It was at the bedside of a dying relative that the idea for Daphne Kagume’s doctoral dissertation took hold. As her beloved uncle succumbed to AIDS in a Kenya hospital, the OSU graduate student witnessed the heartbreaking isolation that so often afflicts AIDS patients in her native country.
She resolved to help.
With guidance from Dale-Elizabeth Pehrsson, her Ph.D. committee chair in the College of Education, Kagume is designing a study using traditional African stories to enhance coping and quality of life among victims of HIV/AIDS. The study will be both a descriptive and statistical analysis of the impact of bibliotherapy — the use of books and stories for emotional healing — in Kenyan support groups. To ensure the cultural and psychological suitability of the books, Kagume will rate them with the Bibliotherapy Evaluation Tool developed by Pehrsson and McMillen. To get hard data about the effectiveness of bibliotherapy, she and Dana Doerksen, fellow Ph.D. candidate and co-researcher from Eugene, Oregon, will administer a pretest and a posttest using a Health-Related Quality of Life (HRQoL) scale for HIV/AIDS-affected patients. One such scale is the MOS-HIV (Medical Outcomes Study HIV Health Survey) developed by the Centers for Disease Control. A control group will also be used. Because quantitative data on the effectiveness of bibliotherapy — particularly the use of fiction — are scarce, Kagume and Doerksen’s research will add valuable findings to the field.
In-depth interviews will capture personal narratives about HIV and bibliotherapy. “The interviews will give voice to people experiencing HIV/AIDS,” says Doerksen. “For many researchers, self-reported data such as these are at least as important as statistical data.”
The daughter of school administrators, Kagume left Kenya’s lush, coffee-rich highlands for undergraduate study at the University of Nairobi. When she headed to OSU to earn a master’s in business administration, she barely knew where Oregon was. “I just heard that it doesn’t snow here,” she says ruefully, glancing out at the frozen remnants of the latest winter storm. But by the time she finished her MBA, she knew her heart would never be in balance sheets and bottom lines.
“I realized it was important to me to do something that adds value to people’s lives,” she explains.
Doerksen had her introduction to Africa when she spent a month in Tanzania as a staff member with World Vision, an international agency dedicated to empowering local communities with projects such as health clinics, water treatment, education for girls and micro-loans for women. “It was right after 9/11,” she says. “I grew more during the three or four weeks I spent there than at any other time in my life.”
Because of the stigma of HIV/AIDS in Kenya, patients typically wait too long to seek medical help and then keep their diagnosis a secret from friends and family. “If you’re not talking about it,” Kagume says, “you’re probably not taking your meds and you’re definitely not getting any emotional support.”
In the summer of 2008, Kagume and Doerksen plan to travel to Kenya to collect data. They hope to get assistance from the Kenya Network of Women Living with HIV in identifying subjects for their study.
When her dissertation is done, Kagume intends to put her Ph.D. in counseling to work in a Kenyan community mental health agency. Local stories and books will, she says, play an important role in her professional practice. “When stories relate to what’s happening in clients’ lives,” she says, “they can improve their emotional functioning and live more fully as members of their community.”