Elizabeth Bromley

Ethical Community-Engaged Research: A Literature Review

Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.

Experiencing community: perspectives of individuals diagnosed as having serious mental illness.

OBJECTIVE Community integration is recognized as a crucial component of recovery from serious mental illness. Although the construct of community integration can be measured with structured instruments, little is known about the subjective and experiential meaning of community and community involvement for persons with serious mental illness. METHODS In 2010, 30 individuals with serious mental illness treated in two public mental health clinics completed semistructured interviews that elicited the places and people that they associate with the experience of community and the larger meaning of community in their lives. RESULTS Participants described four experiences as integral to their concepts of community: receiving help, minimizing risk, avoiding stigma, and giving back. Participants looked for communities that provide reliable support, and they described the need to manage community contact in order to protect themselves and others from their symptoms and from discrimination. Most participants experienced communities centered on mental health treatment or mentally ill peers as providing opportunities for positive engagement. CONCLUSIONS The experience of having a serious mental illness shapes preferences for and perceptions of community in pervasive ways. Participants described community involvement not as a means to move away from illness experiences and identities but as a process that is substantially influenced by them. Mental health communities may help individuals with serious mental illness to both manage their illness and recognize and enjoy a sense of community. The findings indicate the need for further research on the relationship between community integration and outcome in serious mental illness.

From subject to participant: ethics and the evolving role of community in health research.

Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research.

Patient Centered, Nurse Averse? Nurses’ Care Experiences in a 21st-Century Hospital

Implementations of patient centeredness can vary tremendously across settings, yet we know little about how clinicians experience local interpretations of patient centeredness. In this article, we investigate nurses’ experiences in a hospital designed to be patient centered in its emphasis on patient amenities and customer service. This environment altered nurses’ articulation work by shifting the visibility of a number of nursing tasks; customer service tasks became more visible whereas many medical and caring tasks were obscured. We found that these changes in nursing work challenged nurses’ professional roles, and the informants reported that the changes disrupted their relationships with patients and with one another. This implementation of patient centeredness resulted in a view of nursing that conflicted with many nurses’ implicit and explicit understanding of their work. Our findings suggest that the adoption of some versions of patient centeredness might obscure substantial and substantive nursing work and might undermine nurses’ concepts of caregiving.

Relationship of community integration of persons with severe mental illness and mental health service intensity.

OBJECTIVE Community integration is integral to recovery for individuals with severe mental illness. This study explored the integration of individuals with severe mental illness into mental health and non-mental health communities and associations with mental health service intensity. METHODS Thirty-three ethnically diverse participants with severe mental illness were categorized in high-intensity (N=18) or low-intensity (N=15) mental health service groups. Community integration was assessed with measures of involvement in community activities, social capital resources, social support, social network maps, and subjective integration. RESULTS Although participants rated themselves as being more integrated into the mental health community, their social networks and social capital were primarily derived from the non-mental health community. The high-intensity group had a higher proportion of members from the mental health community in their networks and had less overall social capital resources than the low-intensity group. CONCLUSIONS The findings suggest opportunities and possible incongruities in the experience of community integration.

Factors Affecting Exits From Homelessness Among Persons With Serious Mental Illness and Substance Use Disorders

OBJECTIVE We sought to understand the housing trajectories of homeless consumers with serious mental illness (SMI) and co-occurring substance use disorders (SUD) and to identify factors that best predicted achievement of independent housing. METHOD Using administrative data, we identified homeless persons with SMI and SUD admitted to a residential rehabilitation program from December 2008 to November 2011. Our primary outcome measure was independent housing status. On a random sample (N = 36), we assessed a range of potential predictors of housing outcomes, including symptoms, cognition, and social/community supports. We used the Residential Time-Line Follow-Back (TLFB) Inventory to gather housing histories since exiting rehabilitation and to identify housing outcomes. We used Recursive Partitioning (RP) to identify variables that best differentiated participants by these outcomes. RESULTS We identified 3 housing trajectories: stable housing (n = 14), unstable housing (n = 15), and continuously engaged in housing services (n = 7). In RP analysis, 2 variables (Symbol Digit Modalities Test [SDMT], a neurocognitive speed of processing measure, and Behavior and Symptom Identification Scale [BASIS-24] Relationships subscale, which quantifies symptoms affecting relationships) were sufficient to capture information provided by 26 predictors to classify participants by housing outcome. Participants predicted to continuously engage in services had impaired processing speeds (SDMT score < 32.5). Among consumers with SDMT score ≥ 32.5, those predicted to achieve stable housing had fewer interpersonal symptoms (BASIS-24 Relationships subscale score < 0.81) than those predicted to have unstable housing. This model explains 57% of this samples variability and 14% of this populations variability in housing outcomes. CONCLUSIONS Because cognition and symptoms influencing relationships predicted housing outcomes for homeless adults with SMI and SUD, cognitive and social skills training may be useful for this population.

Integrating Client and Clinician Perspectives on Psychotropic Medication Decisions: Developing a Communication-Centered Epistemic Model of Shared Decision Making for Mental Health Contexts

ABSTRACT Shared decision making (SDM) interventions aim to improve client autonomy, information sharing, and collaborative decision making, yet implementation of these interventions has been variably perceived. Using interviews and focus groups with clients and clinicians from mental health clinics, we explored experiences with and perceptions about decision support strategies aimed to promote SDM around psychotropic medication treatment. Using thematic analysis, we identified themes regarding beliefs about participant involvement, information management, and participants’ broader understanding of their epistemic expertise. Clients and clinicians highly valued client-centered priorities such as autonomy and empowerment when making decisions. However, two frequently discussed themes revealed complex beliefs about what that involvement should look like in practice: (a) the role of communication and information exchange and (b) the value and stability of clinician and client epistemic expertise. Complex beliefs regarding these two themes suggested a dynamic and reflexive approach to information management. Situating these findings within the Theory of Motivated Information Management, we discuss implications for conceptualizing SDM in mental health services and adapt Siminoff and Step’s Communication Model of Shared Decision Making (CMSDM) to propose a Communication-centered Epistemic Model of Shared Decision Making (CEM-SDM).

How Do Communities Use a Participatory Public Health Approach to Build Resilience? The Los Angeles County Community Disaster Resilience Project

Community resilience is a key concept in the National Health Security Strategy that emphasizes development of multi-sector partnerships and equity through community engagement. Here, we describe the advancement of CR principles through community participatory methods in the Los Angeles County Community Disaster Resilience (LACCDR) initiative. LACCDR, an initiative led by the Los Angeles County Department of Public Health with academic partners, randomized 16 community coalitions to implement either an Enhanced Standard Preparedness or Community Resilience approach over 24 months. Facilitated by a public health nurse or community educator, coalitions comprised government agencies, community-focused organizations and community members. We used thematic analysis of data from focus groups (n = 5) and interviews (n = 6 coalition members; n = 16 facilitators) to compare coalitions’ strategies for operationalizing community resilience levers of change (engagement, partnership, self-sufficiency, education). We find that strategies that included bidirectional learning helped coalitions understand and adopt resilience principles. Strategies that operationalized community resilience levers in mutually reinforcing ways (e.g., disseminating information while strengthening partnerships) also secured commitment to resilience principles. We review additional challenges and successes in achieving cross-sector collaboration and engaging at-risk groups in the resilience versus preparedness coalitions. The LACCDR example can inform strategies for uptake and implementation of community resilience and uptake of the resilience concept and methods.

Comparative Effectiveness of Two Models of Depression Services Quality Improvement in Health and Community Sectors

OBJECTIVE The effectiveness of community coalition building and program technical assistance was compared in implementation of collaborative care for depression among health care and community sector clients. METHODS In under-resourced communities, within 93 programs randomly assigned to coalition building (Community Engagement and Planning) or program technical assistance (Resources for Services) models, 1,018 clients completed surveys at baseline and at six, 12, or 36 months. Regression analysis was used to estimate intervention effects and intervention-by-sector interaction effects on depression, mental health-related quality of life, and community-prioritized outcomes and on services use. RESULTS For outcomes, there were few significant intervention-by-sector interactions, and stratified findings suggested benefits of coalition building in both sectors. For services use, at 36 months, increases were found for coalition building in primary care visits, self-help visits, and appropriate treatment for community clients and in community-based services use for health care clients. CONCLUSIONS Relative to program technical assistance, community coalition building benefited clients across sectors and shifted long-term utilization across sectors.

A Community-Partnered, Participatory, Cluster-Randomized Study of Depression Care Quality Improvement: Three-Year Outcomes

OBJECTIVE Community Partners in Care, a community-partnered, cluster-randomized trial with depressed clients from 93 Los Angeles health and community programs, examined the added value of a community coalition approach (Community Engagement and Planning [CEP]) versus individual program technical assistance (Resources for Services [RS]) for implementing depression quality improvement in underserved communities. CEP was more effective than RS in improving mental health-related quality of life, reducing behavioral health hospitalizations, and shifting services toward community-based programs at six months. At 12 months, continued evidence of improvement was found. This study examined three-year outcomes. METHODS Among 1,004 participants with depression who were eligible for three-year follow-up, 600 participants from 89 programs completed surveys. Multiple regression analyses estimated intervention effects on poor mental health-related quality of life and depression, physical health-related quality of life, behavioral health hospital nights, and use of services. RESULTS At three years, no differences were found in the effects of CEP versus RS on depression or mental health-related quality of life, but CEP had modest effects in improving physical health-related quality of life and reducing behavioral health hospital nights, and CEP participants had more social- and community-sector depression visits and greater use of mood stabilizers. Sensitivity analyses with longitudinal modeling reproduced these findings but found no significant differences between groups in change from baseline to three years. CONCLUSIONS At three years, CEP and RS did not have differential effects on primary mental health outcomes, but CEP participants had modest improvements in physical health and fewer behavioral health hospital nights.