Abstract
Diabetes mellitus (DM) remains a lifelong, chronic disease with challenging health and economic outcomes. Projected direct and indirect costs in the United States alone are much more than $1.6 trillion by 2031 (Fitch, Iwasaki, & Pyenson, 2010). Responsible for more deaths than breast cancer and AIDS combined, DM is the seventh leading cause of death, affecting 8.3% of all Americans, and 11.3% of adults aged 20 and older (American Diabetes Association, 2014; Centers for Disease Control and Prevention, 2011a, 2012). Type 2 diabetes mellitus (T2DM) represents 95% of all diabetes cases (Centers for Disease Control and Prevention, 2011b).
The burden of diabetes (14.7%) among African Americans is extremely worrisome because as a group, African Americans are 1.8 times more likely to develop diabetes when compared with non-Hispanic Whites, less likely to be insured, and less likely to have access to affordable, acceptable health care (Chow, Foster, Gonzalez, & McIver, 2012). Moreover, research indicates that African Americans residing in rural areas have limited resources and poor access to care (American Diabetes Association, 2014; Centers for Disease Control and Prevention, 2008, 2011a; Probst, Moore, Glover, & Samuels, 2004; Utz, 2008), and are more likely to develop serious complications leading to blindness, renal failure, and amputations.
South Carolina is a mostly rural state with 36 of its 46 counties falling outside the metropolitan area and has one of the highest rates of diabetes for adults at 13.3% of the population (Centers for Disease Control and Prevention, 2014) affecting 8.9% of non-Hispanic Whites and 14.1 % of non-Hispanic Blacks (Centers for Disease Control and Prevention, 2008, 2011b). Diabetes is the seventh leading cause of death in South Carolina, claiming more than 3,000 lives each year, and the fifth leading cause of death in African Americans (Centers for Disease Control and Prevention, 2014; South Carolina Department of Health and Environmental Control, 2013). In spite of current diabetes self-management guidelines, which reflect a more holistic style, the incidence of diabetes continues to increase especially among rural African Americans (American Diabetes Association, 2014; Centers for Disease Control and Prevention, 2008, 2011b; Loftin, Barnett, Bunn, & Sullivan, 2005; Utz, 2008).
Research studies among rural residents are increasing but can be hampered by “culture memory” (memories of research abuse to self or family) along with a history of exploitative research (Corbie-Smith, Thomas, & St. George, 2002; Holtorf, 1996). Efforts are urgently needed to understand barriers to self-management, identify culturally appropriate prevention efforts within health care delivery systems, as well as programs designed within the cultural context of the population (Corbie-Smith et al., 2002; Probst et al., 2004). Although evidence exists that lifestyle interventions in the prevention and treatment of T2DM are effective, few studies use culture and spirituality as a construct to examine meaning and interpretation of colloquial terms.
Despite a wide body of literature regarding illness and diabetes management, African Americans have not been adequately represented in research studies, especially as it relates to the impact of culture and spirituality on self-management. To this end, we designed an interpretive qualitative study using focus groups (FGs) and informant interviews to gain a deeper understanding of the meaning and interpretation of a colloquial phrase, “I ain’t claiming it,” as relates to coping and diabetes self-management among an African American sub-culture group known as
Background
Diabetes self-management is defined as the knowledge attained and skills required for taking care of oneself, being able to manage crises, and changing one’s lifestyle successfully. Such lifestyle changes include, but are not limited to, medication management, physical activity, and dietary compliance.
Similarly, Clark (2003) reported that there are three sets of tasks that an individual must master to ensure successful management of diabetes: (a) must be knowledgeable about the condition, the biological cause of diabetes; (b) must be able to perform activities to manage the diabetes; and (c) must apply skills essential to sustain adequate psychological functioning, such as self-efficacy and external locus of control, thus taking responsibility for managing their own diabetes (Clark, 2003). To be effective, education and interventions that facilitate self-management must be closely linked to the cultural beliefs and values of the population (Clark, 2003; Johnson-Spruill & Riegel, 2008; Mensing et al., 2006; Polzer & Miles, 2005, 2007).
The majority of people with diabetes in South Carolina live in rural areas and receive diabetes care from physicians in small group practices, and they rarely receive comprehensive diabetes self-care management education (DSME; Johnson-Spruill & Riegel, 2008). Moreover, as rural residents, they often face additional problems of multiple illnesses, travel distance from health care, limited financial resources, the complexity of medication regimens for diabetes self-care management, a lack of knowledge, and the stigma or shame of having the disease (Siminerio, Piatt, & Zgibor, 2005; Utz, 2008). Because diabetes is one of the most challenging chronic diseases to manage, researchers have developed an increased interest in self-management behaviors among African Americans, yet most studies do not include African Americans, especially rural African Americans.
Rural African Americans and Diabetes
Utz et al.’s (2006) findings suggested that addressing health disparities in diabetes care requires that providers tailor care to the lives and understanding of their patients, and that diabetes education should be culturally tailored to recipients. Most importantly, the unique life experiences of rural African Americans require diabetes education and support consistent with their needs (Johnson-Spruill & Riegel, 2008; Pollitzer, 1991; Utz, 2008; Wenzel, Utz, Steeves, Hinton, & Jones, 2005). Studies have concluded that health care providers should find a way to support patient beliefs in a holistic approach to living with chronic disease such as diabetes. In most healing traditions and through generations of healers in the early beginnings of Western medicine, concerns of the body and spirit are intertwined (R. A. Jones et al., 2006; Samuel-Hodge et al., 2000). Today, however, a growing number of studies reveal that spirituality may play a bigger role in the coping and healing process than the medical community previously thought.
Spirituality and African Americans
Spirituality has been defined in numerous ways, including a belief in a power operating in the universe that is greater than oneself, a sense of interconnectedness with all living creatures, an awareness of the purpose and meaning of life, and the development of personal, absolute values. Spirituality can be viewed as a way to find meaning, hope, comfort, and inner peace, yet its impact on health outcomes is poorly understood. Although spirituality is often associated with religious life, many believe that personal spirituality can be developed outside religion because acts of compassion and selflessness, altruism, and the experience of inner peace are all characteristics of spirituality.
For many African Americans, spiritual beliefs and practices serve as a source of refuge and expression, and provide a framework for overcoming racial and economic conditions. Spirituality
Parks (2003) further speculates that the high degree of spirituality among African Americans stems from a long history of oppression and mistreatment and that spirituality is often used as coping mechanism. Understandably, some African Americans view illness and death as yet another struggle to overcome. When viewed within this context, treatment decisions may reflect a spiritual framework that emphasizes survival guided by a relationship with a higher power. For example, “I will let God guide me and help take care of me,” or “Jesus will fix it after a while” are common religious colloquialisms in the African American culture.
Coping strategies that are particularly important for survival include hope in the face of despair, joy, peace, and internal sources of resilience for overcoming illness, and oppression. The “I am not worrying about it” or “I ain’t claiming it” phrases used in the African American community are well-known practices for coping with diseases and distress. Furthermore, prayer is another coping mechanism and a practice for meaningful connection to a higher power. It is common that elders in the African American community often refer to this as “having a talk with God” (Parks, 2003).
Polzer and Miles’s (2005) research offered some additional insights into how spirituality affects the self-management of African Americans with diabetes. Using a grounded theory design, they identified three typologies: (a) relationship and responsibility—God is in background, (b) relationship and responsibility—God is in forefront, and (c) relationship and relinquishing of self-management—God is healer. These typologies varied according to how participants viewed their relationship with God and the impact of this relationship on their self-management practice (Polzer & Miles, 2005, 2007).
Similarly, Harvey and Cook (2010) provided information about the role of spirituality in the self-management of chronic illness among non-rural older women. Enrolling a sample of 41 African Americans and non-Hispanic White women, they identified four categories to suggest the influence of spirituality in behavior change and disease management: (a) God’s involvement in illness management, (b) prayer as a mediator, (c) spirituality as a coping mechanism, and (d) the combination of conventional and spiritual practices.
Much of the research on African Americans and spirituality was conducted in urban areas, and even fewer studies examine how African Americans find meaning and interpretation of colloquial terms frequently used within the context of their own culture, communities, and environment. Our study was interested in the phrase, “I ain’t claiming it,” which was used by Project SuGar (PS) research participants when discussing their “sugar diabetes.” Therefore, our study re-contacted some of PS research participants to explore the meaning of “I ain’t claiming it.”
Parent Study: Project SuGar (Sea Island Genetics African American Registry)
Project SuGar was designed as a community-based genetic research study initiated in 1995 to elucidate the genes responsible for the expression of diabetes and obesity among the Sea Islanders of South Carolina. The recruitment goal was to enroll 400
The research team consisted of five nurses who were hired from the local community and housed within the five Federally Qualified Community Health Centers. Recruitment was active with phone calls, face-to-face visits, and word of mouth. During the active recruitment phase of Project SuGar, the research team and nurses observed and recalled hearing the remark “I ain’t claiming it” from many patients when discussing their diabetes and shared observations during monthly research team meetings.
Conceptual Framework
Exploring culture within the context of this study is important because it allows us to view how people construct and use symbols and language to interpret their world. For example, did the observed frequency of “I ain’t claiming it” have any meaning or was it just an empty expression passed down through generations? We used the construct of culture and spirituality to gain an understanding of “I ain’t claiming it.” As a broad concept, culture is defined as a social context of observable patterns of behaviors that refer to societal beliefs, symbols, values, lifestyles, language, and patterns of adaptive behaviors. We chose to use culture as a concept because we wanted to view the
We used spirituality as a construct because research indicates that spiritual practices tend to improve coping skills and social support, foster feelings of optimism and hope, promote healthy behavior, reduce feelings of depression and anxiety, and encourage a sense of relaxation (McBride, Arthur, Brooks, & Pilkington, 1998). Moreover, w
To the best of our knowledge, this is the only study that is designed to explore the meaning of a colloquial phrase among the
Design
We designed a qualitative interpretive study to gain a deeper understanding, meaning, and interpretation of the colloquial expression “I ain’t claiming it” used by both rural and urban African Americans as it relates to diabetes care and management. The participants were part of a larger study Project SuGar that actively enrolled patients from 1996 to 2004. Our current study was interested in finding meaning to a local phrase used by the Project SuGar research participants and how the phrase was used within the context of the
Sample Characteristics: The Gullahs
Isolated communities of African-origin people are set in conditions for strengthening and maintaining African-influenced traditions, spirituality, values, and beliefs. The
Due to cultural and geographical isolation, the
The Sea Islanders believe that “we must understand nature, become a part of it, and not try to master it,” but let God do his work. Thus, among the
Our approach to research among this population included immersions into the
Method
We conducted an interpretive study using focus groups and key informants to find meaning and interpretation of the colloquial phrase, “I ain’t claiming it,” as it relates to diabetes self-management among an African American sub-culture known as
Sampling Frame/Recruitment
We used a purposeful sampling frame that included self-identified African American adults with and without diabetes. We were interested in the frequency and personal meaning of the phrase, so,we selected–Project SuGar participants with diabetes or with a family history of diabetes as well as some non research participants from Project SuGar.
The Institutional Review Board (IRB) approved the study and all participants signed an informed consent. Anonymity and confidentiality were provided as no identifying information was used in the interviews or transcripts. Our participants were recruited by the research assistant (RA) using both passive recruitment strategies such as targeted individual mailings to former Project SuGar participants and active strategies such as word of mouth and recruitment flyers to non–Project SuGar participants.
Data Collection
We collected data from five focus groups between 2008 and 2010 in rural and urban communities. Focus group sizes ranged from 5 to 12 adult African American men and women between the ages of 18 and 75 years. The focus group locations included rural churches (two), urban churches (two), and one rural African American senior citizen center.
Three informant interviews were conducted in the informants’ homes and results helped to inform the design of the focus group questions. The age range for informant interviewees was 68 to 93 years. All participants received a US $25.00 gift certificate to a supercenter retail chain store. The sessions were digitally recorded and later transcribed by a Health Insurance Portability and Accountability Act (HIPAA -approved professional transcriptionist agency. Data saturation was reached with the five focus groups.
Interview Guide
The interview guide was designed to uncover the meaning of the phrase, “I ain’t claiming it.” It was loosely organized around topics of living with diabetes. During discussion,the participants were asked, “What does the term I ain’t claiming it” mean to you?” The discussion focused on the term, which was placed on a large poster board. The principal investigator (PI) began with the following opening remark: When discussing their diabetes in the Project SuGar research study, lots of people would say, “I ain’t claiming it.” We know that this phrase means different things to different people. Please discuss whether you have heard the term, and please share what it means to you.
Data Analysis
A Qualitative Data Analysis (QDA) software tool using Microsoft Word® (Redmond, Washington) was used to create and format a table to manage, code, and analyze the data (LaPelle, 2004). The analysis process for this study was designed to discover rather than verify theory within contextual data. Text data were analyzed through the systematic classification process of coding and identifying themes or patterns (Creswell, 2002; Hsieh & Shannon, 2005; Strauss & Corbin, 1998). We used thematic analysis and constant comparison to identify patterns for understanding the meaning of “I ain’t claiming it.” Transcripts were read several times for accuracy and to identify themes and categories. We read line-by-line, identified discrete concepts/themes, and grouped them under labels. To address inter-rater reliability, three additional team members reviewed the coding of themes and addressed any conflicting points of view until group consensus was reached.
When new codes emerged, the coding frame changed. Using constant comparison, we were able to develop a list of coding categories relating to the phrase and categorized them during data reduction into two major themes (Hsieh & Shannon, 2005; see Table 1).
Core Themes.
Credibility and trust of the research team were enhanced through prolonged engagement with community members, that is, field trips, attending church services, observations, interviews, or discussions with participating and non-participating rural residents. Seeking knowledge from older rural and non-rural adults, ministers, family, and other formal and informal community leaders ensured dependability (Creswell, 2002; Hsieh & Shannon, 2005; Lincoln & Guba, 1985; Strauss & Corbin, 1998).
Results
Total number of participants was 52 (
Frequency and Use of the Term
In terms of frequency, almost all participants (
Themes From Analysis
Four themes emerged—acceptance, acknowledgment, denial, and passive. The research team collapsed the themes into the two major core themes described below: (a) acknowledgment of the disease and (b) denial of the disease. Two sub-themes were identified from the major themes with universal colloquial connotations: (a) acknowledgment/front seat driver and (b) denial/back seat rider. Both terms,
Discussion
Using qualitative data, we explored the meaning and frequency of a colloquial term, “I ain’t claiming it,” used among the Sea Island population when discussing “sugar” diabetes. Our findings were similar to Polzer and Miles’s (2007) in that our themes acknowledged both a partnership and a relationship with God but presented themselves as somewhat of a paradox because both acknowledgment and denial can be viewed as coping mechanisms. For example, back seat drivers can acknowledge an active relationship with God when they self-medicate because they combine practice with spirituality. One participant noted, “You claiming sickness on yourself. I ain’t claiming the worrying. When you claim it, you speaking it into existence.” Similarly, a front seat driver acknowledges an active partnership with God and assumes responsibility for self-management. “I claim it cause I want to do the right thing.” “I pray to God to help me manage my sugar.”
When viewed within the cultural and spiritual context, personal views on illness will help to define a personal relationship with God. One minister who participated in the focus group offered the following: “I think it can be positive or negative. I think it is negative when I know something is wrong with me and I say I’m not going to claim it as an excuse not to deal with it. There are certain realities that I have to deal with. On the other hand I think it can be positive when we believe and trust in God and we don’t allow things to worry us. I’m not going to claim the worrying of something. I’m not going to claim that. I think that is good. So I think it depends on how the person is using the terminology.”
Both themes/sub-themes are fueled by biblical origin with strong infusion of faith, which seems to be adaptive at first. For example, “if I put my trust in God, he will heal me, or I pray to God to show me the way.” Similarly, a quotation from the bible, “death and life are in the power of the tongue,” and “those who love it will eat its fruits,” Proverbs 18:21 (p. 624) and Matthew 21:22 (p. 904) (American Bible Society, KJV 1999), respectively, and “whatever you ask in prayer, you will receive if you have faith.” Oftentimes, during the discussions, participants’ statements implied a spiritual relationship with God. Remarks such as “I put it in God’s hand” may persist as denial, indicating a passive relationship with God, suggesting passive behavior and correlating with a lack of involvement in diabetes self-management.
Acknowledgment of the Disease: Front Seat Driver
We categorize acknowledgment of the disease as a front seat driver because the term indicates control or active behavior for steering a vehicle, personal involvement, and a position of power or dominance. Participants who are front seat drivers have an active partnership with God and acknowledge their disease. They take responsibility and assume more of a partner’s role with God in the background as a helper. Front seat drivers chose to sit in the front seat as equal partners in their care and have internal locus of control. They perceive their partnership with God as a source of support in their self-management practices. For example, in acknowledging the healing power and presence of God, one participant noted, “You gave me the knowledge to take care of myself.”
They trust the role of the provider because he or she was made in God’s image as “God gave them the knowledge.” Another participant noted, “So we’ve got to acknowledge that we are Christian, spiritual, yeah God gave us these people that we need to go to for better health, but if you just look to God and not look to each other then you are going to fail.”
Comments from some participants suggest acknowledgment in that health care providers are part of God’s creations and should be trusted as healers. A comment from one participant indicated “God works through doctors.”
Denial of the Disease: Back Seat Driver
Although back seat drivers sit in the back and give direction to the driver, they too have a relationship with God. Unlike front seat drivers, a back seat driver is a passenger who is not in control of the vehicle. He or she may not be able to drive,do not know causation of the disease does not trust own self to drive, and/or is uncomfortable with the skills needed to manage the disease. Similar to comments from Clark (2003), back seat drivers lack all three sets of tasks needed for self-management.
A back seat driver chooses to ride in the back seat and use his or her relationship with God to help manage his or her illness. They attribute their success with disease management to the work of the Lord. “God made me in his image and I cannot fail,” because “God is a healer.” However, a back seat rider is waiting for God to take control and God is acknowledged as the healer, or the fixer. In some instances, the back seat driver will become a passive rider and relinquish all care to God. For example, one participant said, “I am not going to claim it because I know that He is going to help me to overcome this thing through prayer.” This was also evident in the individual interviews, “God is the healer.”
Our participants’ comments were similar to work by other researchers who also reported that some African Americans view the physicians as the healer or the instrument through whom God administers healing (Abrums, 2000; Conner & Eller, 2004; Davis & Magilvy, 2000; Harvey & Cook, 2010; McAuley, Pecchioni, & Grant, 2000; Polzer & Miles, 2005).
However, unlike previous research, we discovered a level of personal participation in self-management among the participants who were categorized as denial back seat drivers. Although some indicated that they might not follow recommendations from their providers, they chose to participate in their care by using prayer and alternative medicines to treat their diabetes.
We noted very few participants who were passive riders and relinquished total control of their care to God. In fact, only two individuals (one rural/one urban) exhibited passive rider behaviors, with statements such as “God will cure my sugar,” “I do not believe it,” “I will not accept or acknowledge it,” “and I do not have sugar.” It is important to note that our participants’ comments on healing supported results from McAuley and colleagues’ (2000) statement that “there is a set of religious truths that do not require further investigation or analysis, and in a manner indicating that religious belief permeated their lives.”
Although both Polzer and Miles (2007) and Harvey and Cook (2010) presented more than two themes/categories, our study chose to interpret the term within the participants’ view or sense of their world. If we wish to understand culture, language, and human behavior, we must explore how people define, explain, or react to what they encounter in their environment because human beings act toward things on the basis of the meaning they have or learn from generations.
According to Blumer (1973), they sometimes ascribe their own meaning or accept what was passed down. “I ain’t claiming it” was passed down through the years and the meaning of the term varies among the users, and based on how it was passed down, it can invoke either positive or negative behaviors. You accept the disease and work with God as a partner, ask for help, or you relinquish control and/or care and view God as the fixer. At the foundation of African Americans’ worldview are values and principles such as belief in God and honoring the continuity of life by respecting kinship bonds, ancestors, and a communal way of life. Moreover, African Americans possess shared beliefs, values, and principles that may underlie and shape behaviors that are found in social relations (Blumer, 1973; Conner & Eller, 2004; Davis & Magilvy, 2000; J. Jones, 1991).
When viewed within the African culture context, especially the
Children are born hearing phrases and learn to give meaning to them based on interaction with their elders. So when they hear “I ain’t claiming it” from their elders, and view their behaviors (passive or active), their responses later in life may mirror or model what was passed down. They may internalize, ascribe their own meaning, or refuse to accept what was passed down. Thus, phrases such as “I ain’t claiming it” may be lost. Nonetheless, these meanings are modified through an interpretive process, and interpretation of the meaning will guide and determine action that may result in tangible resources and/or improved diabetes self-management.
Limitations
This study was conducted among African Americans residing in South Carolina and may not be generalizable to other rural or urban African American populations. Some of the questions in the instrument contained loaded barrel questions. For example, the researcher could have asked, or added for clarity, “If you heard the term, yes or no? If yes, do you use it? Describe what it means to you. If no, have you heard other people use it? Do you use it? Why do you use it?” Future research questions could include a comparative analysis of the meaning between rural and urban African Americans. In addition, future research should include the impact of front seat driver and back seat driver behavior on diabetes self-management, glycemic control, and incidence of complications.
Conclusion
Isolated from the mainland for many years, the
Acknowledging the support of patients’ spiritual beliefs is more appropriate than ignoring it especially if it improves self-management skills. Although health care providers may find it unethical or inappropriate to discuss spirituality or religious issues, they could enhance delivery of culturally sensitive care by understanding that these phrases may be used by participants as a coping mechanism and can help to improve health outcomes and reduce complications.
Although many are still using “I ain’t claiming it,” the phrase may have lost its connotation to some and may be cited without meaning. Nonetheless, because it is embedded in the culture, embraced by many, spoken across disciplines and illness, these culturally appropriate strategies should not be used to stigmatize populations, but instead used to improve diabetes self-management and health outcomes.
