Social Work in Public Health, 30:250–259, 2015 Copyright q Taylor & Francis Group, LLC ISSN: 1937-1918 print/1937-190X online DOI: 10.1080/19371918.2014.994724
Health Literacy as a Process: Caseworker Perspectives on HIV Health Literacy Lauren Brinkley-Rubinstein, Magaela Bethune, and Bernadette Doykos Department of Human and Organizational Development, Vanderbilt University, Nashville, Tennessee, USA
Health status and health literacy are interrelated. Previous research suggests that this relationship must be considered when providing services to HIV positive individuals. However, the pathways through which health literacy affects HIV remain unclear. This study seeks to understand the connections between health literacy and HIV from a caseworker perspective. Results suggest that caseworkers reject static definitions of health literacy by conceptualizing it as an emergent process. Caseworkers also expressed the need for development of subcomponents upon which health literacy is founded: (a) the building of trust, and (b) understanding clients’ hierarchy of needs. Keywords: Health literacy, HIV, social service delivery, case management
There is a demonstrated link between health literacy, HIV outcomes, and antiretroviral adherence. However, the distinct pathways via which health literacy affects HIV remain unclear. Social factors (e.g., stigma) can act as mediators between HIV medical care and health literacy, but research exploring the relationships between other contextual factors and health literacy is limited (Waite, Paasche-Orlow, Rintamaki, Davis, & Wolf, 2008). Also, though the importance of health literacy is well established, it is often exclusively conceptualized at the individual level, leaving questions regarding the power of health literacy and the influence of social and environmental factors on its development. As such, some scholars have pointed to the need to understand how an individual’s multiple social environments (e.g., home, work, and neighborhood) influence the development of health literacy (Lee, Arozullah, & Cho, 2004). This is especially relevant to HIV-positive populations, as research has shown the important role that contextual factors play in HIV contraction, transmission, and maintenance (Shriver, Everett, & Morin, 2000). To better understand the impact of context on health literacy, this study explores caseworkers’ perceptions of how health literacy affects HIV-positive clients. Specifically, the research questions guiding this study are (a) How do caseworkers understand the role of health literacy in the maintenance of the health of HIV positive clients? and (b) What factors do caseworkers identify as inhibiting or fostering the development of health literacy among HIV-positive individuals? We employ qualitative methods to examine these questions in depth.
Address correspondence to Lauren Brinkley-Rubinstein, MA, MS, Peabody College, Department of Human and Organizational Development, Vanderbilt University, 230 Appleton Place, Peabody #90, Nashville, TN 37204, USA. E-mail: [email protected]
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THE IMPACT OF HEALTH LITERACY Health literacy can have a positive impact on the health status of individuals (Kalichman & Rompa, 2000; Lee et al., 2004). Although there are several definitions of the term, health literacy is widely described as the capacity of an individual to function in the healthcare environment—depending upon characteristics at the individual and systemic level (Nutbeam, 2000). Nutbeam (2000) stressed that an individual is in a “dynamic state” during a health care encounter, in that the specifics of an individual’s interaction with the health care system will rarely be identical from one visit to the next. As a result, health literacy depends on the intersection of a number of factors related to the medical issue being treated, the health care provider, the individual, and the health care system (Baker, 2006). However, much of the current health literacy scholarship focuses exclusively on health knowledge as a proxy for health literacy, often noting a relationship between disease-related knowledge and health status (Alm-Roijer, Stagmo, Uden, & Erhardt, 2004). Despite the prevalence of research equating health literacy with knowledge and the subsequent evidence of the link between knowledge and health, expanded interpretations can lead to broader implications. The Institute of Medicine recognizes that health literacy comprises several components, including cultural and conceptual knowledge, oral literacy (e.g., the ability to speak and listen), print literacy, and numeracy (Baker, 2006). Using this more inclusive operationalization of health literacy, research has demonstrated a link between increases in overall literacy and enhanced ability to understand one’s condition (for a comprehensive review see the Health Literacy Interventions and Outcomes, 2011). The advent of “public health literacy” attempts to refocus the health literacy lens on the community level (Freedman et al., 2009). However, even when conceptualizations of health literacy transcend the individual level, the way health literacy is often incorporated into interventions and programs is limited as they are often designed from the top down with little attention or input given to health care workers in the field or individuals living in targeted communities (Huber, Shapiro, & Gillaspy, 2012). Therefore, this study adds to the existing literature by examining how community-level factors affect health literacy via caseworker perspectives shared during a series of one-on-one interviews. This study’s qualitative approach facilitated opportunities for uncovering important nuances in the participants’ understanding of health literacy and led to a number of important findings.
METHOD This study took place in a midsize, southeastern city in the United States. At the end of 2008, an estimated 3,753 people had received an HIV/AIDS diagnosis in the surrounding county, accounting for one fourth of the HIV-positive population in the entire state (Brinkley-Rubinstein, 2010). A qualitative approach, including 13 one-on-one interviews with caseworkers at a local AIDS Service Organization (ASO) was utilized. The ASO was founded in 1997 as a mobile outreach agency and has a specific focus on the most vulnerable populations affected by HIV, including youth, drug users, incarcerated persons, sex industry workers, and those engaged in other high-risk activities. The ASO is located in the largest federally subsidized housing project in the city and serves approximately 1,000 clients per year, the majority of whom are African American. Sample and Recruitment The authors and the executive leadership at the ASO conceived this study collaboratively. Once the research aims were established, the research team contacted all staff members, offering the
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opportunity to participate in an in-depth interview that investigated their perceptions related to health literacy. The caseworkers were initially introduced to the study via e-mail, which included a description of the study, the major aims, and a statement that participation in the study was absolutely voluntary. All potential participants were told that if they wished to decline participation there would be no repercussions, and that all study activities would be conducted independent of ASO leadership, meaning their decision regarding participation and all data would remain confidential. A researcher met with each possible participant individually during the consent process and reiterated the purpose and goals of the study. The authors briefed each participant on his or her rights, including the possibility to cease participation at any point. All caseworkers consented, and none opted out of the study at any point. There were no incentives offered for participating, but the authors provided the ASO with a summary of the results and ongoing training around health literacy interventions. Institutional Review Board approval of study procedures was attained prior to the commencement of the study. The final sample included 13 caseworkers, representing a 100% response rate. The participants were mostly African American (77%) and female (77%). A small number of the caseworkers were peers who were also HIV-positive. Participants performed a large number of official roles at the ASO (e.g., early intervention specialist, outreach worker, peer case manager), but all of them interacted with multiple clients on a daily basis. Research Design To address the central research questions, the data collection consisted of one-to-one semistructured interviews. We chose a qualitative approach due to a number of issues identified prior to the beginning of data collection. The authors contemplated elements of the research design that may impact participants, including (a) the layout of the research site and the sensitivity of other operations that take place at the ASO, (b) the limited time afforded to staff for participation and the complex demands of their schedules, (c) the sensitivity of the information that might be shared in interviews, and (d) the need to prioritize privacy and confidentiality, as participants may possibly comment on contextual factors relative to their workplace. Data Collection Interviews took place in private, enclosed offices with only the interviewer and participant present. Prior to the interview, each participant provided basic demographic information including his or her position title, race, and gender. The interviews were guided by a semistructured interview protocol, which provided ample opportunity for participants to discuss their experiences with and their understanding of health literacy in the context of their work with HIV-positive clientele (see Table 1 for example questions). The topics discussed included conceptualization of health literacy, the relationship of health literacy to health, what role health literacy plays in medical and social care engagement, how health literacy is mediated by social issues, and strategies for increasing health TABLE 1 Excerpt from Semistructured Interview Protocol Q1. Initial Question What does health literacy mean to you? Q2. How does the ability to obtain, process, and understand basic health information affect health? Q3. Does the ability to obtain, process, and understand basic health information play a role in an individual’s engagement in care? Probes: What aspects of care? What does “health literacy” have to do with engagement in care?
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literacy. Probes were incorporated throughout the interview to facilitate discussion around health literacy, its promotion, and its impact. Interviews lasted approximately one hour. The information conveyed by the caseworkers offers a new lens to understand health literacy and its development within diverse contexts. By generating comprehensive understanding and obtaining thick descriptions of health literacy related to HIV care specifically, the authors aim to formulate propositions and provide a foundation for research in this important field (Lewis, 2009). To enhance validity and reliability, the authors engaged in peer debriefing in which a colleague familiar with the data reviewed interview tools, transcripts, and analysis throughout the research process. Data Analysis In qualitative research, data collection and data analysis occur simultaneously. For the purpose of this study, data analyses were guided by a grounded theory approach, which allowed for the data to be formulated into concepts and categories (Charmaz, 2006; Glaser, 1978). Each of the authors has extensive training and experience in qualitative research methods and engaged in the data analysis for this study. Nvivo 9 was used to organize and categorize all data. The analysis process followed a several-step progression. First, transcribed data was read for participant responses that dealt with similar topics. Analysis of interview data then proceeded inductively through the identification of recurring themes and patterns in transcripts, field notes, and analytic memos (Charmaz, 2006). Meaningful analytical units were then developed through a coding scheme. Topics were divided into several subtopics based on recurring themes, allowing more in-depth analysis and complex understanding and interpretation of each. Themes and subthemes were then assigned a code, and the codes were compiled in a codebook. The researchers then clarified the codes’ definitions and ensured that all codes fit into a structure with meaningful and salient interrelations and distinctions among them. Transcripts were coded by two different research team members, and 90% inter-rater reliability was required and achieved (Gwet, 2012). The resulting data were then utilized to examine the specific research questions guiding the proposed study.
RESULTS Data analysis illuminated several important themes around service providers’ conceptions of HIV health literacy and how it affected clients. First, we highlight how participants reject traditional notions of health literacy by conceptualizing it as a dynamic, emergent process as opposed to a static outcome. Health Literacy as a Process Throughout the interviews, caseworkers emphasized the importance of the development of health literacy specific to the conditions and experiences unique to HIV. One participant noted: An individual is more apt to go into a clinical setting and talk about what is going on when they understand what is going on. If I don’t understand, I don’t want to go to the doctor’s office and look like an idiot, or like a fool, or like I don’t know what I’m talking about. Whereas, if I was health literate, I could come in and exactly articulate what is going on with m.
This caseworker conceptualized health literacy as more than a type of expertise to be transferred from caseworker to client; rather, this participant’s definition of health literacy stresses that health literacy is a process. In the following example, another caseworker likens the processes of coming to terms with one’s diagnosis and developing health literacy to the emergent recovery of an addict:
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That’s all 12-Step programs are when you think about it, AA [Alcoholics Anonymous], CA [Cocaine Anonymous], NA [Narcotics Anonymous], it’s huge. All it is is getting the information, you walk in, they give you a book, they get you peer-to-peer, they set you up with a sponsor, and then it goes on from there. It takes about a year. It reaches your ears, your head, and then travels down, and you finally receive it in your heart. You begin to change.
In this quotation, the participant relates 12-Step programs to health literacy development and illustrates that giving individuals the necessary information to manage their condition effectively is just one step in an ongoing process. For health literacy to inform behaviors and routines, the individual must relate how such actions affect short- and long-term health outcomes; clients must be in a place where they can make sense of and apply such information. Thus, it is important for the caseworker to understand where the client is in this process and tailor approaches to developing health literacy appropriately. For example, delivering informational materials to the client does not ensure that he or she will read them and become familiar with the information provided. The Foundations of Health Literacy A second major finding of this study involved the need for iterative development of several subcomponents upon which health literacy is founded. Caseworkers identified two critical components necessary to development of health literacy: (a) trust, which includes engagement in commitment acts and acknowledging a client’s multiple social identities and (b) understanding the hierarchy of needs that a client might have. Establishment of Trust Many caseworkers identified the importance of trust in creating a productive relationship through which individuals could access and understand the information required to maintain their health. Given the complexity of HIV and its treatment, caseworkers stressed that health literacy is accumulated over time and develops as related to a variety of concurrent variables, such as community context, comorbid diagnoses, and sense of support. Therefore, the caseworkers cited the importance of establishing a connection or relationship with the client that provides the foundation for developing HIV health literacy. Once the relationship between relevant actors has been established, there is a foundation set, allowing for the development of health literacy and empowering the client. One caseworker stated: Yeah, I think it’s a process once you get people engaged. Because once you get them to receive the information, they hear it, and they are going to want to be engaged most of the time. It’s just a part of healing, once they get the information, and they get to a point of healing, and then engage them to get the health information out there.
This quote demonstrates that the development health literacy requires an initial connection or relationship between the client and caseworker. After rapport is established, a caseworker is better able to assess the client’s capacities to understand and use various types of health-related materials. Similarly, a client is increasingly likely to reveal sensitive information that may inform the best ways to develop health literacy. For example, one caseworker explains: And I think we waste a lot of time, money, and energy on paper – giving out health literacy [materials]. Paper is a waste of time. Half of my clients can’t read, much less throw them out a pamphlet. Pamphlets are useless to me. Well, not totally. There’s maybe 10% of the population that will pick up a pamphlet, read it, and get something out of it. So I can’t say it’s totally useless. But I think to promote health literacy and really get it out there; it takes more than paper and pamphlets. It takes contact . . . personal contact. It’s time and effort. It’s tiring and it’s more than sitting around table gathering information, putting it in a pamphlet or book and putting it on a shelf.
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This quote demonstrates how important it is for a caseworker to understand clients’ strengths and weaknesses and subsequently accommodate them when working with the client to develop health literacy. In this example we see that if a client cannot read, administering health literacy information purely through written materials will have null net impact; however, a client may not reveal that he or she is unable to read in a one-time meeting. The nature of the relationship between the client and the provider dictates how health literacy is best delivered and absorbed. Another quote further illustrates the importance of establishing trust: Sometimes, you look at it and you sit there and think to yourself, or you can hear it: “They not from where I’m from, so they don’t understand.” Because you hear that [from clients]. But I can be sitting there talking to them [as an African American woman] and telling them the same exact thing and I have their undivided attention. It is just the way that I express it and my inflection – they relate to it. They relate to the way I move. That’s cultural. That is clearly cultural. It is different when it’s coming from something that you recognize. There’s a sense of security and familiarity.
In this example, there were apparent identity markers shared by the caseworker and the client that facilitated a sense of trust and familiarity. Through that sense of commonality, the caseworker felt as if she was able to share health literacy information in a culturally relevant way. This example also alludes to the complicated, clinical language of many health-related materials, which may serve as a barrier to health literacy development. In contrast, the caseworker found that through a shared language and communication style, information and resources were more effectively transmitted to the client. Acknowledgment and Connection with Multiple Social Identities Several caseworkers expressed that it is important to acknowledge and connect with the multiple social identities that a client may have to develop trust foster the development of health literacy. For instance, a caseworker stated: [I]f I come with just, “Hear the information,” it will never equal the whole. But when I put the information, the style, and the inflection, the things that I have control over, then I can get through to the client.
An understanding of the clients’ cultural background, the particular obstacles that they face in their daily lives, and their health histories aided caseworkers in developing trust and tailoring the delivery of health literacy. Many caseworkers noted the importance of understanding the intersections of clients’ multiple identities. For example, one participant stated: [L]ike, I’m Black. I can’t change that. And I am addressing Black people. That cannot be changed. But what can be changed . . . you have different communities of Black people! You got the community in the projects, you have the middle class Black community, and you got the upper middle class Black community. And each one of them require a different expression, and you have to be able to know that expression.
In this quote it becomes clear that cultural relevance goes beyond race alone, and that caseworkers must try to find overlapping and shared identities with their clients while engaging in conversations related to health literacy. Commitment Acts In addition to acknowledging the importance of understanding a client’s overlapping social identities, caseworkers also suggested that commitment acts were necessary to develop trust among clients. Commitment acts, as defined by Feldman, Bell, and Berger (2003), are those activities that a caseworker may partake in that are not necessarily related to the tasks listed in a formal job description. Often when engaging in commitment acts, the caseworker cannot know if these activities will yield any “empirical payoff,” but engaging in these more informal actions can
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demonstrate the caseworker’s investment in their relationship with the client. Commitment acts may help to break down the power dynamics traditionally inherent to the caseworker –client relationship. For example, one caseworker explained: [Y]ou’ve got to get them comfortable and wanting to speak with you first before they hear anything you tell them. I can walk up to you and hand you a pamphlet about health literacy and you take it and sit it on the table and never look at it. So have I really given you any education? I haven’t. I’ve handed you a pamphlet, so therefore, I say I’ve given you education, but if you never read it, I haven’t given you anything. If I sit down and I talk to you and I say, “Hey, let’s go to lunch. Let’s take two hours at the Social Security office, but let me take the long way home instead of the short way home.” And ask you, “What did you do over the Thanksgiving holiday? Who’s your best friend?”
This quote captures the potential of seemingly tangential and, at times time-intensive, interactions in engaging with the client in a meaningful way. These interactions help caseworkers broaden their understanding of the clients’ lives beyond the context of their traditional exchanges at the ASO. Another caseworker described the importance engaging in commitment acts: Me getting out there. Me reaching out to them and letting them know, “Hey, we are here to help.” If I need to come pick them up and take them, it’s transportation. It’s maybe even dishing money out of your own pocket to give them where they need to go. And you got to get them a bus pass. Whatever you got to do to reach out to these clients to get them. That’s all that matters.
Through commitment acts, caseworkers were able to create connections and build trust with their clients. Another caseworker illustrates the importance of engaging in these types of interactions: When you build trust, [clients] call you no matter what. I have a client who is homeless and sometimes stays at his mom’s house. If he needs me and if he doesn’t have money to pay his cell phone bill, I’ll stop by his house. But, if he’s not there, he always calls me. And then I knew he was looking for a job so I hooked him up with somebody. Every time he calls me, I have something for him. If he needs a ride to get a bus pass from another ASO, I’ll take him.
Repeatedly, caseworkers cited the need to build trust by engaging in tasks that may be outside of the typical caseworker job description. In combination, engaging in commitment acts and understanding each client’s unique social identities aided in the establishment of trust, and, thus, provided the foundation on which the development of health literacy could be built. Understanding and Assessing Hierarchy of Needs A second important step in the health literacy process, illuminated by the data, was the need to prioritize other social issues that relate to health literacy but may also act as barriers to its advancement. For example, a caseworker stated: It’s a prioritization. If we dealt with the wealthy population in [the city], I’m sure they would be more health literate. Because, they’re not worried about housing, nutrition, about am I going to get beat up tonight or mugged tonight. Or am I going to have to sleep in this park on this bench. Or am I going to have to agree to do drugs with somebody before I can have a place to lay my head.
This quote captures the array of issues that clients face in their multiple environments that may threaten their development of health literacy. Below two specific examples are provided that further highlight how contextual issues can mediate a client’s health literacy development. The first example is a hypothetical scenario provided by a caseworker that elucidates how stigma can affect health literacy development: If I live in a small community and I have an issue. I have to go to this particular place, but some of the people there know . . . me . . . my family . . . my community members. I’m less apt to go up in there. And that’s whether I have the information or not. I’m less apt to come up in there. A lot, especially if you
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look down in the urban community . . . the projects . . . a lot of them don’t have access [to care]. Some of them have [state subsidized health care], so they have access, to a degree. But then you have a lot that work that cannot afford family health insurance and pay their bills. It’s just not going to happen.
The awareness of the impact of stigma, as illustrated by the above quote, was heightened by the fact that the ASO is situated in a public housing community and, thus, surrounded by several homes where people that the clients might know live. Similarly, but highlighting a different set of issues that may affect health literacy, a caseworker discusses the factors that may inhibit the development of health literacy after someone is released from prison: Again, until you’re able to touch their hearts, you haven’t given them information. I’ve worked a lot with people coming out of prison. They don’t even come out of survival mode until their most basic needs are met. Until you can bring them to a place that they feel safe, they’re not hearing anything you give them. It’s not reaching their heads . . . it’s reaching their ears. I don’t even think it goes to their brains, because their brains are consumed with, “I’ve got to have food. I’ve got to have shelter. I’ve got to have safety. I’ve got to stay out of prison. I don’t want to go back.”
Together, these two quotes illustrate that clients often have social issues or circumstances that mitigate health literacy advancement. In combination, they highlight the importance of caseworkers in establishing an ongoing understanding, prioritizing, and addressing of client needs as an important step in the health literacy process. Due to multiple stressors, many clients’ lives may be in flux and transmission of health-related messages must be flexible to accommodate ongoing changes. It is important for caseworkers to create an awareness of the complex realities of clients’ lives to be able to appropriately deliver health literacy materials in a way that maximizes the potential impact on individual’s subsequent understanding and behaviors.
DISCUSSION Findings from this study illustrate that HIV health literacy should be conceptualized and operationalized as a process rather than a static outcome in which knowledge is transmitted from caseworker to client. Interviews with caseworkers demonstrated trust between caseworker and client must be established before health literacy development can begin and that engaging in commitment acts and understanding and assessing the client’s hierarchy of needs are essential to building rapport. Previous research has highlighted the importance of developing trust and rapport between clients and professionals in health care settings (Andersen, Smereck, Hockman, Ross, & Ground, 1999; Dinc¸, L., & Gastmans, 2012; Gilson, 2005; Mancuso, 2010; Nutbeam, 2008; Thiede, 2005). However, as noted by Alexander and Charles (2009) willingness on the part of the caseworker to engage in a reciprocal relationship with the client goes against practice norms that warn against the development of dual relationships—calling attention to the need to develop social work training materials that provide guidance on the development of rapport between caseworker and client. Additionally, despite the existing literature that acknowledges the importance of trust, our findings demonstrate that trust is not important only because it enhances the relationship between practitioner and patient, but because it also allows for caseworkers to have a more complete understanding of the contextual surroundings that may mediate how patients are able to receive and develop health literacy. Our findings also support previous scholarship that demonstrates the importance of cultural connections in service delivery. Zarcadoolas, Pleasant, and Greer (2009) advanced the notion of “cultural literacy” as a main component of health literacy. This involves understanding the populations that are being targeted for health literacy intervention, and our findings echo the need for culturally responsive caseworkers. Rikard, Thompson, Head, McNeil, and White (2012)
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suggested development of HIV health literacy programs must include community members in collaboration with organizations and that health literacy information must be culturally tailored and viewed through a multidimensional lens. Thus, a practical approach to ensuring community participation and the development of culturally relevant interventions that utilize creative venues and recognize the impact of multiple social factors are needed. Caseworkers’ conceptualization of health literacy as a process is a significant finding of this study that has broad implications in that attempts to foster health literacy must be iterative and in concert with a recognition that contextual factors can affect an individual’s ability to uptake health information. Nutbeam (2008) stressed the importance of modifying commonly used health literacy measures to assess an individual’s capacity to “gain access to age and context specific information from a variety of sources, discriminate between sources of information, understand and personalize health information that has been obtained, and appropriately apply relevant health information for personal benefit” (p. 2076). This, Nutbeam (2008) contended, is necessary if we are to gain in-depth knowledge about how people interpret and use health information to enhance health promotion. Our results support Nutbeam’s (2008) suggestions, and we assert that measures of health literacy and caseworker practice be extended to assess the contextual, social factors that are be related to the ability to develop health literacy. This could take the form of routinized check-ins with clients about what challenges they may be currently facing (via an inventory or questionnaire) or the development of health literacy strategies that are appropriate for different stages of understanding. Whatever shape resultant innovations take, however, it is necessary that they are employed in an ongoing way, over time with an explicit focus on how health literacy might change dependent on a confluence of multiple factors.
LIMITATIONS AND FUTURE RESEARCH Although this study does make an important contribution to research on health literacy, it is not without limitations. This study is qualitative in nature, and thus, the results reported herein are not widely generalizable. Instead, our findings provide a snapshot of how health literacy is conceptualized by a subset of caseworkers working in an inner-city, midsized, Southeastern city. Quantitative research that examines the association between health literacy, social factors, and proximal predictors of health is needed to shed light on which community-related variables have the most impact on the relationship between HIV outcomes and health literacy. Continued research should build on the framework revealed via this study, as individual outcomes must be considered in relation to broader social contexts. Finally, some of the results may be informed by the setting in an urban city in the American South. Further research is needed to understand if the issues are the same regardless of geographic location. For instance, a followup study might examine whether caseworkers in a rural area conceptualize health literacy in the same way.
CONCLUSION Research has shown that health literacy can affect the health outcomes of HIV-positive individuals. However, health literacy is often conceptualized as knowledge that is transmitted from person to person in static situations. Our findings demonstrate that health literacy is a process and that key foundational components must be satisfied for health literacy to develop. Health literacy interventions should aid in the iterative assessment of health understanding and recognize the importance of trust, fostered by cultural awareness and commitment acts, and a multiple life stressors in developing long-term HIV health literacy.
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Health Literacy as a Process: Caseworker Perspectives on HIV Health Literacy Lauren Brinkley-Rubinstein, Magaela Bethune, and Bernadette Doykos Department of Human and Organizational Development, Vanderbilt University, Nashville, Tennessee, USA
Health status and health literacy are interrelated. Previous research suggests that this relationship must be considered when providing services to HIV positive individuals. However, the pathways through which health literacy affects HIV remain unclear. This study seeks to understand the connections between health literacy and HIV from a caseworker perspective. Results suggest that caseworkers reject static definitions of health literacy by conceptualizing it as an emergent process. Caseworkers also expressed the need for development of subcomponents upon which health literacy is founded: (a) the building of trust, and (b) understanding clients’ hierarchy of needs. Keywords: Health literacy, HIV, social service delivery, case management
There is a demonstrated link between health literacy, HIV outcomes, and antiretroviral adherence. However, the distinct pathways via which health literacy affects HIV remain unclear. Social factors (e.g., stigma) can act as mediators between HIV medical care and health literacy, but research exploring the relationships between other contextual factors and health literacy is limited (Waite, Paasche-Orlow, Rintamaki, Davis, & Wolf, 2008). Also, though the importance of health literacy is well established, it is often exclusively conceptualized at the individual level, leaving questions regarding the power of health literacy and the influence of social and environmental factors on its development. As such, some scholars have pointed to the need to understand how an individual’s multiple social environments (e.g., home, work, and neighborhood) influence the development of health literacy (Lee, Arozullah, & Cho, 2004). This is especially relevant to HIV-positive populations, as research has shown the important role that contextual factors play in HIV contraction, transmission, and maintenance (Shriver, Everett, & Morin, 2000). To better understand the impact of context on health literacy, this study explores caseworkers’ perceptions of how health literacy affects HIV-positive clients. Specifically, the research questions guiding this study are (a) How do caseworkers understand the role of health literacy in the maintenance of the health of HIV positive clients? and (b) What factors do caseworkers identify as inhibiting or fostering the development of health literacy among HIV-positive individuals? We employ qualitative methods to examine these questions in depth.
Address correspondence to Lauren Brinkley-Rubinstein, MA, MS, Peabody College, Department of Human and Organizational Development, Vanderbilt University, 230 Appleton Place, Peabody #90, Nashville, TN 37204, USA. E-mail: [email protected]
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THE IMPACT OF HEALTH LITERACY Health literacy can have a positive impact on the health status of individuals (Kalichman & Rompa, 2000; Lee et al., 2004). Although there are several definitions of the term, health literacy is widely described as the capacity of an individual to function in the healthcare environment—depending upon characteristics at the individual and systemic level (Nutbeam, 2000). Nutbeam (2000) stressed that an individual is in a “dynamic state” during a health care encounter, in that the specifics of an individual’s interaction with the health care system will rarely be identical from one visit to the next. As a result, health literacy depends on the intersection of a number of factors related to the medical issue being treated, the health care provider, the individual, and the health care system (Baker, 2006). However, much of the current health literacy scholarship focuses exclusively on health knowledge as a proxy for health literacy, often noting a relationship between disease-related knowledge and health status (Alm-Roijer, Stagmo, Uden, & Erhardt, 2004). Despite the prevalence of research equating health literacy with knowledge and the subsequent evidence of the link between knowledge and health, expanded interpretations can lead to broader implications. The Institute of Medicine recognizes that health literacy comprises several components, including cultural and conceptual knowledge, oral literacy (e.g., the ability to speak and listen), print literacy, and numeracy (Baker, 2006). Using this more inclusive operationalization of health literacy, research has demonstrated a link between increases in overall literacy and enhanced ability to understand one’s condition (for a comprehensive review see the Health Literacy Interventions and Outcomes, 2011). The advent of “public health literacy” attempts to refocus the health literacy lens on the community level (Freedman et al., 2009). However, even when conceptualizations of health literacy transcend the individual level, the way health literacy is often incorporated into interventions and programs is limited as they are often designed from the top down with little attention or input given to health care workers in the field or individuals living in targeted communities (Huber, Shapiro, & Gillaspy, 2012). Therefore, this study adds to the existing literature by examining how community-level factors affect health literacy via caseworker perspectives shared during a series of one-on-one interviews. This study’s qualitative approach facilitated opportunities for uncovering important nuances in the participants’ understanding of health literacy and led to a number of important findings.
METHOD This study took place in a midsize, southeastern city in the United States. At the end of 2008, an estimated 3,753 people had received an HIV/AIDS diagnosis in the surrounding county, accounting for one fourth of the HIV-positive population in the entire state (Brinkley-Rubinstein, 2010). A qualitative approach, including 13 one-on-one interviews with caseworkers at a local AIDS Service Organization (ASO) was utilized. The ASO was founded in 1997 as a mobile outreach agency and has a specific focus on the most vulnerable populations affected by HIV, including youth, drug users, incarcerated persons, sex industry workers, and those engaged in other high-risk activities. The ASO is located in the largest federally subsidized housing project in the city and serves approximately 1,000 clients per year, the majority of whom are African American. Sample and Recruitment The authors and the executive leadership at the ASO conceived this study collaboratively. Once the research aims were established, the research team contacted all staff members, offering the
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opportunity to participate in an in-depth interview that investigated their perceptions related to health literacy. The caseworkers were initially introduced to the study via e-mail, which included a description of the study, the major aims, and a statement that participation in the study was absolutely voluntary. All potential participants were told that if they wished to decline participation there would be no repercussions, and that all study activities would be conducted independent of ASO leadership, meaning their decision regarding participation and all data would remain confidential. A researcher met with each possible participant individually during the consent process and reiterated the purpose and goals of the study. The authors briefed each participant on his or her rights, including the possibility to cease participation at any point. All caseworkers consented, and none opted out of the study at any point. There were no incentives offered for participating, but the authors provided the ASO with a summary of the results and ongoing training around health literacy interventions. Institutional Review Board approval of study procedures was attained prior to the commencement of the study. The final sample included 13 caseworkers, representing a 100% response rate. The participants were mostly African American (77%) and female (77%). A small number of the caseworkers were peers who were also HIV-positive. Participants performed a large number of official roles at the ASO (e.g., early intervention specialist, outreach worker, peer case manager), but all of them interacted with multiple clients on a daily basis. Research Design To address the central research questions, the data collection consisted of one-to-one semistructured interviews. We chose a qualitative approach due to a number of issues identified prior to the beginning of data collection. The authors contemplated elements of the research design that may impact participants, including (a) the layout of the research site and the sensitivity of other operations that take place at the ASO, (b) the limited time afforded to staff for participation and the complex demands of their schedules, (c) the sensitivity of the information that might be shared in interviews, and (d) the need to prioritize privacy and confidentiality, as participants may possibly comment on contextual factors relative to their workplace. Data Collection Interviews took place in private, enclosed offices with only the interviewer and participant present. Prior to the interview, each participant provided basic demographic information including his or her position title, race, and gender. The interviews were guided by a semistructured interview protocol, which provided ample opportunity for participants to discuss their experiences with and their understanding of health literacy in the context of their work with HIV-positive clientele (see Table 1 for example questions). The topics discussed included conceptualization of health literacy, the relationship of health literacy to health, what role health literacy plays in medical and social care engagement, how health literacy is mediated by social issues, and strategies for increasing health TABLE 1 Excerpt from Semistructured Interview Protocol Q1. Initial Question What does health literacy mean to you? Q2. How does the ability to obtain, process, and understand basic health information affect health? Q3. Does the ability to obtain, process, and understand basic health information play a role in an individual’s engagement in care? Probes: What aspects of care? What does “health literacy” have to do with engagement in care?
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literacy. Probes were incorporated throughout the interview to facilitate discussion around health literacy, its promotion, and its impact. Interviews lasted approximately one hour. The information conveyed by the caseworkers offers a new lens to understand health literacy and its development within diverse contexts. By generating comprehensive understanding and obtaining thick descriptions of health literacy related to HIV care specifically, the authors aim to formulate propositions and provide a foundation for research in this important field (Lewis, 2009). To enhance validity and reliability, the authors engaged in peer debriefing in which a colleague familiar with the data reviewed interview tools, transcripts, and analysis throughout the research process. Data Analysis In qualitative research, data collection and data analysis occur simultaneously. For the purpose of this study, data analyses were guided by a grounded theory approach, which allowed for the data to be formulated into concepts and categories (Charmaz, 2006; Glaser, 1978). Each of the authors has extensive training and experience in qualitative research methods and engaged in the data analysis for this study. Nvivo 9 was used to organize and categorize all data. The analysis process followed a several-step progression. First, transcribed data was read for participant responses that dealt with similar topics. Analysis of interview data then proceeded inductively through the identification of recurring themes and patterns in transcripts, field notes, and analytic memos (Charmaz, 2006). Meaningful analytical units were then developed through a coding scheme. Topics were divided into several subtopics based on recurring themes, allowing more in-depth analysis and complex understanding and interpretation of each. Themes and subthemes were then assigned a code, and the codes were compiled in a codebook. The researchers then clarified the codes’ definitions and ensured that all codes fit into a structure with meaningful and salient interrelations and distinctions among them. Transcripts were coded by two different research team members, and 90% inter-rater reliability was required and achieved (Gwet, 2012). The resulting data were then utilized to examine the specific research questions guiding the proposed study.
RESULTS Data analysis illuminated several important themes around service providers’ conceptions of HIV health literacy and how it affected clients. First, we highlight how participants reject traditional notions of health literacy by conceptualizing it as a dynamic, emergent process as opposed to a static outcome. Health Literacy as a Process Throughout the interviews, caseworkers emphasized the importance of the development of health literacy specific to the conditions and experiences unique to HIV. One participant noted: An individual is more apt to go into a clinical setting and talk about what is going on when they understand what is going on. If I don’t understand, I don’t want to go to the doctor’s office and look like an idiot, or like a fool, or like I don’t know what I’m talking about. Whereas, if I was health literate, I could come in and exactly articulate what is going on with m.
This caseworker conceptualized health literacy as more than a type of expertise to be transferred from caseworker to client; rather, this participant’s definition of health literacy stresses that health literacy is a process. In the following example, another caseworker likens the processes of coming to terms with one’s diagnosis and developing health literacy to the emergent recovery of an addict:
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That’s all 12-Step programs are when you think about it, AA [Alcoholics Anonymous], CA [Cocaine Anonymous], NA [Narcotics Anonymous], it’s huge. All it is is getting the information, you walk in, they give you a book, they get you peer-to-peer, they set you up with a sponsor, and then it goes on from there. It takes about a year. It reaches your ears, your head, and then travels down, and you finally receive it in your heart. You begin to change.
In this quotation, the participant relates 12-Step programs to health literacy development and illustrates that giving individuals the necessary information to manage their condition effectively is just one step in an ongoing process. For health literacy to inform behaviors and routines, the individual must relate how such actions affect short- and long-term health outcomes; clients must be in a place where they can make sense of and apply such information. Thus, it is important for the caseworker to understand where the client is in this process and tailor approaches to developing health literacy appropriately. For example, delivering informational materials to the client does not ensure that he or she will read them and become familiar with the information provided. The Foundations of Health Literacy A second major finding of this study involved the need for iterative development of several subcomponents upon which health literacy is founded. Caseworkers identified two critical components necessary to development of health literacy: (a) trust, which includes engagement in commitment acts and acknowledging a client’s multiple social identities and (b) understanding the hierarchy of needs that a client might have. Establishment of Trust Many caseworkers identified the importance of trust in creating a productive relationship through which individuals could access and understand the information required to maintain their health. Given the complexity of HIV and its treatment, caseworkers stressed that health literacy is accumulated over time and develops as related to a variety of concurrent variables, such as community context, comorbid diagnoses, and sense of support. Therefore, the caseworkers cited the importance of establishing a connection or relationship with the client that provides the foundation for developing HIV health literacy. Once the relationship between relevant actors has been established, there is a foundation set, allowing for the development of health literacy and empowering the client. One caseworker stated: Yeah, I think it’s a process once you get people engaged. Because once you get them to receive the information, they hear it, and they are going to want to be engaged most of the time. It’s just a part of healing, once they get the information, and they get to a point of healing, and then engage them to get the health information out there.
This quote demonstrates that the development health literacy requires an initial connection or relationship between the client and caseworker. After rapport is established, a caseworker is better able to assess the client’s capacities to understand and use various types of health-related materials. Similarly, a client is increasingly likely to reveal sensitive information that may inform the best ways to develop health literacy. For example, one caseworker explains: And I think we waste a lot of time, money, and energy on paper – giving out health literacy [materials]. Paper is a waste of time. Half of my clients can’t read, much less throw them out a pamphlet. Pamphlets are useless to me. Well, not totally. There’s maybe 10% of the population that will pick up a pamphlet, read it, and get something out of it. So I can’t say it’s totally useless. But I think to promote health literacy and really get it out there; it takes more than paper and pamphlets. It takes contact . . . personal contact. It’s time and effort. It’s tiring and it’s more than sitting around table gathering information, putting it in a pamphlet or book and putting it on a shelf.
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This quote demonstrates how important it is for a caseworker to understand clients’ strengths and weaknesses and subsequently accommodate them when working with the client to develop health literacy. In this example we see that if a client cannot read, administering health literacy information purely through written materials will have null net impact; however, a client may not reveal that he or she is unable to read in a one-time meeting. The nature of the relationship between the client and the provider dictates how health literacy is best delivered and absorbed. Another quote further illustrates the importance of establishing trust: Sometimes, you look at it and you sit there and think to yourself, or you can hear it: “They not from where I’m from, so they don’t understand.” Because you hear that [from clients]. But I can be sitting there talking to them [as an African American woman] and telling them the same exact thing and I have their undivided attention. It is just the way that I express it and my inflection – they relate to it. They relate to the way I move. That’s cultural. That is clearly cultural. It is different when it’s coming from something that you recognize. There’s a sense of security and familiarity.
In this example, there were apparent identity markers shared by the caseworker and the client that facilitated a sense of trust and familiarity. Through that sense of commonality, the caseworker felt as if she was able to share health literacy information in a culturally relevant way. This example also alludes to the complicated, clinical language of many health-related materials, which may serve as a barrier to health literacy development. In contrast, the caseworker found that through a shared language and communication style, information and resources were more effectively transmitted to the client. Acknowledgment and Connection with Multiple Social Identities Several caseworkers expressed that it is important to acknowledge and connect with the multiple social identities that a client may have to develop trust foster the development of health literacy. For instance, a caseworker stated: [I]f I come with just, “Hear the information,” it will never equal the whole. But when I put the information, the style, and the inflection, the things that I have control over, then I can get through to the client.
An understanding of the clients’ cultural background, the particular obstacles that they face in their daily lives, and their health histories aided caseworkers in developing trust and tailoring the delivery of health literacy. Many caseworkers noted the importance of understanding the intersections of clients’ multiple identities. For example, one participant stated: [L]ike, I’m Black. I can’t change that. And I am addressing Black people. That cannot be changed. But what can be changed . . . you have different communities of Black people! You got the community in the projects, you have the middle class Black community, and you got the upper middle class Black community. And each one of them require a different expression, and you have to be able to know that expression.
In this quote it becomes clear that cultural relevance goes beyond race alone, and that caseworkers must try to find overlapping and shared identities with their clients while engaging in conversations related to health literacy. Commitment Acts In addition to acknowledging the importance of understanding a client’s overlapping social identities, caseworkers also suggested that commitment acts were necessary to develop trust among clients. Commitment acts, as defined by Feldman, Bell, and Berger (2003), are those activities that a caseworker may partake in that are not necessarily related to the tasks listed in a formal job description. Often when engaging in commitment acts, the caseworker cannot know if these activities will yield any “empirical payoff,” but engaging in these more informal actions can
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demonstrate the caseworker’s investment in their relationship with the client. Commitment acts may help to break down the power dynamics traditionally inherent to the caseworker –client relationship. For example, one caseworker explained: [Y]ou’ve got to get them comfortable and wanting to speak with you first before they hear anything you tell them. I can walk up to you and hand you a pamphlet about health literacy and you take it and sit it on the table and never look at it. So have I really given you any education? I haven’t. I’ve handed you a pamphlet, so therefore, I say I’ve given you education, but if you never read it, I haven’t given you anything. If I sit down and I talk to you and I say, “Hey, let’s go to lunch. Let’s take two hours at the Social Security office, but let me take the long way home instead of the short way home.” And ask you, “What did you do over the Thanksgiving holiday? Who’s your best friend?”
This quote captures the potential of seemingly tangential and, at times time-intensive, interactions in engaging with the client in a meaningful way. These interactions help caseworkers broaden their understanding of the clients’ lives beyond the context of their traditional exchanges at the ASO. Another caseworker described the importance engaging in commitment acts: Me getting out there. Me reaching out to them and letting them know, “Hey, we are here to help.” If I need to come pick them up and take them, it’s transportation. It’s maybe even dishing money out of your own pocket to give them where they need to go. And you got to get them a bus pass. Whatever you got to do to reach out to these clients to get them. That’s all that matters.
Through commitment acts, caseworkers were able to create connections and build trust with their clients. Another caseworker illustrates the importance of engaging in these types of interactions: When you build trust, [clients] call you no matter what. I have a client who is homeless and sometimes stays at his mom’s house. If he needs me and if he doesn’t have money to pay his cell phone bill, I’ll stop by his house. But, if he’s not there, he always calls me. And then I knew he was looking for a job so I hooked him up with somebody. Every time he calls me, I have something for him. If he needs a ride to get a bus pass from another ASO, I’ll take him.
Repeatedly, caseworkers cited the need to build trust by engaging in tasks that may be outside of the typical caseworker job description. In combination, engaging in commitment acts and understanding each client’s unique social identities aided in the establishment of trust, and, thus, provided the foundation on which the development of health literacy could be built. Understanding and Assessing Hierarchy of Needs A second important step in the health literacy process, illuminated by the data, was the need to prioritize other social issues that relate to health literacy but may also act as barriers to its advancement. For example, a caseworker stated: It’s a prioritization. If we dealt with the wealthy population in [the city], I’m sure they would be more health literate. Because, they’re not worried about housing, nutrition, about am I going to get beat up tonight or mugged tonight. Or am I going to have to sleep in this park on this bench. Or am I going to have to agree to do drugs with somebody before I can have a place to lay my head.
This quote captures the array of issues that clients face in their multiple environments that may threaten their development of health literacy. Below two specific examples are provided that further highlight how contextual issues can mediate a client’s health literacy development. The first example is a hypothetical scenario provided by a caseworker that elucidates how stigma can affect health literacy development: If I live in a small community and I have an issue. I have to go to this particular place, but some of the people there know . . . me . . . my family . . . my community members. I’m less apt to go up in there. And that’s whether I have the information or not. I’m less apt to come up in there. A lot, especially if you
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look down in the urban community . . . the projects . . . a lot of them don’t have access [to care]. Some of them have [state subsidized health care], so they have access, to a degree. But then you have a lot that work that cannot afford family health insurance and pay their bills. It’s just not going to happen.
The awareness of the impact of stigma, as illustrated by the above quote, was heightened by the fact that the ASO is situated in a public housing community and, thus, surrounded by several homes where people that the clients might know live. Similarly, but highlighting a different set of issues that may affect health literacy, a caseworker discusses the factors that may inhibit the development of health literacy after someone is released from prison: Again, until you’re able to touch their hearts, you haven’t given them information. I’ve worked a lot with people coming out of prison. They don’t even come out of survival mode until their most basic needs are met. Until you can bring them to a place that they feel safe, they’re not hearing anything you give them. It’s not reaching their heads . . . it’s reaching their ears. I don’t even think it goes to their brains, because their brains are consumed with, “I’ve got to have food. I’ve got to have shelter. I’ve got to have safety. I’ve got to stay out of prison. I don’t want to go back.”
Together, these two quotes illustrate that clients often have social issues or circumstances that mitigate health literacy advancement. In combination, they highlight the importance of caseworkers in establishing an ongoing understanding, prioritizing, and addressing of client needs as an important step in the health literacy process. Due to multiple stressors, many clients’ lives may be in flux and transmission of health-related messages must be flexible to accommodate ongoing changes. It is important for caseworkers to create an awareness of the complex realities of clients’ lives to be able to appropriately deliver health literacy materials in a way that maximizes the potential impact on individual’s subsequent understanding and behaviors.
DISCUSSION Findings from this study illustrate that HIV health literacy should be conceptualized and operationalized as a process rather than a static outcome in which knowledge is transmitted from caseworker to client. Interviews with caseworkers demonstrated trust between caseworker and client must be established before health literacy development can begin and that engaging in commitment acts and understanding and assessing the client’s hierarchy of needs are essential to building rapport. Previous research has highlighted the importance of developing trust and rapport between clients and professionals in health care settings (Andersen, Smereck, Hockman, Ross, & Ground, 1999; Dinc¸, L., & Gastmans, 2012; Gilson, 2005; Mancuso, 2010; Nutbeam, 2008; Thiede, 2005). However, as noted by Alexander and Charles (2009) willingness on the part of the caseworker to engage in a reciprocal relationship with the client goes against practice norms that warn against the development of dual relationships—calling attention to the need to develop social work training materials that provide guidance on the development of rapport between caseworker and client. Additionally, despite the existing literature that acknowledges the importance of trust, our findings demonstrate that trust is not important only because it enhances the relationship between practitioner and patient, but because it also allows for caseworkers to have a more complete understanding of the contextual surroundings that may mediate how patients are able to receive and develop health literacy. Our findings also support previous scholarship that demonstrates the importance of cultural connections in service delivery. Zarcadoolas, Pleasant, and Greer (2009) advanced the notion of “cultural literacy” as a main component of health literacy. This involves understanding the populations that are being targeted for health literacy intervention, and our findings echo the need for culturally responsive caseworkers. Rikard, Thompson, Head, McNeil, and White (2012)
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suggested development of HIV health literacy programs must include community members in collaboration with organizations and that health literacy information must be culturally tailored and viewed through a multidimensional lens. Thus, a practical approach to ensuring community participation and the development of culturally relevant interventions that utilize creative venues and recognize the impact of multiple social factors are needed. Caseworkers’ conceptualization of health literacy as a process is a significant finding of this study that has broad implications in that attempts to foster health literacy must be iterative and in concert with a recognition that contextual factors can affect an individual’s ability to uptake health information. Nutbeam (2008) stressed the importance of modifying commonly used health literacy measures to assess an individual’s capacity to “gain access to age and context specific information from a variety of sources, discriminate between sources of information, understand and personalize health information that has been obtained, and appropriately apply relevant health information for personal benefit” (p. 2076). This, Nutbeam (2008) contended, is necessary if we are to gain in-depth knowledge about how people interpret and use health information to enhance health promotion. Our results support Nutbeam’s (2008) suggestions, and we assert that measures of health literacy and caseworker practice be extended to assess the contextual, social factors that are be related to the ability to develop health literacy. This could take the form of routinized check-ins with clients about what challenges they may be currently facing (via an inventory or questionnaire) or the development of health literacy strategies that are appropriate for different stages of understanding. Whatever shape resultant innovations take, however, it is necessary that they are employed in an ongoing way, over time with an explicit focus on how health literacy might change dependent on a confluence of multiple factors.
LIMITATIONS AND FUTURE RESEARCH Although this study does make an important contribution to research on health literacy, it is not without limitations. This study is qualitative in nature, and thus, the results reported herein are not widely generalizable. Instead, our findings provide a snapshot of how health literacy is conceptualized by a subset of caseworkers working in an inner-city, midsized, Southeastern city. Quantitative research that examines the association between health literacy, social factors, and proximal predictors of health is needed to shed light on which community-related variables have the most impact on the relationship between HIV outcomes and health literacy. Continued research should build on the framework revealed via this study, as individual outcomes must be considered in relation to broader social contexts. Finally, some of the results may be informed by the setting in an urban city in the American South. Further research is needed to understand if the issues are the same regardless of geographic location. For instance, a followup study might examine whether caseworkers in a rural area conceptualize health literacy in the same way.
CONCLUSION Research has shown that health literacy can affect the health outcomes of HIV-positive individuals. However, health literacy is often conceptualized as knowledge that is transmitted from person to person in static situations. Our findings demonstrate that health literacy is a process and that key foundational components must be satisfied for health literacy to develop. Health literacy interventions should aid in the iterative assessment of health understanding and recognize the importance of trust, fostered by cultural awareness and commitment acts, and a multiple life stressors in developing long-term HIV health literacy.
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