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Fistula Can Be Fabulous

After being healed of obstetric fistula, women receive livelihood training to enable them to battle stigma and provide for their families.

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What problem does your idea solve?

Obstetric fistula is a debilitating injury caused by obstructed labor, resulting in a hole (fistula) and persistent incontinence. Fistula can cause chronic infection and isolation from society. In Uganda, many efforts have been made in recent years to improve access and quality of treatment and facilities, and some focus on prevention education. The Ministry of Health encourages rehabilitation activities, but few efforts have been implemented, so establishing best practices is difficult.

Explain your idea

UNFPA identified three areas to end fistula: prevention, treatment, and rehabilitation. Even when healed, women remain vulnerable because of stigma and lack of economic opportunities. To address this, UVP provides a holistic rehabilitation program, including a safe place to heal, skill-based education, and business training. UVP provides a place away from home that allows women to focus on healing and learning without the distractions of their domestic lives and meet regularly with staff to discuss challenges. This provides a platform for healing, both physical and mental. Each cohort determines the skill-based training they wish to learn, using their expertise of their specific environments to decide what skills will be most useful at home. Instructors and materials are provided to allow women to practice their new skills. Business training covers skills like product costing and market analysis to ensure their businesses can survive. Topics are presented in a way that someone with no educational background can learn. Additional program expansions include regular follow up visits and formal business education to create a community where women can constantly learn from one another. These components provide marketable skills to facilitate reintegration at home and increase confidence by allowing them to once again be productive community members. Curing fistula for a woman can be life changing, but only if she has the support needed to thrive, not just survive.

Who benefits?

Everyone! But mostly women ages 18 - 60 years and their families. We work in Eastern Uganda, where most women live in extremely rural areas and access to general health care is very limited. These women most often come from subsistence farming households. On average, UVP’s patients have lived with fistula for 11 years before accessing treatment, mostly because they don't realize the condition is treatable and because they don't have the funds to pay for surgery.

How is your idea unique?

Participants are typically sustenance farmers, making home life a difficult place to heal after surgery. As the only organization working to provide fistula treatment in southeastern Uganda, a catchment area of approximately 4,000 square mile, UVP would be closing the gap in services for fistula patients. Other organizations treating fistula in Uganda do not include a comprehensive reintegration program. The only other organization focused on reintegration at the same level of UVP implements a model that provides services on an outpatient basis, requiring women travel to a central location to partake in activities. Our approach alleviates many of the cost prohibitive activities associated with that model, such as travel. The Ministry of Health suggests reintegration activities happen in a patient’s home area. UVP’s approach can provide a case study on a different model to compare with current efforts, potentially leading to policy changes.

Tell us more about you

Uganda Village Project (UVP) is a non-profit organization focused on improving health outcomes in rural Uganda through community-based, locally-focused interventions. We have a US-based board but our office and programs are all in Uganda, allowing us to collaborate with many on-the-ground partners. For our fistula program, we have 2 dedicated staff members, both former UVP fistula patients. UVP has more than a decade of experience working with obstetric fistula in Eastern Uganda.

What are some of your unanswered questions about the idea?

How can we turn the items made by the women during the program into a business to keep patients employed longer-term? If we establish a "business" side of the program, how can we work to ensure the activities are sustainable financially to avoid needing additional funding for the program and still allow for expansion? What type of outcomes of the program would we need to measure in order to prove this approach is more impactful or effective than other programs implemented?

Where will your idea be implemented?

  • Uganda

Experience in Implementation Country(ies)

  • Yes, for more than one year.

Expertise in Sector

  • I've worked in a sector related to my idea for more than a year.

Organizational Status

  • We are a registered non-profit, charity, NGO, or community-based organization.

Idea Maturity

  • Piloting: I have started to implement my solution as a whole with a first set of real users.

How has your idea changed based on feedback?

As a result of feedback from multiple stakeholders, we closely examined why we chose to host women away from their homes. From their answers, we can confidently move forward with our model, knowing it is serving our beneficiaries in the intended way. Based on discussions with former participants, patients, and staff, we added mechanisms for longer term support: programming that follows up with individual participants and ongoing education for participants to ensure continued learning. The process has also allowed us to dream a little bigger. With limited resources, we generally focus on our catchment area, but the human-centered design had us thinking about the larger opportunity to serve women across Uganda in coordination with other organizations, ideally in a standardized way.

Who will implement this idea?

If we expand the program to accept more participants and partnered with other organizations to conduct multiple programs at one time, UVP would need two full-time people dedicated to coordinating up to 4 different sites across Uganda. The sites will be situated to be near common fistula camp locations in both eastern and western Uganda. The Managing Director will also be supporting this program part-time by providing financial oversight.

Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?

Smaller programmatic changes can be implemented without prior notice to the Executive Board. These small decisions will be discussed with the Executive Director to ensure the shift does not breach the scope of the project or exceed financial resources. Larger foundational shifts will be presented and discussed in a monthly Board meeting and voted on by eligible members. In addition to continuing to utilize the human-centered design approach, we will create M&E logic framework in order to measure our impact and guide future programmatic shifts.

What is it that most attracted you to Amplify instead of a more traditional funding model?

UVP measures the impact of our various programs utilizing both quantitative and qualitative M&E tools. The Amplify approach using human-centered design is the best way for us to expand our tools used to refine and create new iterations of programming. We respect and appreciate the insight that these exercises provide to ensure we are reaching our intended beneficiaries in a way that is most impactful.

What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?

Our participants face great economic challenges upon returning home; inflation can increase food costs; as subsistence farmers, environmental issues like drought can cause food instability and shortage; women may return from surgery still incontinent, making it difficult to hold a consistent job, if she were to find one. Also, there are lingering effects from surgery that can require multiple visits to the health center in the 12–24 months after surgery that requires money for transport and medication. Additionally, if she runs her own business, it can be difficult for her to be there consistently if she is frequently visiting the health center, thus affecting her clientele. If her husband has abandoned her, she is then supporting children with minimal income.

Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?

IMPACT: Establish reintegration programs associated with every fistula surgery camp at the 6 locations nationwide, being able to accept any willing woman to participate in the program, by 2023. QUESTION: How can we encourage autonomy of this program among multiple providers while ensuring consistent and sustainable program delivery and continuous program improvement, and provide the service to every willing woman treated for fistula in order to decrease the prevalence of fistula in Uganda?

How long have you and your colleagues been working on this idea together?

  • Between 6 months and 1 year

How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?

  • Under 5 paid, full-time staff

Is your organization registered in the country you intend to implement your idea in?

  • We are registered in all countries where we plan to implement.

My organization's operational budget for 2016 was:

  • Between $100,000 and $500,000 USD

If your team/idea/organization has a website, please share the URL below.

www.UgandaVillageProject.org

Attachments (1)

Fistula Can Be Fabulous - User Experience Map.pdf

See an overview of how our participants move through our program.

5 comments

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Team

Hi Kelly and Team,

We’re excited to share with you feedback and questions from the Amplify team and an external set of experts. We encourage you to think about this feedback as you continue to improve and refine your idea. You are welcome to respond in the comments section and/or to incorporate feedback into the text of your idea. Your idea and all associated comments will all be reviewed during the final review process.

-Whilst there are other organisations working on helping women with obstetric fistula, the focus on providing livelihood skills explicitly for this set of women, alongside ensuring the treatment is fully successful, is exciting.
-There are multiple benefits of implementing this programme, which are certainly desirable, including women who are less likely to suffer another obstetric fistula, as well as developing new skill sets to improve their livelihood on return to the community.
-This idea has certainly been designed with targeted users in mind, and explored and developed in detail by enhancing previous programmes.
-I am in favour of the idea of providing a safe space for, and specific skills and livelihood training to this particular set of women. The programme has clearly been carefully considered, and builds upon an existing design.
-We’d love to learn more about whether the removal of the women from their communities for an extended period of time is beneficial? How have you considered the re-integration of these women into their families/communities?
-Have you considered other methods of disseminating these services (through building the capacity of community clinics?), or establishing more spaces for these women to group together (as opposed to leaving home)? It may be beneficial for the rest of the community to see how these women can be treated alongside leading more normal lives.
-How will the stigma attached to having obstetric fistula will be completely removed? The inclusion of a health education programme, run by community clinics and community health workers, amongst these communities may be beneficial.

In case you missed it, check out this Storytelling Toolkit for inspiration for crafting strong and compelling stories: http://ideo.to/DXld5g Storytelling is an incredibly useful tool to articulate an idea and make it come to life for those reading it. Don’t forget - June 4 at 11:59PM PST is your last day to make changes to your idea on the OpenIDEO platform.

Have questions? Email us at amplify@ideo.org

Looking forward to reading more!

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Team

Hello!

Thank you for your thoughtful and thorough feedback - we appreciate it! Your questions have spurred many lively discussions and brainstorming sessions where we've learned quite a bit. Below are some answers for you:

-Feedback from participants from the pilot program and other former fistula patients all strongly lean toward having the program away from home. When a woman is close to home, her attention can easily be diverted from learning and healing. Because of feedback from those close to the program, we think it is best to continue with the model for now and continue to evaluate as we implement a more robust program. Additionally, while in the reintegration program, women have regular conversations with our fistula coordinators surrounding what to expect upon their return to the village and planning for their startup business.

-Through another facet of our fistula programming, we engage former fistula patients to conduct educational outreaches about fistula (UVP Fistula Ambassadors). They aim to conduct three outreaches in communities and meet with their local health center staff twice per year. Also, fistula patients are not generally within close proximity to one another, so having hubs of women is a challenge; the cost of transport can be a deterrent for participation. We tried to incorporate more locations in our idea's newest iteration, so we tried to apply this suggestion in a way that could work contextually.

-Many community members in rural places feel that fistula is a death sentence. Upon return to their communities, women tend to become ambassadors (either formal through the UVP program, or informal) and talk about the treatment and how to prevent fistula. When a women returns from surgery, whether successful or not, providing her with the confidence to talk about her experience in addition to having the ability to improve her economic condition is a powerful way to educate people about fistula and show that it is not a death sentence, but something that anyone's mother, sister, or daughter can experience and rise above.

Again, many thanks for your time reviewing our idea so we can better serve this disadvantaged community. We welcome additional comments or questions.

Warm regards,
Kelly and the UVP Team

Photo of Ashley Tillman
Team

Hi Kelly thanks for your thoughtful response!

Photo of Kelly
Team

Hi Virginia,

Thanks so much for your feedback! I've sent you a message via LinkedIn so we can connect more holistically.

Keep fighting the good fight,
Kelly

Photo of Virginia Williams
Team

Kelly, Great project! Fistula is such unnecessary suffering. I’m on the board of the Uganda Fistula Fund for Terrewode, where a hospital specifically for Fistula treatment and prevention will be built. Please contact me so I can put you in touch with the Executive Director. Peace, Virginia

Peace, Virginia