Community Home-based Care Programme Research Articles

An ecological systems approach to the difficulties faced by social workers in community home-based care organisations for people living with HIV

ABSTRACT Background: Social workers play an instrumental role in supporting vulnerable populations by among others, designing and implementing support programmes such as community home-based care (CHBC) for People Living with HIV (PLWHIV). Existing research studies have demonstrated their role in championing programmes like support groups, counselling services and material support to PLWHIV and their caregivers as well as the HIV prevention and other advocacy programmes across communities. Within the CHBC programmes for HIV, social workers’ roles include supporting caregivers who care for PLWHIV to manage complex cases that are beyond their competencies and offering the necessary training on patient support. Although the contributions made by social workers in the field of HIV have immensely been documented in various parts of literature, less substantial attention has been given to their challenges particularly when working with PLWHIV through CHBC programmes. Methods: This qualitative research study was designed from exploratory and descriptive strategies and grounded on ecological systems theory to explore the challenges faced by social workers working with PLWHIV through the CHBC programmes. Thirteen social workers were sampled from South Africa’s City of Tshwane Municipality (CTMM) through purposive and snowball techniques, to participate in semi-structured interviews of which the data were analysed thematically and verified according to Lincoln and Guba’s data qualitative data verification strategies. Findings: The findings highlighted several difficulties faced by social workers including difficulties associated with managing challenges faced by PLWHIV, dealing with uncooperative PLWHIV and lack of resources to effectively respond to their clients’ needs. Conclusions: The conditions in which social workers render services to PLWHIV were highlighted by pointing to the complexities resulting from these challenges which further compromises the quality of services rendered to PLWHIV. For the success of HIV programmes, it is essential to support social workers through training, resources, community awareness and income-generating projects.

An evaluation of self-management outcomes among chronic care patients in community home-based care programmes in rural Malawi: A 12-month follow-up study.

This paper investigates the impact of community home‐based care (CHBC) on self‐management outcomes for chronically ill patients in rural Malawi. A pre‐ and post‐evaluation survey was administered among 140 chronically ill patients with HIV and non‐communicable diseases, newly enrolled in four CHBC programmes. We translated, adapted and administered scales from the Stanford Chronic Disease Self‐Management Programme to evaluate patient's self‐management outcomes (health status and self‐efficacy), at four time points over a 12‐month period, between April 2016 and May 2017. The patient's drop‐out rate was approximately 8%. Data analysis included descriptive statistics, tests of associations, correlations and pairwise comparison of outcome variables between time points, and multivariate regression analysis to explore factors associated with changes in self‐efficacy following CHBC interventions. The results indicate a reduction in patient‐reported pain, fatigue and illness intrusiveness, while improvements in general health status and quality of life were not statistically significant. At baseline, the self‐efficacy mean was 5.91, which dropped to 5.1 after 12 months. Factors associated with this change included marital status, education, employment and were condition‐related; whereby self‐efficacy for non‐HIV and multimorbid patients was much lower. The odds for self‐efficacy improvement were lower for patients with diagnosed conditions of longer duration. CHBC programme support, regularity of contact and proximal location to other services influenced self‐efficacy. Programmes maintaining regular home visits had higher patient satisfaction levels. Our findings suggest that there were differential changes in self‐management outcomes following CHBC interventions. While self‐management support through CHBC programmes was evident, CHBC providers require continuous training, supervision and sustainable funding to strengthen their contribution. Furthermore, sociodemographic and condition‐related factors should inform the design of future interventions to optimise outcomes. This study provides a systematic evaluation of self‐management outcomes for a heterogeneous chronically ill patient population and highlights the potential and relevant contribution of CHBC programmes in improving chronic care within sub‐Saharan Africa.

Patient–provider perspectives on self‐management support and patient empowerment in chronic care: A mixed‐methods study in a rural sub‐Saharan setting

AimTo explore how provision of self‐management support to chronically‐ill patients in resource‐limited settings contributes to patient empowerment in chronic care.DesignConcurrent descriptive mixed methods research.MethodsA survey of 140 patients with chronic conditions administered at four time‐points in 12 months. We conducted 14 interviews and four focus‐group discussions with patients (N = 31); 13 healthcare provider interviews; and observations of four patient‐support group meetings. Data were collected between April 2016 ‐ May 2017 in rural Malawi. Qualitative data were analysed using a thematic approach and descriptive statistical analysis performed on survey data.ResultsHealthcare professionals facilitated patient empowerment through health education, although literacy levels and environmental factors affected self‐management guidance. Information exchanged during patient–provider interactions varied and discussions centred around medical aspects and health promoting behaviour. Less than 40% of survey patients prepared questions prior to clinic consultations. Health education was often unstructured and delegated to non‐physician providers, mostly untrained in chronic care. Patients accessed psychosocial support from volunteer‐led community home‐based care programmes. HIV support‐groups regularly interacted with peers and practical skills exchanged in a supportive environment, reinforcing patient's self‐mangement competence and proactiveness in health care.ConclusionFor optimal self‐management, reforms at inter‐personal and organizational level are needed including; mutual patient‐provider collaboration, diversifying access to self‐management support resources and restructuring patient support‐groups to cater to diverse chronic conditions.ImpactOur study provides insights and framing of self‐management support and empowerment for patients in long‐term care in sub‐Saharan Africa. Lessons drawn could feed into designing and delivering responsive chronic care interventions.

The Hurdles Underpinning HIV and AIDS Community Home Based Care Programs in Zimbabwe and Possible Remedies

The Hurdles Underpinning HIV and AIDS Community Home Based Care Programs in Zimbabwe and Possible Remedies

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.

A Case Study Evaluation of the Training Gaps among Palliative Caregivers in Botswana Community Home Based Care Programs (CHBC)

The aim of the present research is to evaluate the training gaps and challenges within the Botswana community home based care programs exemplified by an empirical case study. The study used qualitative paradigm; was exploratory in nature and used case study design; and entailed interviewing 82 palliative primary caregivers in 10 focus groups and five CHBC nurses on one-to-one in-depth interviews. An interview guide served as a data collection instrument for both the focus groups and the interviews. Findings indicated an array of training gaps and challenges such as: lack of a caregiver training arrangement in the CHBC program; inadequate training of the caregivers; caregivers' inadequate skills in handling and disposal of clinical waste; complaints of primary caregivers being discriminated in training in favour of for community caregivers. The CHBC program needs: a comprehensive caregiver training to increase caregivers' understanding of the care giving field generally; training of caregivers on gender mainstreaming, self-care, management of clinical waste, and in income generating activities. Balancing training opportunities between the palliative primary caregivers and community palliative caregivers (volunteers) has been found critical.

Integration of community home based care programmes within national primary health care revitalisation strategies in Ethiopia, Malawi, South-Africa and Zambia: a comparative assessment.

BackgroundIn 2008, the WHO facilitated the primary health care (PHC) revitalisation agenda. The purpose was to strengthen African health systems in order to address communicable and non-communicable diseases. Our aim was to assess the position of civil society-led community home based care programmes (CHBC), which serve the needs of patients with HIV, within this agenda. We examined how their roles and place in health systems evolved, and the prospects for these programmes in national policies and strategies to revitalise PHC, as new health care demands arise.MethodsThe study was conducted in Ethiopia, Malawi, South Africa and Zambia and used an historical, comparative research design. We used purposive sampling in the selection of countries and case studies of CHBC programmes. Qualitative methods included semi-structured interviews, focus group discussions, service observation and community mapping exercises. Quantitative methods included questionnaire surveys.ResultsThe capacity of PHC services increased rapidly in the mid-to-late 2000s via CHBC programme facilitation of community mobilisation and participation in primary care services and the exceptional investments for HIV/AIDS. CHBC programmes diversified their services in response to the changing health and social care needs of patients on lifelong anti-retroviral therapy and there is a general trend to extend service delivery beyond HIV-infected patients. We observed similarities in the way the governments of South Africa, Malawi and Zambia are integrating CHBC programmes into PHC by making PHC facilities the focal point for management and state-paid community health workers responsible for the supervision of community-based activities. Contextual differences were found between Ethiopia, South Africa, Malawi and Zambia, whereby the policy direction of the latter two countries is to have in place structures and mechanisms that actively connect health and social welfare interventions from governmental and non-governmental actors.ConclusionsCountries may differ in the means to integrate and co-ordinate government and civil society agencies but the net result is expanded PHC capacity. In a context of changing health care demands, CHBC programmes are a vital mechanism for the delivery of primary health and social welfare services.

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.

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...

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...

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.

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

Traditional healers as caregivers to HIV/AIDS clients and other terminally challenged persons in Kanye community home-based care programme (CHBC), Botswana

The research study done at the Kanye village of Botswana was qualitative in design and exploratory in nature. While the broad goal aimed at assessing the contributions of caregivers in the Kanye CHBC programme, this article aims at evaluating the traditional healers' contribution as providers of care to HIV/AIDS patients and other chronically ill persons. The study conveniently involved all the 140 registered caregivers in the Kanye programme, but with only 82 caregivers turning up for focus group discussions. The caregivers were grouped in 10 focus group discussions, and all of the 5 CHBC nurses were subjected to one-on-one interviews. Both the focus group discussions and one-on-one interviews with the nurses used two slightly different interview schedules as data collection instruments. The study findings revealed that traditional healers are important players in caregiving of persons with various ailments but their role, position and contribution in the battle against HIV/AIDS is fast waning with time. The government has been challenged to map out strategies of collaboration between the two systems as traditional healers can complement the services of biomedical practitioners in this era of HIV/AIDS.

Morbidity and mortality among a cohort of HIV-infected adults in a programme for community home-based care, in the Kilimanjaro Region of Tanzania (2003–2005)

Community home-based care (CHBC) plays an integral role in the care of HIV-infected patients living in resource-limited regions. A longitudinal cohort study has recently been conducted, in the Kilimanjaro Region of northern Tanzania, in order to identify the components of an effective CHBC programme. Structured questionnaires were administered to clients over two census rounds, one in October 2003-February 2004 and the other in January 2005-October 2005. In the second round, follow-up interviews were completed for 226 (87.9%) of the 257 clients included in the first round. The clients included in the first round had a median (range) age of 38 (20-66) years and 182 (75.2%) of them were female. Although only 27 (12.9%) of them were using antiretroviral therapy (ART) when first interviewed, 108 (44.6%) were taking trimethoprim-sulfamethoxazole (SXT) prophylaxis. By the time of the follow-up interviews, 102 (45.1%) of the clients included in the first round had died, giving a mortality of 51/100 person-years of observation. The primary cause of death for 87 (85.3%) of the clients who had died was respiratory and/or gastro-intestinal infection, and the most common contributory causes of death were malnutrition (81.4%) and anaemia (42.2%). On bivariable analysis, the following first-round conditions were found to be significantly associated with death by the second census round: weakness for >1 month [odds ratio (OR)=2.64; P=0.008]; oral thrush (OR=2.31; P=0.015); painful swallowing (OR=2.02; P=0.036); staying in bed for part of the day over most of the previous month (OR=1.94; P=0.017); fever for >1 month (OR=1.95; P=0.016); and severe bacterial infections (OR=1.80; P=0.036). The high mortality was associated with advanced, symptomatic HIV disease for which antiretroviral therapy was indicated. Clients who were in the advanced stages of HIV disease (as defined by the World Health Organization's criteria) in the first census round were significantly more likely to have died by the time of the second round than the other clients investigated (log-rank chi(2)=8.115; P=0.044). The high level of morbidity observed in this study, and the causes of mortality that were identified, emphasise the need for CHBC programmes to provide HIV-infected patients with improved access to basic resources such as SXT and isoniazid prophylaxis, clean water, oral rehydration therapy, and micronutrient supplementation, in addition to increased access to ART.

Challenges impacting on the quality of care to persons living with HIV/AIDS and other terminal illnesses with reference to Kanye community home-based care programme

HIV/AIDS has been found to be a challenging disease to humanity, its challenge spin-offs falling especially on to the caregivers of those infected and affected by the virus. This paper aims to discuss the challenges influencing the state of caregiving in the Kanye community home-based care (CHBC) programme in Botswana. The study was qualitative in design and explorative in nature, involving 82 primary caregivers in focus group discussions, and 5 CHBC nurses in individual interviews. Caregivers were found challenged by lack of community networks support, inadequate sanitary and care packages, poor shelter compromising privacy, inadequate income and food for their clients, inadequate care motivation as their volunteerism does not attract any payment, inadequate health personnel to offer psychosocial support like counselling, and an unconducive caring environment generally. Putting in place policies to redress caregivers' poverty, helping caregivers start income-generating projects, increasing community assistance and caregiving facilities are recommended as factors to address caregiver challenges.

Sexual behavior, fertility desires and unmet need for family planning among home-based care clients and caregivers in Kenya

As antiretroviral treatment becomes more available, community home-based care (CHBC) clients may begin to resume normal daily activities including the resumption of sexual relationships. This study examines sexual behavior, contraceptive use, unmet need for family planning and attitudes toward pregnancy in the context of HIV among CHBC participants (clients and caregivers), many of whom are HIV-positive or at risk for HIV, of the COPHIA project in Kenya. The COPHIA project was implemented by Pathfinder International with support from USAID/Kenya. We interviewed 171 CHBC clients and 183 CHBC caregivers and conducted four focus groups with caregivers. Data were collected from randomly selected COPHIA-affiliated CHBC programs in Western Province and in Nairobi between September and November 2004. Forty-four percent of clients and 55% of caregivers had been sexually active in the past six months. The reproductive health needs of this population are complex; a significant percentage of study participants have an unmet need for family planning and some desire more children. A small proportion of study participants were pregnant during the time of the interview. The majority of those who use contraception reported relying solely on the male condom to prevent pregnancy. While vital for HIV prevention and easily distributed by CHBC programs, the male condom is not as effective as other methods in preventing pregnancy. Community home-based care program participants need counseling related to contraception, fertility desires and pregnancy. The promotion of dual method use is crucial to this population. Besides referring participants to family planning services, CHBC programs need to consider how and if they can meet the family planning and other reproductive health needs of their participants.