Dr. DeMarco is Associate Professor, Boston College, William F. Connell School of Nursing, Chestnut Hill, Massachusetts.
Supported in part by funds from the Division of Nursing, Bureau of Health Professions, Health Resources and Services Administration, Department of Health and Human Services under grant number D09HP07456 and titled Advanced Practice Palliative Care Program for $728,303.00. The information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should be any endorsements be inferred by, the Division of Nursing, Bureau of Health Professions, Department of Health and Human Services, or the U.S. Government.
The author has no financial or proprietary interest in the materials presented herein.
The author thanks Anne Mahler, Mary Ann Breen, Jennifer Cocio-Thompson, Danielle Bergeron, and Sanghee Kim, who are students of NU643 at Boston College, and Drs. Pat Tabloski, Judi Vessey, Margie Laccetti, Mary Lou Siefert, Jane Flannigan, Katie Tardiff, and Mary Beth Crowley, who are the Boston College Palliative Care HRSA Grant Team.
Address correspondence to Rosanna F. DeMarco, PhD, PHCNS-BC, ACRN, FAAN, Associate Professor, Boston College, William F. Connell School of Nursing, 140 Commonwealth Avenue, 334H Cushing Hall, Chestnut Hill, MA 02467; e-mail: RDema10519@aol.com.
According to the World Health Organization (WHO) (2002), palliative care is a perspective of care that “improves the quality of life of patients and their families facing life-threatening illness through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems” (¶ 1). The WHO also supports quality improvement plans of care that include community level participation. Creating quality improvement plans for palliation purposes that involve the voices of the community consumers who are living with chronic illness would address relevancy and sensitivity to those in need.
Among women in the United States, Black women comprise 72% of all new cases of human immunodeficiency virus (HIV) (Centers for Disease Control and Prevention [CDC], 2003). Furthermore, Black women are 23 times more likely to be infected with acquired immune deficiency syndrome (AIDS) than White women (CDC, 2003). According to a recent report from the Black AIDS Institute (2009) approximately 600,000 Blacks in the United States are living with HIV or AIDS, and more than 20,000 Blacks contract HIV annually.
Creating ways to help advanced practice nursing students, who come from a variety of backgrounds and levels of experience, assess and develop palliative care quality improvement projects is challenging. For graduate students to become leaders in palliative care initiatives that serve all patients, they need to recognize and understand the impact of poverty and racism and the unique needs of those living with HIV. A graduate student assignment was created to help students listen to and interpret the unique needs of African American women living with HIV.
Harvesting Community-Based Data
The Women of Color AIDS Council/Women Connecting and Affecting Change (WCAC) was established in 1992 by a group of community women, five of whom were HIV-positive. The mission of the agency was and continues to be giving access to HIV-infected and HIV-affected women of color, who were isolated and disconnected from the health care service system, and link them to medical and mental health care and social services (WCAC, 2009).
Sistah Powah is a peer-led community-based evening group at WCAC and is a collaborative effort between Boston College’s School of Nursing and WCAC, Inc. The mission of WCAC, Inc., includes offering services from a social justice perspective and specifically committed to giving those individuals who are hard to reach in the community quality of care and opportunities for quality of life. Sistah Powah has been testing an HIV secondary prevention intervention research protocol to using a 6-week tailored approach directed to African American women living with HIV or AIDS (DeMarco, 2009).
The research component of the project was approved by the institutional review board at Boston College and WCAC. The project was a randomized control trial in which the intervention group completed a structured writing exercise in a group format and then shared the writing openly with the group after viewing film clips that addressed perceptions and risk behaviors that can affect symptom management and further transmission of HIV:
- Negative self-image, interpersonal mistrust, and disclosure fear related to perceived stigma.
- Self-silencing in sexual relationships.
- Poor adherence to treatment and other health promotion and disease prevention actions, including safe sex behaviors.
Per the intervention protocol, at the time of group sharing of the individual writing, the group’s conversation was digitally recorded with their consent for the purposes of research analyses. One particular cohort of women (n = 8) in 2008 gave their consent to use de-identified recordings of their conversations regarding health care needs and concerns as a way to help graduate students in palliative care to study and understand their unique perspectives. All of the women self-identified as African American and presented official documents validating their HIV status. The recordings were de-identified prior to making them available to students through a Web-based, university secured classroom organizing system called Blackboard Vista.
Palliative Care Quality Improvement Assignment
Five graduate students were enrolled in a course entitled The Advanced Practice Role in Palliative Care in a newly funded Health Resources and Services Administration Palliative Care Master’s degree curriculum. They had completed a prerequisite research course that exposed them to both quantitative and qualitative research methods, as well as principles of evidence-based practice. Each of the students was asked individually to consider operationalizing their future role as leaders in palliative care by developing a quality improvement project directed toward underserved populations. They were asked to do this using the perspective of African American women living with chronic illness, such as HIV and AIDS. The key objective of the assignment was to make sure that a needs assessment included the voices of those experiencing the chronic illness.
An underlying objective of the assignment was for the students to experience a community-based critical analytic approach to evaluating the needs of individuals who are underserved and living with a life-threatening chronic illness. The students were asked to listen carefully to each of the recordings representing the sharing of the structured writing and a recording that was obtained after the intervention was completed. This last recording was considered a way to obtain general focus group data in which the researcher asked the participants what they thought about their participation in the intervention program and what was most and least meaningful to them.
The recordings were downloaded on Blackboard Vista as audio files. The students accessed Blackboard Vista through Boston College, as they did for all other course materials, and listened to the recordings with headphones or speakers outside of the classroom setting. The students were encouraged to listen to the recordings two to three times to embed themselves in the spirit of the words, phrases, and general content of the dialogue. They were asked to analyze the data by using an approach of coding themes (Miles & Huberman, 1994) using the following specific directions posted on Blackboard Vista:
- Listen to the voices of the participants. Make notes about themes that you hear.
- Develop pattern coding (i.e., given the working set of these notes, move the themes to a higher level that is more explanatory).
- Choose two themes and describe how you will address these data in the context of a palliative care program.
As a means of supporting the dialogue across ideas generated from this approach, the students were encouraged to use discussion boards as a way to help them make connections with each other and with the faculty as they analyzed the data and devised quality improvement solutions.
Defining Palliative Quality Improvement
The graduate students were able to successfully complete the assignment and submitted a written analysis with palliative care quality improvement suggestions that were also presented in a class seminar. Of note, the areas of concern identified by the women and subsequently interpreted by the students were not those of symptom management, but rather those of social, psychological, and spiritual suffering, even though the film clips addressed physical symptoms experienced. The following is a synopsis of the analysis obtained and suggestions made by synthesizing the students’ individual work.
Pattern Codes Identified
Stigma and Acceptance. Disclosure of HIV/AIDS status centered on the need for acceptance by others. This was particularly true with family members, especially their children. Many spoke of the need to have support to understand how to tell others about their HIV status. This was needed when they decided to have an intimate relationship with a man. The fear of potential negative reactions by children, mothers, and siblings was a message often repeated. Many of the women shared the effects of a lack of education on the part of family and friends related to how one catches the virus. Most women looked most for their mother’s acceptance and support (which most mothers did give, if alive and cognitively able).
Of the women who were embraced with support by family members, there appeared a quicker evolution to self-acceptance. The notion of wanting acceptance was often discussed as learning at an early age to please others before taking care of themselves and how this way of thinking put them in risky situations. Finding love and acceptance often meant seeking self-worth by making choices that often had nothing to do with what they needed or wanted.
Education of Self and Others. Developing an understanding of the disease, for both themselves and others, appeared to have a strong influence on the women’s level of self-esteem. When an understanding of the disease occurred from a personal perspective, most women began a slow and difficult process of moving forward. In the process of sharing information about HIV with others, the women spoke of becoming more comfortable with themselves and of experiencing a sense of empowerment. The women consistently spoke of how their lifeline was volunteering their services to many AIDS service organizations, locally and in school systems, to try to get out a prevention message to those at risk and those living with the virus. There was a special affinity to women with whom it was easy for them to identify. In fact, some of the women felt strongly that although African American women are most affected statistically with HIV, all women share the same personal and interpersonal struggles with safe sex negotiation and advancing self-esteem.
Self-Esteem. Many of the women identified previous and ongoing traumatic events that made them feel unworthy of help or a successful future. The women described childhood sexual abuse that they experienced directly, multiple rapes, prostitution, and committed relationships in which they felt betrayed by men who had sex with other women. The women shared that male partners to whom they were faithful were seropositive and never disclosed their status, yet refused to engage in safe-sex behaviors, including condom use.
The women also discussed recognizing and confronting their substance abuse in attempting to gain a sense of control in their lives. Low self-esteem was identified in a discussion of the difficulties in gaining control, with comments that some of the women felt empowered while under the influence, but remained in situations that effectively silenced and negated their self-worth when sober. From living in abusive relationships with spouses or siblings, the women stated that learning to stand up for themselves and learning to break the cycle was, at times, an incredibly difficult challenge.
Challenges in Navigating the System. Although some women spoke of supportive counselors within the health care system, several expressed frustration and anger regarding limited support when first diagnosed. Most identified their diagnosis as being presented to them in a matter-of-fact way, with no heartfelt understanding or support given at the time of diagnosis. They spoke with anger of attempting to negotiate Section 8 housing regulations and of feeling disrespected by health care staff. Whether engaging in the health care system, seeking housing, or negotiating seemingly simple tasks, such as obtaining a taxi ride, the system did not run smoothly. The difficulties faced by these women in attempting to negotiate these systems added to the struggles of living with the physical and emotional challenges they faced daily.
Support as the Secret to Success. A theme that emerged was one of recognizing the difference between people who care and those who do not. When a supportive relationship was present, as within their family or in a group of peers, the women’s sense of empowerment increased. Being accepted for who they were, regardless of their disease state, elevated their feelings of self-worth. As most of the women “found their voices” through supportive relationships, they in turn began to educate and support others, further empowering them. Within the safe confines of peer support groups, they spoke what they felt, and no criticisms were heard.
Palliative Care Interventions as Quality Improvement
Two key components were identified by the students as critical to creating palliative quality improvement interventions, as well as specific creative ideas for programs of improvement that would be gender sensitive and culturally relevant for this group: educational programs for professionals involved in palliative care and knowledge on how to create effective support systems directed to clients in communities.
Value of Education to the Self, Others, and Relationships
An intervention that would help develop the communication skills and cultural sensitivity of health care providers is needed. Understanding how to communicate bad news should be taught to all providers working within any setting in the health care field. However, communicating bad news in the context of years of oppression, stigma, discrimination, and lack of trust may need to be mitigated with the presence of a consumer or member of the team who understands these realities or who understandings the social dynamic behind the illness experience. Education for the health care provider, with a program such as the one developed by the University of Washington, under a grant provided by the Robert Wood Johnson Foundation’s Promoting Excellence in End-of-Life Care, could be required for all providers working with people living with HIV or AIDS (The Center for Palliative Care Education, 2006). It provides an educational tool in areas such as communication, cross-cultural issues, and symptom management.
Offering a consistent, skilled care-giver that patients can turn to with any questions is needed. A case management or care coordination model of palliative care would be beneficial. Although case management services exist within the social system, fragmented care continues to occur. Recognition of the person as a whole and the strengths they possess, not as a “Black woman with HIV,” is empowering. The disease becomes personalized by providing interactive dialogue regarding the effects of the disease, from the physical, psychological, social, and spiritual perspectives. When a person’s values, beliefs, strengths, and concerns are respected, the patient then can begin to develop the ability to live positively with a chronic illness.
Support Systems. One part of the definition of palliation, that of improving symptoms, guides the development of supports systems and services. The social, psychological, and spiritual suffering that these women expressed seemed to improve with the support given during the Sistah Powah sessions. Formal support groups, modeled after the successful programs of the 1980s, such as Reach to Recovery (for post-mastectomy patients), should be offered. Implicit in this model of support is the concept of acceptance and peer-led leadership. When another person living with a similar diagnosis in similar circumstances offers understanding and support, newly, or not so newly, diagnosed patients realize they are not alone in the process.
To move the analysis and needs assessment to the level of creative of improvement programs, the students were asked to develop creative ways to advance improvement in the areas of concern that were discovered and share them on a discussion board in Blackboard Vista for the class to see. Some of the students discussed the development of an interdisciplinary palliative care team that would address family meetings and resource allocation during planned home visits in inner city settings. Another student created a skill-building approach to self-advocacy for patients and family members, while another described a program of peer-to-peer navigation where experienced women living with HIV for many years help others access what they need to increase their quality of life.
The experience of completing this project was positive. During a final course evaluation, the students stated that the process of the assignment helped them complete a secondary analysis of qualitative data in a safe and controlled way (audio recordings) that provided needs assessment data by using the “lens” of a palliative care advanced practice nurse. They discussed how the application of both research analyses and creative program development ideas helped them use evidence in planning quality improvement interventions.
Because graduate students come to study palliative care with a wealth of knowledge at a variety of levels of ability and experience, creative ways to incorporate research analysis and evidenced-based practice is important. This assignment using the data from a nonrelated research intervention study gave graduate students in palliative care nursing the opportunity to develop ideas about how advanced practice nurses could construct a coalition of support in the future through the active involvement of clients who may need a palliative care infrastructure but do not know how or from whom to access assistance. The sensitive responses of the students in this course encourage each of us to think of the complexities of palliative care that are affected by socioeconomics, race, and gender, especially in the inner cities of the United States.