This is the Symposium's Keynote presentation by Carolyn M. Jenkins, DrPH, MSN, RD, LD, FAAN, who is the Ann Darlington Edwards Endowed Chair in Nursing and a Professor at the Medical University of South Carolina in Charleston. Dr. Jenkins reviews principles of CEnR (Community-engaged Research) with focus on CBPR (Community-based participatory research); describes community engagement in the context of research frameworks; explores methods for training academic and community members for CEnR; and reviews the Community Engaged Scholars Program and examples of CEnR and action.
OBJECTIVE: To develop a predictive model of cochlear implant (CI) performance in postlingually deafened adults that includes contemporary speech perception testing and the hearing history of both ears.
STUDY DESIGN: Retrospective clinical study. Multivariate predictors of speech perception after CI surgery included duration of any degree of hearing loss (HL), duration of severe-to-profound HL, age at implantation, and preoperative Hearing in Noise Test (HINT) sentences in quiet and HINT sentences in noise scores. Consonant-nucleus-consonant (CNC) scores served as the dependent variable. To develop the model, we performed a stepwise multiple regression analysis.
SETTING: Tertiary referral center.
PATIENTS: Adult patients with postlingual severe-to-profound HL who received a multichannel CI. Mean follow-up was 28 months. Fifty-five patients were included in the initial bivariate analysis.
INTERVENTION(S): Multichannel cochlear implantation.
MAIN OUTCOME MEASURES(S): Predicted and measured postoperative CNC scores.
RESULTS: The regression analysis resulted in a model that accounted for 60% of the variance in postoperative CNC scores. The formula is (pred)CNC score = 76.05 + (-0.08 x DurHL(CI ear)) + (0.38 x pre-HINT sentences in quiet) + (0.04 x long sev-prof HL(either ear)). Duration of HL was in months. The mean difference between predicted and measured postoperative CNC scores was 1.7 percentage points (SD, 16.3).
CONCLUSION: The University of Massachusetts CI formula uses HINT sentence scores and the hearing history of both ears to predict the variance in postoperative monosyllabic word scores. This model compares favorably with previous studies that relied on Central Institute for the Deaf sentence scores and uses patient data collected by most centers in the United States.
Gallstone disease exacts a considerable financial and social burden worldwide leading to frequent physician visits and hospitalizations. Based on their composition, gallstones are categorized as cholesterol, black pigment, and brown pigment, with each category having a unique structural, epidemiologic, and risk factor profile. Cholesterol crystal formation requires the presence of one or more of the following: (a) cholesterol supersaturation, (b) accelerated nucleation, or (c) gallbladder hypomotility/bile stasis. Some risk factors for cholesterol stones include age, gender, genetics, obesity, rapid weight loss, and ileal disease. Generally, pigment stones are formed by the precipitation of bilirubin in bile, with black stones associated with chronic hemolytic states, cirrhosis, Gilbert syndrome, or cystic fibrosis, and brown stones associated with chronic bacterial or parasitic infections.
Status and Potential of Community-Engaged Research to Investigate Physical Activity Interventions for Children with Autism Spectrum Disorder in Chinese-American Communities
Children with Autism Spectrum Disorder (ASD) engage in less physical activity (PA), and in one estimate (Curtin et al., 2010) were 1.3 times more likely to be obese than their typically developing (TD) peers. Barriers to PA in children with ASD exist at the individual, family/peer and community levels of the socio-ecological model. Research on multilevel adaptations to PA programs has been promising. With adapted coaching, adolescents with ASD have achieved fitness gains equal to those seen in TD children, and have performed high levels of moderate-intensity PA in community settings. Social skills development has also been noted. Community-engaged research is well suited to identifying barriers to PA and designing programs and lifestyle approaches to health. It may be particularly useful for research with children with ASD and their families from culturally diverse communities. Scant research has been conducted on PA in ASD, but it is almost non-existent among Chinese-American children/families, for whom familial and cultural perspectives on ASD, modes of exercise and health, and other factors may diverge from the typical American norm. This poster will: (1) review research on multi-level determinants of PA and exercise, and on programs for children with ASD in general; (2) review research on community-engaged approaches for addressing PA and related health challenges in ASD; (3) describe Chinese-American cultural variables that may influence participation in PA in families with children with ASD; and (4) propose ideas for new community-engaged research and sustainable partnerships that would address these challenges among Chinese-American children and families.
A Pilot Study: Understanding Health Literacy and Linguistic Factors Related to African Immigrants Engagement in Primary Health Care in Massachusetts
Culture impacts how individuals understand, communicate, and respond to health information. Immigrants to the U.S. come from diverse cultural groups and have varying understandings of health care and the U.S. health care system. The primary aim of this study is to explore cultural interpretations and beliefs of select health concepts and to assess the health literacy of African immigrants in Massachusetts. We are a partnership between UMass Graduate School of Nursing, Africans for Improved Access program at the Multicultural AIDS Coalition and Clark University. Using a CBPR approach has been valuable in the design of the study and in our ability to access and engage African immigrants. We are recruiting 100 African immigrants during cultural events, targeted outreach and gatherings in religious communities to complete a Freelist exercise, 2 health literacy assessment tools, and a general health survey. Results of the Freelist exercise will inform development of an interview guide that will be used with 3 Focus Groups of African immigrants to help us understand the cultural interpretation of frequently used health related words and phrases. We are assessing the feasibility and acceptability of 2 health literacy instruments to determine the appropriateness of using these assessments with an immigrant population. The association of health literacy to accessing primary care will be examined. The focus group and general health survey data will help us gain a better understanding of the primary care health experiences of African immigrants and potential factors that facilitate or hinder their engagement in primary health care.
One quarter of the population of Cape Cod is over age 65, and in the eight outermost towns on the peninsula of Cape Cod, known as the Lower and Outer Cape, the challenges of caring for an older population are compounded by the effects of rural isolation. As many residents have chosen to “age in place” with little family or social support, medical and behavioral health needs often go unaddressed due to the lack of access to needed healthcare and supporting services that plagues underserved rural areas. Outer Cape Health Services (OCHS), a federally-qualified community health center and the primary medical and behavioral health provider in the area, has established a home visit program to reach isolated patients who may otherwise be denied access to these services. This program is lead by the Care Coordination team, which collaborates with local Councils on Aging, the Visiting Nurses Association, EMS, and other community resources to identify and engage these complex, high-acuity patients and provide wrap-around services. However, gaps remain in communication among agencies regarding existing and potential cases. Additionally, little data exist on the health challenges faced by this underserved population, and how care coordination can better address medical and psychosocial needs. To address these gaps, a cross-departmental team at OCHS has begun a community-based research project with the goal of developing a network of consumers, providers and agencies to develop research questions and collaborate on interventions. The team is in the process of identifying key stakeholders and developing community-building strategies.
The American Foundation for Suicide Prevention (AFSP) strives to reduce suicide attempts and deaths through research, education, and advocacy. AFSP has been at the forefront of changing minds about suicide prevention and creating effective means of intervention.
Stigma and myths surrounding mental illness and suicide still prevail and contribute to its incidence. People often hesitate to admit suicidal ideation and to seek help. Healthcare professionals are in a key position to identify people who are suicidal and connect them with appropriate services. In order to do this, they need to not only know about suicide but be willing to intervene.
Advocacy is the act of creating political, economic, and social change. It is the professional responsibility of those working in healthcare to be active advocates for underserved populations where care is not optimal. This ability must be learned and practiced.
Educational opportunities are needed to address the cognitive components of suicide as a health issue and advocacy as a professional responsibility. However, the affective and procedural domains must also be addressed in order to make the transition of this knowledge to practical use. There is substantial evidence that service learning is effective in addressing attitudes towards marginalized issues. It is also a powerful mechanism to improve self-efficacy in a skill. Establishing a partnership between UMass and AFSP to develop service learning coursework to meet the goals of educating students in health-related majors in aspects of suicide prevention and advocacy would benefit both parties. Goals would include program development and evaluation.
Socio-cultural and Linguistic Adaptation of CDC CHANGE Action Guide to Conduct a Community Health Assessment in the Dominican Republic: A Multi-disciplinary and Mixed Methods Approach
Background. Third world communities like Las Malvinas, located in the Dominican Republic (DR), often face public health challenges. Instituting healthy communities requires collaborative public health services. The US has used evidence-based initiatives including the CDC’s CHANGE tool to address community health. There is a need to adapt these initiatives to other contexts. Clemson University (CU) students have partnered with Dominican University (UNIBE) and the Las Malvinas community to improve the community’s health and well-being.
Methods. The team’s ACTION steps include: assembling a community team and strategy, reviewing the CHANGE sectors, and gathering the data to use in the CHANGE tool. The Community Health Improvement Plan (CHIP) will be developed from that data. After reviewing reports on Las Malvinas and site visits alongside public health theory, students modified CHANGE data tools both culturally and linguistically.
Results. Five public health priorities for Las Malvinas were identified: sanitation, education, unwanted pregnancies, vaccine-preventable diseases, and chronic diseases. CU students will travel to Las Malvinas and collect data via focus groups, interviews, and GIS household survey, created by CU students.
Discussion. Adapting and translating evidence-based practices across cultures poses opportunities and challenges. CU research team designed this project by relying on expertise and collaboration with a local university and neighborhood organization. Challenges included: (a) working from abroad, (b) language barriers, (c) binational IRB approval, (d) adapting CHANGE tool, and (e) limited community organizations. Despite these challenges, this project showed the value of cross-cultural collaboration and use of public health assessment tools to reach communities worldwide.
Biographies of all the speakers at the 5th annual Community Engagement and Research Symposium, held Friday, March 25, 2016 at the University of Massachusetts Medical School, Worcester, MA.
View abstracts and full text of selected posters presented at the 2016 Community Engagement and Research Sympsoium
The Deaf community - a minority group of 500,000 Americans who use American Sign Language (ASL) - experiences trauma and addiction at rates double to the general population. Yet, there are no evidence-based treatments that have been evaluated to treat trauma, addiction, or other behavioral health conditions among Deaf people.
Current evidence-based treatments fail to meet the needs of Deaf clients. One example is Seeking Safety, a well-validated therapy for people recovering from trauma and addiction. Seeking Safety includes a therapist guide and client handouts for 25 therapy sessions, each teaching clients a safe coping skill. When Seeking Safety was used with Deaf clients, unique barriers were revealed with regard to the client materials: they were presented in complex English instead of ASL, nor sensitive to Deaf people’s culture, social norms, and history of oppression.
To address these barriers, Dr. Anderson assembled a team of Deaf and hearing researchers, clinicians, filmmakers, actors, artists, and Deaf people in recovery to develop Signs of Safety, a Deaf-accessible toolkit to be used with Seeking Safety. Signs of Safety is comprised of a therapist companion guide and population-specific client materials, including visual handouts and ASL teaching stories on digital video, which present key learning points via an “educational soap opera.”
Dr. Anderson is currently leading a pilot study of Signs of Safety. Preliminary results show that participants are reporting symptom reduction from baseline to follow-up and high levels of satisfaction with the model, giving us the confidence to further pursue this line of research.
WE ACT's Environmental Health and Justice Leadership Training (EHJLT) Program: A Tool to Help Disseminate Research to Community Members Who Live/Work in Northern Manhattan (NYC)
Background: WE ACT for Environmental Justice is a nonprofit organization whose work centers around three pillars: research, community organizing, and advocacy. Through long standing partnerships with academic institutions such as Columbia Center for Children’s Environmental Health and the NIEHS Center in Northern Manhattan, WE ACT has fostered opportunities for the translation of research conducted by both academic institutions and community members living in Northern Manhattan.
Methods: One tool that WE ACT uses to disseminate research is the Environmental Health and Justice Leadership Training (EHJLT) Program: a 10 week course where a cohort of 25 community members are introduced to environmental concerns affecting Northern Manhattan such as Clean Air Quality, Food Justice, Toxic Products, Affordable Transportation, Healthy Indoor Environments, among others. Guest presenters who are lead investigators or have expertise in the field are also invited to share their findings.
Results/Conclusion: Surveys collected at the beginning and end of the program demonstrated an increase in environmental health literacy. Graduates of the EHJLT program build upon the knowledge they gain by participating in campaign specific working groups, lobbying to pass statewide initiatives such as the Child Safe Products Act, and giving testimony at public hearings. Translating scientific evidence into sound policy is necessary for the creation and sustainability of healthy and equitable communities. Training programs similar to the EHJLT can be a helpful and replicable model in disseminating research and fostering capacity to decrease health disparities from the ground up.
The Engaged Department Initiative (EDI) is a place-based cross-institutional collaboration located in the Grand Rapids region. Participating organizations include Michigan Campus Compact (MiCC), Grand Valley State University (GVSU), Grand Rapids Community College (GRCC), and Aquinas College (AQ). This innovative ethnographic case study is focused on evaluating how well the initiative completes their goals of increasing faculty knowledge and skills, expanding students’ community engagement, fostering intra- and inter- collaborations between the three institutions of higher education, and enhancing community partnerships. The hopes of this initiative is to make a real difference in the community and to create engaged citizens. By disseminating this research, we aspire to offer recommendations for people interested in spanning boundaries and working on place-based change in their own region.
Complete list of Breakout Sessions with descriptions for the 5th annual Community Engagement and Research Symposium, held Friday, March 25, 2016 at the University of Massachusetts Medical School, Worcester, MA.
Agenda for the 5th annual Community Engagement and Research Symposium, held Friday, March 25, 2016 at the University of Massachusetts Medical School, Worcester, MA.
Complete list of Poster Session presentations with abstracts for the 5th annual Community Engagement and Research Symposium, held Friday, March 25, 2016 at the University of Massachusetts Medical School, Worcester, MA.
Comment on Comparative validation of nomograms predicting clinically insignificant prostate cancer. [Urology. 2013]
Despite the high prevalence of substance use disorder (SUD) and its frequent comorbidity with mental illness, individuals with SUD are less likely to receive effective SUD treatment from mental health practitioners than SUD counselors. Limited competence and interest in treating this clinical population are likely influenced by a lack of formal training in SUD treatment. Using a factorial survey-vignette design that included three clinical vignettes and a supplementary survey instrument, we investigated whether clinical psychology doctoral students differ in their level of negative emotional reactions toward clients with SUD versus major depressive disorder (MDD); whether they differ in their attributions for SUD versus MDD; and how their negative emotional reactions and attributions impact their interest in pursuing SUD clinical work. Participants were 155 clinical psychology graduate-level doctoral students (72% female). Participants endorsed more negative emotional reactions toward clients with SUD than toward clients with MDD. They were also more likely to identify poor willpower as the cause for SUD than for MDD. More than a third reported interest in working with SUD populations. Highest levels of interest were associated with prior professional and personal experience with SUD, four to six years of clinical experience, and postmodern theoretical orientation.
BACKGROUND: Although the benefits of early tracheostomy in patients dependent on ventilators are well established, the reasons for variation in time from intubation to tracheostomy remain unclear. We identified clinical and demographic disparities in time to tracheostomy.
METHODS: We performed a level 3 retrospective prognostic study by querying the University HealthSystem Consortium (2007-2010) for adult patients receiving a tracheostomy after initial intubation. Time to tracheostomy was designated early ( < 7 days) or late ( > 10 days). Cohorts were stratified by time to tracheostomy and compared using univariate tests of association and multivariable adjusted models.
RESULTS: A total of 49,191 patients underwent tracheostomy after initial intubation: 42% early (n = 21,029) and 58% late (n = 28,162). On both univariate and multivariable analyses, women, blacks, Hispanics, and patients receiving Medicaid were less likely to receive an early tracheostomy. Patients in the early group also experienced lower rates of mortality (OR, 0.84; 95% CI, 0.79-0.88).
CONCLUSIONS: Early tracheostomy was associated with increased survival. Yet, there were still significant disparities in time to tracheostomy according to sex, race, and type of insurance. Application of evidence-based algorithms for tracheostomy may reduce unequal treatment and improve overall mortality rates. Additional research into this apparent bias in referral/rendering of tracheostomy is needed.
A strong motivation for undertaking psychiatric gene discovery studies is to provide novel insights into unknown biology. Although attention-deficit hyperactivity disorder (ADHD) is highly heritable, and large, rare copy number variants (CNVs) contribute to risk, little is known about its pathogenesis and it remains commonly misunderstood. We assembled and pooled five ADHD and control CNV data sets from the United Kingdom, Ireland, United States of America, Northern Europe and Canada. Our aim was to test for enrichment of neurodevelopmental gene sets, implicated by recent exome-sequencing studies of (a) schizophrenia and (b) autism as a means of testing the hypothesis that common pathogenic mechanisms underlie ADHD and these other neurodevelopmental disorders. We also undertook hypothesis-free testing of all biological pathways. We observed significant enrichment of individual genes previously found to harbour schizophrenia de novo non-synonymous single-nucleotide variants (SNVs; P=5.4 x 10-4) and targets of the Fragile X mental retardation protein (P=0.0018). No enrichment was observed for activity-regulated cytoskeleton-associated protein (P=0.23) or N-methyl-D-aspartate receptor (P=0.74) post-synaptic signalling gene sets previously implicated in schizophrenia. Enrichment of ADHD CNV hits for genes impacted by autism de novo SNVs (P=0.019 for non-synonymous SNV genes) did not survive Bonferroni correction. Hypothesis-free testing yielded several highly significantly enriched biological pathways, including ion channel pathways. Enrichment findings were robust to multiple testing corrections and to sensitivity analyses that excluded the most significant sample. The findings reveal that CNVs in ADHD converge on biologically meaningful gene clusters, including ones now established as conferring risk of other neurodevelopmental disorders.