2. Launch Oncology booklets
10.00 Opening and welcome - Mrs M. Zuma-Mkhonza
10.05 Opening prayer & candle lighting - District chaplain
10.10 “The patient perspective” - Mr Hlongwane
10.20 “Uyini umdlavuza?” booklet - Mrs D. Mariah-Singh & Mrs E. Raymakers
10.35 “The oncologist’s perspective - Dr L. Stopforth
10.45 “Colorectal cancer” - Prof Madiba
10.55 “CANSA programmes & partnerships” - Mrs L. Strydom & Ms C. Noble
11.05 “Nutrition for cancer patients” booklet - Mrs Z. Mtshali
11.15 Remarks and introduction of MEC - DDG DHS
11.25 Grey’s Hospital Choir
11.30 Keynote address and unveiling of booklets - MEC Dr S. Dhlomo
11.40 Vote of thanks and closure - Dr Bilenge & Mrs L. Chirkoot
11.50 National anthem by Grey’s Hospital Choir
12.00 Refreshments; information stands, health screening and informal discussion
3. Uyini umdlavuza?
• Why this booklet?
• What is in this booklet?
• How to use it?
• When and how can you get it?
4. A Cancer Diagnosis
• Finally a diagnosis
• Referral to others in the MDT
• Role of the hospital social worker
5. Support Group
Emerging themes:
patients don’t understand what cancer is
myths and stigma
distress after the initial diagnosis
patients experience difficulty talking to family
anxiety re prognosis
false hope
6. Who are our patients?
Patients:
rural areas 56%, urban 26%
unemployed
level of education = grade 7
traditional and western belief systems
7. How (most) HCW
communicate information
Patients seldom understand the HCW because of:
medical jargon;
fragmented information;
information is not reinforced;
lack of community awareness on cancer;
HCW’s are uncomfortable giving patients bad
news
8. How (most) patients
receive information
• Dependent on:
age
level of maturity
culture
past experiences and current struggles.
• Patients typically do not ask questions
(disempowered, fear, implicit trust).
• Denial
9. How the support
group helped?
“Thank you for your generosity. You’ve changed my life. You
really mean it to me. I use to thank God for giving me a social
worker like you. I’m like this because of you. I won’t forget
you. You’ve helped me so much. I really appreciate.”
“I feel strong to ask more information”
‘I’m feeling happy because they tell me some
answers that I want’
“When I heard I had cancer I wanted to die. But now I see that
I can cope.”
11. What?
• a patient information booklet on cancer in isiZulu and English
• language level grade 9
• basic information
– What is cancer?
– Treatment of cancer
– How do I take care of my body during cancer?
– How do I cope with cancer?
• distributed at diagnosis by HCW
• available for HCW’s from www.kznhealth.gov.za
12. Why?
• patient education is one of the Batho Pele rights
• 99% of patients do not understand their diagnosis
– medical jargon too complicated
• fragmented information
– no time for individual education @clinic
– each HCW provides “their” part only
• no concept/framework of cancer in the community
– poor awareness of cancer signs & symptoms
• no basic information available in African languages
– most information only in English
– targeted at higher education levels
13. Why too?
• talking about cancer is difficult for HCW’s
– insufficient knowledge of the cancer process
– disease, dying and death are taboo
– fear of grief and bad news
– age and traditional hierarchy
– “doctors” responsibility
– how to even start?
• “Uyini umdlavuza?” as an ice breaker, a starting point
• make note in medical file: hand-out, topics covered
14. Why three?
• private healthcare:
– higher literacy, higher income, more urban population
– fragmented treatment
– no immediate involvement Allied Health
– no designated MDT contact
– need = high for coordinated information
• traditional healthcare:
– high adherence, community based
– poor knowledge of initial signs and symptoms: CAUTION
– tool for referral?
15. How?
• initial writing by physio and social worker October 2014
• incorporate information from Oncology Team (Oncologist,
Radiotherapist, Allied Health, Social work)
• pilot patients M3 Oncology Ward January 2015
• adaptations by adult education lecturer June 2015
• translation by admin assistant July 2015
• proofreading oncology nursing staff July 2015
• presentation SASMO congress Cape Town August 2015
• approval corporate communications KZN Health December 2015
• lay-out and printing Cansa January 2016
16. How to talk cancer?
• speak honestly, in simple language and use metaphors
• use the booklet for pictures and general reference
• 3C’s:
– consistent information
– correct information
– check if information is understood
• no false hope
• as much information as patient is ready for
• take time and listen with your heart
17. Take home message
• information = empowerment and reduction of fear
• proper information is a team effort
• check frequently for arising questions and
concerns throughout the cancer journey
“It always seems impossible
until it’s done” – Nelson R. Mandela
18. The way forward
• educational materials to be developed in a consistent and
prioritised way
• funding??
• national distribution?
• translation in 11 official languages
• correct departments need to be involved
– DoH resources rather than UKZN
– consistent translation…
• distribution and promotion
– all hospitals with oncology treatment facility
- website DoH - CANSA website - hospices
Patients know they have Cancer/ Umdlavuza but they do not understand what this means. They were receiving treatment that they didn’t understand, they consented to operations they did not understand. Confusion: how did the treatment work? why treatment took so long? Why tests and retests in between treatment? Why side effects?
We may not realise how prevalent stigma is. One patient would take a pass out every weekend, go to the shops and buy some groceries and then return home so that he could tell his neighbours that he was working on a farm during the week and came home on weekends after getting paid on a Friday.
Without accurate information, patients fear they will die and their lives are turned into turmoil.
All patients expect that at the end of the treatment they would be cured even if they are in stage 4. at the same time there is a lot of anxiety about it because of what they think they know about cancer.
Many patients do not know how to tell their families. They didn’t understand it themselves.
HCW may find what I’ve just said hard to believe. Most doctors would contest that they have told the patient their diagnosis.
How the patient is told is where the problem lies. With no prejudice against oncologists and HCW’s, we tend to use medical jargon. We say diagnosis, metastases, biopsy, poor prognosis etc. We expect the patient will understand because we told them and perhaps we went one step further and told it to them in isiZulu. However, medical jargon is not one of South Africa’s official languages.
When I suggested to a client that he address his concerns about the delays in his treatment with his doctor. The patient and others in the support group vehemently agreed that he should not. His fear that was that his questioning would be seen as challenging the doctor’s authority and upset the doctor. He feared that the doctor would give him “a wrong injection” and kill him.
The support group proved to be an invaluable resource for the hundreds of patients who were exposed to it.
As beneficial as the support group was to the patients who attended it, it had limitations
Booklet distributed as a tool by HCW to individual patients at diagnosis, not for wide distribution or self-diagnosis
HCW can be clinic, hospital, hospice, Cansa support group.
-framework for HIV often referred to: can I spread my stomach cancer to my wife by having sex?
-Cansa CD in isiZulu available
"During our training they showed us a picture of someone with a nipple that was dysformed, so when I saw that I decided she needs to get a check-up," he says. "There are some things that we cannot do with Zulu medicine that must be done with white medicine."
2011 African Journal of Traditional, Complementary and Alternative Medicines article: "to minimise the current distrust between modern and traditional doctors … both traditional and modern doctors must acknowledge their areas of strengths and weaknesses from which they operate". The article further notes that "traditional healers have contributed to promoting positive health behaviour and serve as a good referral point to modern healthcare systems".
Cooperation with iTeach?
Not a designated project, passionate concern sparked the effort
Timeline?
Metaphor:
-team effort: involve nurses, social work, allied health,
-check frequently: reinforce information at every contact
Not a designated project, passionate concern sparked the effort
Timeline?
Feel free to take a sample, and feel free to download from kznhealth….
