Dataset Information

End-of-Life Cancer Care Redesign: Patient and Caregiver Experiences in a Lay Health Worker-Led Intervention.

ABSTRACT: IMPORTANCE:The Engagement of Patients with Advanced Cancer (EPAC), comprised of a lay health worker (LHW) who assists patients with advance care planning, is an effective intervention for improving patient experiences and reducing acute care use and total health-care costs. The objective of this study was to assess patients' and caregivers' experiences with the intervention. METHODS:We invited all patients enrolled in EPAC and their caregivers to complete an 8-item survey at the end of the intervention and a random 35% sample to participate in a qualitative interview to assess their experiences. At 15-month follow-up, we invited all caregivers of patients who died during the study to participate in a qualitative interview. We analyzed survey responses using bivariate methods and recorded, transcribed, and analyzed interviews using qualitative content analysis. RESULTS:Sixty-nine patients were alive at completion of the intervention and all 30 identified caregivers completed the survey. All viewed the intervention as a critical part of cancer care and recommended the intervention for other patients. In qualitative interviews, among 30 patients, all reported improved comfort in discussing their end-of-life care preferences. In qualitative interviews with 24 bereaved caregivers, all viewed the intervention as critical in ensuring that their loved ones' wishes were adhered to at the end of life. CONCLUSIONS AND RELEVANCE:Incorporating an LHW into end-of-life cancer care is an approach supported and viewed as highly effective in improving care by patients and caregivers. The LHW-led EPAC intervention is one solution that can significantly impact patient and caregiver experiences.

SUBMITTER: Patel MI

PROVIDER: S-EPMC6776082 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

End-of-Life Cancer Care Redesign: Patient and Caregiver Experiences in a Lay Health Worker-Led Intervention.

Patel Manali I MI Moore David D Coker Tumaini R TR

The American journal of hospice & palliative care 20190502 12

<h4>Importance</h4>The Engagement of Patients with Advanced Cancer (EPAC), comprised of a lay health worker (LHW) who assists patients with advance care planning, is an effective intervention for improving patient experiences and reducing acute care use and total health-care costs. The objective of this study was to assess patients' and caregivers' experiences with the intervention.<h4>Methods</h4>We invited all patients enrolled in EPAC and their caregivers to complete an 8-item survey at the e ...[more]

PMID: 31046401

Similar Datasets

Project description:BackgroundThe recent scale-up of prevention of mother-to-child transmission of HIV (PMTCT) services has rapidly accelerated antiretroviral therapy (ART) uptake among pregnant and postpartum women in sub-Saharan Africa. The Mother and Infant Retention for Health (MIR4Health) study evaluates the impact of a combination intervention administered by trained lay health workers to decrease attrition among HIV-positive women initiating PMTCT services and their infants through 6 months postpartum.MethodsThis was a qualitative study nested within the MIR4Health trial. MIR4Health was conducted at 10 health facilities in Nyanza, Kenya from September 2013 to September 2015. The trial intervention addressed behavioral, social, and structural barriers to PMTCT retention and included: appointment reminders via text and phone calls, follow-up and tracking for missed clinic visits, PMTCT health education at home visits and during clinic visits, and retention and adherence support and counseling. All interventions were administered by lay health workers. We describe results of a nested small qualitative inquiry which conducted two focus groups to assess the experiences and perceptions of lay health workers administering the interventions. Discussions were recorded and simultaneously transcribed and translated into English. Data were analyzed using framework analysis approach.ResultsStudy findings show lay health workers played a critical role supporting mothers in PMTCT services across a range of behavioral, social, and structural domains, including improved communication and contact, health education, peer support, and patient advocacy and assistance. Findings also identified barriers to the uptake and implementation of the interventions, such as concerns about privacy and stigma, and the limitations of the healthcare system including healthcare worker attitudes. Overall, study findings indicate that lay health workers found the interventions to be feasible, acceptable, and well received by clients.ConclusionsLay health workers played a fundamental role in supporting mothers engaged in PMTCT services and provided valuable feedback on the implementation of PMTCT interventions. Future interventions must include strategies to ensure client privacy, decrease stigma within communities, and address the practical limitations of health systems. This study adds important insight to the growing body of research on lay health worker experiences in HIV and PMTCT care.Trial registrationClinicaltrials.gov NCT01962220 .

Project description:BackgroundDepressive and anxiety disorders (common mental disorders) are the most common psychiatric condition encountered in primary healthcare.AimsTo test the effectiveness of an intervention led by lay health counsellors in primary care settings (the MANAS intervention) to improve the outcomes of people with common mental disorders.MethodTwenty-four primary care facilities (12 public, 12 private) in Goa (India) were randomised to provide either collaborative stepped care or enhanced usual care to adults who screened positive for common mental disorders. Participants were assessed at 2, 6 and 12 months for presence of ICD-10 common mental disorders, the severity of symptoms of depression and anxiety, suicidal behaviour and disability levels. All analyses were intention to treat and carried out separately for private and public facilities and adjusted for the design. The trial has been registered with clinical trials.gov (NCT00446407).ResultsA total of 2796 participants were recruited. In public facilities, the intervention was consistently associated with strong beneficial effects over the 12 months on all outcomes. There was a 30% decrease in the prevalence of common mental disorders among those with baseline ICD-10 diagnoses (risk ratio (RR) = 0.70, 95% CI 0.53-0.92); and a similar effect among the subgroup of participants with depression (RR = 0.76, 95% CI 0.59-0.98). Suicide attempts/plans showed a 36% reduction over 12 months (RR=0.64, 95% CI0.42–0.98) among baseline ICD-10 cases. Strong effects were observed on days out of work and psychological morbidity, and modest effects on overall disability [corrected]. In contrast, there was little evidence of impact of the intervention on any outcome among participants attending private facilities.ConclusionsTrained lay counsellors working within a collaborative-care model can reduce prevalence of common mental disorders, suicidal behaviour, psychological morbidity and disability days among those attending public primary care facilities.

Project description:BackgroundMobile Health or mHealth interventions, including Short Message Service (SMS), can help increase access to care, enhance the efficiency of health service delivery and improve diagnosis and treatment for HIV. Text messaging, or SMS, allows for the low cost transmission of information, and has been used to send appointment reminders, information about HIV counselling and treatment, messages to encourage adherence and information on nutrition and side-effects. HIV Viral Load (VL) monitoring is recommended by the WHO and has been progressively adopted in many settings. In Zimbabwe, implementation of VL is routine and has been rolled out with support of Médecins Sans Frontières (MSF) since 2012. An SMS intervention to assist with the management of VL results was introduced in two rural districts of Zimbabwe. After completion of the HIV VL testing at the National Microbiology Reference Laboratory in Harare, results were sent to health facilities via SMS. Consenting patients were also sent an SMS informing them that their viral load results were ready for collection at their nearest health facilities. No actual VL results were sent to patients.MethodsA qualitative study was conducted in seven health-care facilities using in-depth interviews (n = 32) and focus group discussions (n = 5) to explore patient and health-care worker experiences of the SMS intervention. Purposive sampling was used to select participants to ensure that male and female patients, as well as those with differing VL results and who lived differing distances from the clinics were included. Data were transcribed, translated from Shona into English, coded and thematically analysed using NVivo software.ResultsThe VL SMS intervention was considered acceptable to patients and health-care workers despite some challenges in implementation. The intervention was perceived by health-care workers as improving adherence and well-being of patients as well as improving the management of VL results at health facilities. However, there were some concerns from participants about the intervention, including challenges in understanding the purpose and language of the messages and patients coming to their health facility unnecessarily. Health-care workers were more concerned than patients about unintentional HIV disclosure relating to the content of the messages or phone-sharing.ConclusionThis was an innovative intervention in Zimbabwe, in which SMS was used to send VL results to health-care facilities, and notifications of the availability of VL results to patients. Interventions such as this have the potential to reduce unnecessary clinic visits and ensure patients with high VL results receive timely support, but they need to be properly explained, alongside routine counselling, for patients to fully benefit. The findings of this study also have potential policy implications, as if implemented well, such an SMS intervention has the potential to help patients adopt a more active role in the self-management of their HIV disease, become more aware of the importance of adherence and VL monitoring and seek follow-up at clinics when results are high.

Project description:BackgroundThis study aimed to evaluate the effect of a lay health worker (LHW) telephone intervention on completing a series of hepatitis B virus (HBV) vaccinations among foreign-born Asian Americans in the Baltimore-Washington Metropolitan area.MethodsDuring the period of April 2013 and March 2014, we recruited Asian Americans who were 18 years of age and older in the community-based organizations. Of the 645 eligible participants, 600 (201 Chinese, 198 Korean, 201 Vietnamese) completed a pretest survey and received hepatitis B screening. Based on the screening results, we conducted a randomized controlled trial among those unprotected (HBsAg-/HBsAB-) by assigning them either to an intervention group (n = 124) or control group (n = 108). The intervention group received a list of resources by mails for where to get free vaccinations as well as reminder calls for vaccinations from trained LHWs, while the control group received only list of resources by mail. Seven months after mailing the HBV screening results, trained LHWs followed up with all participants by phone to ask how many of the recommended series of 3 vaccinations they had received: none, 1 or 2, or all 3 (complete). Their self-reported vaccinations were verified with the medical records. Multinomial logistic regressions were used to examine the effect of the LHW intervention. Process evaluation was conducted by asking study participants in the intervention group to evaluate the performance of the LHWs.ResultsAfter seven months, those in the intervention group were more likely to have 1 or more vaccines than the control group, compared to the no vaccination group (OR = 3.04, 95% CI, 1.16, 8.00). Also, those in the intervention group were more likely to complete a series of vaccinations than the control group, compared to the no vaccination group (OR = 7.29, 95% CI 3.39, 15.67). The most important barrier preventing them from seeking hepatitis B vaccinations was lack of time to get the vaccination. The most important promoters to getting vaccinations, among those who had vaccinations (n = 89), were our intervention program (70.8%) and self-motivation (49.4%). The majority of participants in the intervention group received the phone calls from LHWs (93%) and almost all of them got the reminder to receive vaccines (98%).ConclusionThe LHW intervention was successful at increasing HBV vaccinations rates among foreign-born Asian Americans. This study suggests that this culturally integrated intervention program may be useful for reducing liver cancer disparities from chronic HBV infection in high risk Asian Americans.Trial registrationClinicalTrials.gov NCT02760537.

Project description:Heart failure impacts patients' quality of life and life expectancy and significantly affects the daily behaviours and feelings of family caregivers. At the end-of-life, the burden for family caregivers depends on their emotional and sentimental involvement, as well as social costs.ObjectivesThe aim of this work is to determine whether and how family caregivers' experiences and expectations vary in relation to the places of care and teams involved in heart failure management.MethodsA systematic literature review was conducted, by screening manuscripts dealing with the experience of Family Care Givers' (FCGs) of patients with Advanced Heart failure. Methods and results were reported following the PRISMA rules. Papers were searched through three databases (PubMed, Scopus and Web of Science). Seven topics were used to synthetize results by reporting qualitative information and quantitative evidence about the experience of FCGs in places of care and with care teams.ResultsThirty-one papers, dealing with the experience of 814 FCGs, were selected for this systematic review. Most manuscripts came from the USA (N = 14) and European countries (N = 13) and were based on qualitative methods. The most common care setting and provider profile combination at the end of life was home care (N = 22) and multiprofessional teams (N = 27). Family caregivers experienced "psychological issues" (48.4%), impact of patients' condition on their life (38,7%) and "worries for the future" (22.6%). Usually, when family caregivers were unprepared for the future, the care setting was the home, and there was a lack of palliative physicians on the team.DiscussionAt the end-of-life, the major needs of chronic patients and their relatives are not health related. And, as we observed, non-health needs can be satisfied by improving some key components of the care management process that could be related to care team and setting of care. Our findings can support the design of new policies and strategies.

Dataset Information

End-of-Life Cancer Care Redesign: Patient and Caregiver Experiences in a Lay Health Worker-Led Intervention.

Publications

End-of-Life Cancer Care Redesign: Patient and Caregiver Experiences in a Lay Health Worker-Led Intervention.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets