Managing Life with Chronic Urine Leakage and Stigma: What Do Women in Ghana Think About an Innovation to Support Coping?

$3,632
Pledged
85%
Funded
$4,300
Goal
2
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  • $3,632
    pledged
  • 85%
    funded
  • 2
    days left

About This Project

Women with obstetric fistula experience chronic leaking urine, leading to stigma, isolation, and loss of income. (Wall, 2006) Repair is possible, but only 2% of the two million affected women ever access surgery, and 50-100,000 new cases occur each year. (UN, 2014) Women and girls are in dire need of a new solution to manage their injury. For this project, we will interview Ghanaian women with fistula to study stigma, coping, and acceptability of a non-surgical method for fistula management.

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What is the context of this research?

Obstetric fistula results when a woman’s labor is prolonged and buildup of pressure leads to the formation of a hole between the bladder and vagina. This hole, or fistula, causes the woman to experience chronic urine leakage, which may lead to stigma and reduced opportunities for employment and community participation. Once common in the US, this problem dissipated as women received timely access to emergency care like c-section. (Wall, 2006) In developing countries, fistula persists but only 2% of the two million affected women and girls will access surgery in their lifetime. (Adler, 2013; UN, 2014) While waiting for repair, those affected need an accessible, acceptable, and low-cost solution to manage their leaking urine and improve their quality of life.

What is the significance of this project?

There are too few rigorous qualitative studies on fistula and no qualitative studies on acceptability to non-surgical management. This research will explore how women with fistula in Ghana are currently coping with their leaking and vulnerability to stigma and examine their acceptability of an insertable silicone cup to manage leaking urine and support coping. The knowledge generated from this project will inform future research, including modifications to the design of the cup itself and the accompanying counseling message. Ultimately, this coping innovation could improve the quality of women’s lives, allowing them to manage their chronic illness so they can return to the market, to school, to their families, and to other social groups


What are the goals of the project?

There are 3 goals for the research this summer in Ghana: to examine vulnerability to stigma, strategies for coping, and acceptability of a coping innovation. I will engage 32 women with current or repaired fistula in semi-structured interviews to talk about coping and stigma. Then I will invite those who are interested/eligible to briefly trial the cup and will interview them on their acceptability. This work uses a multi-phase mixed methods design to inform ongoing research of the effectiveness of the coping innovation: quantitative questions focus on measurement (ex: severity of stigma), qualitative questions focus on experience (ex: what was it like coping with stigma), and findings are integrated to gain a holistic understanding of the interview topics.

Budget

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This dissertation is the mostly qualitative arm of a larger project on an insertable device to manage leaking urine due to fistula and improve quality of life among women who cannot access surgery (Restore Health website). Your funding is critical to the success of this larger project: this qualitative arm expands on findings from a small pilot study in Ghana and will inform a larger effectiveness trial. I will interview 32 Ghanaian women with current or repaired fistula-- this requires flights, accommodation, and transportation in-country. Women may be isolated in rural areas and we will need to travel 4-6 hours by bus to reach them. Importantly, your funding will support research assistants to recruit women and interpret in local dialects. We will pay women for their time.

  • Your donation supports:
  • $25= Transportation/reimbursement for an interview
  • $50= Transcription and translation of an interview
  • $100= Research assistant for a week

Endorsed by

I am a women's health care provider -midwife with global experience. The work proposed by Nessa addresses a critical issue that impacts the most vulnerable of women. Fistula can have a drastic and tragic impact not only on womens physical health, but also their mental and social health. We need more research on what the lived experience of these womens lives is critical to shaping a culturally respectful approach to care and care options for women.
Access to an affordable, culturally informed non-surgical option to manage fistula is a critical public health equity issue. Innovative solutions like re-purposing the VVF cup provide long-term sustainable alternatives to surgical options. This project is likely to be successful due to the collaborative nature and rigorous mixed methods design. Results will illuminate women's needs and how this innovation will fit within this context.

Flag iconProject Timeline

2018

May-Aug: 32 interviews carried out in Ghana

July-Sept: Qualitative analysis

Sept-Oct: Quantitative analysis and integrating with qualitative analysis

Oct-Dec: Writing up results

2019

Jan-Feb: Presenting findings

Starting larger effectiveness trial of the innovation

May 23, 2018

Project Launched

Aug 31, 2018

32 Interviews with women completed

Oct 31, 2018

Analysis of data completed

Feb 28, 2019

Results written up and presented

Meet the Team

Nessa E. Ryan
Nessa E. Ryan

Team Bio

This research is part of a collaboration between NYU and Korle Bu Teaching Hospital in Accra, Ghana. This team has been researching an insertable cup for short-term management of urinary leakage due to fistula since 2015. The team consists of Dr. Gabriel Y. K. Ganyaglo, a member of the Ghana National Fistula Task Force, Rose Mantey, MPH a community health nurse with years experience caring for fistula patients, and Obstetrician/Gynecologist and cup inventor Dr. Joonhee Park.

Nessa E. Ryan

I grew up in Ireland and moved to North Carolina in the southern US at a young age. I studied studio art and biology as an undergraduate at Hollins University in Roanoke, Va then studied global health for a Masters in Public Health at Emory University in Atlanta, Ga. Wanting to learn more about comparative effectiveness research, I pursued a Masters of Science in Clinical Investigation at New York University School of Medicine.

I have always been interested in issues related to women's health-- particularly in understanding and addressing the barriers to healthcare experienced by women and girls in low-resource settings. I am currently a doctoral candidate and translational research fellow at New York University, where I focus on global health and mixed methods translational research--particularly in West and East Africa where I have lived and worked. I am interested in understanding how culture shapes experience with and provides meaning to stigmatizing health conditions, like obstetric fistula, which should inform public health implementation strategies to address these conditions.

Additional Information

The planned innovation is similar to the menstrual cup, which has been shown to be effective for menstrual hygiene management (MHM). (North and Oldham, 2011) Menstrual cups for MHM have been shown to be acceptable in some fistula-endemic settings, when users are provided the opportunity to practice use and ask questions. (Beksinska et al., 2015; Juma et al, 2017) Previous studies on insertable devices for global women's health highlight the importance of understanding acceptability prior to implementing large scale clinical trials. (Tolley, Morrow, & Owen, 2013) This acceptability must be qualitatively explored in order to truly prioritize the attitudes and beliefs of women living with fistula, which could impact any potentially positive effect of use.


Project Backers

  • 45Backers
  • 85%Funded
  • $3,632Total Donations
  • $80.71Average Donation
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