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PhotoVoice CANCER PATIENT STORIES

A South African Cancer Advocacy Initiative

RESEARCHERS LB EDWARDS & LE GREEFF (Ethics review: MRC SA EC006-3/2014)

Frequent late stage presentation and high mortality make cancer a serious public health issue throughout Africa and South Africa is no exception [1,2,3]. Due to the lack of research on the needs and challenges of cancer patients in SA, it is difficult to appreciate the scale, scope and consequences for our population [4]. The shortage of evidence-based research makes it very difficult to persuade the government and other stakeholders to respond to the crisis of cancer control in the country.

 

This research was undertaken as a volunteer-driven project directed at gaining an understanding of the interface of cancer and people’s ordinary life. The purpose of this research is to heighten the profile of cancer on the South African health care landscape, and to promote the importance of good quality cancer control and care standards. While financial grants were received in support of some phases of the project [i.e. 476 Charitable Trust & CANSA] no researcher or volunteer was remunerated for their professional or other services. Participants provided written consent for the publication of their photo-stories and are free to withdraw this consent at any time.

 

As a well-tested international advocacy instrument, PhotoVoice methodology [5,6] was used as a tool for the collection of personal accounts of cancer-related challenges. Other than using the PhotoVoice interviews as support material for a variety of advocacy initiatives (as illustrated in this toolkit), the narratives of the PhotoVoice stories have been subjected to thematic content analysis [7], and the findings are currently under review for publication and have already been made available to a wide variety of stakeholders and decision-makers.

 

316 participants were interviewed across South Africa over a 4-year period offering a unique opportunity for ordinary people to have their say and for their voices to be heard. These stories are not meant to be a complete picture of a person’s cancer journey, but represents personally chosen comments. The photo-stories displayed in this toolkit are a selection of voices that offer grassroots evidence for the identified priority issues.

References

  1. Stefan, D. (2015). Cancer Care in Africa: An Overview of Resources. Journal of Global Oncology, 1(1), 30-36. Available from: http://ascopubs.org/doi/full/10.1200/jgo.2015.000406
  2. Price AJ, Ndom P, Atenguena E, Nouemssi JP, Ryder RW. Cancer Care Challenges in Developing Countries. Cancer. 2012 15:3627–3635. Available from: http://onlinelibrary.wiley.com/doi/10.1002/cncr.26681/full doi: 10.1002/cncr.26681
  3. Strother RM, Asirwa FC, Busakhala NB, Njiru E, Orang’o E, Njuguna F, et al. AMPATH-Oncology: A model for comprehensive cancer care in sub-Saharan Africa. J Cancer Policy. 2013 1(3–4):e42– e48. Available from: http://www.sciencedirect.com/science/article/pii/S2213538313000052 doi.org/10.1016/j.jcpo.2013.06.002
  4. Parkin DM, Ferlay J, Hamdi-Chérif M, Sitas F, Thomas J, Wabinga H, et al. Cancer in Africa: Childhood Cancers. IARC France. Lyon Press. 2013. 381–396. International Agency for Research on Cancer, WHO Scientific Publication No. 153. (E-Reader Version) Available from: http://www.iarc.fr/en/publications/pdfs-online/epi/sp153/SP153-10.pdf
  5. Wang C, Burris M. Empowerment through photo novella: portraits of participation. Health Educ Quart. 1994 21:171-186. Available from: http://journals.sagepub.com/doi/abs/10.1177/109019819402100204
  6. Han CS, Oliffe JL. Photovoice in mental illness research: A review and recommendations. Health (London, England:1997). 2016 20(2):110–126. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4768711/ doi:10.1177/1363459314567790.
  7. Elo S, & Kyngäs H. The qualitative content analysis process. J Adv Nurs. 2008 62(1):107–115. Available from https://www.ncbi.nlm.nih.gov/pubmed/18352969

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