Developing Visually Based, Low-Literacy Health Education Tools for African Americans with Psychotic Disorders and Their Families
Schizophrenia presents particular challenges to health literacy, partly due to associated neurocognitive deficits. In order to develop engaging, recovery-oriented, visually based psychoeducational tools pertaining to psychotic disorders, thirty-nine individuals, consisting of mental health service users with serious mental illnesses, family members, and mental health professionals, participated in informal discussions. Using suggestions from these groups, the first two psychoeducational booklets of a planned series were developed in collaboration with a graphic designer and visual artist. Content of the booklets was developed addressing four components: knowledge, self-efficacy/self-management, incorporating a workbook format, and planning/contracting. In a follow-up discussion group, mental health service users provided positive feedback on the completed booklets. The finished booklets are practical, accessible, engaging, and low-literacy. These and other innovative approaches are needed to enhance mental health care, promote self-efficacy/empowerment, and encourage communication between service users, family members, and providers, especially in light of limited health literacy, illness-related neurocognitive impairments, and stigma.
The need to enhance care for people with serious mental illnesses has been emphasized in numerous federal reports, including: Mental Health: A Report of the Surgeon General, Healthy People 2020, and the New Freedom Commission on Mental Health (U.S. Public Health Service Office of the Surgeon General 1999; U.S. Department of Health and Human Services 2010; New Freedom Commission on Mental Health 2003). Schizophrenia presents particular challenges related to health literacy—defined as the ability to obtain, process, and understand basic information necessary to make health decisions (Nielsen-Bohlman et al. 2004)—because the vast majority of individuals with schizophrenia have significant neurocognitive deficits that interfere substantially with functioning (Wilk et al. 2004). Compounding these problems, schizophrenia is one of the most highly stigmatized health conditions, leading to delayed help-seeking, poor treatment engagement, poor access to care, and under-treatment of affected individuals (Corrigan et al. 2001; Lee et al. 2005; U.S. Public Health Service Office of the Surgeon General 1999).
In mental health settings, the process of obtaining, processing, and understanding information related to serious mental illnesses (i.e., mental health literacy in the clinical setting) has been addressed in the framework of psychoeducation, or education surrounding the nature and probable course of illness, available treatments, and healthcare/community resources (Edwards and McGorry 1997). Studies have documented the effectiveness of psychoeducation in terms of improved knowledge about schizophrenia and ratings of client satisfaction (Vreeland et al. 2006), reduced rehospitalization rates at 6 months (Vickar et al. 2009), improved attitudes and health perceptions (Gutiérrez-Maldonado et al. 2009), and reduced stigma (Alvidrez et al. 2009). Indeed, a 2011 Cochrane Collaboration meta-analysis demonstrated that psychoeducation improves adherence, reduces relapse/readmission, promotes social functioning, enhances satisfaction with mental health services, and improves quality of life (Xia et al. 2011). Yet, the authors concluded that the dearth of research in this area makes it difficult to evaluate the efficacy of different psychoeducational approaches. Another recent review suggests that future research must focus on service user-directed (rather than only family-directed) psychoeducation, especially among stable outpatients who may benefit more than do acutely symptomatic inpatients (Rummel-Kluge and Kissling 2008). Psychoeducational materials can be produced in various formats, though educational information is most often conveyed verbally or with printed materials that commonly contain psychiatric jargon and are written at a relatively high reading level. Although there are a multitude of existing resources available to people with schizophrenia that provide education, they may not be adequate and further mental health literacy research/development in this area is crucial.
Incorporating visuals into health education materials has recently become a focus of research and practice for some illnesses. An Institute of Medicine workshop on the integration of health literacy, reducing health disparities, and quality improvement concluded that innovative communication methods used in other fields—such as pictures to communicate instructions for operating equipment/tools—should be used in healthcare (Chao et al. 2009). As an example of such innovation, DeWalt et al. (2004) developed and piloted a disease management program for low-literacy patients with congestive heart failure that included a visually based educational booklet comprised of nine modules. In a 3-month pre/post design (n = 25), the proportion of patients endorsing self-care behaviors increased significantly (32–100 %). In addition, symptom scores improved by 9.9 points over the 3-month study period, resembling improvements from medications (DeWalt et al. 2004).
Using novel, visually oriented aids is particularly promising as an approach to enhance mental health literacy of individuals with schizophrenia and related psychotic disorders who have substantial deficits in attention, learning, and memory. This article describes the process of collaboration with community partners; the feedback gathered from small, informal discussion groups; the development of psychoeducational tools; and overall “lessons learned” of a project focused on the development of colorful, engaging, visually based, psychosis-related health education tools for African Americans with limited health literacy.
Partners and Discussion Groups
In light of the critical need for psychoeducation of mental health service users and their families, and the scarcity of health education tools available to community members affected by a psychotic disorder, we sought to develop visually based health education tools through community-partnered research. Three communities that were engaged and that will ultimately benefit from this project include: (1) mental health service users with serious mental illnesses, such as schizophrenia; (2) family members of these individuals, who often provide ongoing care, support, and encouragement despite insufficient resources; and (3) mental health professionals, who must provide psychoeducation in an efficient manner. To gain an understanding of the end-users of the psychoeducational tools that we sought to develop, these three groups were engaged in informal discussions, which met in September and October of 2009. All three groups were moderated by the first author. Participants were invited to provide feedback on what they believe is most needed in a psychoeducational booklet. Each group began with a brief overview of the visual tools to be created and the purpose of the discussion. Questions asked of the groups related to information needed, information that service users and family members often have difficulty understanding, common misconceptions, and the presentation of information in a relevant manner, especially associated with the topics of early warning signs and psychotic symptoms (the first two topics of a planned series of eight booklets). Personal information or research data were not collected during the informal discussions; only preferences related to content and layout of the psychoeducational tools were gathered. After the discussions, we came to a consensus on the most relevant topics pertaining to needs and preferences based on the groups’ feedback. The university’s Institutional Review Board determined that the informal discussion groups did not constitute research requiring formal review. All authors certify responsibility for this manuscript and have no conflicts of interest to report.
Mental Health Service User Discussion Group Themes
Twelve participants hospitalized in a psychiatric unit of a large, public-sector, general hospital took part in an informal discussion group during a psychoeducation group. Overall, they perceived the development of visually based booklets as helpful and welcomed the idea of information being presented in a more visual, low-text manner. They also desired more communication with their providers when discussing the intent for the booklets to promote communication and shared decision-making. Other themes that emerged included: (1) a need for more information on the course and evolution of their illnesses; (2) more discussion about medication (i.e., how it will change during the course of the illness, side effects, how to monitor efficacy); (3) the effects of substance use on the illness and treatment; (4) coping with stress so as to prevent relapse; and (5) community reintegration issues (e.g., how to handle social situations that may produce stress, how to communicate with family members).
Family Discussion Group Themes
Fifteen members of a monthly family support meeting of a local National Alliance on Mental Illness (NAMI) affiliate were invited to join a discussion related to psychoeducation. Participants were family members of someone with a mental illness, though several service users were also present. Main themes that emerged included: (1) a need for more practical, action-oriented steps to take when early warning signs occur; (2) more information on the course and evolution of specific mental illnesses (i.e., what to expect); and (3) a desire to incorporate families’ experiences and stories into psychoeducational materials.
Mental Health Professional Discussion Group Themes
Lastly, an informal discussion group was advertised to all staff (i.e., mental health associates, medical students, nurses, social workers, psychiatry residents, psychiatrists) of an inpatient psychiatric unit of the urban, public-sector hospital; twelve attended. Participants thought the tools were a needed resource and were eager to provide feedback to inform their development. Themes of the discussion included: (1) addressing mental health service users’ common denial, or lack of recognition, of having a mental illness, (2) keeping in mind stigmatizing attitudes of some community members, (3) noting diagnostic uncertainty, and (4) developing the content of the tools using a person-centered and empowering tone.
Development and Overview of Visuals and Booklets
Utilizing knowledge gained from the three discussion groups, the first two of a series of eight psychoeducational booklets were developed, focused on (1) early warning signs and (2) symptoms of psychosis. First, a certified health educator developed the content of the two booklets; specifically, the informational component and the storyline of comic-strip–like visual illustrations. The content was then reviewed by a board-certified psychiatrist, who is an expert in psychotic disorders, for accuracy. The Flesh-Kincaid Readability test (Kincaid et al. 1975; Kincaid and Gamble 1977) was performed to ensure text was at or below a fifth-grade reading level.
The content was then sent to a collaborating graphic designer and a visual artist. The visual artist created the icons and comic-strip–like visual illustrations, soliciting additional information on certain symptoms and signs, when needed. All icons and visual illustrations were reviewed by the health educator and psychiatrist to ensure accuracy of the information being conveyed. The graphic designer then developed the layout of the booklets to be engaging and user-friendly. The finished booklets are practical and accessible due to their size and interactive format, colorful and engaging due to the use of visuals and layout elements, written for a low health literacy audience with minimal text, and developed to promote recovery, shared decision-making, and self-management.
Mental Health Service User Feedback on the Finished Products
Utilizing the same method as in the initial groups, ten hospitalized mental health service users participated in an informal discussion group during a psychoeducation group on an inpatient psychiatric unit in order to provide feedback on the first two completed booklets. The facilitator of the discussion group first read through each booklet with the participants, discussing information presented on each page and eliciting comments on how experiences described in the booklets resonated with their own lives. After the group worked through each booklet together, the design, usability, and overall impression of the booklets were discussed. Participants provided positive feedback on the completed booklets. Main themes of the feedback included: (1) the booklets were interesting and engaging (not long and boring); (2) the visuals helped them “relate”; (3) the text was to the point and easy to understand; (4) the experiences of the African American characters in the booklets were similar to their own; and (5) the layout of the booklets was colorful and simple. Participants expressed a desire for even more visuals when asked what would improve the booklets. In addition, most agreed that they would use the booklets, when they became available, to aid discussions with their clinicians.
Due to a relative lack of availability of low-literacy health education materials focused on serious mental illnesses, and in light of neurocognitive deficits associated with psychotic disorders, two visually based health education tools were developed. Specifically, these booklets were developed for African Americans with low health literacy. Psychiatric jargon was minimized to the largest extent possible; for example, readers are presented with simple descriptions of symptoms rather than terminology used by those in the psychiatric field. Utilizing input from the end-users of the tools (service users, family members of these individuals, and mental health professionals), the finished booklets are practical, accessible, engaging, and low literacy, and they are designed to promote key recovery concepts of hope, empowerment, and shared decision-making. A discussion group to obtain feedback from service users on the completed products revealed that they found the tools useful and easy to understand, even requesting more visuals to be incorporated for further improvement.
Due to the preliminary/pilot nature of this work, we focused solely on the content of the first two booklets in the focus groups. Following the same process for the rest of the series will be important. Also, a more iterative process with the three key stakeholder groups during content development of the remainder of the series might strengthen the overall series as well. Future research could examine if the materials are rated as easier to use and more helpful than already available materials for people with psychotic illnesses and their family members. Another area to assess would be whether use of the materials is associated with increased self-efficacy and better outcomes among service users.
Using visually oriented aids is particularly promising as an effective approach to enhance the health literacy of individuals with schizophrenia-spectrum disorders, which are characterized by substantial deficits in attention, learning, memory, and other cognitive domains (Wilk et al. 2004). Neurocognitive deficits undoubtedly interfere with information processing pertaining to traditional, text-based health literacy approaches. Numerous data demonstrate the prominent neurocognitive impairments associated with schizophrenia—present even at the time of the first episode—in domains (e.g., verbal learning, verbal working memory, sustained attention; Nuechterlein et al. 2004) that are involved in the comprehension and processing of traditional, text-based health literacy materials. Yet, psychoeducational interventions have not always been adapted to consider those impairments, such as by using engaging, visually based tools.
Embracing the recovery approach—by placing the mental health service users’ personal goals at the center of treatment, encouraging empowerment and disease management, and providing them with the information needed for shared decision-making and active participation in treatment—could lead to major reductions in personal disability, economic costs, and social consequences. Given the grave public health burden associated with schizophrenia-spectrum disorders and the surprising dearth of studies focusing on health literacy pertaining to these disorders, innovation, development, and effectiveness research are seriously needed.
Lessons learned from discussion groups about desired types of information were enlightening. Efforts to improve mental health literacy of individuals with schizophrenia could have very broad impact for service users’ overall health by enhancing insight and treatment adherence. This is especially true in populations affected by ongoing health disparities, such as socioeconomically disadvantaged racial/ethnic minorities.
This project was supported by the Office of University-Community Partnerships at Emory University.