Results from the Delivery of a Community Health Worker Training to Advance Competencies in Cancer Genomics.

INTRODUCTION: Less than half of eligible Black women are assessed for genetic risk and only 28% engage in recommended HBOC risk-reducing interventions. CHWs are trusted members of the community 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 to support genetic risk assessment. To address the need and training gaps for CHWs we developed and assessed an online training program called KEEP IT (Keeping Each other Engaged Program via IT). METHODS: The curriculum and modules were developed through engaging a panel of experts in a three-round Delphi process. The process led to creation of 10 modules for the training. Recruitment focused on CHWs who worked in clinical settings or groups providing outreach or health services to Black women. Measures of the training were guided by the RE-AIM framework to evaluate the course and its effectiveness. RESULTS: 46 individuals expressed interest in the training after recruitment. 38 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 three-months follow up. The training was highly rated for its relevance to CHW work and overall delivery. Top rated sessions included Hereditary Breast and Ovarian Cancer and Family History and Family History Collection. On average, participants reported discussing HBOC with 17 individuals at three-months follow-up. DISCUSSION: 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.

Development of a Hereditary Breast and Ovarian Cancer and Genetics Curriculum for Community Health Workers: KEEP IT (Keeping Each other Engaged Program via IT) Community Health Worker Training.

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.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial.

BACKGROUND: Research 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. METHODS: Utilizing 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. DISCUSSION: Pal-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.

Feasibility of a Community-Based, Online, Peer-Supported Spinal Cord Injury Self-management Intervention: Protocol for a Pilot Wait-Listed Randomized Trial.

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.

Feasibility of a Palliative Care Intervention Utilizing Community Health Workers to Facilitate Delivery of Home-based Palliative Care in India.

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.

Barriers and Facilitators to Supportive Care Implementation in Advanced Disease Prostate Cancer Survivors: A Theory-Informed Scoping Review.

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.

Supportive care interventions and quality of life in advanced disease prostate cancer survivors: An integrative review of the literature.

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.

An exploratory study investigating the barriers, facilitators, and demands affecting caregivers in a telemedicine integrated ambulance-based setting for stroke care.

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.

Barriers, Facilitators and Recommended Strategies for Implementing a Home-Based Palliative Care Intervention in Kolkata, India.

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.

A cluster randomized controlled trial to assess the efficacy of a telehealth-based train-the-trainer mealtime intervention delivered by respite care center volunteers to caregivers of persons with dementia to improve nutritional outcomes and quality of life.

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..

Community-Based Interventions for Stroke Provided by Nurses and Community Health Workers: A Review of the Literature.

BACKGROUND: Community-based interventions are vital for facilitating poststroke recovery, increasing community participation, and raising awareness about stroke survivors. To optimize recovery and community reintegration, there is a need to understand research findings on community-based interventions that focus on stroke survivors and their caregivers. Although nurses and community health workers (CHWs) are commonly involved in community-based interventions, less is known about their roles relative to other poststroke rehabilitation professionals (physical therapists, occupational therapists, and speech-language pathologists). Thus, the purpose of this review is to explore research focused on improving community-based stroke recovery for adult stroke survivors, caregivers, or both when delivered by nurses or CHWs. METHODS: A systematic review using Scopus, PubMed, EBSCOhost, MEDLINE, CINAHL Complete, and PsycInfo was completed to identify community-based poststroke intervention studies using nurses or CHWs through August 2018. RESULTS: Eighteen studies meeting inclusion criteria from 9 countries were identified. Details regarding nurses' and CHWs' roles were limited or not discussed. Interventions emphasized stroke survivor self-care and caregiver support and were offered face-to-face and in group sessions in the community and home. A wide range of instruments were used to measure outcomes. The results of the interventions provided were mixed. Improvements were observed in perceptions of health, quality of life, knowledge, self-efficacy, self-management, and caregiver support. CONCLUSION: Nurses and CHWs play a pivotal role in community-based care. Evidence suggests community-based interventions facilitate the necessary support for stroke survivors, caregivers, families, and communities to optimize stroke recovery. Data from this review illustrate a continued need for comprehensive programs designed to address the complex needs of stroke survivors and families when they return to their homes and communities.

An Exploration of Useful Telemedicine-Based Resources for Clinical Research.

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.

A Qualitative Evaluation of a Home-based Palliative Care Program Utilizing Community Health Workers in India.

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.

Facilitating the Informed Consent Process Using Teleconsent: Protocol for a Feasibility and Efficacy Study.

BACKGROUND: 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. OBJECTIVE: The objective of this study is to utilize telemedicine to improve the informed consent process for clinical trials and studies. We aim to assess the feasibility and efficacy of the teleconsent intervention among residents in urban and rural settings. METHODS: This study will be conducted separately yet concurrently at two institutions, the Medical University of South Carolina and the University of North Carolina at Chapel Hill, to compare results within and across institutions. RESULTS: 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. CONCLUSIONS: In this paper, we present a novel approach for conducting 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. Teleconsent provides potential to improve obtaining informed consent from potential clinical trial participants. REGISTERED REPORT IDENTIFIER: RR1-10.2196/11239.

Technology as a Means to Address Disparities in Mental Health Research: A Guide to "Tele-Tailoring" your Research Methods.

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 healthcare research. By leveraging the growing capabilities of telehealth, teletailoring studies can improve the efficiency of research recruitment and facilitate the consent process for under-represented populations in research. Strategies for implementation are clearly relevant to increasing the success of clinical trial recruitment.

A Systematic Review of Palliative Care Intervention Outcomes and Outcome Measures in Low-Resource Countries.

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.

Assessing Mobile Health Capacity and Task Shifting Strategies to Improve Hypertension Among Ghanaian Stroke Survivors.

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. RESULTS: 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.

Stroke-related stigma among West Africans: Patterns and predictors.

BACKGROUND: Disability-adjusted life-years lost after stroke in Low & Middle-Income Countries (LMICs) is almost seven times those lost in High-income countries. Although individuals living with chronic neurological and mental disorders are prone to stigma, there is a striking paucity of literature on stroke-related stigma particularly from LMICs. OBJECTIVE: To assess the prevalence, severity, determinants and psycho-social consequences of stigma among LMIC stroke survivors. METHODS: Between November 2015 and February 2016, we conducted a cross-sectional survey of 200 consecutive stroke survivors attending a neurology clinic in a tertiary medical center in Ghana. The validated 8-Item Stigma Scale for Chronic Illness (SSCI-8) questionnaire was administered to study participants to assess internalized and enacted domains of stigma at the personal dimension with further adaptation to capture family and community stigma experienced by stroke participants. Responses on the SSCI-8 were scored from 1 to 5 for each item, where 1=never, 2=rarely, 3=sometimes, 4=often and 5=always with a score range of 8-40. Demographic and clinical data on stroke type and severity as well as depression and Health-Related Quality of Life indicators were also collected. Predictors of stroke-related stigma were assessed using Linear Models (GLM) via Proc GENMOD in SAS 9.4. RESULTS: 105 (52.5%) subjects recruited were males and the mean±SD age of stroke survivors in this survey was 62.0±14.4years. Mean SSCI-8 score was highest for personal stigma (13.7±5.7), which was significantly higher than family stigma (11.9±4.6; p=0.0005) and social/community stigma (11.4±4.4; p<0.0001). Approximately 80% of the cohort reported experiencing mild-to-moderate degrees of stigma. A graded increase in scores on the Geriatric Depression Scale and Centre for Epidemiological Studies-Depression scale was observed across the three categories. Living in an urban setting was associated with higher SSCI-8 scores. Moreover, stroke subjects with more severe post-stroke residual symptom deficits reported a significantly higher frequency of stigma. CONCLUSION: Four out of five stroke survivors in this Ghanaian cohort reported experiencing some form of stigma. Stigmatized individuals were also more likely to be depressed and have lower levels of quality of life. Further studies are required to assess the consequences of stigma from stroke in LMIC.

Prevalence and Predictors of Sleep Apnea Risk among Ghanaian Stroke Survivors.

BACKGROUND AND PURPOSE: Sleep apnea (SA) has emerged as a potent risk factor for stroke recurrence and mortality. The burden of SA among stroke survivors in sub-Saharan Africa where stroke incidence and mortality are escalating is unknown. We sought to assess the prevalence of SA risk and its clinical correlates and predictors among Ghanaian stroke survivors. METHODS: This cross-sectional study involved 200 consecutive stroke survivors attending a neurology clinic in a tertiary medical center in Kumasi, Ghana. The validated Berlin, STOP-BANG, and Epworth Sleepiness Scale questionnaires were administered to all eligible subjects to assess SA risk and daytime somnolence, and their demographic and clinical information, health-related quality of life, and symptoms of depression were collected using the questionnaires. RESULTS: The median (interquartile range) age of stroke survivors was 62 (52-72) years and 52.5% were male. Ninety-nine (49.5%) subjects were identified as high risk for SA using the Berlin questionnaire, whereas 26 (13%), 137 (68.5%), and 37 (18.5%) subjects were classified as low, intermediate, and high risk for SA, respectively, using the STOP-BANG questionnaire. Patients at high risk of SA were significantly older, used excess alcohol, and were less able to perform activities of daily living, although their mean National Institutes of Health Stroke Scale scores were significantly lower than those with low risk for SA. None of the stroke survivors had ever been screened for SA. CONCLUSIONS: One out of every 2 stroke survivors attending a neurology clinic in Ghana is at high risk for undiagnosed SA. Greater regional awareness about SA presence and outcomes among patients and providers is warranted.