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 SA 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 SA 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.

Index to featured Photovoice stories

ADVOCACY TOOLKIT PRIORITY AREAPHOTOVOICE STORIES FEATURED
1 - Access to cancer treatmentPv207: My family carried me through and gave me reason not to give up.
Issues: Emotional trauma; Lack of patient-centred care; Service delays; Unhygienic hospital conditions; Financial challenges

Pv63: He never walked alone, I was always at his side.
Issues: Delay in diagnosis and treatment; Delay in relief from physical suffering; Abandonment by spouse
2 - Early detection and treatmentPv57: Long walk to freedom, Go, Fathers, Go!
Issues: Delay in cancer detection; Access to cancer treatment; Poor services.

Pv206: The encouraging trio: (Medical support, family and friends)
Issues: Need for primary healthcare cancer expertise; Importance of early cancer detection.

Pv234: What are my chances?
Issues: Poor services; Lack of patient-centredness; Transport challenges.
3 - Patients' right to health carePv296: It is hard!
Issues: Lack of information; Lack of treatment close to home; Financial challenges.

Pv60: Braving the storm.
Issues: Lack of information; Lack of patient-centredness; High worth of good services; Emotional and family challenges.

PvM254: Cancer, where do you come from?
Issues: Emotional trauma; Delay in diagnosis; Information needs; Value of support; Schooling.

PvM145: I wanted to live
Issues: Emotional trauma; Delay in treatment; Lack of access to medication; Medical aid challenge.
4 - Training & education for healthcare workersPvM295: Hope!
Issues: Staff shortages; Lack of staff support and training; Poor standards of oncology nursing training; Finances, schooling, language barriers.

Pv95: Build ("Bou")
Issues: Patient centred care; Early detection of cancer; Need for staff training.
5 - Cancer stigmaFuture
6 - Psycho-social care for patients and familiesFuture
7 - Re-engineering the health systemFuture
8 - Negative impact of povertyFuture
9 - Collaboration to improve service deliveryFuture

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