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Guest Blog - Occupational Therapy and Obstetric Fistula

January 14, 2014

African Flowers

Guest Blog by Dr. Cambey Mikush

I am Cambey Mikush, a recent graduate from Washington University in St. Louis with a doctorate in Occupational Therapy. I became aware of the devastation that is inflicted on women with obstetric fistula right before starting my graduate program in 2010. The more I learned, the more it became clear to me that women with obstetric fistula were experiencing a sudden and significant change in their ability to participate in their daily activities. Women who develop obstetric fistula not only have surgical needs but also commonly experience weakness in their legs and pelvic muscle due to the compression of nerves and vasculature during the arrested birth. Initially, my knowledge of the issue was limited to what I had read in the media and a couple scientific journal articles where the role of rehabilitation was often not discussed in depth. As I dug deeper, I learned that physical therapy plays a very important role in the rehabilitation of these women and has been incorporated into fistula hospitals like the Hamlin Fistula Hospital in Ethiopia and the Danja Fistula Center in Niger. However, occupational therapy is formally non-existent in these fistula care models. I felt that occupational therapy could serve a significant role in helping these women return to their homes and live independently, no matter the surgical outcome.

The word occupation encompasses everything a person does on a daily basis that is necessary and important to them such as bathing, dressing, cooking, working or attending community events. Occupational therapists work with people with both physical and mental disabilities, using valued occupations to help restore roles, meaning and identity to people’s lives after an injury or illness. Because of occupational therapy’s unique perspective on daily functioning, I felt it to be a critical component in helping women with obstetric fistula return successfully to their communities.

As a part of my doctoral degree, I wanted to begin defining the role of occupational therapy in helping women with obstetric fistula. In 2011, I enthusiastically shared my ideas with Dr. Tracy Spitznagle, a women’s health physical therapist working at Washington University in St Louis, and Dr. Lewis Wall, a urogynecologist and the founder of the Worldwide Fistula Fund (WFF). They immediately welcomed me to the team and have been strong mentors ever since. Through the WFF and grant support from the Gephardt Institute, I have had the opportunity to travel to the Hamlin Fistula Hospital in Addis Ababa, Ethiopia to assess its programs and provide suggestions on how to improve the rehabilitation services from an occupational therapy perspective. Through this experience, I have gained a better understanding of the functional challenges women with obstetric fistula face pre- and post-surgery. Collaborating with the staff at the Hamlin Fistula Hospital we have begun to identify ways to address these challenges. Although I still have a lot to learn, it is clear to me that occupational rehabilitation is a critical component of the fistula care model.

One way we are identifying these functional challenges is by conducting focus groups with women before they receive treatment. The information gathered will be used to help us develop a comprehensive quality of life outcome measure demonstrating the functional improvements of women from baseline to discharge, and for months after treatment. This outcome measure will provide guidance for understanding the level of function needed to return to daily activities in the community after treatment. The measure will also identify potential gaps in services at the hospital. Although the project is in its beginning phase, we have assembled an experienced team of Hamlin Fistula Hospital staff including the Beletshachew Tadesse (Rehabilitation Manager), Hanna Hansemo (Social Worker) and Karen Ballard (Research Coordinator), among others. Two focus groups have been completed and we are already obtaining useful and interesting information to help guide future rehabilitation programs and the development of the outcome measure.

Although we still have focus groups to conduct and data to collect, I am amazed at how each woman’s story is different from the next. Many often over-generalize the experiences of women with obstetric fistula, but these focus groups have reminded me that no two women are the same. One woman we spoke to has lived with obstetric fistula for 20 years. She sobbed as she told us about the impact the injury has had on her ability to walk, work, eat and be a productive member of her community. However, another young woman in the same focus group has lived with fistula for one month, spending most of that time in a general hospital before being transferred to the Hamlin Fistula Hospital. Although developing a fistula was traumatizing for her, she was encouraged to seek medical care early on and therefore has not noticed any drastic changes regarding her relationship with family and friends and her ability to participate in daily activities. It is critical that a healthcare team understand each woman’s unique story to be able to fully address her individual challenges and capitalize on the resources, both social and economic, available to her.

Despite the different experiences these women have had with fistula, some common themes are beginning to emerge from the focus groups. The first focus group consisted of three women, all stating multiple times that, after fistula treatment, they want to be healthy and able to work. The ability to work provides every person with a sense of purpose and a means to support a family. Work can also be a social outlet, allowing an individual to be an active member of a community. Constantly leaking urine or feces or dealing with prolapsed organs can impede a woman’s ability to work. Post surgically, some women with obstetric fistula may need to learn how to compensate for their loss of function and find ways to work, despite leaking urine. Other women may be unable to maintain their work responsibilities due to an inability to carry heavy loads or an altered gait caused by foot drop or muscle contractures, common comorbidities associated with obstetric fistula. At the Hamlin Fistula Hospital, the physical therapists work with women with foot drop, contractures and deconditioning to improve strength and mobility, prior to surgery in an effort to help women return to work after they have received their repairs. In addition, the physical therapists also work on improving pelvic floor function in patients not fully cured by the surgery to decrease urinary or bowel incontinence and allow them to return to their community. Another integral part of the rehabilitation process at the Hamlin Fistula Hospital includes a team of community re-integration specialists. This specialized rehabilitation team teaches women income-generating skills to help provide them with financial support upon returning to their villages. Thus far, the women participating in the focus groups are reiterating the importance of concentrating a portion of rehabilitation on addressing the skills needed to be able to work independently.

Although the Hamlin Fistula Hospital does not have an occupational therapist on staff (there are currently no occupational therapy schools in Ethiopia), they are incorporating many occupational therapy principles that are critical to ensuring that women return home as independent as possible. As a member of the WFF Rehabilitation Advisory Counsel, I will continue working with the other counsel members to identify ways to improve rehabilitative services at the Hamlin Fistula Hospital and other fistula care centers to ensure that women are able to return home successfully, no matter the surgical outcome. Our ongoing research project with the staff at the Hamlin Fistula Hospital will continue to tell us what these women need and want to help them return to their villages and live fulfilling lives.