
• KNBS. (2019). 2019 Kenya population and housing census volume I: Population by county and sub-county. https://tech-ish.com/wp-content/uploads/2019/11/VOLUME-1-KPHC-2019.pdf.
   Google Scholar
• Mack, N., Woodsong, C., MacQueen, K., Guest, G., & Namey, E. (2005). Qualitative research methods: A data collector’s field guide. Family Health International. http://www.fhi.org/en/RH/Pubs/booksReports/QRM_datacoll.htm.
   Google Scholar
• Marsland, R. (2012). (Bio)sociality and HIV in Tanzania: Finding a living to support a life. Medical Anthropology Quarterly, 26(4), 470–485. https://doi.org/10.1111/maq.12002
   PubMed Web of Science ®Google Scholar
• Mokaya, J., Dotchin, C. L., Gray, W. K., Hooker, J., & Walker, R. W. (2016). The accessibility of Parkinson's disease medication in Kenya: Results of a national survey. Movement Disorders Clinical Practice, 3, 376–381. https://doi.org/10.1002/mdc3.12294
   PubMed Web of Science ®Google Scholar
• Mokaya, J., Gray, W. K., & Carr, J. (2017). Beliefs, knowledge and attitudes towards Parkinson's disease among a Xhosa speaking black population in South Africa: A cross-sectional study. Parkinsonism & Related Disorders, 41, 51–57. https://doi.org/10.1016/j.parkreldis.2017.05.009
   PubMed Web of Science ®Google Scholar
• Mshana, G., Dotchin, C. L., & Walker, R. W. (2011). ‘We call it the shaking illness': Perceptions and experiences of Parkinson's disease in rural northern Tanzania. BMC Public Health, 11(219), 1–8. https://doi.org/10.1186/1471-2458-11-219
   PubMedGoogle Scholar
• Nguyen, V. K., Appadurai, A., Comaroff, J. L., & Farquhar, J. (2010). The republic of therapy: Triage and sovereignty in West Africa’s time of AIDS. Duke University Press. https://books.google.co.uk/books?id=b9WMOXtoVZkC.
   Google Scholar
• NICE. (2017). Parkinson's disease in adults: NICE guideline. https://www.nice.org.uk/guidance/ng71.
   Google Scholar
• Nijhof, G. (1995). Parkinson's disease as a problem of shame in public appearance. Sociology of Health & Illness, 17(2), 193–205. https://doi.org/10.1111/1467-9566.ep10933386
   Web of Science ®Google Scholar
• Okubadejo, N. U., Ojo, O. O., Wahab, K. W., Abubakar, S. A., Obiabo, O. Y., Salawu, F. K., Nwazor, E. O., Agabi, O. P., & Oshinaike, O. O. (2019). A nationwide survey of Parkinson's disease medicines availability and affordability in Nigeria. Movement Disorders Clinical Practice, 6(1), 27–33. https://doi.org/10.1002/mdc3.12682
   PubMed Web of Science ®Google Scholar
• Prince, R. (2012). The politics and anti-politics of HIV interventions in Kenya. In P. W. Geissler, R. Rottenburg, & J. Zenker (Eds.), Rethinking biomedicine and governance in Africa: Contributions from anthropology (pp. 97–116). Transcript Verlag.
   Google Scholar
• Rabinow, P. (1996). Artificiality and enlightenment: From sociobiology to biosociality. In P. Rabinow (Ed.), Essays on the anthropology of reason (pp. 91–111). Princeton University Press.
   Google Scholar
• Roger, K. S., & Medved, M. I. (2010). Living with Parkinson's disease-managing identity together. International Journal of Qualitative Studies on Health and Well-Being, 5(2), 1–8. https://doi.org/10.3402/qhw.v5i2.5129
   Web of Science ®Google Scholar
• Scambler, G. (2004). Re-framing stigma: Felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory & Health, 2(1), 29–46. https://doi.org/10.1057/palgrave.sth.8700012
   Google Scholar
• Soleimani, M. A., Negarandeh, R., Bastani, F., & Greysen, R. (2014). Disrupted social connectedness in people with Parkinson's disease. British Journal of Community Nursing, 19(3), 136–141. https://doi.org/10.12968/bjcn.2014.19.3.136
   PubMedGoogle Scholar
• Solimeo, S. (2009). With shaking hands: Aging with Parkinson's disease in America's Heartland. Rutgers University Press.
   Google Scholar
• Soundy, A., Stubbs, B., & Roskell, C. (2014). The experience of Parkinson's disease: A systematic review and meta-ethnography. The Scientific World Journal, 2014, 1–19. https://doi.org/10.1155/2014/613592
   Google Scholar
• Subramanian, I. (2020). Virtual Parkinson's disease support groups in the COVID-19 era: Social connection in the time of social distancing. Movement Disorders Clinical Practice, 7(6), 739–740. https://doi.org/10.1002/mdc3.12994
   PubMed Web of Science ®Google Scholar
• Subramanian, I., Farahnik, J., & Mischley, L. K. (2020). Synergy of pandemics-social isolation is associated with worsened Parkinson severity and quality of life. NPJ Parkinson's Disease, 6(1), 28. https://doi.org/10.1038/s41531-020-00128-9
   PubMed Web of Science ®Google Scholar
• Uchino, B. N. (2006). Social support and health: A review of physiological processes potentially underlying links to disease outcomes. Journal of Behavioral Medicine, 29(4), 377–387. https://doi.org/10.1007/s10865-006-9056-5
   PubMed Web of Science ®Google Scholar
• Uchino, B. N., Cacioppo, J. T., & Kiecolt-Glaser, J. K. (1996). The relationship between social support and physiological processes: A review with emphasis on underlying mechanisms and implications for health. Psychological Bulletin, 119(3), 488–531. https://doi.org/10.1037/0033-2909.119.3.488
   PubMed Web of Science ®Google Scholar
• WHO. (2004). Atlas: country resources for neurological disorders 2004: Results of a collaborative study of the World Health Organization and the World Federation of Neurology. https://apps.who.int/iris/bitstream/handle/10665/43075/9241562838.pdf?sequence=1&isAllowed=y.
   Google Scholar
• Whyte, S. R. (2014). Second chances: Surviving AIDS in Uganda. Duke University Press. https://books.google.co.uk/books?id=o_-3oAEACAAJ.
   Google Scholar
• Williamson, C., Simpson, J., & Murray, C. D. (2008). Caregivers’ experiences of caring for a husband with Parkinson's disease and psychotic symptoms. Social Science & Medicine, 67(4), 583–589. https://doi.org/10.1016/j.socscimed.2008.04.014
   PubMed Web of Science ®Google Scholar
• World Bank. (2016). Kenya urbanization review. https://documents1.worldbank.org/curated/en/639231468043512906/pdf/AUS8099-WP-P148360-PUBLIC-KE-Urbanization-ACS.pdf.
   Google Scholar
• World Bank. (2019). Kenya economic update: Securing future growth – Policies to support Kenya's digital transformation. http://documents.worldbank.org/curated/en/968481572468094731/Kenya-Economic-Update-Securing-Future-Growth-Policies-to-Support-Kenya-s-Digital-Transformation.
   Google Scholar