Community Home-based Care Research Articles

Water, sanitation and hygiene in community based care: implications for wellbeing for people living with HIV/AIDS/TB in Durban, South Africa

Majority of the HIV/AIDS patients in South Africa receive health care services at home. However, limited studies have been conducted to examine the water, sanitation and hygiene (WASH) situation in the homes of the care receivers and its impact on community-based care. The main objective of this study was to explore community health workers (CHW) perceptions on WASH in home-based care and the implications on people living with HIV/AIDS/TB, their family members and the CHW. Participants for this qualitative study were drawn from four community home-based care organizations in four marginalized communities in Durban providing care to HIV/AIDS/TB clients. Data was collected using participant observation of care-giving activities; semi-structured interviews with five home-based care project managers from the organizations and five focus group discussions with a total of 49 CHW. The study revealed that CHW had limited access to protective materials such as gloves and aprons and therefore tended to avoid carrying out activities that could help maintain proper hygiene in the homes for fear of infection. There was limited and unreliable access to water supply. CHW had to fetch water from immediate neighbours or surrounding areas and this created a time burden for caregivers taking away the time spent with patients. Inadequate access to water influences sanitation and hygiene, and this affects the work of CHW. Government needs to respond promptly to the water and sanitation needs of marginalized communities with limited resources. The findings of the study had implications for policy on WASH and community-based care in low in-come communities. Keywords: WASH, HIV/AIDS, Community-based care, Community health workers, Care-givers

Caring for HIV-positive orphans in the context of HIV and AIDS: perspectives of Botswana grandmothers.

Botswana has a human immunodeficiency virus (HIV) prevalence of 18.6% and an estimated 137805 orphans in a population of approximately two million people. Many of these orphans are cared for by their grandmothers, who struggle with caring for orphans suffering from a disease they know very little about. The purpose of this exploratory qualitative study was to explore experiences of grandmothers caring for HIV-positive orphan grandchildren. The ages of the grandmothers interviewed ranged from 60 to 80years, while the number of orphans under their care ranged from one to nine. The themes that emerged included the following: challenges of HIV treatment, HIV-related stigma, disclosure of HIV status, communication of sexuality issues and the adolescent pregnancies. Cultural beliefs prevented them from talking about sexuality and in some cases, accepting HIV as the cause of death. Grandmothers were challenged by HIV treatment of orphans and their supportive role as caregivers. The lack of knowledge of the disease must be addressed to improve adherence and communication about HIV. HIV programs need to address older persons' dynamic and diverse needs as individuals. Community home-based care nurses need to support grandmothers caring for HIV-positive grandchildren and refer them to relevant professionals who can assist with the care responsibilities. Nurses working with older people caring for HIV positive orphans need to develop culturally sensitive HIV education programs that address needs specific to.

Study on quality of life and care needs for elderly under the community-based home care model

The paper discussed the current status of the community-based home care of the elderly, mainly studying on present situation of the community elderly quality of life and six aspects of influencing factors such as age, health, economy and so on. From the three aspects of daily life care, specialized care and individualized care, care needs of the elderly were reviewed. The results showed that our country should develop the community elderly services, in particular, nursing services, to meet the demand and development of healthy aging and the positive aging society. Key words: Review; The elderly; Quality of life; Community-based home care; Care needs

Hope and despair 3/3: pluses and minuses for community health assistants in rural Zambia

Hope and despair 3/3: pluses and minuses for community health assistants in rural Zambia

Effects of Home Care Services Use by Older Adults on Family Caregiver Distress

The purpose of this study was to examine the association between utilization of home care services under the national long-term care insurance system and family caregiver distress. A secondary data analysis was conducted in this study using data collected in 2011 and 2012 from the Korean version of International Resident Assessment Instrument (interRAI) Home Care assessment system. The study sample included 228 clients receiving community based home care and their family caregivers in Korea. Descriptive statistics, χ² test, t-test, and Heckman selection model analysis were conducted using SAS 9.3. Presence of family caregiver distress was significantly associated with days of nurse visits (β=-.89, p=<.001) and home helper visits (β=-.53, p=.014). Level of caregiver distress was also significantly associated with days of nurse visits (β=-.66, p=.028). Other factors which were significantly associated with caregiver distress were depression, cognitive function, inadequate pain control, social support for older adult, and caregiver relationship to the older adult. The results of this study show that visiting nurse service and appropriate support programs for Older Adults and family caregivers experiencing caregiver distress should be developed and provided to families based on the health care needs of older adults and their family caregivers for effective and sustainable home care.

English

In Ethiopia, it was shown that funding levels are far from compatible to the needs for care and support services for people living with human immuno-deficiency virus (PLHIV) and orphaned and vulnerable children (OVC). The aim in this study is to map the relationship between client needs, actors, care and support services provided for PLHIV and OVC in Ethiopia. A case study of the Ethiopian community care program was carried out using multiple methods of data collection as part of a multi-country research of four countries. Three program cases providing care and support services throughout the country were studied. A total of 35 in-depth interviews, 9 focus group discussions, 60 guided interviews, and 3 community mapping exercises were carried out. Analysis was conducted using the thematic framework approach with coding and mapping of the transcripts in the ATLAS.ti version 5.0. The expansion of antiretroviral therapy (ART) has reduced the number of bed-ridden PLHIV in need of home based nursing care. Currently, inadequate access to food and lack of income to cover health care and other expenses are the major concerns of PLHIV in Ethiopia. Community Home Based Care (CHBC) in Ethiopia can be categorised into two types; clinical and non-clinical. Non-clinical care (psychosocial, economic, home nursing care, material, food, and other social supports) is mainly provided by non-governmental care-giving organizations. Clinical care was provided mainly by government health facilities which comprised services such as early detection and treatment for opportunistic infections (OIs), ART services and PMTCT. A clear shift of the need of PLHIV from basic nursing care at home to social and material support needs was observed. A coordinated effort from the key players including governmental entities, non-governmental organizations (NGOs) and faith-based organizations (FBOs), the community, associations of PLHIV and volunteers is required to meet the current needs of PLHIV and OVC in the country. Key words: Caregiver, community home based care, patient needs, service provision, care and support, people living with human immuno-deficiency virus (PLHIV), Ethiopia, qualitative methods, mapping.

Introduce and Promote the Home-based Hospice and Palliative Care

2-test and logistic regression. Results: Among the respondents, 15.9% were aware of home-based hospice care, and 61.3% were willing to receive home-based hospice care. The factors that influenced the participants’ willingness to use home-based hospice services included residential district, religion and private health insurance. Respondents who lived in Seoul (OR: 1.56, 95% CI: 1.04∼2.33), Gwangju/Jeolla province (OR: 2.02, 95% CI: 1.23∼3.32), Busan/Ulsan/South Gyeongsang province (OR: 1.81, 95% CI: 1.17∼2.82) were more well-aware of home-based hospice care than those who lived in Incheon/Gyeo nggi province. The faithful were more informed about the services than those without non-faithful participants (Roman Catholics (OR: 2.03, 95% CI: 1.30∼3.17), Protestants (OR: 1.76, 95% CI: 1.22∼2.53). Participants who had a private health insurance plan knew more about the services than those without one (OR: 1.45, 95% CI: 1.03∼2.04). Conclusion: First, it is necessary to improve perception of the public and healthcare providers regarding home-based hospice care. The government should review a measure to institutionalize operation of a palliative care team at hospitals and community homebased hospice care centers.

Exploring the Desires of HIV and AIDS Patients, Family Members and the Caregivers Associated with Zimbabwe’s Community Home-Based Care Programs

Exploring the Desires of HIV and AIDS Patients, Family Members and the Caregivers Associated with Zimbabwe’s Community Home-Based Care Programs

Exploring the Effectiveness of Community Home-Based Care (CHBC) Programs in Africa with Examples from Some African Countries

Incontrovertibly, CHBC programs in developing parts of the world can be a panacea if their efficiency and effectiveness are enhanced or strengthened. The aim of this paper is to raise debates and discourses on the effectiveness of CHBC programs in some developing countries. The paper has relied on a review of literature methodology. Findings indicate that CHBC are generally made ineffective by: inadequate public support, inadequate government support, lack of human and materials resources, and lack of financial resources. The following have been suggested to bolster CHBC programs: increase public awareness and support, fostering a strong government- NGO partnership, mobilizing local funding, mobilizing adequate human and material resources, and adopting various ways of strengthening the effectiveness of the programs. The paper has theoretically been premised on the Sustainable Livelihood Approach (SLA).

Exploring the Stumbling Blocks Lying Along the Success of Community Home-Based Care Programs (CHBC) in a Few Countries of the Developing World

The paper aims to debate the stumbling blocks lying along the success of CHBC programs in a score of countries from the developing world in their quest to reduce or mitigate the impacts of HIV/AIDS and to impact the conditions of patients under the CHBC programs. The paper depends on a wide range of data sources and has picked the following challenges associated with CHBC programs: lack of funds to sustain the programs, inadequate government support, inadequate care knowledge, stigma and discrimination and donor fatigue. These academics suggest the following recommendations as an approach to reinforce and bolster the services for CHBC programs: training caregivers and availing sufficient funding for CHBC programs, enriched human and material resources for CHBC programs, reinforcing the importance of CHBC programs in communities, and building a strong partnership with other organizations and the community.

Reckoning HIV/AIDS care: A longitudinal study of community home-based caregivers and clients in Swaziland

The article is a descriptive case study of a community home-based care (CHBC) organisation in Swaziland that depicts the convergence of CHBC expansion with substantially improved health outcomes. Comprised of 993 care supporters who tend to 3 839 clients in 37 communities across southern Swaziland, Shiselweni Home-based Care (SHBC) is illustrative of many resource-limited communities throughout Africa that have mobilised, at varying degrees of formality, to address the individual and household suffering associated with HIV/AIDS. To better understand the potential significance of global and national health policy/programming reliance on community health workers (task shifting), we analysed longitudinal data on both care supporter and client cohorts from 2008 to 2013. Most CHBC studies report data from only one cohort. Foremost, our analysis demonstrated a dramatic decline (71.4%) among SHBC clients in overall mortality from 32.2% to 9.2% between 2008 and 2013. Although the study was not designed to establish statistical significance or causality between SHBC expansion and health impact, our findings detail a compelling convergence among CHBC, improved HIV health practices, and declines in client mortality. Our analysis indicated (1) the potential contributions of community health workers to individual and community wellbeing, (2) the challenges of task-shifting agendas, above all comprehensive support of community health workers/care supporters, and (3) the importance of data collection to monitor and strengthen the critical health services assigned to CHBC. Detailed study of CHBC operations and practices is helpful also for advancing government and donor HIV/AIDS strategies, especially with respect to health services decentralisation, in Swaziland and similarly profiled settings.

Support for volunteer caregivers and its influence on the quality of community home-based care in the Eastern Cape, South Africa

The factors influencing the quality of community home-based care (CHBC) were explored from the perspective of volunteer caregivers, their clients and key informants in a South African Eastern Cape district. Focus group discussions and semi-structured interviews were used to collect data on the perceptions of quality of care from 32 volunteer caregivers, 32 clients and 12 other key informants. The survey data were descriptively analyzed and the qualitative data thematically coded. The results showed that supervisor support, peer support, community support and family support of the volunteer caregivers influenced their ability to provide quality CHBC to their clients.

Cost-Effectiveness Analysis of Hospitalization and Home-Based Care Strategies for People Living with HIV/AIDS: The Case of Zimbabwe.

The model of care of people living with HIV/AIDS (PLWHA) has shifted from hospital care to community home-based care (CHBC) because of shortage of space in hospitals and lack of resources. We evaluate the costs and benefits of home-based care and other HIV/AIDS intervention strategies in Zimbabwe, using an interdisciplinary approach which weaves together the techniques of an epidemic transmission model and economic evaluation concepts. The intervention strategies considered are voluntary counselling and testing (VCT), VCT combined with hospitalization (H), VCT combined with CHBC, and all the interventions implemented concurrently. The results of the study indicate that implementing all the strategies concurrently is the most cost-effective, a result which also agrees with the epidemiological model. Our results also show that the effectiveness of a strategy in the epidemiological model does not necessarily imply cost-effectiveness of the strategy and behaviour change, modelled by the parameters p and m, that accompanied the strategies, influencing both the cost-effectiveness of an intervention strategy and dynamics of the epidemic. This study shows that interdisciplinary collaborations can help in improving the accuracy of predictions of the course and cost of the epidemic and help policy makers in implementing the correct strategies.

Factors Determining Survival and Retention among HIV-Infected Children and Adolescents in a Community Home-Based Care and a Facility-Based Family-Centred Approach in Kampala, Uganda: A Cohort Study.

We describe factors determining retention and survival among HIV-infected children and adolescents engaged in two health care delivery models in Kampala, Uganda: one is a community home-based care (CHBC) and the other is a facility-based family-centred approach (FBFCA). This retrospective cohort study reviewed records from children aged from 0 to 18 years engaged in the two models from 2003 to 2010 focussing on retention/loss to follow-up, mortality, use of antiretroviral therapy (ART), and clinical characteristics. Kaplan Meier survival curves with log rank tests were used to describe and compare retention and survival. Overall, 1,623 children were included, 90.0% (1460/1623) from the CHBC. Children completed an average of 4.2 years of follow-up (maximum 7.7 years). Median age was 53 (IQR: 11–109) months at enrolment. In the CHBC, retention differed significantly between patients on ART and those not (log-rank test, adjusted, P < 0.001). Comparing ART patients in both models, there was no significant difference in long-term survival (log-rank test, P = 0.308, adjusted, P = 0.489), while retention was higher in the CHBC: 94.8% versus 84.7% in the FBFCA (log-rank test, P < 0.001, adjusted P = 0.006). Irrespective of model of care, children receiving ART had better retention in care and survival.

Nsambya Community Home-Based Care Complements National HIV and TB Management Efforts and Contributes to Health Systems Strengthening in Uganda: An Observational Study

Community Home-Based Care (CHBC) has evolved in resource-limited settings to fill the unmet needs of people living with HIV/AIDS (PLHA). We compare HIV and tuberculosis (TB) outcomes from the Nsambya CHBC with national averages in Kampala, Uganda. This retrospective observational study compared HIV and TB outcomes from adults and children in the Nsambya CHBC to national averages from 2007 to 2011. Outcomes included numbers of HIV and TB patients enrolled into care, retention, loss to follow-up (LTFU), and mortality among patients on antiretroviral therapy (ART) at 12 months from initiation; new smear-positive TB cure and defaulter rates; and proportion of TB patients tested for HIV. Chi-square test and trends analyses were used to compare outcomes from Nsambya CHBC with national averages. By 2011, approximately 14,000 PLHA had been enrolled in the Nsambya CHBC, and about 4,000 new cases of TB were detected and managed over the study period. Overall, retention and LTFU of ART patients 12 months after initiation, proportion of TB patients tested for HIV, and cure rates for new smear-positive TB scored higher in the Nsambya CHBC compared to national averages. The findings show that Nsambya CHBC complements national HIV and TB management and results in more positive outcomes.

‘All they do is pray’: Community labour and the narrowing of ‘care’ during Mozambique's HIV scale-up

This paper tracks the intertwined biographies of a community home-based care (CHBC) volunteer, Arminda, the community-based organisation she worked for, Mufudzi, and the HIV scale-up in Mozambique. The focus is on Arminda – the experiences, aspirations, skills, and values she brought to her work as a volunteer, and the ways her own life converged with the rise and fall of the organisation that pioneered CHBC in this region. CHBC began in Mozambique in the mid-1990s as a community-level response to the AIDS epidemic at a time when there were few such organised efforts. The rapid pace and technical orientation of the scale-up as well as the influx of funding altered the practice of CHBC by expanding the scope of the work to become more technically comprehensive, but at the same time more narrowly defining ‘care’ as clinically-oriented work. Over the course of the scale-up, Arminda and her colleagues felt exploited and ultimately abandoned, despite their work having served as the vanguard and national model for CHBC. This paper considers how this happened and raises questions about the communities constituted by global health interventions and about the role of and the voice of community health workers in large-scale interventions such as the HIV scale-up.

Do Local Governments Respond to (Perverse) Financial Incentives in Long-Term Care Funding Schemes?

Abstract A highlighted issue in long-term care (LTC) financing is the presence of unfortunate incentives in financing schemes. For instance, in Norway, a high share of high-income recipients provides financial incentives to the local governments (the agencies in charge of the LTC system) to increase reliance on nursing home care relative to community housing and home-based care. This article examines the effects of the Norwegian LTC funding system on the composition of LTC services at the local government level. I use a cross-section from 2009 of 391 local governments to estimate a fractional probit model using quasi-maximum likelihood estimation. Controlling for need and geographical variations in care costs, I find that the share of “rich” elderly has a significant association with three measures of the volume of nursing home care relative to home-based care.

A qualitative study of community home‐based care and antiretroviral adherence in Swaziland

IntroductionAntiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub-Saharan Africa and the importance of community home-based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients’ quality of life, tending to the needs of care supporters and achieving healthier populations.MethodsThis article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting.ResultsNinety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community.DiscussionGeneral inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter “talk” to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care “relationship” was itself the “intervention,” providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research.ConclusionsPLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients’ experiences of sickness, stigma and poverty, rendering them influential in individuals’ decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ensure that PLWHA are correctly counselled and care supporters themselves supported. Overall, findings showed that PLWHA experiences of CHBC should be captured and incorporated into any programme aimed at successfully implementing the Joint United Nations Programme on HIV and AIDS (UNAIDS) Treatment 2.0 agenda Pillar 4 (increasing HIV testing uptake and care linkages) and Pillar 5 (strengthening community mobilization).

Attrition and Loss to Follow-up Among Children and Adolescents in a Community Home-Based Care HIV Programme in Uganda

Background: We examine attrition and Loss To Follow Up (LTFU) and their baseline predictors among HIVinfected children and adolescents in a Community Home-Based Care (CHBC) model in Kampala (Uganda). Methods: We conducted a retrospective cohort analysis of attrition and LTFU and their predictors among children and adolescents aged 0-20 years in the Tukula Fenna project. The project operates at the Home Care Department of Nsambya Hospital and four outreach clinics, located in Kampala and three surrounding districts in Uganda. The project uses community home-based care to provide free Antiretroviral Therapy (ART), other medical treatment as necessary, nutritional support, psychosocial support, and home visits. Kaplan-Meier curves were used to assess attrition and LTFU, and multivariate Cox proportional hazard regression models were used to identify their predictors. Results: 1162 children and adolescents with confirmed positive HIV status were enrolled in the Tukula Fenna project between October 2003 and August 2012. Over this period, 5.34% of patients died (62), 37.61% were LTFU (437), and overall attrition was 42.94% (499). This resulted in overall incidence of death of 18 per 1000 person-years, of LTFU of 126 per 1000 person-years, and of attrition of 144 per 1000 person-years. The single factor significantly associated with overall attrition among the 1162 patients was absence of ART (HR: 0.11, 95% CI: 0.09,0.14). Both baseline BMI z-score (HR: 0.96, 95% CI: 0.91, 1.00) and receipt of ART (HR: 0.12, 95% CI: 0.10, 0.15) were significantly negatively associated with LTFU among all 1162 patients in this cohort. Conclusion: Not receiving ART was the single factor significantly associated with overall attrition. Both baseline BMI z-scores and receipt of ART were protective against LTFU among HIV positive children and adolescents enrolled in the Tukula Fenna project. Orphans need more nutritional support and improved access to early ART initiation.

South African Eastern Cape Contexts Influencing the Quality of Community Home-Based Care

This study explored the perceptions of the quality of community home-based care (CHBC) as provided by volunteer caregivers in a South African Eastern Cape district. Data on perceptions regarding quality of care were collected from 76 community informants (32 volunteer caregivers, 32 clients and 12 key informants) using focus group discussions and semi-structured interviews. The quantitative data from the survey were descriptively analyzed and the qualitative data thematically coded. The results showed that poverty, inclusive of substandard living conditions, unemployment and a lack of food security influenced the perceived quality of the CHBC.