I Still Got Joy - Anthropology News

Black Women?s Strength and Resilience after Breast Cancer

The African American spiritual song, ?I Still Got Joy,? sings of resilience in the face of challenges like breast cancer. Despite advancements in medical technology that have improved treatment and survivorship outcomes of cancer patients, African Americans still face a disproportionately high breast cancer mortality rate?almost 39% higher than that of white women, according to the American Cancer Society. The socioeconomic challenges associated with the lack of access to breast cancer care have been widely noted. Less understood however, are the psychosocial barriers that Black women face as they manage their breast cancer diagnosis and undergo treatment and seek out support. I led a study to help address this gap in our knowledge.

Players

Smith Center for Healing and the Arts supports individuals with cancer through an integrative wellness approach that emphasizes holistic healing modalities for the mind, body and spirit. Through grants from the Livestrong Foundation, Quality Health Foundation and Susan G Komen for the Cure, the organization launched a community based patient navigation program to address the particular challenges facing low income African American and African immigrant women in 2007. Patient navigation was created by Harold Freeman of Harlem Hospital to increase cancer treatment compliance rates among low-income patients of color. The Smith Center, building on this foundation, insisted that all community navigators be breast cancer survivors and added psychosocial supportive care and integrative cancer care modalities to its navigation initiative.

A frame from video footage of the dance workshop Moving Stories, Moving Bodies. The workshop was a three-part series where women wrote stories and poems, and then with the help of professional dancers, transformed their written pieces into dance. From left to right: Carole James, Michelle Chatman and Penny Callan. Carole and Penny were participants in the focus group project and are breast cancer survivors. Photo courtesy Raji Mandelkorn

In January 2009, Smith Center partnered with the Howard University Center for Urban Progress (CUP), a university-based, applied research and evaluation organization, and initiated a qualitative study to better understand the cultural barriers Black women faced in accessing breast cancer care and support.

Research Plan

We recruited a cohort of African American women including cancer survivors and used a culturally sensitive screening instrument to help us select participants for focus groups. We developed a simple question/probe instrument for the focus group leader. We tape recorded and transcribed the sessions. Two trained researchers evaluated the transcripts independently and then conferred to come to a consensus on themes. Follow up interviews and conversations were held with selected individuals. The screening data were combined with the qualitative findings to prepare an evaluative paper.

Research Process

We employed a grassroots recruitment strategy to ensure broad representation. A community outreach worker promoted the project at grocery stores, beauty salons, community centers and heavily frequented retail stores in low-income DC neighborhoods. We also coordinated with neighborhood clinics, social service agencies, and cancer navigation programs at area hospitals to obtain women for the study. A total of 32 Black women shared stories of their breast cancer journey in six focus groups, interviews, and informal conversations. Participants included retired government workers, single moms, college educated women, a non-profit executive, and other low-income women. Focus group sessions were held at community venues that were handicap accessible and also close to public transportation. All research instrumentation and promotional material about the study were approved by Howard University?s Institutional Review Board.

Findings

Findings indicated that women faced cultural, institutional and psychosocial barriers in seeking out treatments and support for breast cancer. Women identified how interactions with medical professionals, the impact of breast cancer upon their intimate partnerships, relationships with family and friends, as well as internal concerns like depression and fear of dying all affected how they used medical systems and their sources of support.

Another frame from video footage of the dance workshop Moving Stories, Moving Bodies. From left to right: Carole James, Michelle Chatman and Penny Callan. Photo courtesy Raji Mandelkorn

The stigma associated with breast cancer and their concerns about how they would be perceived professionally and socially made women extremely careful and selective about who they told about their diagnosis. One woman said she desired having someone who could ?be positive for them? and not view their condition fatalistically or drain their optimism for a full recovery. Women also spoke of how they had to challenge prevailing myths about breast health and breast cancer as they underwent treatment. A few women shared their reluctance to conducting breast self-examinations because they had been taught, as younger women, that touching themselves in that way was inappropriate. Women also spoke of previously held beliefs that only promiscuous women or busty women got breast cancer.

Another frame from video footage of the dance workshop Moving Stories, Moving Bodies. From left to right: Carole James, Penny Callan and Michelle Chatman. Photo courtesy Raji Mandelkorn

Perhaps the most startling finding was the high level of mistrust of the medical profession. Women told numerous accounts of insensitive encounters with doctors and other health professionals. One respondent, ?Shirley,? spoke of how a doctor, while performing an examination on her, never touched her skin directly but used a stethoscope and other medical instruments to touch her. This interaction left her feeling hurt and objectified. Seemingly, doctors tended to focus primarily on the physiological impact of an illness and became desensitized to the emotional and psychological needs of their patients. The African American women participants emphasized their need to feel respected and valued during their interactions with medical professionals. Women voiced how they had to address their own depression, self-devaluation, denial, and fear of death in order to pursue treatment. These were difficult fears to overcome. They could best be addressed by compassionate health professionals over the course of diagnosis, treatment and recovery.

The secrecy and silence surrounding breast cancer for African immigrant women was so acute that it impeded the data collection process. African women breast cancer survivors were extremely reluctant to participate in such a ?public? dialogue about their breast cancer experience. Members of the African Women?s Cancer Awareness Organization (AWCAA) shared their first-hand knowledge of women who had been ostracized from their families in their home country and within the immigrant community because they had breast cancer. Viewed as ?damaged goods? some women had been abandoned by their husbands and shunned by the community. Such attitudes toward breast cancer make it extremely difficult to serve this particular population. Community navigators working with the African immigrant community use creative outreach techniques to raise breast cancer awareness and administer services to women who are facing the disease.

Life after Breast Cancer

We asked women what resources they relied on to get through their treatment and recovery. Most women had the support of family, church members, and close friends whom they turned to for varied support during their treatment and recovery. But a few, like ?Jesse,? had already exhausted the minimal family support they had. She faced marital problems, a special needs child and eviction. Her breast cancer became yet another problem for which she had little time, money or energy to address. Women reported that some organizations also provided assistance such as specialty bras for breast cancer patients, wigs, house cleaning services, meal delivery, and financial assistance for bills and expenses.

We also asked women how they managed life now after treatment had concluded. They willingly shared how they were living joyously after breast cancer treatment, remaining involved in a range of activities, some offered through Smith Center, such as creative movement, arts, and yoga classes. Many women were active members of their church; others had been involved in a rowing club for survivors; one woman hosted an internet radio ministry, and another pursued international travel with vigor. Several women reported having adopted a more vegetarian-based diet and trying to life fully each day, enjoying newly adopted children and grandchildren, and other family members. Some were also still involved in breast cancer support groups, underscoring the need for continued support after the termination of treatment.

Throughout the study, several women eluded to a spiritual connection they relied upon for strength and guidance throughout the process. More than a particular religious doctrine, this ?inner knowing? guided women along their treatment journey, leading them to medical and social service providers, and encouraging them to be persistent when they sensed they weren?t getting the best care. Strengthening and validating such intuition could be a key element in shaping how programs encourage women to value, trust, and prioritize their health needs.

Follow-up to the Study

Several women said they had never spoken publicly about their breast cancer experience. Doing so, they asserted, was a healing experience for them. Some agreed to become involved in a short video project, sharing their breast cancer experiences with others. The Wisdom of Survivors?(see vimeo link towards the top of the page), is currently being used as a tool in Smith Center?s education and outreach efforts. Given breast cancer?s prevalence in the Black community, such culturally sensitive educational materials are essential. Also, in the fall of 2011, the research team presented the study findings and part I of the film The Wisdom of Survivors to a team of oncologists, nurses and other medical professionals at Howard University Hospital as part of a clinical lecture series, advancing a dialogue on designing navigation strategies to more fully address the needs of patients.

What I learned

As a native of Washington DC and a Black woman who has lost family members and close friends to breast cancer, I felt I had an insider?s advantage on studying this issue. Yet I soon learned how much I had underestimated how the dynamics of race, class and gender can complicate the cancer navigation process.

I now use the study and film as teaching tools in my introductory level anthropology courses to raise breast health and breast cancer awareness among my primarily Black, female student body. This research emphasizes the importance of understanding the lived experience of women facing breast cancer so that services can be designed to address the physiological and equally important, psychosocial hurdles women must overcome as they journey toward wellness. The study also serves to demonstrate anthropology?s relevance and usefulness in addressing critical issues that affect us globally, nationally, and locally.

Michelle Chatman is a visiting professor of anthropology and sociology at the University of the District of Columbia. She is a doctoral candidate in cultural anthropology at American University, and a research fellow at the Howard University Center for Urban Progress in Washington, DC. She may be contacted at mchatman@udc.edu.?

Source: http://www.anthropology-news.org/index.php/2012/03/01/i-still-got-joy/

oscar noms capital gains tim thomas oral roberts les paul detroit tigers fred thompson