Leveraging Existing Datasets to Advance Family Caregiving Research: Opportunities to Measure What Matters.

More than 17.7 million people in the U.S. care for older adults. Analyzing population datasets can increase our understanding of the needs of family caregivers of older adults. We reviewed 14 U.S. population-based datasets (2003-2023) including older adults' and caregivers' data to assess inclusion and measurement of 8 caregiving science domains, with a focus on whether measures were validated and/or unique variables were used. Challenges exist related to survey design, sampling, and measurement. Findings highlight the need for consistent data collection by researchers, state, tribal, local, and federal programs, for improved utility of population-based datasets for caregiving and aging research.

Predictors of cervical cancer screening for refugee women attending an international family medicine clinic in the United States.

PURPOSE: Cervical cancer screening (CCS) rates are lower for foreign-born women in the United States (U.S.) compared with the overall population. This study aimed to determine the CCS rate and predictors among refugees who were identified as female attending a family medicine clinic. METHODS: A retrospective chart review included refugee individuals aged 21+, seen in the previous 3 years (3/23/2015-3/20/2018), without hysterectomy (n = 525). Lab results determined CCS rate. Chi-square and logistic regression models explored predictors of CCS. RESULTS: Overall, 60.0% were up-to-date (UTD) on CCS. Individuals aged 30-49, married, and with [Formula: see text] 1 child had higher odds of being UTD. Ten or more years living in the U.S. was a significant bivariate predictor of CCS, and approached significance in the multivariate model. CONCLUSION: This study begins to fill gaps in knowledge about cervical cancer control among individuals who resettled in the U.S. as refugees and, given that CCS rates are suboptimal, informs clinical practice improvements and directions for future research.

A survey of cancer care institutions in Nepal to inform design of a pain management mobile application.

BACKGROUND: One way to improve the delivery of oncology palliative care in low and middle-income countries (LMICs) is to leverage mobile technology to support healthcare providers in implementing pain management guidelines (PMG). However, PMG are often developed in higher-resourced settings and may not be appropriate for the resource and cultural context of LMICs. OBJECTIVES: This research represents a collaboration between the University of Virginia and the Nepalese Association of Palliative Care (NAPCare) to design a mobile health application ('app') to scale-up implementation of existing locally developed PMG. METHODS: We conducted a cross-sectional survey of clinicians within Nepal to inform design of the app. Questions focused on knowledge, beliefs, and confidence in managing cancer pain; barriers to cancer pain management; awareness and use of the NAPCare PMG; barriers to smart phone use and desired features of a mobile app. FINDINGS: Surveys were completed by 97 palliative care and/or oncology healthcare providers from four diverse cancer care institutions in Nepal. 49.5% (n = 48) had training in palliative care/cancer pain management and the majority (63.9%, n = 62) reported high confidence levels (scores of 8 or higher/10) in managing cancer pain. Highest ranked barriers to cancer pain management included those at the country/cultural level, such as nursing and medical school curricula lacking adequate content about palliative care and pain management, and patients who live in rural areas experiencing difficulty accessing healthcare services (overall mean = 6.36/10). Most nurses and physicians use an Android Smart Phone (82%, n = 74), had heard of the NAPCare PMG (96%, n = 88), and reported frequent use of apps to provide clinical care (mean = 6.38/10, n = 92). Key barriers to smart phone use differed by discipline, with nurses reporting greater concerns related to cost of data access (70%, n = 45) and being prohibited from using a mobile phone at work (61%; n = 39). CONCLUSIONS: Smart phone apps can help implement PMG and support healthcare providers in managing cancer pain in Nepal and similar settings. However, such tools must be designed to be culturally and contextually congruent and address perceived barriers to pain management and app use.

Self-collection of samples for HPV testing to increase participation in cervical cancer screening by immigrant women: An integrative review.

OBJECTIVE: To examine methods and results of studies assessing self-collection of cervico-vaginal samples for human papillomavirus (HPV) testing by immigrant women for insights into how future research using this method with unique subpopulations of women may improve the rates of cervical cancer screening (CCS) compared to current strategies. DATA SOURCES: Four electronic databases were systematically searched through March 2020, with no limits applied. A manual review of reference lists was also completed. STUDY SELECTION: The search resulted in 63 articles. After removal of duplicates, 36 were reviewed against inclusion criteria. A manual review of reference lists yielded two additional studies. The final sample included 15 relevant publications representing 13 unique empirical studies. DATA EXTRACTION: Data related to study methodology and empirical results were extracted into table form. DATA SYNTHESIS: The methods of the studies were summarized and synthesized, including diversity of participants, community engagement, including collaboration with public health nurses or community health workers. In addition, methods and findings related to the educational components of the studies, and empirical findings related to various cultural groups, were described. CONCLUSION: To reduce health disparities in CCS, researchers should focus on diverse groups, such as immigrant women, to understand important individual and group-specific factors that may influence screening, including whether self-collection of samples for HPV testing along with appropriate education and support for follow-up will address these factors.

Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.

INTRODUCTION: Intrahospital transitions (IHTs) represent movements of patients during hospitalisation. While transitions are often clinically necessary, such as a transfer from the emergency department to an intensive care unit, transitions may disrupt care coordination, such as discharge planning. Family carers often serve as liaisons between the patient and healthcare professionals. However, carers frequently experience exclusion from care planning during IHTs, potentially decreasing their awareness of patients' clinical status, postdischarge needs and carer preparation. The purpose of this study was to explore family carers' perceptions about IHTs, patient and carer ratings of patient discharge readiness and carer self-perception of preparation to engage in at home care. METHODS: Sequential, explanatory mixed-methods study involving retrospective analysis of hospital inpatients from a parent study (1R01HS026248; PI Wallace) for whom patient and family carer Readiness for Hospital Discharge Scale (RHDS) score frequency of IHTs and patient and caregiver characteristics were available. Maximum variation sampling was used to recruit a subsample of carers with diverse backgrounds and experiences for the participation in semistructured interviews to understand their views of how IHTs influenced preparation for discharge. RESULTS: Of discharged patients from July 2020 to April 2021, a total of 268 had completed the RHDS and 23 completed the semistructured interviews. Most patients experienced 0-2 IHTs and reported high levels of discharge readiness. During quantitative analysis, no association was found between IHTs and patients' RHDS scores. However, carers' perceptions of patient discharge readiness were negatively associated with increased IHTs. Moreover, non-spouse carers reported lower RHDS scores than spousal carers. During interviews, carers shared barriers experienced during IHTs and discussed the importance of inclusion during discharge care planning. CONCLUSIONS: IHTs often represent disruptive events that may influence carers' understanding of patient readiness for discharge to home and, thus, their own preparation for discharge. Further consideration is needed regarding how to support carers during IHT to facilitate high-quality discharge planning.

Impact of COVID-19 visitation policies and hospital capacity on discharge readiness in medicine patients.

Background: COVID-19 impacted the experience of being hospitalized with the widespread adoption of strict visitation policies to ensure healthcare worker safety. One result was decreased time of caregivers at the bedside of hospitalized patients. Objective: To understand the impact of pandemic-related system effects on patient-reported discharge preparation. Design: This mixed methods study included interviews with a sample of discharged patients during April 2020, and quantitative hospital data from April 2020 to February 2021. Participants: 616 patients completed a measure of discharge readiness on their day of discharge and 38 patients completed interviews about their discharge experiences. Main measures: Readiness for discharge (RHDS), visitation policies, ward structure changes, COVID-19-unit census, time into the COVID-19 pandemic, patient characteristics (age, sex, race/ethnicity), admission type (planned/unplanned, for COVID-19), and discharge destination (home, home health, skilled nursing). Key results: Adult patients aged 30-45 (vs. young and older adult patients) and those being discharged to places other than home (e.g., skilled nursing facility) or to out-of-state residences report lower readiness (p < 0.05) on RHDS. Patient interviews revealed some gaps in discharge communication but, overall, patients expressed high discharge readiness and few concerns about how COVID-19 system changes impacted their discharge preparation. Conclusions: While there is some evidence that visitation policies and unit census may impact patient perceptions of discharge preparation, personal characteristics contributed more significantly to discharge readiness than system changes during COVID-19. Participant interviews demonstrated agreement, as most participants were discharged home and identified strong personal feelings of readiness for discharge.Clinical trials registration: ClinicalTrials.gov ID NCT04248738, https://clinicaltrials.gov/ct2/show/NCT04248738. Supplementary Information: The online version contains supplementary material available at 10.1007/s44250-023-00060-8.

Co-constructing collaboration: An evidence-based approach to advance and evaluate equitable global public health research partnerships.

Equitable global health partnerships are essential to promote innovative research and strengthen research capacity to address critical public health challenges, but how to optimally evaluate such collaborations is unclear. This was a sequential, multi-method study that utilized an electronic survey informed by the literature followed by semi-structured interviews to comprehensively evaluate the experience of participating in a global research-capacity building collaboration between Nepal and U.S. clinicians and investigators. De-identified quantitative survey were analyzed to calculate descriptive and summary statistics, along with crosstabs of each variable by group. Groups were defined based on country-of-origin and Chi Square statistics calculated to assess for statistically significant differences (p<0.05) between groups. Interviews were analyzed using a descriptive qualitative approach to develop an overall thematic map. 22 survey responses (52.4% response rate) were analyzed; 13 (59.1%) from Nepal, 9 (40.9%) from the U.S. Eight participants (4 Nepal; 4 U.S.) were interviewed. Over the course of the project, all participants reported gaining experience and confidence with research. The majority of participants "strongly agreed" there was a shared understanding of goals, priorities and strategies (Nepal, 58.3%, n = 7; U.S., 88.9%, n = 8;) and that power was shared equally (Nepal, 58.3%, n = 7; U.S., 55.6%, n = 5). The over-arching theme that emerged from the interviews was the importance of 'establishing community' which participants discussed within the broader context of COVID-19. Overall, team members reported strong bi-directional benefit and a greater emphasis on perceived benefits versus challenges. Our survey tool and interview guide, designed to holistically evaluate the impact of a global partnership across various levels of the Social Ecological Model, with particular attention to power dynamics and equity, can be adapted and used by others engaged in similar research capacity collaborations.

Caregiver Inclusion in IDEAL Discharge Teaching: Implications for Transitions From Hospital to Home.

PURPOSE: Despite recognition that unpaid (e.g., family, friends) caregivers (caregivers) play an important role in successful transitions home after hospitalization, limited information is available about whether and how caregiver experiences of discharge align with current strategies for providing high-quality discharge processes, and how these experiences at discharge impact successful transitions home. The purpose of this study was to explore perceptions of caregivers regarding their discharge preparation, focusing particular attention on whether and how they believed discharge preparation impacted postdischarge patient outcomes. METHODS: We conducted in-depth, case interviews with four English-speaking caregivers (61-75 years of age). Content analysis was framed by the nature of caregiver involvement proposed by the Agency for Healthcare Research and Quality's (AHRQ's) IDEAL (Include, Discuss, Educate, Assess, Listen) discharge planning strategy. RESULTS: Caregivers reported receiving clear discharge instructions, or basic education, and yet felt only passively included in discharge teaching. Once home, the caregivers reported gaps in their knowledge of how to care for the patient, suggesting key gaps related to knowledge of warning signs and problems. Two of the four caregiver participants attributed a hospital readmission to postdischarge knowledge gaps. CONCLUSION: The experiences of these caregivers demonstrate how their limited, passive involvement in discharge education may result in suboptimal patient outcomes after hospitalization. Our findings suggest that structured programs aimed at increasing caregiver involvement in discharge, particularly related to assessment of caregiver problem solving, planning, and postdischarge support, are important in efforts seeking to improve care transitions and postdischarge outcomes. IMPLICATIONS FOR CASE MANAGEMENT: This study assesses caregivers' experience with discharge planning and problems they encounter post-discharge, providing case managers with important information regarding the effectiveness of discharge processes. This study of caregiver experiences suggests that the IDEAL discharge planning strategy remains a useful and important framework for case managers to follow when providing discharge services.

Advancing COVID-19 Vaccination Equity Among the Refugee Community: An Innovative Multi-Sector Collaborative Outreach Program.

INTRODUCTION: Multi-sector outreach collaborations have the potential to improve COVID-19 vaccine access among underserved populations, including refugees. METHODS: Using a four-pronged strategy, we offered the local refugee community COVID-19 vaccine appointments within the next week. RESULTS: Over a thousand (1,327) individuals from more than 20 countries were identified; mean age 36.5 (SD=16.4); 55% female. Initially, 613 (46%) reported being scheduled/vaccinated prior to outreach efforts; 312 (24%) appointments were scheduled that resulted from outreach efforts. By February 2022, 895 (67.4%) of the 1,327 patients had at least one dose; the majority of these were Pfizer (n=750, 84%). Of 895 with first dose, 843 completed two-dose series (94.2%). Overall completion rate of initial series was 63.5%. Reasons for declining (171, 13%) included wanting to speak with a physician or family member first; pregnancy hesitation; postponing until after Ramadan. DISCUSSION: Although lower than local and state rates, this refugee community's COVID-19 vaccine uptake is on par with the overall population in the United States (65.8%). Because of COVID-19's disproportionately negative impact on refugee and other underserved populations, we offer recommendations for future equity-informed efforts.

Building a 'Virtual Library': continuing a global collaboration to strengthen research capacity within Nepal and other low- and middle-income countries.

To fill the gap in health research capacity-building efforts, we created the 'Virtual Library' (VL) - a web-based repository of context-relevant resources for health researchers in low- and middle-income countries (LMICs). This paper describes the participatory process used to systematically develop the VL, and describes how our interprofessional team - representing both an LMIC (Nepal) and a high-income country (HIC) (USA, US) - engaged in shared meaning-making. A team of researchers and clinicians representing a range of subdisciplines from Nepal and the US created a replicable search strategy and standardized Resource Screening Guide (RSG) to systematically assess resources to be included within the VL. Descriptive methods were used to summarize findings from the RSG and lessons learned from the collaborative process. Collectively, 14 team members reviewed 564 potential resources (mean = 40, SD = 22.7). Mean RSG score was 7.02/10 (SD = 2). More than 76% of resources met each of the four quality criteria (relevant; reputable, accessible; understandable). Within the published VL, 298 resources were included, organized by 15 topics and 45 sub-topics. Of these, 223 resources were evaluated by the RSG; 75 were identified by team member expertise. The collaborative process involved regular meetings, iterative document revisions, and peer review. Resource quality was better than expected, perhaps because best practices/principles related to health research are universally relevant, regardless of context. While the RSG was essential to systematize our search and ensure reproducibility, team member expertise was valuable. Pairing team members during peer-review led to bi-directional knowledge sharing and was particularly successful. This work reflects a highly collaborative global partnership and offers a model for future health research capacity-building efforts. We invite engagement with the Virtual Library as one supportive pillar of infrastructure to develop individual and institutional research capacity.

Models of Health Care: Interprofessional Approaches to Serving Immigrant Populations.

Developing an integrated model of health care for refugees, asylees, immigrants, and special immigrant visa holders requires a multifaceted approach due to their unique and complex health care needs. This article provides an in-depth understanding of the components necessary to develop a model of care addressing the needs of immigrants and to share opportunities and challenges associated with these models. This includes highlighting population- and individual-level factors important to caring for immigrant populations, providing guidance on creating a model of care that addresses these factors, and describing established clinics that exemplify various models of care.

Health Inequity in Cervical Cancer Control Among Refugee Women in the United States by Country of Origin.

Purpose: To describe cervical cancer control practices from common countries of origin for women who resettle in the United States as refugees to highlight this persistent health inequity. Methods: Describe presence/type of national cervical cancer screening program, screening coverage percentage, and human papillomavirus (HPV) vaccination program presence and coverage. Results: Nine of 15 included countries screen opportunistically. Most do not use high-performing tests, and estimates of screening coverage were limited. Only one country offers HPV vaccination. Conclusion: Countries of origin for refugee women may lack effective national cervical cancer control programs. To meet the World Health Organization (WHO)'s call to eliminate cervical cancer by 2030, focus on culturally tailored education, and continued research are paramount.

Employing a mobile health decision aid to improve decision-making for patients with advanced prostate cancer and their decision partners/proxies: the CHAMPION randomized controlled trial study design.

BACKGROUND: Metastatic prostate cancer remains a lethal malignancy that warrants novel supportive interventions for patients and their decision partners and proxies. Decision aids have been applied primarily to patients with localized disease, with minimal inclusion of patients with advanced prostate cancer and their decision partners. The use of a community patient navigator (CPN) has been shown to have a positive supportive role in health care, particularly with individuals from minority populations. Research is needed to evaluate decision support interventions tailored to the needs of advanced prostate cancer patients and their decision partners in diverse populations. METHODS: Guided by Janis and Mann's Conflict Model of Decision Making, the Cancer Health Aid to Manage Preferences and Improve Outcomes through Navigation (CHAMPION) is a randomized controlled trial to assess the feasibility and acceptability of a mobile health (mHealth), CPN-administered decision support intervention designed to facilitate communication between patients, their decision partners, and the healthcare team. Adult prostate cancer patients and their decision partners at three mid-Atlantic hospitals in the USA were randomized to receive enhanced usual care or the decision intervention. The CHAMPION intervention includes a theory-based decision-making process tutorial, immediate and health-related quality of life graphical summaries over time (using mHealth), values clarification via a balance sheet procedure with the CPN support during difficult decisions, and facilitated discussions with providers to enhance informed, shared decision-making. DISCUSSION: The CHAMPION intervention is designed to leverage dynamic resources, such as CPN teams, mHealth technology, and theory-based information, to support decision-making for advanced prostate cancer patients and their decision partners. This intervention is intended to engage decision partners in addition to patients and represents a novel, sustainable, and scalable way to build on individual and community strengths. Patients from minority populations, in particular, may face unique challenges during clinical communication. CHAMPION emphasizes the inclusion of decision partners and CPNs as facilitators to help address these barriers to care. Thus, the CHAMPION intervention has the potential to positively impact patient and decision partner well-being by reducing decisional conflict and decision regret related to complex, treatment-based decisions, and to reduce cancer health disparities. Trial registration ClinicalTrials.gov NCT03327103 . Registered on 31 October 2017-retrospectively registered. World Health Organization Trial Registration Data Set included in Supplementary Materials.

Using an interprofessional team to provide refugee healthcare in an academic medical centre.

INTRODUCTION: The International Family Medicine Clinic (IFMC) was established in 2002 by the University of Virginia Department of Family Medicine to provide comprehensive, timely, culturally sensitive and high-quality healthcare to the growing refugee and special immigrant population in Central Virginia, USA. METHODS: The purpose of this paper is to describe the IFMC, with a specific focus on interprofessional roles, interprofessional collaboration, community partnerships and the services and resources available to IFMC patients. RESULTS: The clinic has served over 3100 refugees from 60 countries in its 16-year history. In 2019, the clinic staff now includes 4 attending physicians, 2 nurse practitioners and 14 residents who have dedicated clinic time to see refugees; a registered nurse care coordinator and a social worker dedicated to the IFMC refugee population; 2 clinical psychologists and doctoral students in clinical psychology; and a clinical pharmacist. The IFMC also provides onsite psychiatric care. A process flow map depicts the interconnectivity of interprofessional team members working together with other specialty care providers within the medical centre and with community partners on behalf of refugee patients through the resettlement process. CONCLUSION: Individuals who arrive in the USA as refugees are a particularly vulnerable patient group and often require an interprofessional team approach. The IFMC may serve as a model for other institutions interested in starting a similar interprofessional, refugee-centred medical home.