Advancing Community-Based Participatory Research to Address Health Disparities in Hawai'i: Perspectives from Academic Researchers.

Community-based participatory research (CBPR) continues to be recognized as an effective research approach in which academic researchers work in partnership with communities to address health disparities. Although the literature suggests benefits associated with CBPR, more needs to be done to advance CBPR to ultimately reduce health disparities. Hawai'i presents a research-rich opportunity for CBPR because of its ethnic diversity and geographic location, resulting in close-knit communities with unique experiences and concerns. This study aims to better understand the experiences of academic researchers who are conducting CBPR in Hawai'i and their perceptions of its benefits and challenges as well as recommendations to advance the field. Twelve academic researchers with Hawai'i-based CBPR experience were interviewed. Four major themes emerged from their responses: the importance of prioritizing relationship-building; reciprocal learning and other benefits of CBPR; navigating the tensions between CBPR and funding priorities; and building an academic setting that supports CBPR. Increasing awareness of CBPR and its benefits, as well as transforming the culture in all spaces where CBPR occurs may maximize its potential to ultimately promote health equity.

Participant-Direction in a Culturally Diverse, Rural Population: The Hawaìi Community Living Program.

The Hawaii Community Living Program was a participant-direction pilot project aimed at rural, multicultural, and community-dwelling older adults at risk of institutionalization. This evaluation examined participant outcomes, and explored the role of culture, health literacy, and rural settings in participant-direction programs. The program enrolled 91 participants and, of these enrollees, helped 84 (92.3%) participants avoid institutionalization and spend down to Medicaid. Findings indicated that Program Coaches needed to be culturally appropriate and creative in arranging for services and the delivery of goods and supplies. Results suggested that participants need to be health literate to direct their care, but further research is needed.

Better care for complex, challenging clients: Hawaii's training program to improve residential long-term care.

The Kupuna Adult Care Home Project is an innovative training program designed to improve the skills of care home and adult foster home operators in Hawaii. Clients in residential settings are increasingly likely to have complex problems. The project developed nine modules on topics such as dementia care, diabetes, and fall prevention based on stakeholder input and a national scan of best practices. A total of 787 persons were trained. An evaluation indicated that training significantly improved knowledge and that trainees were highly satisfied with the training. A secondary State of the Industry survey indicated that many care home and adult foster home caregivers are aging themselves and their children may not take over the family business. By combining practical knowledge and active learning strategies to work through real-life scenarios, the Kupuna Adult Care Home project is a promising training model.

Advancing research in transitional care: challenges of culture, language and health literacy in Asian American and native Hawaiian elders.

Recent federal policy supports an individual's preference for home and community-based long-term care, even among nursing home residents. Optimizing transitions from the nursing home to home is a complex undertaking that requires addressing the interrelationships between health literacy and cultural-linguistic factors in the nation's increasingly diverse older adult population. We look at four Asian American and Pacific Islander elder populations to illustrate that differing health profiles and cultural-linguistic values can affect the type of care and support needed and preferred. A research gap exists that links these factors together for optimal transitional care. The paper presents a conceptual framework and proposes a six-point research agenda that includes family assessments of health literacy abilities, exploring the relationship between culture, health, and decision-making, and the development/adaptation of transition planning tools.

Empowered diabetes management: life coaching and pharmacist counseling for employed adults with diabetes.

The Hawai'i Demonstration to Maintain Independence and Employment was a randomized controlled trial examining the effect of a participant-driven, multicomponent intervention on 190 employed adults with diabetes, 36% of whom were Asian and 35% of whom were Native Hawaiian or Pacific Islander. A no treatment concurrent control group was used, and the treatment group was provided an intervention that paired each participant with a life coach and a pharmacist counselor with whom they worked to achieve collaboratively chosen goals. Treatment fidelity data suggest that the intervention was largely implemented as planned. Life coaches and pharmacists performed key program functions with high to moderate adherence. The quality of their adherence to the intervention model ranged from basic to above basic and below basic to above basic for life coaches and pharmacists, respectively. Results of repeated-measures analysis of covariance analyses indicate that the intervention had a significant positive effect on participants' diabetes self-efficacy, quality of life, and body mass index but not on hemoglobin A1c levels. Further analyses examining just the treatment group indicate a dosage effect, with body mass index and quality of life outcomes optimized among participants who engaged in a greater number of sessions with life coaches and pharmacists. Implications of the study findings for practice are discussed.

Self-perceptions on the impact of diabetes among working adults: insights into disability prevention.

Effective diabetes self-management requires persons to be active participants in their care to prevent poor function and maintain independence and employment. Persons' perceptions and understanding of the potential impact of the disease could influence their self-management practices and success. This study explores perceptions on the impact of diabetes on future independence and employment. Findings indicate that 34% of participants believed diabetes would affect their employment, and 57% believed it would impact their independence. Logistic regression analyses showed that participants who believed that diabetes would impact employment were more likely to be younger, Native Hawaiian, and in poor physical health and to have been diagnosed with diabetes for a longer period of time. Those concerned with future independence were more likely to be younger and in poor physical and mental health. Understanding the associations between individual characteristics and perceived future abilities may enable healthcare professionals to tailor health education, promotion, and maintenance interventions to the needs of specific sub-populations of diabetics.

Hawai'i's "Going Home Plus" project: a new option to support community living.

The Going Home Plus project facilitates the transition of individuals from hospitals, nursing facilities, and intermediate care facilities for the mentally retarded (ICF-MRs) into community settings. The project is a collaborative effort between the State of Hawai'i Department of Human Services (DHS), the University of Hawai'i Center on Disability Studies and their community partners to help elderly and younger persons with disabilities who have been living in an institution for at least six months and express a choice for community living. The project, which provides services such as transition coordination and telemedicine, strives to become a valuable resource for institutionalized patients, their families, and medical professionals.

Transitioning residents from nursing facilities to community living: who wants to leave?

OBJECTIVES: To examine nursing facility residents' or their legal proxies' perspectives on transitioning out of nursing facilities by assessing residents' perceptions of their ability to live more independently, their preferences regarding leaving the facility, and the feasibility of transitioning with community support. DESIGN: Analysis of survey findings from the California Nursing Facility Transition Screen (CNFTS). SETTING: Eight nursing facilities in southern California. PARTICIPANTS: All chronic maintenance, long-stay residents receiving Medi-Cal (California's Medicaid program) were eligible for the study (n=218). Of these, 121 (56%) self-consenting residents or legal proxies were interviewed. No presumptions were made as to which residents were appropriate candidates for transition based on health or functional capacity. MEASUREMENTS: CNFTS contains 27 open- and closed-ended questions on preference, ability, and feasibility of transitioning. RESULTS: Twenty-three percent of residents and proxies believed that the resident had the ability to transition; 46% indicated a preference to transition; and after discussing potential living arrangements and services, 33% thought that transitioning would be feasible. Of those who consented to allow access to their Minimum Data Set 2.0 (MDS) information (n=41; 34% of the sample), agreement in the assessment of preference was found in 39% of cases. CONCLUSION: Transition decisions are complex and include preference, as well as perceptions of the resident's ability to live in a more independent setting and the feasibility of transitioning. Compared with the MDS, the screen identified a higher proportion of residents who want to transition, suggesting that a systematic approach to assessing the complex decision to transition is needed.

High-cost users among dual eligibles in three care settings.

This study compares the expenditure patterns and characteristics of high-cost dual eligibles to normative-cost dual eligibles within institutional and community settings. Using claims records for people dually eligible for both Medicare and Medicaid in 18 California counties (n=349,433) in 2000, high-cost users in the long-stay institutional care setting spent a much higher amount and a much greater proportion of total costs in Medi-Cal (61%) but spent less proportionally in Medicare (39%) than high-cost users in the long-term community care (66% of total costs from Medicare) or episodic care (79% of total costs from Medicare) setting. Although individuals who are long-stay nursing facility residents are high-cost in the overall sample, multinomial logistic regressions revealed that the impact of diseases/conditions on high-cost status varied within each setting. These findings suggest that policymakers and providers should consider care setting as an important component when designing disease management strategies.

Building an infrastructure to prevent falls in older Californians: the Fall Prevention Center of Excellence.

The Fall Prevention Center of Excellence (Center), a consortium of federal, state, and private organizations, was established in 2005 to guide the implementation of a statewide initiative to prevent falls among older Californians. The process began with the convening of a representative group of recognized leaders in California's health and human services in 2003. This group engaged in a 2-day strategic planning process that culminated in the development of the California Blueprint for Fall Prevention. The overarching goal of the Blueprint is to build a statewide infrastructure for fall prevention services and programs that will serve as a model for the rest of the country. The specific goals of the Center are to establish fall prevention as a key public health priority in California; create, test, and evaluate effective and sustainable fall prevention programs; and build a comprehensive and sustainable fall prevention system in California. To accomplish these goals, the Center is currently engaged in developing and disseminating fall prevention tools and informational resources directed at the needs of both consumer and professional audiences; linking organizations involved in fall prevention while increasing awareness of fall prevention as an important public health issue; and helping communities build their capacity to effectively address falls in older adults through the delivery of integrated fall prevention services and "best practice" programs.

Building integrated information systems for chronic care: the California experience.

For over three decades, chronic-care services have been described as fragmented, complex, difficult to access, overlapping, and duplicative in function. Although a number of remedies have been implemented to improve service delivery, little has been written about the potential of integrated information systems (IIS) to serve as a remedy to fragmentation. We begin to address this gap by comparing and contrasting three unique models of chronic-care IIS developed in California to improve service delivery. To analyze the current status of each IIS, we apply six design criteria: (1) the information on programs and services is comprehensive, (2) the system has the capacity to serve the needs of diverse users, (3) the system integrates multiple layers and levels of information, (4) information from multiple sources is standardized and uniform, (5) information can be accessed in a timely manner, and (6) provisions are adequate to meet all requirements for privacy and confidentiality. Although much work remains to be done, there is reason to be optimistic that innovative IIS can contribute to the development of more effective chronic-care delivery systems.