Community Home-based Care Research Articles

Perceived Benefits Of Remote Data Capturing In Community Home-Based Care: The Caregivers’ Perspective

Community home-based care (CHBC) is encouraged in developing countries due to the increasing burden on their health care systems. Paper-based recordkeeping practices are the norm in these resource-poor settings. This paper aims to understand the CHBC environment, the daily work activities of caregivers and problems they face with paper-based systems. The paper provides a rich descriptive view of the daily lives of caregivers who volunteer at a CHBC service point in South Africa. Based on this understanding, the paper explores the caregivers' notions of the perceived benefits (and disadvantages) of using mobile phones for data collection at the point of care.

Long-term Care in China: Issues and Prospects

One of the major socioeconomic challenges China faces is the rapid aging of its population. China is now an aging society, even though it is still regarded as a middle-income economy. Coupled with the market-driven reform of social services and rapid erosion of family support, the provision of affordable and accessible social care services to older people has already become an urgent issue for the government to address. Looking into the future, the formulation of a sustainable position on long-term care (LTC) will increasingly become the major focus of social policy. This article sets out the background to the demographic shifts resulting in the emerging need for LTC in China. It analyzes the issues facing LTC services and reviews their prospects, including the structure, operation, financing, and interfacing of residential and community-based home care services.

Principles of Strengths-Based Nursing Leadership for Strengths-Based Nursing Care: A New Paradigm for Nursing and Healthcare for the 21st Century

The current healthcare system is slowly evolving into a new system built on a vision of health promotion, primary care and community-based home care, with hospitals still being a core pillar of the healthcare system but not its primary service. This transformation requires a new approach to practice, namely, Strengths-Based Nursing Care (SBC). SBC is about mobilizing, capitalizing and developing a person's strengths to promote health and facilitate healing. For nurses to practise SBNC requires strong nursing leadership that creates conditions to enable them to do so. Strengths-Based Nursing Leadership complements and acts in synergy with, SBNC. This paper describes eight principles of Strengths-Based Nursing Leadership to support SBNC.

Development of the Quality Indicators in Long Term Care Service

Purpose: This study was designed to develop quality outcome indicators for nursing homes and community-based home care that would contribute to an appropriate evaluation and improvement of quality of long term care in Korea. Methods: The preliminary quality indicators of long term care were developed from a literature review and clinical expert panel. A content validity testing was done using a panel of experts who were selected from academic and clinical field of long-term care. The final quality indicators were confirmed after application in four nursing homes and four home care agencies to test clinical validity. Results: The preliminary quality indicators consisted of 3 domains and 19 indicators. The final quality indicators were composed of 4 domains and 17 indicators. Conclusion: This study demonstrated the feasibility of outcome quality indicators in long term care. These quality indicators can be effectively used to evaluate the quality of nursing home and home care and to improve the quality of care in the Korean long-term care system.

Assessment of status of patients receiving palliative home care and services provided in a rural area-Kerala, India

Context:For the first time in India, a Pain and Palliative Care policy to guide the community-based home care initiatives was declared by the Government of Kerala state. In Kerala, majority of the panchayats (local self-governments) are now conducting home-based palliative care as part of primary health care. National focus domain areas in palliative care research are structure and process, the physical aspects, and also the social aspects of care.Aims:The study was conducted to assess the patient's status and the services provided by palliative home care.Settings and Design:The descriptive study was conducted at Mavoor panchayat—Kozhikode district of Kerala, India by collecting information from the case records, nurses diary notes of all enrolled patients.Materials and Methods:Collecting information from the case records, nurses diary notes of all enrolled patients.Statistical Analysis:The data were entered using Microsoft excel for Windows XP and analyzed using SPSS 16.0 (Statistical Package for Social Sciences; SPSS Inc., Chicago, IL, USA).Results:Totally, 104 patients were enrolled. Diagnosis wise major category was degenerative diseases. There were 27% persons suffering from cerebrovascular accidents, 15.3% with malignancies, 8.7% with coronary artery disease, 5.8% with complications of diabetes, and 8.7% were with fracture of bones. The major complaints were weakness (41.3%), tiredness (31.7%), and pain (27%). Twenty-five percent persons complained of urinary incontinence, 12.5% complained of ulcer, 10.6% of edema, and 9.6% of mental/emotional agony. The activity of daily living status was as follows. Twenty-five percent subjects were completely bed ridden. 5.8% were feeding through Ryles tube, 16.3% had urinary incontinence, 9.6% were having no bowel control.Conclusions:The service could address most of the medical, psychosocial, and supportive needs of the patients and reduce their pain and symptoms. The interface between institutional-based care and home care needs more exploration and prospective studies.

Gender discrepancies in the HIV/AIDS Community Home-Based Care Programme in Kanye, Botswana

The aim and objective of this paper is to discuss the gender discrepancies associated with caregiving based on empirical findings from the Kanye HIV/AIDS Community Home-Based Care (CHBC) Programme. The research study was explorative and descriptive in nature and qualitative in design. It used focus group discussions among the caregiver respondents and one-on-one interviews with the CHBC nurses. The findings indicate that the caregiving role among women, and spilling over to girl children, is a result of socialisation that is deeply ingrained in the belief systems of cultures and communities, presents a state of gender exploitation and a human rights denial, is reinforced by the forces of patriarchy, and contributes immensely to the feminisation of poverty. The study recommends gender mainstreaming and analysis in all the institutions of social development, as well as poverty mitigation measures and education to surmount the effects of gender imbalances, gender inequality and gender inequity.

Free love: A case study of church-run home-based caregivers in a high vulnerability setting

The purpose of this study is to explore the concept of religious health assets (RHA) and its relevance to HIV/AIDS. This manuscript describes the experiences of caregivers with a church-run home-based care organisation in Swaziland, site of the world's highest HIV prevalence (42%). In light of reduced antiretroviral treatment rollout in some areas of Africa, strengthening mechanisms of treatment support with HIV prevention has never been more critical. One modality may be community home-based care (CHBC), a core feature of the World Bank's Multi-Country HIV/AIDS Program for Africa. Yet, these entities, and the frontline activities of local congregations, remain underexplored. Part of a larger anthropological study of religion and HIV/AIDS in Swaziland, this manuscript draws on 20 semi-structured caregiver interviews to discern patterns in motivations; perceived client needs; care practices; and meanings of religiosity. Thirteen participants were care coordinators who oversaw approximately 455 caregivers across nearly half of the 22 communities served. Grounded theory analysis suggested that caregivers facilitated vital decisions around HIV testing, HIV disclosure, treatment uptake/adherence, as well as reduced HIV stigma. Also salient was the importance of a Christian ethos, in the form of ‘talk’ and ‘love’, as critical culturally situated care practices. Having expanded to an estimated 600 caregivers and 2500 home-based clients between 2006 and 2009, Participants' reports intimated their roles as agents of broader social transformation. This article contributes to the expanding study of RHA and challenges authoritative global public health strategies that have largely marginalised local religious aspects of HIV/AIDS. Future applied research examining how ‘home’ and ‘church’ may be vital public health settings outside of, but integral to, formal health services and HIV programming is warranted.

Redefining volunteerism: the rhetoric of community home-based care in (the not so new) South Africa

The extent of the HIV/AIDS epidemic in South Africa complicates the daunting task of rendering a basic health service to HIV-infected individuals. In light of human resource shortages and financial constraints but also closely linked to a much politicized notion the community was called upon to become active in volunteering activities. Since 2002 the South African government epitomized by the ruling party the African National Congress embarked on a mission to recruit volunteers to perform various voluntary activities of which community home-based care is one. This article intends to juxtapose the rhetoric pertaining to this call to volunteerism with the realities of carers and recipients of this care. This shows that on the one hand the rhetoric exploits concepts that bear wide legitimacy. On the other hand this rhetoric does not take into account the contradictory everyday life realities and the changing nature of the concepts it wields.

Analysis of the burdens of caregivers providing care to people living with HIV/AIDS in Botswana

AbstractBackground: Caregivers, when providing care under the community home-based care (CHBC) programme, experience many burdens of a physical, emotional, financial or social nature. However, these problems are hardly ever considered by the planners of CHBC programmes. A comprehensive overview of the experiences of caregivers is desirable to help policy makers and public health planners formulate intervention measures to address caregivers' burdens.Methods: The sample size calculator programme that allows for 95% confidence (and an error margin of 4%) was used: the estimated sample size for the study was 272. This number was derived from the eight sampled CHBC groups using probability proportional to size. Simple random sampling was employed in identifying the specific caregivers to be interviewed. Questionnaires were administered on this selected sample at their homes or CHBC headquarters by trained research assistants who ensured that all ethical considerations were observed. In the end, 169 caregivers...

An evaluation of the implementation of integrated community home-based care services in vhembe district, South Africa.

Aim:The aim of the study is to evaluate the implementation of integrated community home-based care (CHBC) services in Vhembe District, Limpopo Province, South Africa.Materials and Methods:In all, 393 caregivers responded to a questionnaire on various aspects of home-based care and service provider characteristics.Results:Results indicate that in most areas of the Community Homes-based Care (CHBC) services, caregivers had confidence including wound dressing, health education, bet bathing, giving prescribed medication, and management of diabetes client, and they had sufficient knowledge received through training. Lower knowledge and confidence was noted for the management of hypertensive and asthmatic clients, and lower knowledge (82%) was indicated for counseling. The most common caregiving services included health education (100%), giving medication (98%), management of hypertension (22%), and counseling (15%). Most caregivers rated the implementation of CHBC in their district as excellent or good (70%). The most common problems and barriers in caregiving included (1) structural problems: none or sometimes not available home-based care kits (54%), lack of resources (32%), lack of transport money (30%), and very low stipend (22%); (2) problems with the supervisor such as “lack of management skills” (40%) and “selfishness” (38%); and (3) problems with clients and community such as “patients not taking prescribed medicines regularly” (45%) and “not welcomed by patients and family members” (35%).Conclusion:Community home-based caregivers are largely able to implement home-based care services but would need more support (training, financial, career structure, and health system) to improve on their services.

Community home-based care – a cost-effective model of care: who benefits?

Statistics indicate that the HIV and AIDS pandemic is rampant in the province of KwaZulu-Natal (KZN). Increasingly, people with HIV and AIDS rely on voluntary community home-based caregivers for care and support. Drawing on original research conducted in 2005 and a subsequent study in 2009, this article presents the socio-economic context of care and women's perspectives on care giving. The study was conducted in three different communities in KZN. The feminist post-structuralist perspective provided the theoretical framework. Data collection methods included in-depth semi-structured interviews, observations and documentary review. The data were analysed using the grounded theory approach. The study revealed that it is poor, black, unemployed Zulu women who provide community home-based care (CHBC) in the province. The findings further suggested that the CHBC programme overlooks the realities of women, who operate in a context of poverty and unemployment. It is therefore argued that while the National HIV and AIDS Strategic Plan 2007–2011 has made progressive strides, implementation of the set targets remains a formidable challenge. In practice, the Plan remains gender-blind to poor women's social, political and economic imperatives. The article proposes a model of care that takes into cognisance the interests of women caregivers.

Validating that palliative care giving is a stressful occupation: the case of the Kanye community home-based care programme, Botswana

AbstractBackground: It remains an incontrovertible fact that the phenomenon of HIV/AIDS has not only posed major health and development challenges, but is also a stressor experienced at local, regional and global levels. This article explores the stress-related challenges facing volunteer palliative caregivers in the Kanye community home-based care (CHBC) programme.Methods: The study was explorative in nature and qualitative in design, and used convenience sampling methodologies to involve 82 registered primary caregivers and the five CHBC nurses in the programme as research participants. Participant observation was also used.Results: The study found the following aspects inherent in care giving to be immensely stressful and challenging: • Heavy caseload of the caregivers;• Ageing of the caregivers;• Stigma and discrimination abound in care giving;• Conflict between caregivers and clients;• Poor state of referral networks;• Inadequate care packages;• Poverty of the caregivers themselves; and• Inadequate f...

Providing universal access to antiretroviral therapy in Thyolo, Malawi through task shifting and decentralization of HIV/AIDS care

To describe how district-wide access to HIV/AIDS care was achieved and maintained in Thyolo District, Malawi. In mid-2003, the Ministry of Health and Médecins Sans Frontières developed a model of care for Thyolo district (population 587, 455) based on decentralization of care to health centres and community sites and task shifting. After delegating HIV testing and counseling to lay counsellors, uptake of testing increased from 1300 tests per month in 2003 to 6500 in 2009. Shifting responsibility for antiretroviral therapy (ART) initiations to non-physician clinicians almost doubled ART enrollment, with a majority of initiations performed in peripheral health centres. By the end 2009, 23, 261 people had initiated ART of whom 11, 042 received ART care at health-centre level. By the end of 2007, the universal access targets were achieved, with nearly 9000 patients alive and on ART. The average annual cost for achieving these targets was € 2.6 per inhabitant/year. The Thyolo programme has demonstrated the feasibility of district-wide access to ART in a setting with limited resources for health. Expansion and decentralization of HIV/AIDS service-capacity to the primary care level, combined with task shifting, resulted in increased access to HIV services with good programme outcomes despite staff shortages.

Human-rights perspectives on caregiving of people with HIV: the case for the Kanye home-based care programme, Botswana

The article discusses the human rights associated with caregiving to people with HIV or AIDS, based on empirical findings about a community home-based care programme in Kanye, Botswana. The study was explorative in nature and qualitative in design and used focus group discussions with caregivers and one-on-one interviews with nurses in the programme. The findings indicate that primary caregivers suffer various infringements on their human rights and regularly face dilemmas pertaining to inadequate access to their clients’ medication and treatment, inadequate knowledge of their clients’ sickness, lack of compensation in case of injury during caregiving, gender exploitation, inequality, stigma, and harsh working conditions often coupled with a heavy caseload. Having children leave school to carry out a caregiving role also represents an abuse of human rights. The researcher advocates anti-stigma and gender-empowering education, adequate treatment and medication for clients to facilitate caregiving, the formulation of policy that would allow caregivers information about their clients’ sicknesses, improved caregiving conditions, and the discouragement of minors from leaving school to take on caregiving.

Expanding the Reach of Palliative Care to Community-Based Home Care Programs

This article describes a pilot project, run over a two-year period in the Eastern Cape province of South Africa. It was aimed at assessing the impact of a model of introducing a palliative care component and professional supervision of community caregivers on the quality of care given to people living with HIV/AIDS and their families. The use of the African Palliative Care Association African Palliative Outcome Scale as an assessment tool is outlined, and the challenges and outcomes encountered by the various role players are listed. The overall conclusion is that this model is a cost-effective way of increasing access to palliative care in resource poor settings.

AIDS in the family and community: The impact on child health in Malawi

Pediatric HIV infections jeopardize children's health and survival. Much less is known about how the experiences of being orphaned, living with chronically ill parents, or living in a severely affected community impact child health. Our study responds by examining which HIV/AIDS-related experiences place children at greatest risk for poor health. Data from the 2004-2005 Malawi Integrated Household Survey were analyzed using logistic multilevel modeling to examine whether HIV/AIDS-related experiences within the family and community predicted reported health status among children age 6-17 years. We found higher burdens of acute and chronic morbidity for children whose parents have an AIDS-related illness. No other AIDS-related exposure, including orphanhood and recent household deaths, demonstrated a clear relationship with health status. Children living with sick parents may be at increased risk due to the spread of infectious disease and receiving limited adult care. Community home-based care programs are best situated to identify children in these difficult circumstances and to mitigate their disadvantage.

Pitting Botswana’ 1996 community home based care programme (CHBC) objectives against 2005/2006 empirical study findings: The case for the Kanye programme.

Community home based care (CHBC) programmes are vehicles used by communities to compliment government efforts in tackling care challenges presented by HIV and AIDS. This article validates Botswana’s CHBC programme objectives, pitting them against empirical findings from a study conducted in 2005/2006. The study, which was conducted in the Kanye area of Botswana, was qualitative in nature, and involved 10 focus group discussions involving 82 primary caregivers, one-to-one interviews with five nurses supervising the programme, and participant observation. The findings indicate that while the national CHBC objectives are relevant, valid and visionary, the conditions on the ground are often such that they (objectives) are sometimes inadequately implemented. Policy makers need to ensure there is closer supervision, monitoring and evaluation surveillance, and research on the ground to address the widening gaps and glaring challenges faced in attempts to fulfil the objectives. KEYWORDS: CHBC programme objectives, HIV and AIDS, clients/patients, caregivers, Botswana

Electrical Stimulation Therapy Increases Rate of Healing of Pressure Ulcers in Community-Dwelling People With Spinal Cord Injury

Houghton PE, Campbell KE, Fraser CH, Harris C, Keast DH, Potter PJ, Hayes KC, Woodbury MG. Electrical stimulation therapy increases rate of healing of pressure ulcers in community-dwelling people with spinal cord injury. Objective To investigate whether electric stimulation therapy (EST) administered as part of a community-based, interdisciplinary wound care program accelerates healing of pressure ulcers in people with spinal cord injury (SCI). Design Single-blind, parallel-group, randomized, controlled, clinical trial. Setting Community-based home care setting, Ontario, Canada. Participants Adults (N=34; mean age ± SD, 51±14y) with SCI and stage II to IV pressure ulcers. Interventions Subjects were stratified based on wound severity and duration and randomly assigned to receive either a customized, community-based standard wound care (SWC) program that included pressure management or the wound care program plus high-voltage pulsed current applied to the wound bed (EST+SWC). Main Outcome Measures Wound healing measured by reduction in wound size and improvement in wound appearance at 3 months of treatment with EST+SWC or SWC. Results The percentage decrease in wound surface area (WSA) at the end of the intervention period was significantly greater in the EST+SWC group (mean ± SD, 70±25%) than in the SWC group (36±61%; P=.048). The proportion of stage III, IV, or X pressure ulcers improving by at least 50% WSA was significantly greater in the EST+SWC group than in the SWC group ( P=.02). Wound appearance assessed using the photographic wound assessment tool was improved in wounds treated with EST+SWC but not SWC alone. Conclusions These results demonstrate that EST can stimulate healing of pressure ulcers of people with SCI. EST can be incorporated successfully into an interdisciplinary wound care program in the community.

Estimating the cost of care giving on caregivers for people living with HIV and AIDS in Botswana: a cross‐sectional study

BackgroundCommunity home-based care is the Botswana Government's preferred means of providing care for people living with HIV (PLHIV). However, primary (family members) or volunteer (community members) caregivers experience poverty, are socially isolated, endure stigma and psychological distress, and lack basic care-giving education. Community home-based care also imposes considerable costs on patients, their caregivers and families in terms of time, effort and commitment. An analysis of the costs incurred by caregivers in providing care to PLHIV will assist health and social care decision makers in planning the most appropriate ways to meet future service needs of PLHIV and their caregivers.MethodsThis study estimated the cost incurred in providing care for PLHIV through a stratified sample of 169 primary and volunteer caregivers drawn from eight community home-based care groups in four health districts in Botswana.ResultsThe results show that the mean of the total monthly cost (explicit and indirect costs) incurred by the caregivers was $(90.45 ± 9.08) while the mean explicit cost of care giving was $(65.22 ± 7.82). This mean of the total monthly cost is about one and a half times the caregivers' mean monthly income of $66.00 (± 5.98) and more than six times the Government of Botswana's financial support to the caregivers. In addition, the cost incurred per visit by the caregivers was $15.26, while the total expenditure incurred per client or family in a month was $184.17.ConclusionsThe study, therefore, concludes that as the cost of providing care services to PLHIV is very high, the Government of Botswana should substantially increase the allowances paid to caregivers and the support it provides for the families of the clients. The overall costs for such a programme would be quite low compared with the huge sum of money budgeted each year for health care and for HIV and AIDS.

Ten years of managing the clinical manifestations and disabilities of lymphatic filariasis

The aim of the Global Programme to Eliminate Lymphatic Filariasis is to eradicate one of the world's leading causes of permanent and long-term disability, at least as a public-health problem. The achievement of this goal is based on the interruption of the transmission of the causative parasites (so preventing new cases) and, as a 'second pillar', the prevention of disability in those who are infected. The disability is associated with the main clinical manifestations of human infection with Wuchereria or Brugia spp. (i.e. hydrocele, lymphoedema and/or 'acute attacks'). The World Health Organization and its partners have established strategies and activities both for managing lymphoedema, through community home-based care, and for increasing access to surgery for hydrocele. Over the last decade, there has been progress made in preventing the disability of lymphatic filariasis, the monitoring and evaluation of such disability and its control, and the integration of disability prevention with mass drug administrations and efforts to control other disabling diseases. That progress and the challenges that remain in the prevention of the morbidity and disability attributable to lymphatic filariasis are here reviewed.