A community engagement training program for basic and translational cancer researchers.

PURPOSE: There is an increasing awareness of the importance of patient engagement in cancer research, but many basic and translational researchers have never been trained to do so. To address this unmet need, a 1-year patient engagement training program for researchers was developed. METHODS: Eleven researchers and eleven paired research advocates participated. This program, designed for virtual delivery, included 3 didactic modules focused on (1) Community Outreach and Engagement principles and methods, (2) Communication skills, and (3) Team Science. This was followed by longitudinal projects to be completed by the researcher/advocate pairs, including learning about the research project, and co-authoring abstracts, manuscripts and grant proposals. Monthly group meetings allowed pairs to share their experiences. The program culminated in the pairs creating and presenting oral abstracts for the University of Kansas Cancer Center's Annual Research Symposium. RESULTS: All participants indicated that the modules had a positive impact on their ability to collaborate in research. Both researcher self-evaluations and patient advocate evaluations of their researcher partner showed an improvement in researcher communication competency. Results from the Patient Engagement in Research Scale showed that advocates were highly engaged. Within 1 year after program completion, participating pairs have completed four abstracts and 9 grant proposals. CONCLUSION: The program will be modified based on participant feedback, and can be adapted for future cohorts if an increased number of sessions per month and shortened program duration are desired. The program's virtual format allows scalability across institutions to potentially benefit large cohorts of researchers.

Instrumental activity of daily living limitations and supports in a clinic population of low-income Puerto Rican elderly adults with chronic diseases.

Latino older adults in the United States have disproportionately high rates of chronic and disabling medical conditions. Puerto Ricans have a higher prevalence of several chronic medical conditions and higher rates of functional disability than other Latinos. Earlier studies have documented that Puerto Rican older adults traditionally have relied mostly on family members for assistance with their functional needs, with low use of formal support services, but little is known about their functional help needs and caregiving practices. This study examined independent living and caregiving practices of community-dwelling Puerto Rican older adults in western New York using a mixed-methods approach with a sample of 49 individuals attending an inner-city primary care clinic. Standard instruments were used to obtain information on socioeconomic and health status and functional ability. Forty participants who needed help with any instrumental activities of daily living (IADLs) were probed qualitatively for how their needs were addressed. Participants averaged six chronic medical conditions, mean age was 76.2 ± 5.3, most reported annual household income of $15,000 or less and had low fluency in English, and all had healthcare insurance. For the most part, participants' children and spouses were primary caregivers, and few used formal support services. Nearly one-third reported having insufficient help. Qualitative findings elucidated how IADL needs were addressed. In this sample of indigent Puerto Rican older adults, most needed help with IADLs. Although family members most often helped, one-third had unmet or undermet needs. Linguistically and culturally congruent formal support services are still needed for Puerto Rican older adults and their family caregivers.