Objective: To evaluate a behavioral intervention, Partners at Meals (PAM), designed to empower caregivers (CGs) to improve caloric intake, weight, and quality of life (QOL) of persons with dementia (PWD), and to address dysfunctional behaviors during mealtime. The study also aimed to assess differences in caregiver psychosocial outcomes, including depression, burden, and QOL. Design: A cluster randomized controlled experimental design was used, in which participating Respite Care Centers (RCCs) were randomized to either the PAM intervention group (n = 3) or the control enhanced usual care (EUC) group (n = 3). Enrolled PWD/CG dyads were assigned to PAM or EUC based on the RCCs they attended. Setting and participants: This longitudinal 6-month clinical trial was conducted across six RCCs in the Southeast coastal region of the United States. A total of 53 PWD/CG dyads provided post-enrollment data: PAM (n = 27) and EUC (n = 26). Methods: The PAM intervention was delivered using a train-the-trainer approach, based on the C3P (Change the Person, Change the People, Change the Place) model, and was implemented through RCC volunteers who provided adaptive mealtime strategies via telehealth to CGs in the home. Primary outcome measures for PWD were changes in body weight and feeding/dysfunctional behaviors from baseline to 6-month follow-up or end of study. Secondary outcomes included mid-upper arm circumference (MUAC), caloric intake, and QOL. Caregiver outcomes included changes in burden, depression, and QOL. Between- and within-group comparisons were performed using pooled and paired t-tests or chi-square tests as appropriate. Generalized linear mixed models (GLMM) were used to assess outcomes over time. Results: At enrollment, PWD participants had a diagnosis of mild to moderate Alzheimer’s disease or related dementia, with a mean age of 77.6 ± 9.8 years. The mean age of caregivers was 66.3 ± 11.8 years. The PWDs in the PAM group started with greater weight loss prior to study enrollment but showed a slightly lower > 5% weight loss from baseline to end of study (20.8%), compared to the EUC group (22.7%), although not statistically significant (p = 0.275). While the EUC group experienced a slight decrease in MUAC from baseline to follow-up of 0.2 ± 7 cm, those in the PAM group showed an increase of 1.0 ± 2.0 cm, suggesting better maintenance of nutritional status. The estimated mean daily caloric intake between the PWD groups upon enrollment (368 ± 131, p = 0.006) showed the EUC group consumed more calories than the PAM group throughout the study. Although no significant differences were found in the unadjusted changes in mealtime scores for feeding difficulty (−0.8 ± 3.1, p = 0.411), dysfunctional behavior (−1.4, 6.0, p = 0.605) or QOL (0.3 ± 6.6, p = 0.482), the PAM group exhibited a decrease in dysfunctional mealtime behaviors over the study period. No significant differences in the unadjusted means scores at baseline or changes from baseline to follow-up were observed on measures of CG depression (−1.3 ± 4.6, p = 0.371) or burden (−1.4 ± 5.4, p = 0.354). Results show that there was a significant difference in the unadjusted QOL score between groups at end of study follow-up (10.8 ± 15.8, p = 0.031); mean health state scores among caregivers in the PAM group (81.2 ± 3.4) were higher at the end of study compared to the EUC group (68.9 ± 3.7), indicating better general health state and QOL. Conclusion: Findings suggest that the PAM intervention, using a train-the-trainer approach shows promise in improving nutritional outcomes and reducing dysfunctional mealtime behaviors in PWD, as well as enhancing the QOL of CG. This approach extends the reach of the intervention and fosters the idea that mealtime interventions to enhance in-home caregiving may offer a viable approach to maintaining and improving the nutritional status of the PWD and overall well-being of both PWD and their CG, which is essential for addressing the multifaceted challenges of dementia care.

Introduction: Less than half of eligible Black women are assessed for genetic risk and only 28% engage in recommended hereditary breast and ovarian cancer (HBOC) riskreducing interventions. CHWs are trusted individuals that work as a liaison between health systems and the community to improve access to services and support cancer prevention efforts, though they are an overlooked resource to support genetic risk assessment. To address the need and training gaps for CHWs, we developed and assessed an online training program to build CHW's competencies in cancer genomics and use of health information technologies to navigate high-risk individuals to appropriate genetic services. Methods: The curriculum and 10 training modules were developed through engaging a panel of experts in a three-round Delphi process. Recruitment focused on CHWs who worked in clinical settings or groups providing outreach or health services to Black women. We assessed: changes in knowledge and attitudes about HBOC and genomics, as well as the perceptions about the quality and implementation of the training. Results: Forty-six individuals expressed interest in the training after recruitment. Thirty eight individuals were eligible for the training and 26 completed the course. We found improvements in knowledge and genomics competencies immediately post-course, but the majority of these improvements were not sustained at 3-month followup. The training was highly rated for its relevance to CHW work and overall delivery. Top rated sessions included HBOC overview and family history collection. On average, participants reported discussing HBOC with 17 individuals at 3- month follow-up. Conclusion: Championing a diverse cancer and genomics workforce can help address the goals of the National Cancer Plan to improve early detection and health equity. Through this training, CHWs gained critical cancer and genomics knowledge that was then applied to their primary roles.

Alzheimer’s disease and Related Dementia (ADRD) is a growing concern for low- and middle-income countries. Yet, studies on the prevalence and risk factors for dementia in sub-Saharan Africa are limited. This study estimated the prevalence and identified the risk factors for ADRD in Ghana. A cross-sectional design involving 384 participants aged 60 years or more completed the Brief Community Screening Instrument for Dementia (CSID) with an additional set of questions on risk factors. The prevalence of dementia was 16% (62/384). Age (AOR = 1.031 (95% CI 1.002-1.061, p = 0.035), education (AOR = 0.689 (95% CI 0.517-0.919, p = 0.011), and employment (AOR = 0.320 (95% CI 0.149-0.685, p = 0.004) were associated with dementia. Also, ‘experience of stressful life event from age 16-64’ (AOR = 1.325 (95% CI 1.034-1.698, p = 0.024), ‘experience of stressful life event from age 65+’ (AOR = 1.258 (95% CI 1.024-1.546, p = 0.042), and ‘activities of daily living’ (AOR = 0.925 (95% CI 0.868-0.986, p = 0.037) identified as risk factors of dementia. The burden of ADRD was high. Urgent actions are needed to address this problem. There is a possibility that the burden of dementia may have been overestimated because of the study instrument. Findings should be interpreted in light of this limitation.

We developed a curriculum for community health workers (CHWs) using an innovative, community-engaged focus group and Delphi process approach. Equipping CHWs with knowledge of hereditary breast and ovarian cancer syndrome (HBOC) and genetics could help enhance identification of women at risk for HBOC, referral, and navigation through genetic services. We conducted focus groups with five CHWs and a three-round Delphi process with eight experts. In the first round of the Delphi process, participants rated and commented on draft curriculum modules. The second round involved live video discussion to highlight points of confusion and concern in the modules. The curriculum was revised and refined based on quantitative and qualitative data and reassessed by the experts in Round 3. Ultimately, agreement was achieved on eight of 10 modules when assessing for clarity of learning objectives, seven out of 10 when assessing for adult learning theory, and nine out of 10 when assessing for participants’ ability to learn desired knowledge. We plan to virtually deliver this curriculum to CHWs to enhance their HBOC and genomic competencies. By equipping CHWs to understand and participate in genomics education, we can enable more equitable participation in genomics-informed clinical care and research. Beyond this curriculum, the Delphi methodology can further be used to design content for new CHW curriculums.

BACKGROUND:People with spinal cord injury (SCI) report feeling unprepared to manage their disability upon discharge to the community. This situation is exacerbated when they return to settings where self-management support and resources are sparse, thus increasing the risk of costly secondary conditions and rehospitalizations. These factors make a compelling case for implementing innovative community-based SCI self-management programs that empower and engage individuals with SCI. Using a community-engaged research (CEnR) approach, we developed a peer-supported SCI self-management intervention, known as PHOENIX (Peer-supported Health Outreach, Education, and Information Exchange), which integrates online educational content and support from peer navigators (PNs) through telehealth, to promote health and community participation after SCI.OBJECTIVE:The objective of this pilot study is to evaluate the feasibility and acceptability of PHOENIX and the study design, and to obtain estimates of the variability of relevant outcome measures.METHODS:We conducted a pilot randomized waitlist-controlled trial (n=30) in collaboration with the South Carolina Spinal Cord Injury Association (SCSCIA), our long-standing community-based nonprofit organization research partner. We recruited 4 PNs through our SCSCIA collaboration using its existing network of trained peer mentors. Our study design supported comparison of the following 2 randomly assigned groups: PHOENIX intervention group and waitlist enhanced usual care (EUC) group. The PHOENIX intervention was administered online by PNs over 16 weeks through scheduled "video visits." The EUC group participated in the study for 16 weeks with usual community services and no navigation, and received 4 monthly newsletters from the SCSCIA on a variety of SCI-relevant topics. At the end of the waitlist period, the waitlist EUC group received the full PHOENIX intervention. Measures of feasibility included PN and participant recruitment and retention, PN workload, protocol adherence, and incidence of technical issues. We conducted qualitative interviews with participants and PNs to evaluate the acceptability of PHOENIX and the study design. Outcome measures, including community participation, quality of life, and the occurrence and subjective impact of medically serious secondary conditions and rehospitalizations, were assessed at baseline after randomization and at subsequent time points to allow between-group comparisons.RESULTS:PN hiring and training were completed in August 2018. Recruitment began in November 2018. A total of 30 participants were recruited across South Carolina, and 28 participants completed follow-up by August 2020. An analysis of the results is being finalized, and the results are expected to be published in 2023.CONCLUSIONS:This study will provide valuable information to guide future research seeking to address unmet self-management needs and improve outcomes in individuals with SCI. Feasibility findings of this study will provide evidence from CEnR guided by people with SCI and SCI service providers to inform further development, testing, and dissemination of effective and scalable self-management strategies for people with SCI.INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR1-10.2196/42688.

BackgroundResearch studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients.MethodsUtilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload.DiscussionPal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas.Trial registration (TRN)ClinicalTrials.gov ID# NCT04972630.

Background Individualized supportive care is recommended to manage the debilitating effects of advanced prostate cancer and its treatments. Yet, the implementation of supportive care in practice remains inconsistent. Objective The aim of this study was to synthesize the barriers and facilitators to implementing supportive care interventions after identifying supportive care interventions for advanced prostate cancer survivors. Methods PubMed, SCOPUS, CINAHL Complete, ProQuest, and PsycINFO were searched for relevant studies published between 2011 and 2020. Studies were included if they reported on a supportive care intervention and included a description of implementation barriers and/or facilitators. The Theoretical Domains Framework was used to characterize implementation barriers and facilitators. Results Of the 620 articles identified, 13 met all prespecified inclusion criteria. Primary barriers were related to the domains of environmental context and resources (eg, limited resources), knowledge (eg, insufficient knowledge on efficacy of supportive care), and beliefs about capabilities (eg, lack of confidence in materials). Facilitators fell under environmental context and resources (partnerships with local services), reinforcement (eg, partners inclusion), and skills (eg, delivery by professionals). Conclusions This scoping review highlights barriers and facilitators that affect supportive care implementation. Future research that focuses on overcoming barriers and maximizing facilitators is needed to improve, modify, or supplement existing supportive care implementation practices. Implications for Practice As the number of advanced prostate cancer survivors continues to increase, supportive care must become the standard of care. Future interventions must incorporate increased knowledge and funding, alternative delivery models, and consistent use of specialty nurses.

Objectives: The purpose of this study was to evaluate the feasibility of a home-based palliative care program delivered by community health workers (CHW) in rural areas outside of Kolkata, India. The specific aims were to assess CHWs’ ability to implement the intervention protocol and maintain records of care, to characterize patient problems and CHW activities to assist patients, and to assess change in patient pain scores over the course of the intervention. Materials and Methods: Four CHWs were hired to facilitate delivery of home-based palliative care services. CHWs were trained using the Worldwide Hospice and Palliative Care Alliance’s Palliative Care Toolkit. CHWs provided care for patients for 3-months, making regular home visits to monitor health, making and implementing care plans, and referring patients back to the cancer center team for serious problems. Results: Eleven patients enrolled in the intervention, with ten of these patients participating in the intervention and one patient passing away before starting the intervention. All ten participants reported physical pain, for which CHWs commonly recommended additional or higher dose medication and/or instructed patients how to take medication properly. For two patients, pain levels decreased between baseline and end of study, while pain scores did not decrease for the remaining patients. Other symptoms for which CHWs provided care included gastro-intestinal, bleeding, and respiratory problems. Conclusion: The study findings suggest that utilization of CHWs to provide palliative care in low-resource settings may be a feasible approach for expanding access to palliative care. CHWs were able to carry out the study visit protocol and assess and document patient problems and their activities to assist. They were also able to alleviate many common problems patients experienced with simple suggestions or referrals. However, most patients did not see a decrease in pain levels and more emphasis was needed on the emotional aspects of palliative care, and so CHWs may require additional training on provision of pain management and emotional support services.

Contexte : Pour les survivants du cancer prostatique avancé, les interventions en soins de soutien peuvent améliorer la qualité de vie et les résultats cliniques. Même si ces patients ont très fréquemment des besoins non satisfaits, peu de soins de soutien leur sont prodigués. Méthodologie : Les bases de données PubMed, SCOPUS, CINAHL et ProQuest ont été interrogées à la recherche d’articles pertinents. Les données ont été extraites, organisées par élément thématique et classées selon les sept domaines du Cadre des soins de soutien pour les soins en oncologie. Résultats : La recherche a permis de relever 1 678 articles, dont 18 ont été inclus dans la revue et ont fait l’objet d’une évaluation critique. La plupart des études étaient transversales avec de petits échantillons non diversifiés. Les interventions en soins de soutien rapportées pour les survivants du cancer prostatique avancé sont limitées, mais tendent à être positives. La plupart des critères étaient axés sur les symptômes déclarés par les patients (ex. anxiété, douleur, auto-efficacité), et évalués au moyen de questionnaires ou d’entretiens. Les interventions réalisées en groupe ont donné de meilleurs résultats. Conclusions : Les hommes atteints d’un cancer prostatique avancé ont besoin d’interventions supplémentaires en soins de soutien. En raison de leur rôle essentiel dans les soins aux patients cancéreux, les chercheurs en sciences infirmières et les infirmières cliniciennes doivent faire équipe pour trouver et élaborer des interventions en soins de soutien axées sur le patient et adaptées à la culture qui améliorent la qualité de vie et les résultats cliniques. Il faut centrer les efforts sur l’échantillonnage, les domaines des besoins, le cadre théorique, les lignes directrices et les instruments de mesure.

Background: Supportive care interventions can improve quality of life and health outcomes of advanced prostate cancer survivors. Despite the high prevalence of unmet needs, supportive care for this population is sparse. Methods: The databases PubMed, SCOPUS, CINAHL, and ProQuest were searched for relevant articles. Data were extracted, organized by thematic matrix, and categorized according to the seven domains of the Supportive Care Framework for Cancer Care. Results: The search yielded 1678 articles, of which 18 were included in the review and critically appraised. Most studies were cross-sectional with small, non-diverse samples. Supportive care interventions reported for advanced prostate cancer survivors are limited with some positive trends. Most outcomes were symptom-focused and patient self-reported (e.g., anxiety, pain, self-efficacy) evaluated by questionnaires or interview. Interventions delivered in group format reported improvements in more outcomes. Conclusions: Additional supportive care intervention are needed for men with advanced prostate cancer. Because of their crucial position in caring for cancer patients, nurse scientists and clinicians must partner to research and develop patient-centered, culturally relevant supportive care interventions that improve this population’s quality of life and health outcomes. Efforts must concentrate on sampling, domains of needs, theoretical framework, guidelines, and measurement instruments.

Telemedicine implementation in ambulances can reduce time to treatment for stroke patients, which is important as "time is brain" for these patients. Limited research has explored the demands placed on acute stroke caregivers in a telemedicine-integrated ambulance system. This study investigates the impact of telemedicine on workload, teamwork, workflow, and communication of geographically distributed caregivers delivering stroke care in ambulance-based telemedicine and usability of the system. Simulated stroke sessions were conducted with 27 caregivers, who subsequently completed a survey measuring workload, usability, and teamwork. Follow-up interviews with each caregiver ascertained how telemedicine affected workflow and demands which were analyzed for barriers and facilitators to using telemedicine. Caregivers experienced moderate workload and rated team effectiveness and usability high. Barriers included frustration with equipment and with the training of caregivers increasing demands, the loss of personal connection of the neurologists with the patients, and physical constraints in the ambulance. Facilitators were more common with live visual communication increasing teamwork and efficiency, the ease of access to neurologist, increased flexibility, and high overall satisfaction and usability. Future research should focus on eliminating these barriers and supporting the distributed cognition of caregivers.

Deemed as non-essential businesses that were subject to disrupted services during the COVID-19 pandemic, the extent of the use of telehealth within the global respite care industry to provide for continuity of community care is unknown. This study aimed to assess global pre and post-onset COVID-19 telehealth use among respite care providers (RCPs) and to explore adult day care (ADC) provider attitudes and opinions toward the provision of educational services via telehealth to caregivers of persons with Alzheimer’s disease and related dementias (ADRD). An online global survey was purposefully developed and electronically disseminated among 2,817 RCPs. Response data were grouped by ADC-ADRD and ‘Other’ respite care facility type and analyzed using descriptive statistics and a thematic framework analysis for open-ended responses. Fisher’s Exact, Chi-square, or McNemar tests with logistic regression were used as appropriate for statistical analyses. Data were collected between September 1st to October 14th, 2020. Sixty-four RCPs responded to the survey, representing 5 countries across 3 continents. 32.8% (21/64) of respondents were ADC-ADRD providers and 67.2% (43/64) provided ‘Other’ types of respite care. Comparative pre/post-onset COVID-19 data evidence a significant increase in both the technological capacity and use of telehealth among all provider types (P <.001). Among ADC-ADRD providers, 71.4% expressed interested in exploring the use of telehealth to provide educational caregiver programming and 60% of those expressing no interest would change their decision if these services were reimbursable. Perceived barriers to telehealth adoption included: low clientele computer literacy (65.1%), lack of clientele internet access (63.5%), and lack of clientele interest and uptake (60.3%). Confidence in adoption was high among ADC-ADRD providers (76.2%). 85.7% of ADC-ADRD opined that telehealth would have a ‘significant’ or ‘profound’ impact in the delivery of educational support services to caregivers in the next 10 years. There has been an increased use of telehealth within the respite care industry since the onset of the COVID-19 pandemic. While perceived barriers to adoption exist, there is strong interest in exploring the long-term use of this type of technology to deliver educational support services to caregivers among all provider types, including ADC-ADRD providers. With an increasingly aging global population, culturally relevant and evidence-based curricula to support provider use and interest in telehealth should be a priority focus area for international funding agencies and researchers. In non-government funded respite care delivery systems, ADC-ADRD provider reimbursement may encourage provider investment in telehealth technology and expand remote access to specialized caregiver educational support services.

BACKGROUND:40 million people in the world are in need of palliative care, but only one-seventh of that population receive services. Underuse of palliative care in low resource countries exacerbates suffering in patients with life limiting illnesses such as cancer. OBJECTIVES:The current study was conducted to identify barriers, facilitators and recommended strategies for informing development of a home-based palliative care intervention for poor and medically underserved rural patients in Kolkata, India. METHODS:Semi-structured interviews were conducted with 20 clinical and patient stakeholders in Kolkata, India. Questions queried current practices for delivering palliative care, along with barriers, facilitators and optimal strategies for implementing homebased palliative care. RESULTS:We identified some key barriers to palliative care delivery in rural areas: lack of access to palliative care till late stages; patients unaware of their cancer stage; lack of affordability of medication and treatment costs; transportation challenges to access care; strict morphine distribution regulations making it challenging for patients to obtain morphine; cultural factors discouraging patients from seeking palliative care; resistance from medical community to use "rural medical practitioners (RMPs)" to deliver care. We also identified important facilitators, including availability of existing palliative care infrastructure at the cancer center, network of RMPs to serve as CHWs to facilitate palliative care delivery, low morphine cost and family support system for patients. CONCLUSION:Our findings provide evidence that a palliative care intervention which leverages an existing CHW infrastructure may be a feasible model for expanding the reach of palliative care to rural underserved patients.

Background Persons with dementia with mild to moderate cognitive impairment are at risk for developing impairments with activities of daily living such as the ability to feed oneself, that negatively influence health. Lack of caregiver skills related to mealtime planning for persons with dementia and the ability to cope with dysfunctional behaviors are well-documented factors that influence nutritional status outcomes, lead to weight loss, poor quality of life, and impact their ability to remain at home. Methods A cluster randomized controlled trial with a parallel mixed methods evaluation processes will be conducted to examine the efficacy of a train-the-trainer program using non-paid volunteers in respite care centers to deliver a telehealth mealtime intervention guided by the theory-based C3P Model — Change the Person, Change the People, Change the Place (C3P). In this six-month study, dyads of caregivers and persons with mild to moderate dementia receiving respite care services will be randomized to receive either the telehealth intervention or enhanced usual care. Within the intervention group, dyads will be partnered with a C3P trained volunteer who will work with caregivers via videoconference to devise and implement mealtime plans. Under usual care, dyads will receive standardized educational materials modified from The Savvy Caregiver Program for Alzheimer’s disease. The primary outcomes include weight maintenance or gain of the person with dementia and quality of life of the caregiver. A multi-level evaluation process utilizing respite center administrators and directors, volunteers, and caregivers will explore intervention fidelity, acceptability and sustainability. Using both the CONSORT and SPIRIT checklists as guidance, the comprehensive study design is more fully described in this manuscript. Discussion In this trial, we will lay the groundwork to examine the efficacy and sustainability of a train-the-trainer telehealth program that could be widely disseminated by national Alzheimer’s organizations and readily adopted by community agencies to provide additional resources to assist families in managing mealtimes at home, while promoting the quality of life of both the caregiver and the person with dementia. Trial registration This study was registered with clinicaltrials.gov: NCT03622814 on August 9, 2018..

Aim: In India, the need for rural palliative care is increasing with the rising number of people diagnosed with late-stage cancers. Rural areas also have a shortage of trained medical personnel to deliver palliative care. To address these needs, a home-based palliative care program using community health workers (CHWs) to facilitate care delivery was developed to extend the reach of a cancer center's palliative care services outside of Kolkata, India. The research question guiding this qualitative study was, how feasible, useful, and acceptable was this program from the perspectives of the clinical team and CHWs who delivered the intervention? Methods: This qualitative descriptive study used a grounded theory approach and the iterative constant comparative method to collect and analyze data from the key stakeholder interviews. Ten qualitative interviews took place at the Saroj Gupta Cancer Center and Research Institute and were conducted with the CHWs who delivered the home-based palliative care intervention (n = 3) and the clinical team who provided them with training, support, and supervision (n = 7). Results: Three major themes emerged (a) CHWs' desire and need for more training, (b) the need for tailoring of existing intervention protocols and modifying expectations of stakeholders, and (c) the need for considerations for ensuring program sustainability. Conclusions: The study provided evidence that the utilization of CHWs to facilitate delivery of palliative care is a feasible model worthy of consideration and further research testing in low-resource settings.

Background: Clinical trials are key to ensuring high-quality, effective, and safe health care interventions, but there are many barriers to their successful and timely implementation. Difficulties with participant recruitment and enrollment are largely affected by difficulties with obtaining informed consent. Teleconsent is a telemedicine- based approach to obtaining informed consent and offers a unique solution to limitations of traditional consent approaches. Methods: We conducted a survey among 134 clinical trial researchers in academic/university-, industry-, and clinically based settings. The survey addressed important aspects of teleconsent, potential teleconsent enhancements, and other telehealth capabilities to support clinical research. Results: The majority of respondents viewed teleconsent as an important approach for obtaining informed consent and indicated that they would likely use teleconsent if available. Consenting participants at remote sites, increasing access to clinical trials, and consenting participants in their homes were viewed as the greatest opportunities for teleconsent. Features for building, validating, and assessing understanding of teleconsent forms, mobile capabilities, three-way teleconsent calls, and direct links to forms via recruitment websites were viewed as important teleconsent enhancements. Other telehealth capabilities to support clinical research, including surveys, file transfer, three-way video, screenshare, and photo capture during telemedicine visits, and proposed telemedicine capabilities such as video call recording, ID information capture, and integration of medical devices, were also viewed as important. Conclusions: Teleconsent and telemedicine are promising solutions to some common challenges to clinical trials. Many barriers to study recruitment and enrollment might be overcome by investing time and resources and further evaluating this technology.

Informed consent is among the biggest challenges in recruiting participants for clinical research studies. Researchers face many challenges in conducting clinical trials, some of which include budgetary restrictions, lack of trained personnel, and difficulty recruiting study participants--particularly minorities and participants from rural communities. The objective of this study is to utilize telemedicine to improve the informed consent process for the clinical trials and studies. This study will be conducted separately yet concurrently at two institutions, the Medical University of South Carolina (MUSC) and the University of North Carolina at Chapel Hill (UNC), in order to compare results both within and across institutions. Enrollment for Phase 1 began in March of 2018 and concluded in May 2018. Data transcription and analysis will be conducted through June and September of 2018. In this paper, we present a novel approach to conducting the informed consent using a new telemedicine modality namely, teleconsent. Teleconsent presents the ability to conduct a live interaction among clinical research coordinators and potential participants while synchronously presenting the consent form on the screen and obtaining participant’s signature through doxy.me, the teleconsent system. The aim of this research is to assess the feasibility and efficacy of the teleconsent intervention among residents in urban and rural settings. Teleconsent provides potential to improve obtaining informed consent from potential clinical trial participants.

We must include rural participants in health-related research if we are to address health-related disparities and inequity, particularly in mental health. However, the first step of the research process in person—witnessed, signed, informed consent—is often a limiting factor and insurmountable barrier to precisely the type of research (e.g., telehealth) designed to overcome barriers of geographic distance and travel time. Telehealth, or the provision of medical care or services to patients by means of audio/video and procedure-specific technology, addresses some barriers to health created by rurality by making health care professionals more accessible to patients. A logical complement to telehealth is “teleconsent.” Teleconsent can be defined as using remote, facial integrated identity verification to allow (a) remote guidance of participants through consent documents, and (b) digital signing by all parties, obviating the need for in-person signed consent. The ability to review and sign consent documents via telehealth with synchronous viewing is a novel, innovative means by which to overcome the initial significant barrier to recruitment of rural participants into health care research. By leveraging the growing capabilities of telehealth, teletailoring studies can improve the efficiency of research recruitment and facilitate the consent process for underrepresented populations in research. Strategies for implementation are clearly relevant to increasing the success of clinical trial recruitment.

Context. To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts. Objectives. This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries. Methods. After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes. Results. Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions. Conclusion. Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings. (C) 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Background: There has been a tremendous surge in stroke prevalence in sub-Saharan Africa. Hypertension (HTN), the most potent, modifiable risk factor for stroke, is a particular challenge in sub-Saharan Africa. Culturally sensitive, efficacious HTN control programs that are timely and sustainable are needed, especially among stroke survivors. Mobile health (mHealth) technology and task-shifting offer promising approaches to address this need. Methods: Using a concurrent triangulation design, we collected data from stroke survivors, caregivers, community leaders, clinicians and hospital personnel to explore the barriers, facilitators and perceptions toward mHealth related to HTN management among poststroke survivors in Ghana. Exploration included perceptions of a nurse-led navigational model to facilitate care delivery and willingness of stroke survivors and caregivers to use mHealth technology. Resuls: Two hundred stroke survivors completed study surveys while focus groups (n = 4) were conducted with stroke survivors, caregivers and community leaders (n = 28). Key informant interviews were completed with clinicians and hospital personnel (n = 10). A total of 93% of survey respondents had HTN (60% uncontrolled). Findings support mHealth strategies for poststroke care delivery and HTN management and for task-shifting through a nurse-led model. Of survey and focus group participants, 76% and 78.6%, respectively, have access to mobile phones and 90% express comfort in using mobile phones and conveyed assurance that task-shifting through a nurse-led model could facilitate management of HTN. Findings also identified barriers to care delivery and medication adherence across all levels of the social ecological model. Conclusions: Participants strongly supported enhanced care delivery through mobile health and were receptive toward a nurse-led navigational model.