This report retrospectively examines the structure of an emerging community-academic participatory research (PR) partnership that was not sustainable, despite attempts to adhere to PR principles and demonstrable success in research outcomes. The influence of community and academic parent organizations on the PR process and outcomes is presented in the context of the Donabedian Model. We dissected the structural elements contributed by parent organizations to forming the structure of the PR partnership (memorandum of understanding, policy environment, human resources and effort, community and academic resources, expertise and experience, and funding) and explored the influence of potential and actual conflicts on the PR partnership's sustainability. The effect of potential and actual conflict on the PR process and quality of PR outcomes is discussed. Based on this, we conclude by proposing seven core standards for the establishment and development of emerging community-academic PR partnerships.

Background

Depression and physical function are particularly important health domains for the elderly. The Geriatric Depression Scale (GDS) and the Patient-Reported Outcomes Measurement Information System (PROMIS^®) physical function item bank are two surveys commonly used to measure these domains. It is unclear if these two instruments adequately measure these aspects of health in minority elderly.

Objective

The aim of this study was to estimate the readability of the GDS and PROMIS^® physical function items and to assess their comprehensibility using a sample of African American and Latino elderly.

Methods

Readability was estimated using the Flesch-Kincaid and Flesch Reading Ease (FRE) formulae for English versions, and a Spanish adaptation of the FRE formula for the Spanish versions. Comprehension of the GDS and PROMIS^® items by minority elderly was evaluated with 30 cognitive interviews.

Results

Readability estimates of a number of items in English and Spanish of the GDS and PROMIS^® physical functioning items exceed the U.S. recommended 5th-grade threshold for vulnerable populations, or were rated as 'fairly difficult', 'difficult', or 'very difficult' to read. Cognitive interviews revealed that many participants felt that more than the two (yes/no) GDS response options were needed to answer the questions. Wording of several PROMIS^® items was considered confusing, and interpreting responses was problematic because they were based on using physical aids.

Conclusions

Problems with item wording and response options of the GDS and PROMIS^® physical function items may reduce reliability and validity of measurement when used with minority elderly.

Purpose and scope

To produce a Spanish/English animated video about diabetes; to qualitatively assess cultural and linguistic appropriateness; and to test effectiveness at improving diabetes health literacy among Latino/Hispanics.

Methods

Participatory research and animation production methods guided development of the video. Cultural appropriateness was assessed through focused discussion group methods. A prospective randomized controlled trial tested the effectiveness of the Spanish version at improving diabetes health literacy, compared to "easy to read" diabetes information from the National Institute of Diabetes and Digestive and Kidney Diseases. Functional health literacy was measured by the Short Test of Functional Health Literacy in Adults. Diabetes health literacy was measured by the Diabetes Health Literacy Survey (DHLS).

Results

No significant differences were recorded between experimental (n = 118) and control groups (n = 122) at baseline on demographic characteristics, Short Test of Functional Health Literacy in Adults score, or DHLS score. Fifty-eight percent of the study participants had inadequate functional health literacy. Mean DHLS score for all participants and those having adequate functional health literacy were 0.55 and 0.54, respectively (inadequate diabetes health literacy). When adjusting for baseline DHLS score, sex, age, and insurance status, DHLS scores improved significantly more in the experimental group than the control group (adjusted mean = 55% vs 53%, F = 4.7, df = 1, P = .03). Interaction between experimental group and health literacy level was significant (F = 6.37, df = 2, P = .002), but the experimental effect was significant only for participants with inadequate health literacy (P = .009).

Conclusions

The positive effect on DHLS scores suggests that animation has great potential for improving diabetes health literacy among Latinos having limited functional health literacy. A study is needed that targets participants with inadequate health literacy and that uses the English and Spanish versions of the video.