Abstract
As change agents in the community, community health advisors (CHAs) are a viable solution to bridge the gap between health service delivery systems and the community. With many CHAs members of the underserved and minority populations they serve, change and empowerment experienced by CHAs should be documented. This phenomenological study describes the empowerment change processes of 30 African American CHAs who participated in focus groups that used photovoice, and were part of a breast and cervical cancer health promotion program in Mississippi and Alabama. Using photos and narratives as primary research methods, these CHAs gave voice to an often-overlooked resource in the improvement of vulnerable populations in the education and promotion of the community’s health.
Disparities in socioeconomic levels, health care access and utilization, and education experienced by members of racial and ethnic communities underscore the need to adjust health service delivery. To address and provide for the health care needs of a minority community requires cultural awareness, sensitivity, and cultural confidence. Thus, community health workers (CHWs) act as links between community members and the health service delivery system (Service & Salber, 1979) by serving as advocates for individual and community health needs. Additionally, they are the appropriate change agents to implement community-based approaches for service delivery and to promote health among groups that have traditionally lacked access to adequate care (Eng & Smith, 1995; Rosenthal et al., 1998; Thomas, Quinn, Butler, Fryer, & Garza, 2011).
Known by many different titles, CHWs are individuals who are indigenous to their communities and assist individuals and communities in adopting healthy behaviors (Service & Salber, 1979). They conduct outreach for medical personnel and/or health organizations and implement community-level programs that promote, maintain, and improve individual and community health by providing information on available resources, social support, informal counseling, and services such as first aid and blood pressure screenings (Witmer, Seifer, Finocchio, Leslie, & O’Neil, 1995).
The term community health worker has been used in several studies (Rosenthal, Wiggins, Ingram, Mayfield-Johnson, & De Zapien, 2011; Swider, 2002; Witmer et al., 1995) to encompass an array of health practitioners known nationally and internationally by different titles (e.g., promotora, community health representative, peer health promoter, and Community Health Advisor [CHA]). Some researchers see CHWs on a continuum (Eng, Parker, & Harlan, 1997) from volunteerism to undercompensated professional helping. Most CHWs are paid, have academic degrees, and hold leadership positions in organizations, and some provide reimbursable services (Love, Gardner, & Legion, 1997). At the other end of the CHW continuum are volunteer CHAs. CHAs are recognized as natural helpers and work within their own social networks through person-centered webs of relationships that connect individuals to other individuals or groups (Israel & Rounds, 1987) to incorporate health promotion activities into daily routines. They are often sought after for advice and assistance, and their helping abilities are a natural extension of their personalities (Community Health Advisor Network [CHAN], 2000; Mayfield-Johnson, 2011).
Generally, CHWs possess strong leadership and motivational capabilities (Calori, Hart, Tein, & Burres, 2010; Love et al., 1997). As “change agents,” CHWs can increase access to care and facilitate proper use of health resources of adults by providing education through appropriate learning methodologies, outreach, and cultural linkages between communities and health systems. They bridge the gap between health service delivery systems and the community because most community members trust these individuals. They may be known through a neighborhood context or within a wider network. Their helping relationship is characterized through long-standing, preexisting ties that are locally based and are a central part of their activities (Eng & Parker, 2002; Israel & Rounds, 1987).
Many CHWs are members of medically underserved and minority communities. Thus, the same rationale that makes CHWs capable agents for change and outreach also facilitates this change process. However, little research exists that describes the change process that takes place within a CHW. Specifically, what are the experiences a community member goes through as he or she becomes a CHW, and how do these lived experiences impact his or her life? The purpose of this study was to engage African American female CHWs in Mississippi and Alabama in a participatory research process to describe their change process in becoming empowered active partners in their individual and community’s health.
CHW and CHA are terms that are often used interchangeably, but in recent years, community health worker or CHW has gained prominence as an umbrella term to describe the continuum of the CHW profession (Love et al., 1997; Rosenthal et al., 2011). This study, however, uses the term CHA and the CHA terminology and was conducted on CHAs who volunteered to be part of a breast and cervical cancer health promotion program in Mississippi and Alabama that focused on reducing racial health disparities and adapted a CHAN program model (CHAN, 2000). The CHAN model stressed the empowering of “natural helpers” and was based on the premise that in every community there are individuals to whom community members “naturally” turn for reliable advice, assistance, and action. Volunteers were recruited to participate in training sessions designed to increase their knowledge about breast and cervical cancer, facilitate leadership development skills, and build linkages between local service providers and formal community leaders. After training, the CHAs planned and implemented short- and long-term activities to improve their community’s health. Because there was a strong participatory research component to this breast and cervical cancer health promotion program, the sponsoring agency defined these CHAs as Community Health Advisors as Research Partners, or CHARPs (Mayfield-Johnson, 2011). As a result, study questions were framed within the CHARP terminology.
Theoretical Framework
A phenomenological framework guided this research that allowed for the study of the human experience as it is lived, elucidated this lived experience through descriptions, and recognized that meanings are given in perception and modified in analysis (Boyd, 2001; Munhall, 1994; van Manen, 1990). This approach allowed for a deeper understanding of and ascribed meaning to one’s everyday experiences to describe the total systematic structure of the lived experience, including the meaning that these experiences had for the individuals who participated in them. The theoretical foundation for this study was based on Freire’s (1970, 1973) empowerment pedagogy and Black feminist theory (Collins, 1996, 2000; Guy-Sheftall, 1995; Omolade, 1994).
Freire’s concept of education for emancipation and conscientization provides a particularly useful platform for a theoretical grounding for the present research. Freire contrasted “banking education,” in which predigested information is “deposited” into the heads of learners, with a process leading to conscientization through “problem-posing” education in which learning and empowerment are achieved through learners confronting real and immediate challenges. In this process, learners evolve through stages of consciousness, beginning with intransitive (learner as object), where learners uncritically accept their immediate circumstances and defer to authority to define what education is necessary. The next stage of consciousness is semiintransitive, a stage of incipient critical arousal. The third is naive transitive, a growing but not yet critical awareness of the immediate and sociopolitical environment, and the final stage of critical consciousness results in conscientization, a critical recognition of the circumstances with an active effort to change them. Critical consciousness is a process far exceeding the incremental acquisition of knowledge and results in learning that is more transformative, empowering, and critically questioning—often not only of one’s immediate circumstances but also of the larger social and political context. This fourth stage is characterized by praxis, in which there is “action and reflection of men [and women] upon their world in order to transform it” (Freire, 1970, p. 68).
In the present study, praxis is at its heart: Objectives of the program included the empowerment resulting from Freirean problem posing, action, and reflection and a transformed awareness in the African American community of uniquely female health concerns at an individual and community level. Freirean methodology also used “culture circles” emphasizing collaborative, problem-posing group interaction, and “generative words” emanating from the group’s own experience, and both of these concepts are also reflected in the present study.
Contemporary Black feminists have identified the central themes in Black feminism as evidenced in over a century of struggle within the United States: (a) presentation of an alternative social construct for now and the future based on African American women’s lived experiences; (b) commitment to fighting against race and gender inequality across differences of class, age, sexual orientation, and ethnicity; (c) recognition of Black women’s legacy of struggle; (d) promotion of Black female empowerment through voice, visibility and self-definition; and (e) belief in the interdependence of thought and action (Collins, 2000; Guy-Sheftall, 1995, p. 2). Black feminism rejects additive approaches to oppression. Instead of starting with gender as a source of oppression and adding layers of other variables like age, sexual orientation, race, social class, and religion, Black feminism views these distinctive systems of oppression as being part of one overarching structure of domination. Oppression for Black feminism, in any given sociohistorical context, is a system of interlocking race, class, and gender; analysis is not a singular focus, describing the similarities and differences of these varying systems of oppression, but rather it describes how these systems interconnect and yield a powerful force that often isolates Black women from both their White female counterparts and their African American brothers. This system of interconnected oppression creates a distinct theoretical stance that stimulates the rethinking of basic social science concepts. Banks-Wallace (2000) explicates the use of a womanist theoretical framework when developing research interventions to assist African American women in incorporating health-promoting behaviors into their lives. She asserts that interventions that are consistent with African American women’s ways of knowing are more likely to be successful in promoting behavior change among this population.
Method
Photovoice (Wang, 1999; Wang & Burris, 1994, 1997; Wang, Yuan, & Feng, 1996) was used in this study as a means to narrate the perceptions and experiences about how female African American CHAs felt that they had changed as a result of being a CHA, by participating in a breast and cervical cancer health promotion program, and by becoming empowered to be active partners in their individual and community’s health. Photovoice is an innovative participatory tool based on health promotion principles and the theoretical literature of adult education for critical consciousness, feminist theory, and a community-based approach to documentary photography (Wang, 2003). Instead of placing cameras into the hands of professional photographers or researchers, who often control photo data generation, the photovoice method put cameras into the hands of the discussion groups’ participants (not unlike Freire’s culture circles) whose lives were daily affected and who were the focus of the study. Photovoice enabled the CHAs to record and reflect their community’s strengths and concerns through taking photographs, and promoted critical dialogue and knowledge about important personal and community issues through discussion of CHA photographs with the goal to ultimately inform policy (Wang, 1999; Wang & Burris, 1994). Photographs serve as one kind of code that reflects the community back on itself, mirroring the everyday social and political realities that influence people’s lives (Freire, 1970, 1973). For this study, photovoice represented the women’s own portrayal of their lives and community (Wang & Burris, 1994).The focus groups’ facilitated discussions encouraged the women to critically analyze in a collective manner the social conditions that contributed to and detracted from their health status (Wang & Burris, 1994, 1997).
Recruiting Participants
The primary eligibility criterion was being an African American female CHA who completed the 8-week breast and cervical cancer awareness training. Because purposeful sampling methods were used to identify participants who would provide deep insight and understanding of how CHAs become empowered to be active partners in their individual and community’s health (Morgan, 1998; Welman & Kruger, 1999), an additional requirement of active engagement in breast and cervical cancer health promotion activities at least once a month was added.
Four photovoice focus groups were proposed to represent the urban and rural regions of Mississippi and Alabama (urban Mississippi, urban Alabama, rural Mississippi, rural Alabama), and four community consultants, identified as individuals with leadership positions as CHAs within the program, were selected to assist with recruitment, preparation, and logistics. After the eligible pool of participants had been determined for the focus groups, the community consultant contacted each individual and described the purpose and procedures of the study. She answered any questions that were raised and invited those interested to participate in the study. Each participant received a formal invitation to attend the photovoice training session at a convenient location, and a thank you letter for her interest in participating in the project.
Ten women were invited to participate in each photovoice focus group to address expected attrition issues (Krueger & Casey, 2001; Morgan, 1998; Morse & Richards, 2002). Prior to the photovoice focus group training session, each woman received an invitation letter along with an informed consent form. Participants were informed that they would be attending a group with other women of their same CHA training in their area, participation in the study was voluntary, and refreshments, incentives, child care, and transportation would be provided. In Mississippi (urban and rural areas) and Alabama (rural area), seven CHAs participated in the photovoice focus groups whereas in the urban Alabama area, nine women participated. One CHA participated in the photovoice focus group training and photo assignment process but was unable to attend the focus group.
The Photovoice Focus Group Sessions
Prior to each photovoice focus group, an initial photovoice training session was conducted, which provided the rationale for using photovoice, including goals, methods, advantages and disadvantages of using a disposable camera (Wang, 1999), and demographic data collection. Ethical considerations and safety issues were also discussed. The participants practiced the informed consent process by reviewing and discussing the informed consent forms needed to obtain permission from any individual prior to the CHA taking her or his picture. This was followed by a discussion and role-play exercise on when and how to obtain informed consent from individuals prior to taking their picture. Establishing personal boundaries and the importance of personal safety were also discussed (Wang, 1999, 2003). Disposable cameras were distributed to each participant along with tips on how to use a camera. CHAs practiced using their cameras by taking pictures of one another.
As this study sought to describe how female African American CHAs became empowered to be active partners in their individual and community’s health, the research concepts were initially difficult for participants to understand because the change process was intricate, multifaceted, and complicated to describe. To help them narrow specific aspects of their assignments or broaden their perspectives on daily facets of their lives that they may have taken for granted, a photo assignment was given (Lopez, Eng, Randall-David, & Robinson, 2005; Lopez, Eng, Robinson, & Wang, 2005).
The photo assignment was a brainstorming session on what change meant, if and how each person’s life had changed, and meaningful symbols. It was also clarified that this study was not to determine if the sponsoring cancer awareness health education program was successful or a good health promotion program. Instead, this study was to be a deep personal assessment and analysis of if and how each woman had changed as a CHA. With that understanding, CHAs were given their photo assignment. Within 5 weeks of each of the photovoice training sessions, each focus group, from the designated rural and urban areas of Mississippi and Alabama, met to discuss their photographs.
Each focus group session began with participants informally sharing their photos in a round robin session. Two to three pictures were selected from the round robin session to focus the discussion. The photographs served as triggers for the discussion of the topic, and the SHOWED method was used. The SHOWED method (Wallerstein & Bernstein, 1988; Wang, 1999; Wang & Burris, 1994) is a semistructured, open-ended interview guide that employs a five-step questioning technique: (a) What do you see in this picture? (b) What is happening here (the problem)? (c) How does this problem relate to our lives? (d) Why do these problems exist? (e) How can we become empowered by our new knowledge and understanding of these problems and why they exist and what can we do to address these problems? This Freirean culture circle process allowed the discussion about the trigger to move from concrete and personal levels to social analysis, thus prompting the participants to think critically about if and how their lives had changed and, thus, how their lives had been affected.
Data Analysis
All focus group sessions were audio recorded and transcribed verbatim. After each session, the transcripts, facilitator notes, and corresponding photographs were reviewed by the research team. Using phenomenological inquiry (van Manen, 1990) and standard qualitative research procedures (Miles & Huberman, 1994; Strauss & Corbin, 1990), all data were organized into broad conceptual themes and verified through interrater reliability among participants for clarification, consensus, and validation. To assist with data analysis, ATLAS.ti 5.0 (Muhr, 2004) was used to assist in the organization for coding of transcripts, and members of the research team validated findings.
Participants
Thirty African American female CHAs participated in four focus groups. These women completed the 8-week breast and cervical cancer training and were actively involved in community activities for at least once a month prior to participating in a focus group. The original design of the cancer awareness health education program included both urban and rural locations in Mississippi and Alabama, and this study included equal samples from both urban and rural communities of Mississippi and Alabama.
The average age of the women was 49 years. The majority of participants (77.5%) were either previously (32.3%) or currently (45.2%) married. Most participants (90.3%) had completed high school or obtained a GED, and 45.2% had obtained an associate’s degree or higher. Most participants reported working full-time (48.4%) with 19.4% working at least part-time in addition to their community helping activities. However, slightly more than half of the CHAs (54.8%) reported annual incomes of less than $14,400.
Representation and Presentation of Data
The data represented in this study relied heavily on CHAs’ words, and no attempts to correct grammar or remove certain speech phrases and patterns (e.g., the use of “um” and “uh”) were made. This technique is purposeful (Erikson, 1976; Preston, 1985; Raine, 1924) and supports the promotion of Black female empowerment through voice,visibility, and self-definition (Collins, 2000; Guy-Sheftall, 1995). In this article, the terms African American and “Black” are used interchangeably due to self-labeling by participants and usage in current theoretical literature.
Results
Photovoice can be used as a participatory assessment and issue selection tool. It enables people to identify community strengths or assets and their shared concerns as a basis for issue selection and action. Because empowerment and change are often difficult to quantify, photovoice offered an approach of problem-posing education in that it allowed the participants to help define the issues and frame the most relevant social actions (Morse & Richards, 2002). The photovoice focus groups allowed for the free discussion of what it means to be a CHA and if and how the CHAs feel they had changed. Although the pictures taken by the focus group participants were triggers for discussions, they also offer a window into the worldview of the participant. Therefore, all pictures taken by the photovoice focus group participants were developed with double prints, and a copy of each set of pictures was collected by the researcher. Pictures were then catalogued, and frequency counts and percentages were computed based on thematic categories emerging from the data. A total of 469 pictures were taken among the 31 participants, reflecting what they most felt represented change in their lives and what factors influenced these changes. Interestingly, a third of the pictures were of other women. From a synthesis of photographs taken, focus group discussions, and validation of findings by the CHAs, seven themes emerged about change: (a) personal change, (b) historical and cultural roots, (c) religion and faith, (d) family and community, (e) knowledge and education, (f) CHW roles, and (g) significance of the photovoice methodology.
Theme 1: Personal Change
Personal change was derived from significant statements that contained themes related to roles and competencies CHAs felt that they possessed. The descriptor of personal change alluded more to CHA qualities that were enhanced through participation in both the program and in community activities. CHAs described personal change in terms of demonstrative mastery or levels of confidence previously absent in their advisor roles. Because their natural helping capabilities were enhanced through additional skill-building and leadership development, personal capacity increased. For example, one person noted, “So, just being a CHARP has really changed me. I guess I can say for the whole group, that it has changed all of our lives.” Figure 1 represents a picture taken by one of the photovoice focus group participants that exemplifies personal change. One CHA asserts, “Until a person becomes totally visible in their role in life, they will remain invisible to all eyes.”
Personal change. Photo © Alice Hardy, 2004. Reprinted with permission.
I had a pair of black pumps and uh . . . I had had them for I don’t know, 3 or 4 years but anyway they were all ran over and the heel was crooked on them. You know, my mama told me that when I got ready to graduate she said, why don’t you go and get you a new pair of shoes. I said no. So every event that I had to attend when I went to school, I wore those shoes. I say now, [sigh] and uh . . . I said no, I’m gonna wear these shoes. And even after I graduated, I kept those shoes until they really dry rotted. And the reason why I kept those shoes, is because I didn’t want to forget . . . [crying] where I came from. So every day I looked in that closet and I saw those shoes and I remembered the struggle that I had to be where I came from. But now I look back and I see that I had to go through that to get to where I am now. And I thank God and He let me go through that. Because the people that I work with now, the abused women, the low self-esteem women, I can relate to those women because I been through that. And I think that’s what makes me care. (56 Year-old mother and grandmother, sister to a lung and liver cancer survivor from Mississippi)
Additionally, specific behavioral changes related to empowerment, self-efficacy and locus of control were also included in this category. Although individual CHAs may not recognize changes in self-efficacy or locus of control as measurement constructs for empowerment, examples were cited throughout the discussions. Comparable to Freire’s concept of generative words, specific words that captured personal change were summarized by the CHAs: confidence, role-model, recognition, wisdom, training, respect, balance, empowerment, leadership, interactions, communication, and health.
Theme 2: Historical and Cultural Roots
History and culture represented a symbiotic component to the discussion of who the women are, where they come from, and what they do. Separating out the historical and cultural roots cannot be done, for it is this foundation, this core struggle, that is essential to describing the lived experience of a female African American CHA within this study. Specific words that captured historical and cultural roots were summarized by CHAs in the focus group for this category: compassion, sacrifice, cotton fields (Figure 2), progress, economics, African American women, and caregivers.
Historical and cultural roots. Photo © Bobbie Hill, 2005. Reprinted with permission.
I chose the picture of the cotton field. I chose this picture because it reminds me a lot of my childhood. It reminds me of who I have become and appreciate the days that God have brought me. And I wrote that the picture reminds me of the struggle just to have a place to stay and food to eat. I really thought the picture also reminds me of how we had to work hard in the fields each day and every day to keep a roof over our heads and so we would have food to eat because if we didn’t we would not be allowed to stay. My two sisters and my brother that I had to take care of, so I was like working in the house while they were away working. So I learned how to cook at a very early age. I took care of them for my mom until the rest of them got home in the evening. And I have figured out today that God has truly brought us a long way and we have a lot to be thankful for. (61-year-old mother and grandmother from Mississippi) We’ve always been considered second-class citizens. Because we had to struggle to even get the right to vote, and then when we were given that right, we had certain qualifications that we had to meet even to qualify to vote. And so as I was growing up . . . I was like [name removed], I was from the old school too. I remember my mother taking me to the doctor’s office, and they had a white water fountain and a colored water fountain. They had a white bathroom and a colored bathroom. I remember specifically wanting to drink out of the white water fountain (some laughter). The water was still the same color, but it was just the fact that it said white. I was looking for white water because it said white. So I think that . . . we’ve always had that . . . whereas it might be easier for you (White folks), but we had to work at it. We always had to be the best, we always had to do above and beyond what other races had to do in order to qualify, to meet certain criteria. (74-year-old mother, grandmother, and cancer survivor from Alabama)
Theme 3: Religion and Faith
The African American church has been the most vital, influential, and lasting force in the African American community (Patillo-McCoy, 1998). It has long been a solace from racial injustice, and it has provided strength and spiritual guidance to its members. It has assisted African Americans via a wide array of adult education activities in developing a greater appreciation for their culture and history, gaining basic literacy skills, acquiring trades, and keeping abreast of societal issues (Byrd, 1988; Isaac, Guy, & Valentine, 2001; Patillo-McCoy, 1998; Rachal, 1998). Through times of economic hardship and political activism, the African American church has developed into a structured community agency equipped to combat social ills. The church has realized that faith and religion do not exist within a vacuum; it has not limited itself only to spiritual and religious edification of its congregation.
One thing my pastor said is that you know people talking about “I was called to this and I was called to do that.” One thing that he has always said is that you don’t have to search for your purpose to a great degree. He said “Find a need and meet it, find a hurt and heal it.” And so that is the thing right there, when you find what you need out there you find the solution however you can. We found the solution to our community being at a high rate of death due to cancer. We found a source and so we are meeting that need. And again it is about the knowledge, but not only the knowledge, but the knowledge of working together. (40-year-old woman from Mississippi) There is a reason behind them, you know, every picture has a reason behind them. Like the pictures of our church you know, the back ground behind it is where I came from and moved to where I am today. You know it shows that God has blessed me and brought me forward. (72-year-old mother and grandmother from Mississippi)
For the participants in this study, religion and faith are woven into the very fabric of self-definition and in helping activities. Participants feel that their role as CHA is a calling, a divine appointment to help others in their community. Many helping characteristics and activities are similar in nature to those carried out in congregations and recognized by religious leaders as desirable traits.
Theme 4: Family and Community
The importance of family emerged as a vital theme with participants discussing how socioeconomics affected their childhood, upbringing, and family dynamics, while simultaneously underscoring the important role of family. Family was not limited to a traditional nuclear definition but included a broad scope of individuals. Family was a core value for participation because it encompassed a generational lineage; it was representative of the past, the present, and the future.
CHA groups also represented an extended family support structure. Figure 3 most eloquently represents this theme.
Family and community. Photo © Alice Hardy, 2004. Reprinted with permission.
The photographer of this picture said, This tree represents the power of unity, Ecclesiastes 4: 9-12. Family, friends, love, faith, hope, and determination creates a seven fold building block, that structure that can conquer any problem that one may encounter through life’s journey, found in one’s life’s experiences. This is actually seven trees, but it is really one tree. They were so close together that they grew together . . . This tree has been in our community, our area, for so many years. And in that area, families have dissipated, people have moved on, people have died, you know, out/in . . . The thing of it is that, in being a CHARP, looking at what we have learned, looking at the gifts that we have brought in, you know, it’s just like a family structure. You are going to have difficulties but all of the things that we have went through, we have been able to overcome. (40-year-old female from Mississippi)
Theme 5: Knowledge and Education
This theme was directly related to personal change as reflected in this CHA statement, “for my people have suffered for lack of knowledge,” which alludes to the power of knowledge and education. The charge to share lifesaving information with others had a profound impact on individual CHAs. Other key words that captured this theme were training, educating the community, empowerment, lack of knowledge, action, cancer, and success. The following passages best exemplified this theme.
I know that when I first started um. . . . say 10, 15, 20 years ago, the African American community just did not even want to even mention the word cancer. People would die and most likely would die from cancer, but the family never acknowledged that. They would just say she died, probably from some kind of cancer. Years ago cancer was a taboo subject. I know it was for me, I wouldn’t even say cancer because I was afraid. By not saying it, won’t make it happen. That is what I had. But I’m . . . . But since I been a CHARP and got in here um . . . I’ve been working . . . I’ve gained knowledge, and I’ve share the knowledge with my family. I’ve had several family members that had cancer. I gave them resources, told them what to do, where to go, that kind thing. So it has enlightened me as for as uh . . . uh . . . sharing information with my family, with my friends. I talk to my friends, I talk to my coworkers, um try to make them aware. And I think that, as the old saying, um knowledge is power. When we learn better, we do better. (58-year-old mother and grandmother, kidney cancer survivor from Alabama) I knew that I had to go to school because that was the only way that I felt like I could adequately provide for my children was for me to go to school and get a degree. So I was determined to go to school. I worked on weekends; I sacrificed a lot of time that I could put with my children, because I knew that this was the only way that I could take care of my children. I’ve been on welfare, I’ve been on food stamps, and I’ve lived in the housing projects. I had Medicaid, I’ve done . . . anything that was free, I qualified for it. But what I’m saying is that I had to go through that to get to this, and now my job . . . the clients that I see . . . they are welfare recipients, well mostly. I work with [agency name removed], and I see clients coming in. I can relate to them because I have been there. I have lived in the housing projects, and I’ve been on food stamps. And I didn’t always get them on the time they say I was going to got them (laughter). I can relate to that. I can relate to that. I can relate . . . to being frustrated and being mistreated and being put at the back of the line. (56-year-old mother and grandmother, sister of a lung and liver cancer survivor from Mississippi)
Theme 6: CHA Roles
The importance of CHA roles as a theme focused on the varying roles that they played in the community. These CHAs were recognized as caregivers, leaders, educators, and activists.
There are health care providers within the congregation where I attend but if anybody has a question or need something or want more information about cancer they come to me. There are nurses, there are technicians, there are people who work in clinical settings in our church. But I guess again the passion for what we do, constantly communicating the messages, it just becomes, you start representing those particular subjects. (55-year-old mother and grandmother, sister of a cervical cancer survivor from Alabama)
CHAs help to alleviate the disconnect between health professionals and members of the community. They are links to referrals and resources, and CHA skills were also categorized. Most of the skills described vary along the helper continuum in that CHAs feel that they have people and information skills, empathy, and the ability to listen and are facilitators for the community. Specific words summarized the CHA roles: volunteerism, respect and acceptance, calling, role models, communities, removing barriers, communication, creative, educator, and caregiver.
Theme 7: Significance of Photovoice Methodology
This significant theme emerged from the participants’ overwhelmingly positive comments about the method. During each photovoice focus group, CHAs commented that this form of evaluation provided a source of strength for one another; it was a window into another’s life.
It’s more about . . . it’s more about us (all agree) who we were and who we’ve become. Because we were able to express it in pictures and now we’ve had the opportunity to sit around the table and talk and share and I feel like I’m in the room with my family as opposed to being in a classroom situation where I’m being taught. I am learning, I have learned so much since I’ve been sitting here um . . . and just been totally captivated by the information that I’ve received. (57-year-old mother and grandmother from Mississippi) So many of the other things that have been said and there have been all of these lights going off—an epiphany that have been happening. So I feel that I am more empowered than I was when I came in the room because I have more knowledge but I have it from so many aspects. I can see it whereas I only had my own point here and things that I have been taught. I am now able to look through somebody else’s eyes. (59-year-old mother and grandmother from Mississippi) When you asked us to take the pictures . . . when I thought about taking the pictures and you (researcher) said something that meant something to us, and you know you really have to think about things and about what’s important to you because as an everyday thing, you don’t think things about what is so important to us. We just live the life and go through it and then when you got to take a picture, you want the picture to mean something or mean something to somebody else . . . well it means something to me. What’s the story behind the picture. I’m not gonna be taking a picture just to be taking a picture, get something that means something to me and might mean something for others and touch them. You know that’s how great art is appreciated, it speaks for itself. (58-year-old mother and grandmother, kidney cancer survivor from Alabama)
The camera is an unusually motivating and appealing device for many people, and photovoice provided a source of pride and ownership. More than a method, it became a tool to reach, inform, and organize community members, enabling them to prioritize their concerns and discuss problems and solutions. It enabled participants to become advocates for their own well-being and that of their community. In part, it became the essence of who a CHA is and what she does.
Discussion
Photovoice offers the opportunity to perceive the world from the viewpoint of individuals who lead lives that are very different from those traditionally in positions of power and authority. Thus, this approach to participation respects the knowledge from the participants as an essential source of expertise. It confronts a fundamental research problem in that what professionals, researchers, academics, and outsiders think is important may completely fail to match what the community thinks is important. Feminist theory suggests that power accrues to those who have a voice, set language, make history, and participate in decisions (Smith, 1987). Black feminism underlines the structure of oppression as a system of interlocking race, class, and gender that isolates and often silences Black women (Collins, 2000). Within this study, one application from photovoice was that African American female CHAs may wield this approach to influence how their public presence is defined (Wang, 2003), and as a methodology, photovoice attempts to enable them to disrupt the status quo, and ultimately revise depictions that contribute to gender, class, ethnic, and other kinds of oppression.
The recognition of the significance of women’s everyday identities and experiences contributes to the dismantling of societal fictionalized idealizations and justifications of oppressive systems (Wang, 1999). With CHAs documenting the reality of their lives, sharing, and discussing their photographs, the power of the visual image is channeled to communicate life experiences and perceptions. As CHAs engage in the critical reflection process, discussions of individual change, sources of oppression and strength, and community quality of life are examined using contextual visual images to create a powerful participatory means of sharing expertise and knowledge (Wallerstein & Bernstein, 1988).
Within documentary photography, photographs are often used to draw attention to social issues, but they are typically taken from an etic viewpoint and may, therefore, fail to capture the true emic perspective (Strack, Magill, & McDonagh, 2004). Photovoice enables women to control the research process in order to express, reflect, and communicate their everyday realities (Wang, 1999) while honoring an oral African American tradition of history and expression (Banks-Wallace, 2000; Collins, 2000). Finally, approaches to documentary photography (Ewald, 1985; Spence, 1995) suggest that a grassroots approach to representation and demonstration in which women and other silenced groups use photography as a personal voice with the politics of photography as a community voice will have a lasting impact and reach policy makers (Wang, 2003).
The mere act of engaging CHAs to go out in their community and take pictures of change demonstrates a conceptualization of empowerment. Their take-charge attitude, willingness to engage themselves and others, and wholehearted desire to participate illustrated the varying core themes as discussed in this study. CHAs did not verbalize an inability to complete the picture taking assignment; instead, they returned with creative, insightful pictures. The photovoice methodology was considered by CHAs in this study to be innovative, informative, empowering, and fun. Many CHAs discussed that as they talked about how they had changed, they were also empowered. Moreover, many of the CHAs did not realize the extent to which they had changed, and dialogue about the process provided the praxis for critical reflection, all core adult education values. Dialoguing and sharing stories, regardless of the format, provide opportunities for women to share their experiences, knowledge, and wisdom while promoting the development of community among women dealing with common issues (Banks-Wallace, 2000).
Empowerment education, as developed from Freire’s writings, involved individuals in group efforts to identify their problems, with a social and historical assessment of the roots of the problems. Envisioning a healthier society, they then developed strategies to overcome these obstacles. For Freire (1970), education is the moment of the transformation of an individual mediated by her or his transformation of the world. According to Freire (1973), knowledge is based in the context of four dimensions: the logical (related to methods of knowledge), the historical (referring to the relationship between knowledge and context), the gnosiologic (referring to the ends of knowledge), and the dialogic (referring to the communication of knowledge). Although Freire placed the greatest emphasis on the communication of knowledge, he understood the significance of knowledge to the oppressed within the historical and cultural context from which it derives. In fact, he states, The education our situation demanded would enable men to discuss courageously the problems of their context—and to intervene in that context; it would warn men of the dangers of the time and offer them the confidence and the strength to confront those dangers instead of surrendering their sense of self through submission to the decisions of others. By predisposing men to reevaluate constantly, to analyze findings, to adopt scientific methods and processes, and to perceive themselves in dialectic relationship with their social reality, that education could help men to assume an increasingly critical attitude toward the world and so to transform it. (Freire, 1973, pp. 33-34)
This type of transformative learning has been the bedrock within the field of adult education. Learning, from this perspective, is clearly a sociocultural experience, and adult education has both cultural and social goals. The change process described by the CHAs in this study clearly exemplifies the conscientization process as noted by Freire. The purpose of this study was to describe the lived experiences of CHAs and their empowerment process, and within these parameters, a vivid account has been illustrated.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
Funding for this research was provided by the National Cancer Institute to the Deep South Network for Cancer Control, UAB Comprehensive Cancer Center (grant #U01 CA86128). Dr. James Butler III was supported in part, through his Mentored Career Development Award to PromoteDiversity (K01CA134939).