Uganda Health Reporter The Uganda Health Communica�on Alliance Vol. 3, No.1
uhca@healthuganda.org
4 January, 2010
Journalists Should Go Beyond Describing “Symptoms of Failure”
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f journalists were doctors and the health care system was their patient, the patient may well die soon.
very frustrating. You become reactionary because of the environment.”
Governance Issues
Why? Because they focus mostly on the symptoms of trouble in the health-care system, and rarely try to look beyond them to explore the root causes of problems. That is one conclusion that emerged from a forum on the status of health journalism in Uganda. The 20th November discussion, sponsored by UHCA and the International Center for Journalists, brought leading experts on health together with journalists to explore ways to improve the quality of health journalism in Uganda. The experts’ comments will help guide UHCA’s research and training efforts in 2010.
Good News, Bad News The good news is that nobody accused journalists of ignoring health. The bad news is that, by failing to focus on the underlying reasons for problems, reporters often fail to have the positive impact they could have. They give the public countless pictures of failures in the health system, but rarely explain why conditions are bad or what can be done to fix them. Some of the blame lies within the health sector, according to Francis Runumi, Ag. Commissioner for Health Services Planning at the Ministry of Health. “We have not done very well in communicating our successes,” Runumi said. “We also have not done well in communicating where we have failed.
“We have not done very well in communicating our successes… or where we have failed,” -Dr. Runumi. The public is left guessing what is going on in the health sector.” Paul Kagwa, Assistant Commissioner for Health Promotion and Education at the Ministry of Health, cited coverage of the health workforce. The media
Francis Runumi, Ag. Commissioner for Planning in the Ministry of Health
are full of stories about health workers who are rude or even abusive to patients. But, Kagwa noted, journalists often fail to explain that health workers are underpaid, overworked and cannot keep up with demand because health facilities are inadequate. “You don’t go to work and say my plan is to be rude to 50 people,” Kagwa said, “but the environment in which you are working…is
William Mbabazi, Chief Disease Tracker for the World Health Organisation in Uganda, argued that journalists should focus not just on individual diseases and treatment, but on “governance” – on how decisions affecting the whole health system are made. Specifically, they need to examine how demand for health care is shaped, who gets what, what it costs, who pays for it and if there is accountability. Understanding these issues, he said, requires looking at financing, human resources, government programming, infrastructure and logistics, all as they are shaped by interest groups and societal values – and reshaped in important and not always constructive, ways by the international community. Failures in governance lead to poor use of resources, Mbabazi suggested. Stories about exotic
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www.healthuganda.org
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HCA is proud to launch officially its website: www.healthuganda.org. The site features health information we have amassed over the past two years on a wide range of health topics. It also features directories of contacts health reporters and communicators should find useful in their daily work: listings of hospitals through Uganda, important health associations in Uganda, Ministry of Health officials, health-oriented nongovernment organisations, health experts and more. The site also contains archives of the monthly workshops UHCA has conducted on a wide range of health issues, including experts’ presentations and, in a number of cases, background resources, names and contact information for experts, and useful articles in the Ugandan media. You also now can go to the webwsite to find current and past issues of our newsletter (Uganda Health
Also in this issue: News: Breast Cancer..........................…...………….......................................................................Page 3 Ethics and Reproduc�ve Health Repor�ng...............................................................................Page 4 Health Myths...............................................................…...………….….........................................Page 5
Reporter). And we aren’t done yet. In the months ahead, we plan to compile our own resources on health-related research, with an emphasis on work being done right here in Uganda. We will compile highlights of healthrelated coverage in the Uganda media. And we will host discussion groups so that you can exchange your views on the issues of the day with us and with your professional colleagues, list training opportunities and coming events, and more – all in our question to become a one-stop center for health information that will improve the amount and quality of information available the media – and hence to the public. We hope that you will enjoy your visit to the website, find the information you need, and come back to see us many times. And please send us your comments and suggestions. The site has tabs at the bottom of every page specifically for you to give us feedback. We are counting on your help☻ Uganda Health Communica�on Alliance P.O Box 36600, Kampala, Uganda Phone +256 414 669523 www.healthuganda.org
Health Experts’ Views
Journalists Should Go Beyond Describing “Symptoms of Failure” medical treatments in the west have given rise in Uganda to demand for nanotechnologies – like the capacity to remove a person’s spleen without cutting his abdomen, even as basic medical services that could spell the difference between
agenda, supporting coalition-building and providing information that leads to policy learning. In 2008, for instance, the Daily Monitor published a series tracing deficiencies in Uganda’s hospital system. Among other things, the series systematically described how failures at local health facilities ripple through the system, leaving regional referral hospitals so inundated with patients with minor problems that they can’t address the more serious conditions they were established to handle.
as the Monitor story showed, ones who work with other participants in the health sector and cover policy issues in a sustained way can make a
The Monitor worked closely with experts to present a complete picture, according to Ssengooba, who said the series had enormous impact. The stories caused great discomfort in government, he said. Eventually, “big people who felt embarrassed by these stories said, ‘Why don’t we go to World Bank and get a loan and fix these hospitals?’” Paul Kagwa
Freddie Ssengooba
huge difference. “If we want to tackle complex and probably bigger spheres and have bigger influence we need really to not to work alone. We need to build coalitions…”
life and death are insufficient. He also observed that, because of donor priorities, patients who show up at Mulago Hospital with HIV-related health problems are likely to get better treatment
Health workers don’t go to work and say “My plan is to be rude to 50 people,” but the environment in which they are working is very frustrating, according to the Ministry of Health’s Paul Kagwa than ones with diabetes. “There are some people who don’t die but live with permanent disability,” he said, “that comes out of the injustices in our care environment.” Emilio Ovuga, Dean of the Faculty of Medicine at Gulu University, also stressed inefficiencies and inequities in the health system, citing research that the percentage of “defaulters” – people who are diagnosed with health problems but fail to follow through with treatment – varies widely between health facilities. He urged journalists to consider a wide range of health issues, including mental health, HIV/AIDS, tuberculosis, malaria, the health of mothers and children, chronic health problems, accidents and self-injurious problems, violence, human sacrifice and social injustice.
What is to be done? Freddie Ssengooba, health economist and Lecturer at the Makerere University School of Public Health, challenged journalists to “step the game up to affect the institutions, power relations and structures that shape those pictures.” Although policy formulation is highly complex, journalists can help shape it in significant ways by setting the
William Mbabazi
They did just that, seeking a $100 million loan to finance a sweeping overhaul of the country’s hospital system.
Next Steps Looking ahead, Dr. Runumi from the Ministry of Health proposed that UHCA schedule regular meetings with Ministry of Health to discuss health issues, the latest research, and other common concerns. He also agreed that UHCA should start
“Some people live with permanent disability that comes out of the injustices in our care environment,” Mbabazi said. publishing the ministry’s weekly epidemiological reports. Runumi said the Ministry stopped paying to place the reports in newspapers because the cost was too high. More broadly, Ssengooba urged journalists to work more closely with people involved in health. Reporters who work alone or publish isolated stories are unlikely to move policy, he said. But
Uganda Health Reporter - 4 January 2010
“Sometimes media houses don’t really value very much people working across networks. You need to budget time and creating incentives that are not so much output driven,” said Sengooba.
Reporters aren,t the only ones who need to change, Ssengooba continued. He argued that media owners need to recognize their own social responsibility to enable in-depth reporting. Covering policy meaningfully is virtually impossible when media owners expect stories almost instantly, often at a rate of more than one per day, according to Ssengooba.. “Sometimes media houses don’t really value very much people working across networks,” he said. “You need to budget time and creating incentives that are not so much output driven.” Otherwise, he said, “You cannot encourage a culture of working across domains where speed is not the issue but also depth and understanding”☻ For PowerPoint presentations by Drs. Ssengooba, Mbabazi and Runumi, please go to: https://www.healthuganda.org/index. php?option=com_content&view=article&id=1 32:health-experts-workshop&catid=74:healthpolicy&Itemid=37 For a CD recording of the presentations, please contact Vincent Akumu at: 0414 669523 or 0712 702305.
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Health Reporting
Breast cancer is not a spell By Deusdedit Ruhangariyo
Editor’s Note:
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s any Ugandan can tell you, this country is rife with myths about health. Many are deep-seated. Some even have a certain ring of truth. Mangoes don’t really cause malaria, for instance, but the fact that they ripen during rainy seasons – when mosquitoes also breed – does give rise to an apparent correlation between the fruit and the disease. Others seem harmless or perhaps even beneficial. Crossing a road has no magic effect, although it may reduce an infected person’s social contacts and thus slow the spread of disease. What is a health communicator to do? Some of us believe the best practice is simply to ignore the myths. According to this theory, the simple act of repeating untruths, if only to shoot them down, can have the unintended effect of spreading them, so it’s better just to write the truth and hope that it eventually will prevail. Others believe it is best to tackle a misconception head on. Somebody once said that good writing involves starting where your reader is and then taking him where you want to go. This view holds that if you fail to correct a misconception, the truth may have a harder time getting through. If people really believe mangoes cause malaria, for instance, how can you ever convince them that mosquito nets are a good way of avoiding the disease? In this article, Deus Ruhangariyo, editor of Orumuri newspaper and Radio West, takes the head-on approach to dispel misconceptions about breast cancer. For another example, see how Fred Ouma systematically knocked down 15 myths about the same disease in an article in the New Vision last year entitled “Can you tell the truth from the myths?” http://www.newvision.co.ug/D/9/ 31/656576/ouma%20and%20myth.)☻
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ey wake up, breast cancer, like any other cancer, is not a spell! But if you fail to understand that and get proper treatment, the results can be very scary, says Rebecca Jane Sanders, a palliative care nurse at Mbarara Regional Referral Hospital, Western Uganda. The term “breast cancer” refers to a malignant tumor that has developed from cells in the breast. Many women are dying of breast cancer simply because they can’t admit that they have the cancer. How can one beat what they can’t admit? Honest Twinomujuni, a palliative care nurse at Hospice Mbarara, says patients in denial often make statements like “I can’t have cancer,” “Your machine is exaggerating,” and “Where did I get it from?” only to return when the cancer is in its advanced stages and almost nothing but palliative care can be offered. ”Just like that, we lose people,” she says. Another health worker, Jane Sanders, agrees: “For many, whether in urban or rural areas, a woman with breast cancer is a hopeless case. For others, it’s a curse with spells that must be repulsed by witchdoctors.” “These notions have bred common yet dangerous practices of abandoning patients in the homes and at times isolating them or looking to witchdoctors
These notions have bred common yet dangerous practices of abandoning patients in the homes and at times isolating them, or looking to witchdoctors and traditional medicine men for help and traditional medicine men for help,” she adds. Those who seek help do so as a last resort when the cancers have spread and symptoms are many. At such a point, the chances of survival are greatly diminished. “We had a woman on our programme with breast cancer who had been responding well to treatment when a relative out of the blue began saying it was a curse upon her. Our pleading with the relative to help the woman adhere to the treatment schedule fell on deaf ears and a couple of months later when the woman was brought back to Hospice, the cancer had developed to fatal levels.
Deusdedit Ruhangariyo
There was little that could be done to save the woman. She died. The tragedy of such people dying is that some of these cancers are curable.” Treatment of this cancer can revive hope for the community. Sadly, this hope has been marred by patients believing more in the stories of curses and spells than in dependable cures. Only hospital treatment (usually in the form of chemotherapy – a powerful anti-cancer medicine that is given as a series of injections) can offer the chance of a cure. And the chances of survival can be good if treatment is followed. But you have to act quickly. Cancer cells use every passing second to feed or spread. The more you stay in denial, the worse the disease gets. “Accept it and follow up with treatment!” explains Dr Macrine of International Hospital Kampala. Almost all survivors can testify that this formula gives you the best chance. Honest Twinomujuni says, ‘Relatives and friends should try and deal with their shock first and be a candle to the patient, everything you say and do counts. If this is getting out of hand, seek for professional help, specifically counsielors and doctors. She adds that husbands, friends and relatives should show maximum support to their patients by adopting the “we” instead of “you” approach. “Say things like: ‘We need to do this and that. And you should not stop there; accompany her when she is going to see a doctor on her regular appointments. Make sure you don’t miss a single one.’” Financial constraints are forever increasing the cases of denial. If someone doesn’t even have transport home after the diagnosis, how are they going to go through the treatment, the feeding, and everything else that comes with the disease? So sometimes telling yourself the lump will go away is soothing. But it is dangerous. Early this year, Grace Atwine, 45, who lives in Nyabbani subcounty, Kamwenge district, claimed she had never held 10,000 shillings as a lump sum! How would you tell such a woman she has a disease….a very expensive one at that? Continued on pg 5
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Reproductive Health
Ethical Issues in Sexual and Reproductive Health Reporting
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By Lydia Mirembe
mainly the welfare of the public as a whole rather than of the individual. Working with media organisations often raises concern regarding the obligation to protect individuals’ privacy. News organisations may agree to help promote health interventions by publicising their cause by featuring a compelling story that reveals intimate information about individuals who have the health conditions, including children, for instance.
ommunication that aims to affect people’s views or health-related behaviour raises a multitude of ethical concerns, especially since it deals with topics that are integral to deeply held personal preferences and social values. Identifying and addressing these ethical issues has become imperative as health communication increasingly takes place in multicultural settings, commercial marketing tactics are widely embraced and new information-dissemination resources are rapidly developing. Attending to ethical considerations is not only a moral
To whom do we owe our allegiance? To the individual, the community, our own sponsors or employers, society or to our own profession? Choosing loyalties is an extremely significant step in the process of making moral and ethical decisions. Honest disputes may occur over who should benefit from a decision.
Attending to ethical considerations is not only a moral responsibility. It also has pragmatic significance… responsibility. It also has pragmatic significance: interventions that are sensitive to ethical concerns are more likely to gain trust and respect. Moral and ethical precepts that are relevant to sexual and reproductive health reporting include: i)
ii)
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The obligation to be truthful. This requires that all relevant information should be provided. It would be unethical to present a one-sided argument, to select only favorable evidence or to present scientific findings as certain when they are considered tentative. The obligation to do good – to promote people’s health or help protect them from potential health risks. The obligation to do no harm. Harmful effects can include physiological, psychological, social and cultural aspects harm. Respect for personal autonomy and privacy. Individuals have an intrinsic right to make decisions for themselves on any matter that affects them, at least so far as such decisions do not bring harm to others.
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The notion of justice. The obligation to promote justice refers to a fair and equitable distribution of resources, opportunities, benefits, and risks.
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Sincerity. Another obligation is to ensure that the message is truly relevant to the target population and not just made to seem relevant. The reasons for a communication initiative, including the goals and implicit agendas of sponsors, should be made clear. The identity and motives of stakeholders who are likely to benefit from the health communication activity should be disclosed.
Lydia Mirembe
Where Ethical dilemmas arise Ethical dilemmas occur when decisions involve compelling but competing values, or when one has to pit one important moral commitment against another. Ethical issues also arise in order to promote safe sex practices among youth one may need to discuss topics to which their parents object. This pits the
Ethical dilemmas occur when decisions involve compelling but competing values, or when one has to pit one important moral commitment against another. obligation to respect the authority of parents against the obligation to protect youth from harm. Similarly, meeting the obligation to be truthful can be a challenge for reporters, especially when they believe that to be effective they must be brief and deliver non-tentative messages. Some of the most complex ethical issues arise over levels of intervention. The promotion of health can take place at different intervention levels ranging from individual to interpersonal, family, community, organisational and societal. For example, the promotion of family planning may depend on messages that enhance individual motivation but may also need to address barriers to the adoption of family planning practices. In practice, much sexual and reproductive health communication focuses on the individual, aiming to influence individuals’ beliefs, thought and competencies. Individuals who do not adopt recommendations yet continue to be barraged with messages on the importance of family planning may be made to feel guilty. Ethical issues arise when interventions promote
Uganda Health Reporter - 4 January 2010
Targeting and segmentation also raise ethical issues. The mere decision to segment a population according to certain parameters contains moral judgments typically associated with considerations of equity and utility. Some populations may be viewed as deprived because they are not targeted. Consider members of the gay community who feel they are not catered for in HIV messages. Health communicators invariably face issues associated with justice and fairness when they choose to target one group rather than another, or when benefits of an intervention aren’t likely to be shared by all populations. Tools of persuasion, like exaggeration, omission, use of fear and emotional appeals to convince people to adopt particular recommendations are ethically problematic. Yet persuasive tactics often appear to be the most efficient way to get people to adopt the health recommendations. Cultural themes. Taking into consideration cultural heritage of minority and ethnic populations has become one of the staples of communication and message design. The underlying rationale is that the incorporation of cultural values symbols and themes can serve as a source of pride, increase identification with the message, enhance attendance to it and increase the likelihood of adoption of the recommendations. Ethical concerns however arise when cultural themes or symbols can be viewed as co-opted by detaching them from their original meaning which may devalue and demean them. This raises a moral dilemma. Should some cultural norms be challenged? Are SRH communicators obligated to confront norms they believe are detrimental to SRH related goals? Labeling, stigmatising and stereotyping: Throughout history, individuals or groups associated with threatening diseases were feared, stigmatised and at times even quarantined. Health messages that warn against the risk of contracting a stigmatised
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Reproductive Health
Sexual and Reproductive Breast cancer is not a spell...cont. Health Reporting...cont. Some Common Myths medical condition may inadvertently serve to reinforce prejudice and damage the self-esteem of those who have these conditions.
Should some cultural norms be challenged? Are SRH communicators obligated to confront norms they believe are detrimental to SRH related goals?
Recommendations All this suggests that, as health communications professionals, we must: · enhance awareness and knowledge of different ethical approaches and perspectives · acquire skills to identify and articulate ethical issues · develop capacities to recognise and be attuned to diverse social values · develop an appreciation of the difficulties involved in moral relativism · find ways to learn how members of different cultures frame and conceive what is ethical and what is not · develop culturally sensitive approaches to message design · find ways to promote respect for autonomy without overriding values of compassion and care for others · increase awareness of ethical issues associated with the use of marketing techniques · disclose any possible interests of sponsors or partners such a research agenda, organisational or personal gains · share approaches methods, ethical concerns and lessons with others · Assess ethical issues associated with the use of new information and communication technologies. Always lay great emphasis on reporting responsibly on sensitive issues. Most people’s experience of sexual and reproductive health is very personal and private☻
References Nurit Guttman (2003), “Ethics in Health Communication interventions”, in Handbook of Health Communication Lawrence Erlbaum Associates, New Jersey Christians et al (2005), Media Ethics cases and moral reasoning (7th edition), Pearson Education Inc, USA Brown Crawford and Carter (2006), Evidence-based health communication, McGraw Hill, Berkshire Lydia Mirembe is a lecturer in the Makerere University Department of Mass Communication. This article is excerpted from a presentation she made at a UHCA workshop on
In Uganda, radiotherapy costs UgShs50,000 per dose for six weeks. Tamoxifen tablets cost UgShs15,000 for a month’s treatment. One is expected to take a tablet every day for the next five years, totaling to UgShs 900,000. And chemotherapy costs 300,000 per dose.
Jennifer, an orange vendor at Ishaka market in Bushenyi district was recently diagnosed with breast cancer. When told about the cost of treatment she simply resigned to her fate. But Twinomujuni urges friends and relatives to try to help. “Come together, call every one that knows the patient together and fundraise whatever you can. Go to church, the mosque, and wherever it is you worship. Touch people’s hearts with your relative or friend’s story. Believe me, at least, no matter what happens you will have tried! Nothing beats the beauty of a clear conscience.” Marisa Weiss M.D., a breast radiation oncologist based in the US, says many things can cause “wear and tear that leads to abnormal cell growth – pollutants, hormones, pesticides, smoking, alcohol use, obesity, stress, Or maybe your cells just made a mistake one day when they were making new genes to pass on to their baby cells. Perhaps there was a misprint in the genetic instruction manual that said, ‘Switch growth on instead of growth off.’” Breast cancer is the most prevalent cancer of women worldwide. The World Health Organisation (WHO) estimates there were 1.1 million new cases in 2004 and 548,000 deaths from the disease in 2007. Today there are close to four million women living with breast cancer on our planet Regular screening tests for breast cancer, such as an annual mammogram and a breast exam during your annual checkup, allow you and your doctor to ensure that your breasts are as healthy as they can be. Screening also increases the likelihood that your doctor will find breast cancer early, when it’s most treatable☻
Mothers should give birth in a very dark room Surely, a dark room has nothing to do with giving birth. Whereas it is true that a newborn needs soft light, the midwife or a trained birth attendant, who is helping the mother, should have enough light.
Mothers should not bathe for weeks after childbirth Again this is not true. We should explain that after childbirth a woman should wash with warm clean water to prevent infections. Some mothers die from infections that develop after childbirth which sometimes are also associated with witchcraft.
Fruits cause malaria Most communities in Uganda believe that eating oranges, mangoes and other fruits causes malaria. As health journalists we need to come out clearly to dispel such beliefs by explaining the relationship between the ripening of fruits and the breeding habits of the mosquito. Fruits often ripen at the time when mosquitoes are many. Hence the increased malaria. Then we can go ahead to tell them to cut the bushes near their homesteads and fill all the holes where water can collect and become a breeding ground for the mosquitoes.
Cow’s urine can cure epilepsy Again this is wrong. But this false belief can prevent people from learning how those with the condition can be helped.
A goat tail cures goiter Once again, we need to tell people that lack of iodised salt causes goiter. So we inform them that for the prevention and treatment of this condition the best thing to do is to never use regular salt but to always use iodised salt. For cases of toxic goiter, advise people to seek medical help.
A banana fiber cures a child from diarrhea Here, some communities believe that when a child is teething, tying a banana fiber in its neck can cure diarrhea. This, too, is false and can prevent people from getting proper treatment for children with diarrhea☻
reproductive health on 24 September 2009. For more on the workshop, visit the UHCA website at: https://www.healthuganda. org/index.php?option=com_content&view=article&id=79:
reporting-on-reproductive-health-in-uganda&catid=41: hivaids&Itemid=37
Uganda Health Reporter - 4 January 2010
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