The Brasov-based hospice provides palliative care, a type of treatment that focuses on improving end-of-life care, including relief from suffering, for patients and their families. All the patients being cared for by the hospice are dealing with life-limiting diseases with no cure, such as cancer and HIV/AIDS. This kind of care, which for Hospice Casa Sperantei includes home care, inpatient units, an outpatient clinic and day centers, isn't widely available in Romania.

As part of a Rising Voices microgrant, the hospice is now also capturing and documenting their patients' stories. Through the grant, they have trained doctors, nurses, and staff to use audio recording equipment, conduct interviews with the patients and their families and take photos, so they can directly share the patients' stories and histories. Snippets of these interviews are now being posted in Romanian on a blog created by the hospice. To bring more awareness to the issue of palliative care, the hospice will also be blogging about this type of treatment, including its objectives, successes and challenges.

Malina Dumitrescu, the project's leader, had previously said that she hopes the patients' stories will help people in similar situations, as well as the patients themselves. Many of the stories posted on the hospice's blog focus on the struggles faced when dealing with a disease, attempts at staying positive, and how grateful the patients are to receive attentive care at the hospice.

Ion's story, for example, discusses his difficulty in supporting himself and how he found a home at the hospice. Known as K.I. on the blog, the 51-year-old has rectal neoplasm (or cancer of the rectum). Ion is also Roma, many of who suffer the worst health conditions in the industrialized world. He says:

I had a stroke and my wife lost her apartment. I was very worried and eventually got sick. In time the cancer disease appeared. I am currently living in a wooden home without light, and it’s a disaster area where I live. I cannot work anymore, as I don’t have dexterity and my hand shakes from doing anything. I was paralyzed too at one point, right-side paralysis and then the left side. I’ve got seven children and 11 nephews. I’ve got a child with his leg cut off and another one who is handicapped.

I think that through a common cold my tonsils got inflated. I didn’t notice, but from there they hardened and became like an egg. I’ve had x-ray after x-ray. I even had an infection that started spewing. I was eventually diagnosed with cancer…The doctor told me the people from Hospice Casa Sperantei could help me and tell me everything. I asked the doctor if there is a cure for my disease and she said no. So I am stuck with this wound that is spewing continuously. My head hurts like there are thousands of ants up there and my back aches.

My sickness began five years ago — two years I was in neurology and for two years I’ve been going to Hospice. It’s better here, it’s like my mother’s home, people with heart, very kind, and they listen to your troubles. I’ve gotten used to it. I know that there is nothing I can do and I have to get over this too. I was angry, so angry in fact I think that is what caused my stroke. I know that cancer is dangerous. I know how much we struggled with my mother. As much as I get from God, I will live, and the rest, oh well.

Agata, known as L.A. on the blog, has been at the hospice since 2002. Single and 33 years old, she has a brain tumor. In her post she talks about growing up with another health condition.

I was in the 11th grade when multiple sclerosis began. I was paralyzed from the waist down. I had to learn everything from zero, how to be a whole person, because it is very important to accept who you are. I started learning how to use the wheelchair. In the meantime my little brother was growing up. My parents divorced and so I learned how to do everything — how to be a housewife and sick and a sister. But the fact that I have taken care of my brother helped me overcome my impasse and that feeling of loneliness.

She goes on to talk about how her current diagnosis changed her life and helped her feel like a normal person again:

The diagnosis relieved my life, because I knew what I was fighting. Up 'till then I was on the verge of saying that all the symptoms were only psychological. Many people have left me, thinking that everything was fictive.

Gabriel, R.G. on the blog, also talks about his disease and his difficulties in dealing with a recent setback. The 64-year-old has leukemia and has been at the hospice since 2006. In this post he says:

My disease began last year with partial paralysis. I did 10 sessions at the hospital and I felt like everything was changing for the good. Three days later, I was in the kitchen and I fell down. Since then no more stability and I am very weakened. Firstly it affected me in a psychological way, like I was being destroyed. I was on the verge of disappearing, I wanted anything to happen, just to escape, because it is torture, a very hard torture.

Gheorghe, called M.G. on the blog, also shares stories of struggling with his illness. He had larynx neoplasm (cancer of the larynx or the voice box). The 59-year-old was divorced and lived alone, as his daughter lives aboard. In this post he says:

The staff here [at the hospice] are obviously interested in the patient, they are conscience-stricken by the patient. In other places they come to give you the pill and even that as fast as they can, because they have other places to go to as well. Whilst here, they have time to tend to the patients…

…I don’t know but it’s as if I have no more feelings, as if I’ve been discouraged, as if I live for nothing now. If death were to take me now I wouldn’t be sorry, I would no longer torment others around me with my suffering. There aren’t any hopes. It is obviously pointless. I want to move forward, but even after eight months of treatment there are only problems and problems. I don’t know this disease's prognosis, whether somebody has made a recovery. I can’t tell, I haven’t heard anyone talk about it. I haven’t asked either, but I haven’t heard.

My greatest fear is not being able to move myself. To lie in bed and to have no one come and bring you a glass of water, then it’s really bad. And this is exactly what it’s going to be, and more, I say. The loneliness, that’s that. We’ll see, we’ll figure it out somehow. I feel more upset now that I’m ill, but what can we do about it. I keep moving forward. I can see, practically, that it isn’t good.

Gheorghe passed away in February after he shared his story with Hospice Casa Sperantei. He had been at the hospice for two years.

There are 79,000 people (or 3.5 percent of all adults) in Congo living with HIV/AIDS. AZUR Development's AIDS Rights Congo project, funded through a Rising Voices grant, is working on documenting the stigma and discrimination that these people face. They are doing this in part by posting stories of their experiences on a blog. Through the project, communication officers and leaders of local HIV and AIDS organizations have also been trained in digital story telling, podcasting, and blogging. Each communication officer is using these newfound skills to share stories of how HIV/AIDS is affecting the local community where he or she works.

Citizen media training session for communication officers and leaders of local HIV and AIDS organizations.

The latest posts on the project's blog reflect how different segments of Congo's HIV-positive community have been impacted by the stigma that accompanies having the disease. A few of the posts focus specifically on women, who make up 59 percent of those living with HIV/AIDS in Congo.

For example, a post by Dieudonnée Blandine Louzolo, AZUR Development's Communication Assistant, discusses how the quality of health care is compromised for HIV-positive women. Though HIV/AIDS services have been expanded in the city of Pointe-Noire, the negative attitude of health professionals still poses an obstacle to these women getting proper care. It's a catch 22 for many of these women: they're encouraged to get tested for HIV, but if they test positive they often pay a price. The post elaborates on how this applies to pregnant women.

Health professionals working at hospitals, who should be providing moral and psychological support for the patient, are leaving women at birthing beds as they fear HIV infection; thus some recommendations of ethics are no longer fulfilled.

An HIV-positive woman lost her baby during childbirth at a hospital in Pointe-Noire because she was HIV positive and no midwife wanted to touch her. Many of them after treatment with PMTCT [Program for Prevention of Mother to Child] are abandoned… Another HIV-positive pregnant woman was saved by a midwife trainee, although her child died after birth; again in this case the midwife feared infection.

In maternity hospitals, women with HIV do not know what to do if a midwife asks them to wear gloves covering their hands and arms. Sometimes their HIV status is disclosed to their families by health professionals without their permission…

…Rejection, reluctance, and the abandonment of women infected with HIV continues. AIDS activists should act to stop such discrimination, which violates the right to health care for HIV-positive women.

Sylvie Niombo, the project's leader and executive director of AZUR Development, writes a post about another group of HIV-positive women who experience discrimination: indigenous women. AZUR Development helped conduct a project about home-based care for indigenous women living with HIV/AIDS in the province of Lékoumou. This region has the highest rate of HIV in Congo. In the post Niombo reflects on the project's outcomes:

Called pygmies, the indigenous people in the province of Lékoumou live in extreme poverty and away from the majority of the population (the Bantu). They live in huts, surviving thanks to the products of hunting and gathering in the forests. Pygmies have little access to education and basic social services. They are discriminated against by the Bantu people, who generally consider themselves superior to pygmies.

Many pygmy women and men serve as cheap labor for the Bantu people. But when HIV/AIDS gets involved, it further complicates an already precarious situation. Indigenous women are also vulnerable to HIV/AIDS and doubly stigmatized….

…When they come for the first consultation at the hospital in Sibiti, after testing HIV positive, indigenous women do not usually return. That’s understandable. Who will pay for transportation, meals and to stay in Sibiti so they might hopefully survive HIV/AIDS? The answer is easy to find: nobody! Already regarded as ‘less than nothing' by some Bantu people, it is difficult to imagine that they can look at them.

AZUR Development and ACIP wanted to create something new, implementing a project to train HIV-positive indigenous and Bantu women to take care of themselves and their peers.

HIV-positive women aren't the only ones being stigmatized though. Dieudonnée Blandine Louzolo also discusses how having HIV/AIDS can affect prisoners in Congo. The post shares a story about a male prisoner in Pointe-Noire and how his and other prisoner's stories reflect the need to advocate for the rights of those living with HIV/AIDS, rather than just focusing on prevention.

At Pointe-Noire, Congo, a HIV-positive married man and father was released from prison when the police became aware of his HIV status. The deep meaning of his story must be analyzed.

We will never tire of saying that HIV/AIDS continues to be a subject of controversy and stigma even in police stations.

An HIV-positive man who had committed an offence was jailed at the police station in his neighborhood and was waiting for the outcome of the procedure that was underway. He was released because the policemen feared that he would infect other prisoners.

Blogging is one way that AZUR Development is trying to bring these stories of discrimination to the forefront. Another vehicle they're using to combat the stigma and raise awareness of issues related to HIV/AIDS is radio. The organization has produced various radio programs with CJESS, a youth group in Pointe-Noire that looks at sexuality issues. Niombo elaborates on how these radio broadcasts are helping to shift the way people perceive those with HIV/AIDS:

‘This is not content that we used to listen to,' said listeners. Herman Malanda, CJESS Coordinator and host of the radio programme, said that the listeners were surprised and interested in the programs. SMS and calls were made requesting more information on AIDS treatment and how people could live with HIV.

What was interesting about these radio programmes is that they have broken the taboo and helped deal with the lack of information on how a family can care for a person infected with HIV.

We often hear that parents don’t want to spend their money on an HIV-positive person, since the person is regarded as ‘dying' and therefore there's no need to waste their time. These radio programmes therefore are aimed at educating families about the fact that living with HIV is not a crime and everyone should be loved. Solidarity should be shown for people living with HIV.

The organization plans to run other radio programs in the future on focused on HIV/AIDS and violence against women and girls.

The project, which is funded by a Rising Voices micro grant, was launched last summer by the Orizonturi Foundation (The Horizons Foundation in English). The organization, based in Câmpulung Moldovenesc, Romania, has been helping people with mental health issues for almost 15 years. The project's Blogging Club is made up of some of the mental health service users involved with the organization.

The current Blogging Club members have already been trained through the project in how to blog, use digital cameras and upload pictures. They also went though a practicum period where they got to practice using their newfound skills. Many project members have started their own blogs. The eventual goal of the Blogging the Dream project is to develop one collaborative blog, in the hopes that it will help decrease the stigma that people with mental health issues face in Romania.

The Blogging Club members took a two-week break from their blogging activities last month for Easter vacation. During this time they prepared for the holiday, which is important to the Orthodox community in Romania, says project leader Gabriela Tanasan. This photo shows “the basket with bread and food that we take to church on Sunday morning to be blessed. Then we eat what is in the basket. It's one of our customs on Easter,” she says.

Tanasan adds that the two-week break isn't the only thing that has slowed the project down a bit, though — there have been other challenges in developing the collaborative blog. She points to two challenges in particular:

1. The unsteadiness/fickleness of people with mental health problems either because of their health problems or because of the wrong influence from their relatives/family. It is still about prejudices, stigma, the shame of being different.

2. The small number of computers — we have four computers. Only one of them is a new one (that one we bought with the Rising Voices grant) and other three old computers don’t allow us to install all the programs we need to blog…that's why each participant has to wait for another one to finish his/her work on the best computer.

The latest Blogging Club meeting

Tanasan is using new strategies to boost the number of Blogging Club members though. The Blogging the Dream project has invited members of the Orizonturi Foundation's literary group to help them promote their art to a wider audience. The organization has also started a new project this month, which Tanasan hopes will attract more people to get involved. Called “Traveling Beyond Barriers,” the program is an initiative to increase the social integration of mental health service users. Each month, the group will plan a one-day excursion with a particular educational focus, such as geography, arts or ecology. The participants will have to record their experiences through pictures, videos, drawings or writing and then post these observations on their blogs.

Despite the challenges that Tanasan and the other Blogging the Dream members are facing, many are praising their great work. For example, Mara, the organization's former Peace Corps volunteer who was involved with their magazine, “A FI – TO BE,”, had this to say about the organization:

My time in Romania gives me hope regarding the state of mental health advocacy in the world. The Horizons Foundation recognizes that the best changes in policy start locally and at the level that matters most: mental health users and their families. The long CV of projects of Horizons testifies to the fact that the Foundation is making a world impact at the local level every day.

REPACTED is a community-based youth-to-youth organization located in Nakuru, Kenya. They teach youth about HIV/AIDS, drug and substance abuse, and other social issues, and use theater and citizen media to try to create behavioral changes among these youth. With the help of a Rising Voices grant, REPACTED purchased a computer and a mobile Internet modem to allow for Internet access in their office. Since then, they have started classes to teach their members how to blog.

This particular session, which occurred in mid-March, didn't take place in their office, but in a cyber café in Nakuru. Muriuki, who is new to blogging, joined other budding bloggers in a session led by members of REPACTED; there were 18 participants in total. The session, which began in the morning, kicked off with the participants figuring out what topics they wanted to explore in a blog. Muriuki elaborates:

Some of the topics blogged on were TB [tuberculosis], rape, STIs [sexually transmitted infections], HIV/AIDS, malaria, and some blogged about their profiles and why they joined Repacted. e.g. Hillary, one of the members, said the main reason as to why he joined the group is his passion to help the community to change its behavior positively. I want to blog so that I can share my stories with the world, helping to change attitudes towards women and people with disabilities.

In the past, challenges such as a slow Internet connection, have affected the blogging training sessions. Similar challenges, some of which may stand in the way of the participants blogging regularly, came up during this session. Muriuki expands on these obstacles:

Most of the members are not familiar with the blogging process, especially the topics they wanted to discuss.

Some didn’t have efficient and active email address.

Members had to take turns blogging due to few computers.

Some members didn’t have enough information on the topics e.g. TB and malaria.

The blogging time provided was not enough, since most members were not able to complete their blogging and to also type fast.

Despite these challenges, Muriuki says the training was helpful and that there were successes:

Most of the members were able to blog successfully and new members got an opportunity to join the blog spot.

She adds that participants were very happy because they not only had a chance to blog, but they also used the opportunity to access their email and Facebook accounts, as well as to chat with their friends. They requested if they could blog at least once or twice a week. With more time and practice hopefully Muriuki and her fellow participants will become more comfortable with blogging and be further able to share their stories and insights.

You can stay up to date with the latest developments from REPACTED on their project blog.

Through the “Blogging the Dream” project, funded by a Rising Voices micro grant, a blogging club was created last year for mental health service users. The club's members are being trained on how to create and maintain blogs, with the eventual goal of developing one collaborative blog. The Orizonturi Foundation, based in Câmpulung Moldovenesc, Romania, has been helping those with mental health issues for almost 15 years, and hopes that this blogging club will help decrease the stigma that people with mental health issues face in Romania.

The project began with a technical training period, where participants learned how to blog, use digital cameras, and upload pictures. Since January, however, the project has moved into the practicum phase, where participants have been able to review and practice what they've learned so far. During this time, blogging club members are also becoming more familiar with the Internet, and have been able to work on their blogs and get comfortable with blogging on their own.

Blogging the Dream's project blog shares a few excerpts from their members’ blogs, where participants were asked to reflect on their involvement in this project. For example, 13-year-old Andrea says:

I learned about this program [Blogging the Dream] through Mirela, who I want to thank very much. Together with the Orizonturi Foundation, she has taught me how to use the computer. I always come to this course with pleasure and willing to learn something new. I joined the program because I enjoy writing and playing games on the computer but here I learn how to work on the computer. My gains from this program are the friendships with those I study and the lessons I learn from them.

Geta, a 46-year-old blogging club member, also shares her views:

I got involved with this program [Blogging the Dream] to learn new things, and now I’m able to slowly navigate my own way on the computer. Communicating with more people is what participation in this program means to me. I already feel closer to people since starting this program. The theoretical training was interesting and I learned new things. I will use the knowledge gained to create my blog and communicate with more people.

Here are some of the participants' developing blogs (in Romanian):

And it's not just the blogging club members that are benefiting from the Orizonturi Foundation's access to the Internet. The project blog explains how the organization's literary circle and English club often use the Web for research, and that some mental health service users have set up email accounts and received a crash course on the Internet during social hours. The project blog elaborates:

A number of the blogging participants are also active in these groups and take pride in showing off their blogs to fellow organization members. In turn, spreading curiosity and interest within their immediate social networks. We can only hope this continues to branch throughout our entire community.

AZUR Development is based in Brazzaville, Congo, but they work to provide leadership in the socio-cultural and economic development of all of Congo. They launched the AIDS Rights Congo project last year with the help of a Rising Voices micro grant. Through this project they are training communication officers and leaders of local HIV and AIDS organizations in digital story telling, podcasting, and blogging to help document the stigma and discrimination faced by people infected by HIV/AIDS in Congo.

During the 16 Days of Activism Against Gender Violence, AIDS Rights Congo participated in Take Back The Tech's campaign to reclaim information and communication technologies to end violence against women. As part of this, AIDS Rights Congo blogged about the rights of women infected and affected by HIV/AIDS and shared their thoughts on violence against women.

AIDS Rights Congo also aired radio broadcasts in Pointe-Noire from December 1 to 10 on the topic of violence against women. To encourage people to reclaim technology such as cell phones to achieve positive outcomes, they asked listeners to send SMS messages or call in with their thoughts on the issue. As incentive, two mobile phones were awarded to listeners who sent SMS messages appealing to fight sexual violence against women and girls in Pointe-Noire. Sylvie Niombo, the project’s leader, talks about reactions to their broadcasts:

The SMS response was huge and the responses will be online soon. The SMS talks about sexual violence, and domestic violence against women and girls. It was a good way of expression. And then after posting them on the Internet, we will invite readers to comment.

AIDS Rights Congo has already posted some of the SMS responses, which show how Congolese women and girls experience domestic and sexual violence, and how men perceive violence against women.. For example, this post lists SMS responses received from Congolese women who have suffered violence because of their husbands:

Despite all forms of violence that I suffer at the hands of my husband, I consider them as accidents and I think he will change.

We are forced to suffer all forms of violence, because we love our men, despite their violence, and also because of the children. And sometimes we don't have a good social situation, because there is nothing for us anymore at our parents' home.

Yes, you're scared of losing our home if ever we think to lodge a complaint or ask ourselves where will we live, especially when you don't work.

We don't know who to turn to when we are victims of violence, because our friends give bad advice.

For fear of further abuse, we are sometimes obliged to go along with the decisions of our husbands, even when they are bad.

My husband asked me for forgiveness only once since we've been together.

Why don't you raise these kinds of issues all the time? Thank you for the advice.

Does justice really care about these kinds of problems? When I went to the police (PSP), I was told we had to settle amicably, because he is my husband.

In this post, AIDS Rights Congo shares SMS messages sent by men expressing their thoughts on violence against women:

Men taking alcohol is one of the main causes of men beating women.

I would say that domestic violence is a strategy for men to have control of the home, and so the family in general. For if a man is not violent, the woman does not pay attention to you.

If my wife takes me to court, I drive her out of my home. I replace her with another. Many women enjoy violence to live well.

Sometimes the women themselves are the causes of the violence against them.

Our women are truly victims, because they don't dare speak for fear of being hit again.

When a man marries, he must give laws. If these laws are not respected? It is important to apply force.

In addition to the work done with the AIDS Rights Congo project, AZUR Development also carried out other activities in Pointe-Noire during the 16 Days of Activism Against Gender Violence. They held a workshop to raise awareness on violence against women, sexuality, and HIV/AIDS, which was attended by more than 160 women, as well as advocacy meetings defending the rights of HIV-positive women and their families.

Translations of French blog posts into English by Jennifer Brea.

Based in the city of Câmpulung Moldovenesc, Romania, the Orizonturi Foundation has been helping those with mental health issues since 1995 by providing services ranging from counseling to organizing excursions. The “Blogging the Dream” project, funded through a Rising Voices micro grant, involves creating a blogging club for their mental health service users, where participants will be trained how to create and maintain blogs, use the Internet, and upload videos. Eventually they will create one collaborative blog, which the organization hopes will help dismantle the stigma that people with mental health issues face in Romania, as well as create awareness of their issues.

Tanasan presented the Blogging the Dream project at the Soros Foundation conference in November. She also attended other sessions such as “Using social media tools for successful nonprofit campaigns,” “NGO web 2.0 practical guide,” and “Integrated communication strategies for NGOs.” Tanasan reflects on her experience at the conference and talks about how she can apply her new knowledge to put this Rising Voices project into focus:

My participation in the Soros Foundation conference was a great opportunity to learn and conduct an exchange of experience about using new media tools.

I was enriched with knowledge about creating and maintaining a blog. I came back with new ideas about implementing our project ‘Blogging the Dream.' The questions we have to ask ourselves in order to make a known, focused and useful blog are: ‘what is the blog's main purpose?,' ‘why is the audience possibly interested in its purpose?,' ‘what do people like the most when they go to a web site: to read, to look at pictures/videos, to download pictures/images/information?,' ‘what strategy should we adopt in order to reach a larger audience so that to achieve our purpose?” and the range of questions can go on.

Tanasan also found that the conference was a great opportunity to spread the word about the Blogging the Dream project to others working in the field, as well as to make people aware of the Orizonturi Foundation and their work. The positive feedback was a great motivator. From the project's blog:

It’s exciting to see others interested in our project efforts, not to mention receiving encouragement and feedback. Furthermore, Gabriela brought back a lot of information on additional blogging tools that we are excited to implement during our Practicum Period.

The technical training part of the Blogging the Dream project has been completed, where participants learned how to blog, use digital cameras, and upload pictures. The participants are now slowly getting their blogs up and running. The next phase of the project is the practicum period. During this time the blogging club members will meet weekly and have to complete projects to show what they've learned so far. They will also use this time to further develop and become comfortable with their blogs. Tanasan says she will apply what she learned during the Soros Foundation conference during this phase of the project:

The participants in the ‘Blogging the Dream' project will start the practicum period by 15th of January 2009. We will pay attention to all mentioned aspects in creating the individual blogs and then the common blog. The blog must be conceived as a ‘communication ecosystem,' where the information comes together and from where they leave. The practicum period gives me the chance to put into practice these ideas.

AZUR Development trained communication officers and leaders of local HIV and AIDS organizations at its head office in Brazzaville, Congo, this past summer on advanced Internet usage and how to create digital stories. Specifically, the participants were taught the basics of blogging and how to use Flickr to publish photos. They also learned how to use Windows Movie Maker. Roméo Mbengou, AZUR Development's Information Coordinator, elaborates on this training session.

To enable these organizations to document their activities, digital cameras were awarded to the participants. They did not hide their satisfaction. According to Jean Pierre Mahoungou of the association Bomoyi, ‘This training allows us to better document our experiences in the fight against AIDS now that we now have cameras to take pictures.'

This training will lead to the production of articles, reports or stories by digital communication officers.

Internet training session

The trained communication officers and members of AZUR Development have started posting a wide range of stories on their observations and experiences with HIV/AIDS in Congo. For example, Mbengou interviews Parfait Bitsindou, a psychologist at the Center for Ambulatory Treatment in Brazzaville, about issues related to psychological support for people living with HIV/AIDS (PLWHA). Another post describes a community dinner organized by a women's organization to help curb malnutrition among those with HIV/AIDS. A nutritionist was on hand to provide advice on how to eat healthy at home. The dinner brought together more than 45 people living with HIV/AIDS.

Cooking at a community dinner for those with HIV/AIDS

Sylvie Niombo, leader of this Rising Voices project, posts a story about discriminatory remarks made by the morgue director and town councillor in Pointe-Noire, Congo. She says:

On 3 September the morgue director and town councillor publicly insulted people living with HIV/AIDS who were going to Adolphe Cissé hospital to support friends who were in a more critical state of illness as well as PLWHA had come for the food distribution programme. It would seem that the reason behind this is that a taxi had parked badly and held up traffic for a few minutes and thus prevented him from passing. The despicable abuse is said to have been hurled towards those living with HIV, even going so far as calling them the living dead who would become ice cubes in the morgue in the near future.

In response, people living with the virus and associations fighting against AIDS met with the town’s mayor to criticize this public abuse and request the municipality's support to sensitize authorities and organizations on the rights of those living with HIV.

Davy Herman Malanda posts another account of discrimination, sharing the story of Bernadette (a pseudonym), a young woman who is a second-hand clothing vendor at the Tié-Tié market in Pointe-Noire. She is the breadwinner of the family, but this changes when she discovers she's HIV positive. A friend she confides in divulges Bernadette's HIV status, breaking her trust and changing her life:

Her colleagues and clients from the market are informed that she is HIV-positive. Very few clients come from now on to buy at Bernadette’s table. Her life becomes difficult, and she has difficulty in making ends meet. At the market, her neighbors immediately desert their tables; which even attract the attention of those responsible for managing the market, who, conscious of the fact that having a table at the market is a difficult thing, are surprised to find empty tables around her. The situation has put everyone on alert, and those passing from far away can hear the neighbor’s gossip on the fact that she is a woman infected with HIV. However there are no outward signs that Bernadette is sick, one cannot read it on her face. The illness is not at an advanced stage and she is not on ARV [Antiretroviral] treatment. She is simply a normal young woman.

In a setback, traumatized by the situation, she stops her little shop.

In another post Aurelie, who lives in Brazzaville, shares her story, one that is filled with hope. She talks about how she was diagnosed with HIV, the news hitting her “like a ton of bricks ” and filling her with despair. But Aurelie goes on to describe the support she received from her family and an HIV/AIDS organization.

One day, I went to the hospital to get treatment, and I met a woman from the Positive Women Association of Congo (AFPC). She explained to me what she did and invited me to take part in an open group discussion. At first, I didn’t think it was for me, but the day I went to the discussion, I quickly fit in. I was delighted by the prevailing atmosphere, my morale was reinforced, and no more worries. I had friends, thus a new sun appeared in my life. I was simply myself and not shut in a room to mope…

…The support of my family and the support I found at the AFPC really changed my life. I realize that we’re not alone. I’m a woman, and I lead a normal life like everyone. That’s my story.

The organization is now taking things a step further, by documenting the stigma and discrimination faced by people infected and affected by HIV/AIDS in Congo. They are training communication officers and leaders of local HIV and AIDS organizations, members of their AIDS Network Africa initiative, in digital story telling (including video and photography), podcasting, and blogging. Each communication officer will then use this technology to share stories of how HIV/AIDS is affecting the local community where he or she works. This project is one of the six new health-focused citizen media outreach projects that were announced in June by Rising Voices and Open Society Institute’s Health Media Initiative.

It is hoped that these documented stories will be used as a tool for advocacy and education, helping to promote the rights of HIV-positive people. Currently 79,000 people are living with HIV in Congo, and 6,400 people in the country died of AIDS last year. Sylvie Niombo, the project's leader, says that these people are constantly subjected to discrimination and stigma, adding:

People living with HIV/AIDS have some of their rights harmed because of their serological status and receive very little assistance in defending them…This project allows us to document the stigmatization and discrimination of people living with HIV, in particular women infected by HIV in Congo, in their own words and those of the organizations of which they are members.

AZUR Development's main office is located in Brazzaville, the capital and largest city in Congo. The city rests on the west side of the Congo River across from Kinshasa, the capital city of neighboring country the Democratic Republic of the Congo. This video shows some images of Brazzaville.

Though the organization is based in Brazzaville, it works to provide leadership in the socio-cultural and economic development of all of Congo and Africa. Their projects range from providing leadership skills to young women to using information and communication technologies for development to work focused on HIV/AIDS. Technology has played a big role in their work. They started blogging in 2006, writing about the organization's activities in Congo, and then launched a blog on the rights of native people (Pygmy groups) in Congo. They also coordinate an initiative called AIDS Network Africa, for which they have a blog that recounts stories, testimonies, and activities on HIV/AIDS and malaria from the network's members, and have conducted workshops on the use of computers and the Internet. These photos show some of their projects.

For this particular project, the organization has conducted two workshops in Brazzaville and Pointe-Noire, training 15 communication officers and leaders of HIV and AIDS organizations on how to create blogs and multimedia stories. Some of these organizations were also given digital cameras. Through their blogs and digital stories, these trained communication officers and organization leaders will share stories about the daily lives of people living with HIV/AIDS, the challenges they confront, and the stigmatization and discrimination they face. Niombo elaborates:

People living with HIV/AIDS are laid off because of their illness, sometimes without accompanying measures; very few employers agree to give responsibility to HIV positive employees; they are dispossessed of their property by their families especially when they are in the final stages of the illness; they do not have access to quality care and to antiretroviral treatment in rural areas; and very few of the people living with HIV/AIDS know what their rights are and how they can contribute to safeguarding and defending them. In particular, women infected with HIV are the most vulnerable. They are accused of having brought the illness into the family and are abandoned or chased from their homes.

Niombo says that most of the Brazzaville and Pointe-Noire workshop participants discovered blogs for the first time. In addition to documenting stories, they are also using blogging to publish information about their organizations, since most don't have Web sites. However, she adds that Internet access is usually only available in Internet cafés. Since these cafés cost at least $1 US an hour, the communication officers are only able to go once or twice a week. Still, she says, the participants are grateful:

The organizations welcomed this action [the workshops] of AZUR Development, because they told us that they always asked their local partners to strengthen their capabilities in the efficient use of the Internet to no avail. This project thus responded to a real need in the field to make use of technology to advance the rights of people living with HIV.

AZUR Development has finished the initial training, and has began publishing the communication officers' articles on the project’s blog in French and English. The next step is to buy audio equipment, so they can begin podcast training.

Interview with Sylvie Niombo translated from French by Sabriya Fisher.

Now Hospice Casa Sperantei is taking their work one step further by capturing and preserving their patients' stories. The organization will be training its nurses, doctors, and staff in the upcoming months to use audio recording and photography equipment to collect their patients' stories and post them online. They will also be using online media to explain the objectives, successes, and challenges of palliative care, a type of treatment that focuses on relieving suffering and improving end-of-life care for patients and their families. This project is one of the six new health-focused citizen media outreach projects that were announced in June by Rising Voices and Open Society Institute’s Health Media Initiative.

Malina Dumitrescu, the project's leader, says they hope these stories will help people in similar situations, as well as the patients themselves. She elaborates:

By preserving testimonials of people affected by such diseases we would like to give value to their lives, experiences and feelings, showing them that they matter till the last minute of their lives. Our project will also help our own staff, strengthen their own motivation in the hard work of caring for incurable patients.

Hospice Casa Sperantei was founded in Brasov in 1992. Brasov, the seventh largest city in Romania, is one of the most visited places in the country, perhaps because of its central location. The city lies in the region of Transylvania, surrounded by mountains and at the foot of the Carpathian Mountains. This video shows images of Brasov. In 2004 Hospice Casa Sperantei extended their services, which include home care, inpatient units, an outpatient clinic, day centers, and hospital teams, to Bucharest, the country's capital. Over 7,000 children and adults in Brasov, Bucharest, and the surrounding areas have received Hospice Casa Sperantei's services since their founding. Dumitrescu elaborates on the kind of work they do:

The goal of palliative care is to improve the quality of life of patients, even when the disease has no cure. Palliative care focuses on pain and symptom control, also providing psycho-emotional, social and spiritual support to patients and families.

The organization also runs an education center in Brasov and a resource center in Bucharest, where over 9,000 specialists (such as doctors, nurses, volunteers, and social workers) have been trained. Earlier this year Hospice Casa Sperantei also signed a partnership agreement with the Ministry of Public Health to help develop a national plan for palliative care. Still, Dumitrescu says that palliative care is not yet widely available in Romania and that people suffering from cancer and other life-limiting diseases are neglected and often disregarded by public health services.

Patients are sent home and the family becomes the sole responsible for their care in the terminal stages of the disease. There are very few services provided in Romania for these patients (less than five percent of the actual needs are covered, mostly by non-governmental charities). We have patients of all ages suffering from cancer, as well as children with leukemia, congenital diseases, degenerative motor-neuron diseases and other life-limiting conditions…Most patients referred to the hospice are not aware of their diagnosis, as specialists fear to tell patients the truth about the disease. When they find out about the poor prognosis, patients need psycho-emotional support and good medical and nursing care.

Hospice Casa Sperantei is hoping this new project will help raise awareness of the benefits of palliative care. As part of the project, they will train doctors, nurses, and other staff to use audio recording equipment and also teach them interviewing skills. The staff will then record patients' stories in their homes, the day centers, and in-patients units. They will also interview family members and possibly staff working in palliative care. These stories will be posted online, along with photos if the patient agrees, and will also be featured in a monthly newsletter, as well as in press releases.

Project members are currently purchasing audio recording equipment, and nurses and doctors are in the process of identifying patients to participate. Though the organization has never used citizen media before, Dumitrescu says it is a terrific tool to bring attention to palliative care issues, which will hopefully increase the availability of this type of treatment in Romania.

Citizen media is a great opportunity to help our patients voice their feelings and experiences. Very few of them have the knowledge and the appropriate, modern technical equipment to do this. With this project we will help them share positive experiences or worries, thus supporting and helping each other in learning to live with the disease. Testimonials from patients and their experience in receiving specialized palliative care will also be used for advocacy purposes, in persuading health authorities to introduce and develop palliative care services as part of the national public health system.