Joy Agner PhD, OTR/L (she/her)

Objective. Social support is an important component of recovery-based interventions for individuals living with severe mental illness (IWSMI). Clubhouses are local community centers that facilitate the development of meaningful relationships among IWSMI through an empowering structure and engagement with the work-ordered day. This review synthesizes research on social networks in Clubhouses to provide insights on the role of supportive relationships in mental illness recovery, including the size and features of social networks of Clubhouse members, methodological trends and gaps, and the associations between social networks and demographic variables, recovery, health, and perceived social support.

Method. Research on social networks within Clubhouses were identified and analyzed following a systematic six-stage scoping review design.

Results. Twelve articles across six studies were included. Results revealed considerable variation in social network interview methods and network size and features. Overall findings suggest that network size is not consistently associated with reported loneliness, social support, recovery, or quality of life. A deep relationship with at least one supportive person, level of perceived affiliation with Clubhouses, or positive comments from network members may be more or equally valuable than a larger network. Some studies found that types of relationships were associated with unique benefits. Stronger peer networks were associated with relationship satisfaction, while increased connections with health care professionals and family were associated with reduced hospitalizations.

Conclusions and Implications for Practice. Future research should diversify research designs, expand the use of social network analysis and visualization, measure additional outcomes including recovery and health, and increase sample diversity.

Photovoice is a participatory, photo-based research method that differs from conventional (non-participatory) research in that the process is meant to be empowering and beneficial. However, empirical research on the Photovoice process remains very limited. Based on feedback from participants who reported Photovoice helped them develop closer relationships, we examine whether engaging in Photovoice fosters social support. Transcripts from a Photovoice study on wellness in mental health Clubhouses (voluntary, community mental health centers) were retrospectively analyzed for instrumental support, appraisal, informational support, and emotional support. Appraisal was the most common form of social support identified, and was primarily expressed through peer praise for photos and insights. Informational support included advice on managing symptoms, promoting wellness, and navigating challenges. Instrumental support was fostered by learning the tangible skill of digital photography and by supporting fellow members with physical or visual limitations to participate in the process. Emotional support was cultivated through encouragement, identification of shared experiences, and connection through humor. In sum, the findings suggest that Photovoice has the potential to foster social support, which may support relational empowerment.

Health literacy is the ability to obtain and utilize health information to make health-related decisions and to navigate health systems. Although health literacy has traditionally been understood as an individual-level construct, current research is revealing the impact that social networks can have on health literacy. To date, no studies have examined associations between health literacy and social networks among people with serious mental illness (PWSMI), who are at high risk of physical illness and premature mortality. To begin to fill this gap, this study explores associations between health literacy, relationships with health discussion partners, and self-reported health outcomes in a racially diverse sample of Clubhouse members in Hawai‘i. Clubhouses are community mental health centers that promote recovery from mental illness through destigmatization, meaningful activity, and strong social relationships. Health literacy was assessed using two single-item screeners (SILS). In a sample of 163 members, 56.2% reported adequate ability to understand health-related instructions or pamphlets, and 43.3% reported adequate confidence filling out medical forms independently. This is consistent with other health literacy studies with PWSMI in the United States, and indicates lower health literacy within this group than is reported in national averages. Multivariate logistic regression revealed a larger Clubhouse staff social network and completing high school were significantly associated with requiring less help to read materials. Higher age, male gender, and being Native Hawaiian and/or Pacific Islander were associated with less confidence filling out medical forms, while higher self-efficacy was associated with higher confidence filling out medical forms. This study provides preliminary evidence that relationships fostered within Clubhouses are associated with health literacy among PWSMI, and highlights the need for more research to examine how social networks and health literacy interventions can be leveraged in community mental health settings to improve health outcomes within this vulnerable population.

Keywords. health literacy; serious mental illness; clubhouse; mental health clubhouse; social networks; distributed health literacy; community mental health

Limited information exists about social network variation and health information sharing during COVID-19, especially for Native Hawaiians (NH), Other Pacific Islanders (OPI), and Filipinos, who experienced COVID-19 inequities. Hawai’i residents aged 18–35 completed an online survey regarding social media sources of COVID-19 information and social network health information measured by how many people participants: (1) talked to and (2) listened to about health. Regression models were fit with age, gender, race/ethnicity, chronic disease status, pandemic perceptions, and health literacy as predictors of information sources (logistic) and social network size (Poisson). Respondents were 68% female; 41% NH, OPI, or Filipino; and 73% conducted a recent COVID-19 digital search for themselves or others. Respondents listened to others or discussed their own health with ~2–3 people. Respondents who talked with more people about their health were more likely to have larger networks for listening to others. In regression models, those who perceived greater risk of acquiring COVID-19 discussed their health with more people; in discussing others’ health, women and those with chronic diseases listened to a greater number. Understanding young adults’ social networks and information sources is important for health literacy and designing effective health communications, especially to reach populations experiencing health inequities.

Keywords. social networks; distributed health literacy; health literacy; COVID-19; native Hawaiian; Pacific islander; Filipino

Objectives. Past research shows mixed outcomes in terms of HIV-related disparities among Native Hawaiians and Pacific Islanders (NHOPI). This study investigates HIV-related disparities among NHOPI living with HIV in Hawai‘i.

Design. An explanatory sequential design was utilized. The quantitative portion analyzed survey data from a statewide Ryan White Needs Assessment (N = 398) to examine the differences in viral suppression and satisfaction with care between NHOPI and other ethnic groups. Utilizing the behavioral model for vulnerable populations (BMVP), semi-structured interviews (N = 16) were conducted next to explain what factors play a role in satisfaction with care and viral suppression when it comes to NHOPI living with HIV in Hawai‘i.

Results. Among the 398 participants 13% were NHOPI. NHOPI were more likely to have a viral load of ≥10,000 copies/mL compared to those who didn’t identify as NHOPI. However, there were no significant differences for other viral load levels (20–199 or 200–9999), and only 20 participants (5.2%) had a viral load of 10,000 copies/mL or more. No significant ethnic differences were found in satisfaction with medical care. In the qualitative phase, factors from all domains of the BMVP were represented within the four themes identified: (1) Care coordination is essential — with AIDs service organizations taking the lead; (2) HIV care, as well as overall health, is defined by the effectiveness of medication; (3) Initial diagnosis is a critical moment for intervention; and (4) Aspects of culture are intangible.

Conclusion. Among NHOPI in Hawai‘i who are engaged in case management, there appears to be no substantial disparities in either viral load or satisfaction with care compared to other ethnic groups. Despite this, qualitative findings provide insights on how ethnicity and culture may still be playing a role. Addressing all domains of the BMVP is crucial to addressing this.

Keywords. Native Hawaiian; Pacific Islander; HIV; AIDS; healthcare utilization; HIV care continuum; viral suppression; culturally-relevant care; culture and healthcare

Objectives. Reducing potentially preventable hospitalizations (PPH) for chronic disease is a research and practice priority. Native Hawaiians and other Pacific Islanders (NHOPI) have disparities in PPH, and are understudied in both health literacy and social network research. Greater inclusion of social and familial networks can help address health disparities among people with chronic illness and enhance culturally relevant healthcare.

Methods. Adults hospitalized with a heart disease or diabetes-related PHH in Hawai‘i (N = 22) were assessed for health literacy and social network membership (“alters”).

Results. Sixty-nine percent of respondents were NHOPI. Three respondents (14%) had no alters (“isolates”). Among non-isolates, 79% desired the participation of at least one alter in chronic disease management-related interventions. Fifty-nine percent of respondents had low health literacy. While the mean number of alters did not vary significantly by health literacy, those with lower health literacy had a trend (p = .055) towards less interest in social network engagement.

Discussion. In a sample primarily comprised of NHOPI with chronic disease, many patients wished to include social network members in interventions. Engagement varied by health literacy with implications for health disparities. Not all patients were interested in social network engagement, which must be considered in intervention planning.

Keywords. Social networks, ambulatory care sensitive conditions, Native Hawaiians, Pacific Islanders, chronic disease, diabetes, heart disease, medications

The COVID-19 pandemic has been accompanied by rapidly emerging evidence, changing guidance, and misinformation, which present new challenges for health literacy (HL) and digital health literacy (DHL) skills. This study explored whether COVID-19-related information access, attitudes, and behaviors were associated with health literacy and digital health literacy among college students in the United States. Self-reported measures of health literacy, along with items on pandemic-related attitudes, behaviors, information sources, and social networks, were collected online using a managed research panel. In July 2020, 256 responses were collected, which mirrored the racial/ethnic and gender diversity of U.S. colleges. Only 49% reported adequate HL, and 57% found DHL tasks easy overall. DHL did not vary by HL level. In multivariable models, both HL and DHL were independently associated with overall compliance with basic preventive practices. Higher DHL, but not HL, was significantly associated with greater willingness to get a COVID-19 vaccine and the belief that acquiring the disease would negatively impact their life. On average, respondents discussed health with 4–5 people, which did not vary by HL or DHL measures. The usage of online information sources varied by HL and DHL. The study findings can inform future student-focused interventions, including identifying the distinct roles of HL and DHL in pandemic information access, attitudes, and behaviors.

Keywords. COVID-19; coronavirus; health literacy; digital health literacy; eHealth literacy; college student; online survey; social network

Conventional research involves participants primarily as sources of data (Wallerstein & Duran, 2006), relies upon a positivist tradition wherein researchers are seen as neutral, objective observers (Bhawuk, 2008), and is not necessarily concerned with the application of findings to improve the social conditions of those involved. In many places around the world, this has led to distrusting relationships between communities and researchers, and has also likely limited the potential for research to help ameliorate social problems (Smith, 1999). In this article, action research is presented as an alternative to conventional research practices, and is examined in relation to four community psychology values. A brief history and the main principles of action research are described, followed by a discussion of its evolution to participatory, or community-based participatory research (CBPR), and connection to four values identified by Bond (2016). These include: 1) empowerment, 2) promotion of social justice, equity and social change, 3) attention to diversity in its various forms, and 4) adoption of an ecological perspective and multilevel analyses. Each value is discussed in terms of theoretical alignment as well as challenges and successes in application to research and practice. This work deepens the rationale for the use of action research in community psychology, and may be used as a lens to evaluate practice and research.

Despite a push to utilize evidence-informed practice there has been little research on unique challenges of implementing empirically supported interventions (ESIs) in child welfare. This study addresses that gap by identifying factors affecting adoption of three ESIs introduced to the child welfare system in Hawai’i: Intensive Home-based Services, Family Wraparound, and Safety, Permanency, and Well-being. In 2015, these programs were initiated as part of a Title IV-E Waiver Demonstration with the intention of preventing unnecessary placements in child welfare and increasing permanency. Two years after their start date, the three programs were utilized at a much lower rate than anticipated. A survey was developed to assess factors affecting program adoption based on data from focus groups and diffusion of innovation theory. Sixty-three caseworkers and unit supervisors were included in the final sample. Logistic regression was used to test relationships between referrals and implementation factors (knowledge, compatibility, relative advantage, risk, workload, time commitment, peer buy-in), and linear regression was used to examine relationships between peer buy-in, peer relationships, and relative advantage. Findings suggest workload, time commitment, and perceived risk of the interventions should be addressed during the implementation of new programs in child welfare, and that the caseworker’s social system can be targeted to improve relative advantage of new interventions. This study aims to contribute to knowledge on successful implementation of ESIs in child welfare to improve essential services for children and families.

Individuals with severe mental illness need to be engaged in defining their own vision of wellness to promote equity and reduce disparities. This photovoice study helps define what wellness is and how it is achieved in mental health Clubhouses in Hawai‘i. Results from a photovoice study with 43 members and staff were analyzed using Pilinahā, a Native Hawaiian framework for health. Pilinahā envisions health through connection to place, community, past and future, and one’s better self. Within Clubhouses, connection to place included connection to ‘āina (land) and the access to a safe space. Connection to community occurred through reciprocal social support, which developed kuleana (responsibility), and a sense of ‘ohana (family) for many members who were previously isolated. Connection to one’s better self-involved positive identity change, development of hope, and pursuing opportunities within and outside the Clubhouse. Connection to past and future was described through individual narratives, remembering members who had died, and connection to cultural traditions. Overall, wellness was conceptualized as the ability to work toward dreams, engage in cultural practice, and feel accepted, respected, and valued — to be treated with aloha. Findings provide a culturally responsive perspective on wellness and illustrate the value of Clubhouses as a space for mental health recovery and transformative change.

As the U.S. population becomes increasingly multicultural, occupational therapy practitioners must be adept at working with diverse populations. For the past 15–20 yr, many occupational therapy scholars have recognized this need, and in response, they have promoted cultural competence training. Although cultural competence has provided an important initial conceptual framework for the field, I argue that it is time to move toward a practice of cultural humility, which is defined by flexibility; awareness of bias; a lifelong, learning-oriented approach to working with diversity; and a recognition of the role of power in health care interactions. In this article, I present three main arguments why cultural humility is a more useful and critical conceptual framework than cultural competence, and I review preliminary research that examines the influence of cultural humility on patient experience. I conclude by briefly describing how cultural humility can be incorporated in occupational therapy curricula and applied in clinical and community practice settings.

Keywords. clients, health, occupational therapists, introspection, health personnel

Health literacy is understudied in the context of social networks. Our pilot study goal was to consider this research gap among vulnerable, low-income mothers of minority ethnic background in the state of Hawai‘i, USA. Recruitment followed a modified snowball sampling approach. First, we identified and interviewed seven mothers (“egos”) in a state-sponsored home visiting program. We then sought to interview individuals whom each mother said was part of her health decision-making network (“first-level alters”) and all individuals whom the first-level alters said were part of their health decision-making networks (“second-level alters”). Health literacy was self-reported using a validated item. A total of 18 people were interviewed, including all mothers (n = 7), 35% of the first-level alters (n = 7/20), and 36% of the second-level alters (n = 4/11). On average, the mothers made health decisions with 2.9 people (range: 1-6); partners/spouses and mothers/mothers-in-law were most common. One mother had low health literacy; her two first-level alters also had low health literacy. Across the full sample, the average number of people in individuals’ health decision networks was 2.5 (range: 0–7); 39% of those interviewed had low health literacy. This can inform the design of future studies and successful interventions to improve health literacy.

Keywords. health literacy; social networks; health communication; native Hawaiian mothers; Filipino mothers; low-income mothers

Background. The Healthy Hawai‘i Initiative was created in 2000 with tobacco settlement funds as a theory-based statewide effort to promote health-supporting environments through systems and policy change. Still active today, it is imbedded explicitly in a multi-sectoral, social ecological approach, effectively striving to build a culture of health before this was the name for such an ambitious effort.

Methods. From interviews with key informants, we analyze two decades of the Healthy Hawai‘i Initiative (HHI) in the context of the Robert Wood Johnson Foundation (RWJF) Culture of Health Action Framework (CHAF). We list HHI accomplishments and examine how the Initiative achieved notable policy and environmental changes supportive of population health.

Results. The Healthy Hawai‘i Initiative started with an elaborate concept-mapping process that resulted in a common vision about making “the healthy choice the easiest choice.” Early on, the Initiative recognized that making health a shared value beyond the initial stakeholders required coalition and capacity building across a broad range of governmental and nonprofit actors. HHI coalitions were designed to promote grassroots mobilization and to link community leaders across sectors, and at their height, included over 500 members across all main islands of the state. Coalitions were particularly important for mobilizing rural communities. Additionally, the Initiative emphasized accessibility to public health data, published research, and evaluation reports, which strengthened the engagement to meet the shared vision and goals between diverse sector partners and HHI. Over the past two decades, HHI has capitalized on relationship building, data sharing, and storytelling to encourage a shared value of health among lawmakers, efforts which are believed to have led to the development of health policy champions. All of these factors combined, which centered on developing health as a shared value, have been fundamental to the success of the other three action areas of the CHAF over time.

Conclusions. This evidence can provide critical insights for other communities at earlier stages of implementing broad, diverse, multifaceted system change and fills a key evidence gap around building a culture of health from a mature program in a notably multicultural state.

Objective. The purpose of this review is two-fold: 1) to broaden conceptualization of patient empowerment by synthesizing qualitative research on patient perspectives, and 2) to examine how researcher’s method and background may have affected their framing of patient empowerment, thereby shaping the results.

Methods. A systematic search for qualitative research on patient definitions of power, powerlessness, and empowerment was completed. Articles were analyzed at three levels (theory, method, and data) as suggested by the meta-study method for qualitative synthesis.

Results. The search yielded 13 articles from 11 investigator teams across 9 countries (the United Kingdom, Norway, Australia, Taiwan, New Zealand, China, Iran, Belgium and Italy). Emergent themes from patient perspectives included control, psychological coping, legitimacy, support, knowledge, and participation.

Conclusions. Despite variation in diagnosis, age, ethnicity, income and country of origin, patients share many perspectives on empowerment. Furthermore, there are indications that interview questions may have influenced findings such that structural barriers to empowerment were not deeply explored.

Occupational justice is based on the ability to participate in meaningful occupations to achieve wellness and community integration. It is achieved through an intersection of micro, meso, and macro level factors. Empowerment is often discussed as an essential element of occupational justice, but the term lacks theoretical clarity and nuance in occupational science literature. Additionally, past research shows that empowerment and occupational justice are difficult to achieve in clinical settings because of elements of medical culture, including the sick role, reimbursement structures, hierarchy, and depersonalization. This article has two main aims: 1) to build on occupational justice theory by incorporating psychological and material theories of empowerment from community psychology; and 2) to provide specific examples of how empowerment and occupational justice might be promoted in the context of clinical settings in the United States. Conclusions are that occupational justice can be bolstered by interventions informed by empowerment theory, which emphasize critical awareness, perceived control, citizen participation, and reduction in material barriers to power. The author links occupational justice and empowerment theories with case examples from her own practice, and highlights values that overlap between occupational science and community psychology (such as individual and community wellness, social justice, and empirical grounding) to promote future collaboration and dialogue.

Guatemalans have supposedly lived in peace and democracy since the brutal 36-year civil war formally ended in 1996. But the state-sponsored terror of the past is again rearing its head. In today's undeclared war rates of violence in some cases surpass even those of the war, with the government repeating many abuses of the past.