Interviews With Lay Caregivers About Their Experiences Supporting Patients Throughout Kidney Transplantation.

Introduction: Lay caregivers provide essential support to patients throughout the kidney transplant process, pretransplant through discharge. Sparse data exists about kidney transplant caregiver experience and facilitators of caregiver engagement. The aim of this study was to explore and describe lay caregivers' accounts of supporting a patient before and early after kidney transplantation. Methods: Caregivers of recent kidney transplant recipients were individually interviewed about their experiences, coping strategies, and perspectives of center-specific support approaches for patients and caregivers in a single transplant center. Results: Inductive content analysis of transcribed interviews with 23 caregivers revealed 6 domain areas: visit preparation, initial evaluation, caregiver role discussion, exposure to support resources, transplant preparedness, and coping styles. Caregivers used and appreciated information offered by the transplant center, including materials directed to the patient. They recommended repeating information, online access, and adding video to complement print resources. They valued and requested information directed to them, both within passive materials and communication with providers. Social network interactions were helpful for practical, emotional, and informational support. Support group reminders and connection pathways to peers were suggested for both patients and caregivers. Conclusion: Findings highlight steps that can be taken by transplant centers and may stimulate caregiver engagement. Featuring caregiver-focused information and communication more prominently may support caregivers to improve patient progress in navigating kidney transplantation.

Using Community-Based Participatory Research to Create Animated Videos to Attenuate Disparities in Access to Kidney Transplant Information.

Introduction: Community-based participatory research and animated video offer promising approaches to attenuate disparities in access to kidney transplant information. Project Aims: We refined an evidence-based animated video curriculum (Kidney Transplant and Donation Information Made Easy) designed for diverse individuals, that is currently being trialed to advance kidney transplant access among referred patients at a single transplant center, to further accommodate information needs in earlier stages of the path to transplant (pre-referral) and to enhance fit for Black and Hispanic people. Design: We describe formation of an academic-community partnership and the application of qualitative research methods and partnership discussions to refine the Kidney Transplant and Donation Information Made Easy videos. A simple content analysis was undertaken of intervention refinement transcriptions, minutes, and meeting notes. Results: We formed a community steering committee and advisory board of local members predominantly of minoritized race or ethnicity. Full engagement with community members is evident in the program's adaptation process. Essential refinement elements were adaptation of 17 original videos and iterative development of 8 new videos with the community, conducting parallel cognitive interviews of an expanded sample of stakeholders, maintaining the theoretical grounding of Elaboration Theory, communication/multimedia learning best practices, and self-efficacy framework, and doing Spanish-language translation. Conclusions: Applying community-based participatory research principles and qualitative methods, we produced a culturally grounded adaptation of the Kidney Transplant and Donation Information Made Easy videos that provides information about kidney transplantation from primary care to transplantation. This approach is likely to strengthen our community partnership and eventual community acceptance of the intervention during the implementation phase. Challenges were achieving consensus and adding Spanish-language translation.

Video education to facilitate patient outreach about living kidney donation: A proof of concept.

BACKGROUND: Increasing living-donor kidney transplantation (LDKT) requires education of transplant candidates and their social network. This pre-post study tested the feasibility and acceptability of KidneyTIME, an intervention which leverages LDKT video-based educational content designed for sharing. METHODS: Adult kidney candidates undergoing transplant evaluation/re-evaluation and their caregivers at a single transplant center viewed different sets of KidneyTIME videos prior to evaluation. Change in LDKT knowledge, self-efficacy, and concerns was assessed before and immediately after exposure and 3 weeks later. Also assessed were post-exposure program feedback, online use, and living donor (LD) inquiry. RESULTS: A total of 82 candidates and 79 caregivers participated. Viewers of KidneyTIME demonstrated increases in mean LDKT knowledge by +71% and communication self-efficacy by +48%, and reductions in concerns by -21%. The intervention was received positively, with over 95% of participants agreeing that the videos were understandable, credible, and engaging. By 3 weeks follow-up, 58% had viewed it again, 63% of family clusters had shared it, and 100% would recommend the program to a friend. Time to LD inquiry was similar to historic controls. CONCLUSION: KidneyTime improved facilitators of LDKT, was rated as highly acceptable, and was highly shared, but did not impact LD inquiry during the COVID-19 pandemic.

School-Based Obesity Intervention Associated with Three Year Decrease in Student Weight Status in a Low-Income School District.

School-based interventions may be a way to address increasing rates of childhood obesity. Following an obesity intervention implemented by a low-income school district we found evidence of weight status change among district students. The school district served 5,000 children in Western New York at that time and approximately 4,000 students were in the target group (grades 3-12). The district allocated federal grant funds to implement changes to physical education equipment and curriculum, health education curriculum, and school food and to offer afterschool access to equipment and activities. As part of the grant reporting requirements, school staff measured student height and weight twice yearly for three years. We were subcontracted as evaluators for this grant and district staff shared this de-identified data with us for assistance with grant reporting. We obtained IRB approval from SUNY at Buffalo for analysis and publication of the data. Data analysis involved longitudinal descriptive and inferential (paired-samples t tests, Chi square tests) statistical analyses of Body Mass Index (BMI) percentiles of students with baseline and endpoint height and weight measurements (n = 2,259). Overall the mean BMI percentile of students decreased significantly from 70.4 to 65.7% (p < 0.001). This exceeds the change in BMI percentile seen at the national level. There was a significant decrease in the proportion of students categorized as overweight or obese (p < 0.001). Conclusions are limited due to the lack of a control population however they indicate that a three year multilevel school-based intervention involving physical activity and nutritional changes was correlated with improved weight status among participating school children.

"Living well with diabetes": evaluation of a pilot program to promote diabetes prevention and self-management in a medically underserved community.

A substantial disparity exists in the prevalence and effective self-management of diabetes among African Americans in the United States. Community-level programs have the potential to affect self-efficacy and may be helpful in overcoming common barriers to self-management. The Neighborhood Health Talker Program used community members trained as cultural health brokers to engage their communities in conversations about "living diabetes well." Program evaluators used mixed methods to analyze post-conversation surveys and Health Talker field notes. These indicated an increase in diabetes-related knowledge and increased confidence among conversation participants. Conversations included discussion of barriers and facilitators to lifestyle changes and effective self-management that are frequently overlooked in a clinical setting.

Transforming community members into diabetes cultural health brokers: the Neighborhood Health Talker project.

PURPOSE: The purpose of this study was to evaluate a community-based diabetes education pilot project. The Neighborhood Health Talker project aimed to train and implement cultural health brokers primarily targeting communities of color to improve community members' diabetes knowledge and diabetes self-management skills. A secondary aim was to establish diabetes resource libraries accessible to communities that normally experience barriers to these resources. METHODS: Recruited community members completed 1 week of formal training developed by a multidisciplinary team in Buffalo, NY. The effect of training was evaluated through the use of baseline surveys, a pretest/posttest covering all training content, and daily quizzes evaluating knowledge relevant to each of the five training modules. Trained NHTs then held at least five community conversations in various locations and administered anonymous postconversation surveys to participants. Descriptive statistics and qualitative analysis techniques were used to summarize test, quiz, and survey results. RESULTS: Twelve women and 1 man completed the training program. Working alone as well as in pairs, each held at least five community conversations reaching over 700 community members of all ages over 3 months and established 8 diabetes resource libraries in the community. All trainees increased their diabetes knowledge and confidence as well as their abilities to perform the tasks of a cultural health broker. Trainees also indicated that the goals they set at training initiation were met. CONCLUSIONS: The training was successful in increasing trainee knowledge and confidence about diabetes prevention and self-management. Participants not only developed proficiency in discussing diabetes, they also made important lifestyle changes that demonstrated their commitment to the cause and the project. Low-cost initiatives like this are easily reproducible in other communities of color and could be modified to meet the needs of other communities as well.

Knowledge and use of ethnomedical treatments for asthma among Puerto Ricans in an urban community.

PURPOSE: Puerto Ricans have higher lifetime and current asthma prevalence than other racial and ethnic groups in the United States. A great many Hispanics use ethnomedical therapies for asthma. This study elicited participant knowledge of ethnomedical therapies, developed a typology of the therapies, and considered whether some types are used or deemed efficacious based, in part, on information source. METHODS: Eligible participants were randomly selected from the medical records of an inner-city primary care clinic serving a predominantly Hispanic community in Buffalo, New York. Thirty adult Puerto Ricans who had asthma or were care-givers of children with asthma were interviewed in person using a semistructured instrument. Qualitative data analysis followed a content-driven immersion-crystallization approach. Outcome measures were ethnomedical treatments for asthma known to participants, whether these treatments were used or perceived effective, and the participant's information source about the treatment. RESULTS: Participants identified 75 ethnomedical treatments for asthma. Behavioral strategies were significantly more likely to be used or perceived effective compared with ingested and topical remedies (P <.001). Among information sources for ingested and topical remedies, those recommended by community members were significantly less likely to be used or perceived effective (P <.001) compared with other sources. CONCLUSIONS: This sample of Puerto Ricans with a regular source of medical care was significantly more likely to use or perceive as effective behavioral strategies compared with ingested and topical remedies. Allopathic clinicians should ask Puerto Rican patients about their use of ethnomedical therapies for asthma to better understand their health beliefs and to integrate ethnomedical therapies with allopathic medicine.

The association between perceived social support and health among patients at a free urban clinic.

OBJECTIVE: This study examines the association between perceived social support and the prevalence of physical and mental health conditions among adult patients of an urban free medical clinic. METHODS: Patients (n = 289) completed a health risk assessment (HRA) questionnaire that addressed a number of medical and social issues, including perceived social support and whether patients had been told they had certain health conditions. Among these questions were 2 validated instruments: the PRIME-MD for mental health disorder assessment and CAGE for alcohol risk assessment. A deidentified database of responses was analyzed for statistical associations between perceived social support and these health conditions. RESULTS: Among those with insufficient perceived social support there were higher rates of having physician-measured overweight/obesity, a heart condition, a previous heart attack, anxiety, and depression. The association between perceived social support and cardiovascular health existed among women but not among men. Higher income, not smoking, and consumption of high-fiber foods were associated with sufficient social support. CONCLUSION: Perceiving sufficient social support was associated with lower rates of several mental and physical health disorders. Social support may act as a barrier or buffer to poor health caused by the stressful living conditions often experienced by low-income underinsured people. Males and females may experience this social support buffering differently.

The health status of patients of a student-run free medical clinic in inner-city Buffalo, NY.

BACKGROUND: This study explores the health status and the social and economic correlates of adults 20 years of age and older who presented at an urban free medical clinic in Buffalo, NY, between 2002 and 2005. METHODS: Clinic staff asked patients to fill out a Health Risk Assessment questionnaire that addressed their chronic disease and illness history, mental health, social support, substance use, income, education, and housing. Through statistical analysis of 469 anonymous patient questionnaires, we identified prevalent health conditions in this patient population and compared these rates to regional and national data. RESULTS: Of those patients 20 years of age and older, 70% earned less than US $10,000 a year. The rates of obesity, hypertension, asthma, diabetes, anxiety, and depression were higher in this population than in the Buffalo, NY, region and the general United States population. CONCLUSION: The data reflect the health disparity experienced by low-income minority populations in the United States and emphasize a need to plan additional services that target hypertension, heart disease, obesity, diabetes, and mental health disorders such as anxiety and depression. Findings also serve as an introduction to the patient population for volunteer medical students who have limited exposure to urban, low-income populations.

Insuring the uninsured: A student-run initiative to improve access to care in an urban community.

CONTEXT: There are 44 million uninsured Americans. Lack of insurance creates a major barrier for the poor and near poor to get adequate medical attention. A portion of these are eligible for insurance and either do not know they are eligible or have difficulty navigating the application process. OBJECTIVE: To evaluate the success of University at Buffalo medical students at a free clinic in helping patients enroll in government-sponsored insurance plans. DESIGN: Observational study SETTING: The Lighthouse Free Medical Clinic--a student-run free clinic operating in an urban minority Buffalo, NY neighborhood. PATIENTS: Five-hundred-seventy-nine inner-city, low-socioeconomic-status patients age <65. INTERVENTION: All patients are screened, and those eligible are encouraged and assisted in completing insurance applications. OUTCOME MEASURES: Primary outcome is the percentage of patients who completed the application process. RESULTS: Five-hundred-seventy-nine patients were seen from October 2003 through October 2004; 319 (55%) were uninsured. Fifty-nine (26%) of those uninsured were found to be eligible for insurance. Fifty-seven applications were initiated, and 23 (40%) were completed and accepted. CONCLUSIONS: There are a significant number of people using the free clinic who are eligible for insurance. The number-one reason adults were ineligible was household income exceeding the state limit. Success of this project provides support for the use of medical student volunteers to assist in insurance application completion in community settings.

Identifying barriers and facilitating factors to improve screening mammography rates in women diagnosed with mental illness and substance use disorders.

Little is known about screening mammography rates among women diagnosed with mental illness-even though some studies have suggested that this population might be particularly vulnerable to breast cancer. The purpose of this pilot study was to identify facilitators and barriers to mammography among women diagnosed with mental illness and/or substance use disorders. Four focus groups were conducted, with a total of 26 women, ages 40-65 years, with mental illness and/ or substance use disorders. Analysis was performed using the grounded-theory editing approach. Several major themes emerged from the transcripts: (1) motivators for obtaining mammograms, (2) fears and concerns, (3) shame and embarrassment, (4) the clinical environment, (5) provider-patient communication, and (6) the need for increased patient education. A family history of breast cancer and/or cancer was the most powerful motivator among focus group participants for obtaining a mammogram. Doctor recommendations and referrals were also identified as key facilitating factors. The overall knowledge of mammography and breast cancer among these women suggested educational deficiencies-despite extensive breast cancer screening and awareness campaigns. The findings highlight the importance of patient education as well as the positive effects of physician recommendations to encourage patients to receive breast cancer screening.