Context matters: a qualitative study of the practicalities and dilemmas of delivering integrated chronic care within primary and secondary care settings in a rural Malawian district.

BACKGROUND: With the increasing double burden of communicable and non-communicable diseases (NCDs) in sub-Saharan Africa, health systems require new approaches to organise and deliver services for patients requiring long-term care. There is increasing recognition of the need to integrate health services, with evidence supporting integration of HIV and NCD services through the reorganisation of health system inputs, across system levels. This study investigates current practices of delivering and implementing integrated care for chronically-ill patients in rural Malawi, focusing on the primary level. METHODS: A qualitative study on chronic care in Phalombe district conducted between April 2016 and May 2017, with a sub-analysis performed on the data following a document analysis to understand the policy context and how integration is conceptualised in Malawi; structured observations in five of the 15 district health facilities, selected purposively to represent different levels of care (primary and secondary), and ownership (private and public). Fifteen interviews with healthcare providers and managers, purposively selected from the above facilities. Meetings with five non-governmental organisations to study their projects and support towards chronic care in Phalombe. Data were analysed using a thematic approach and managed in NVivo. RESULTS: Our study found that, while policies supported integration of various disease-specific programmes at point of care, integration efforts on the ground were severely hampered by human and health resource challenges e.g. inadequate consultation rooms, erratic supplies especially for NCDs, and an overstretched health workforce. There were notable achievements, though most prominent at the secondary level e.g. the establishment of a combined NCD clinic, initiating NCD screening within HIV services, and initiatives for integrated information systems. CONCLUSION: In rural Malawi, major impediments to integrated care provision for chronically-ill patients include the frail state of primary healthcare services and sub-optimal NCD care at the lowest healthcare level. In pursuit of integrative strategies, opportunities lie in utilising and expanding community-based outreach strategies offering multi-disease screening and care with strong referral linkages; careful task delegation and role realignment among care teams supported with proper training and incentive mechanisms; and collaborative partnership between public and private sector actors to expand the resource-base and promoting cross-programme initiatives.

Patients experiences of self-management and strategies for dealing with chronic conditions in rural Malawi.

BACKGROUND: The high burden of chronic communicable diseases such as HIV/AIDS, and an escalating rise of non-communicable diseases (NCDs) in Malawi and other sub-Saharan African countries, calls for a shift in how health care services are designed and delivered. Patient-centred care and patient self-management are critical elements in chronic care, and are advocated as universal strategies. In sub-Saharan Africa, there is need for more evidence around the practice of patient self-management, and how to best support patients with chronic conditions in the African context. Our study explored self-management practices of patients with different chronic conditions, and their strategies to overcome care challenges in a resource-constrained setting in Malawi. METHODS: This is primarily a qualitative study, involving patients with different chronic conditions from one rural district in Malawi. Data are drawn from semi-structured questions of a survey with 129 patients (from the third of four-part data collection series), 14 in-depth interviews, and four focus-group discussions with patients (n = 31 respondents). A framework approach was used for qualitative analysis, and descriptive statistical analysis was performed on survey data. RESULTS: Patients demonstrated ability to self-manage their conditions, though this varied between conditions, and was influenced by individual and external factors. Factors included: 1) ability to acquire appropriate disease knowledge; 2) poverty level; 3) the presence of support from family caregivers and community-based support initiatives; 4) the nature of one's social relations; and 5) the ability to deal with stressors and stigma. NCD and HIV comorbid patients were more disadvantaged in their access to care, as they experienced frequent drug stock-outs and incurred additional costs when referred. These barriers contributed to delayed care, poorer treatment adherence, and likelihood of poorer treatment outcomes. Patients proved resourceful and made adjustments in the face of (multiple) care challenges. CONCLUSION: Our findings complement other research on self-management experiences in chronically ill patients with its analysis on factors and barriers that influence patient self-management capacity in a resource-constrained setting. We recommend expanding current peer-patient and support group initiatives to patients with NCDs, and further investments in the decentralisation of integrated health services to primary care level in Malawi.

From end of life to chronic care: the provision of community home-based care for HIV and the adaptation to new health care demands in Zambia.

Aim We present the evolution of primary-level HIV and AIDS services, shifting from end of life to chronic care, and draw attention to the opportunities and threats for the future of Zambia's nascent chronic care system. BACKGROUND: Although African governments struggled to provide primary health care services in the context of a global economic crisis, civil society organisations (CSO) started mobilising settlement residents to respond to another crisis: the HIV and AIDS pandemic. These initiatives actively engaged patients, families and settlement residents to provide home-based care to HIV-infected patients. After 30 years, CHBC programmes continue to be appropriate in the context of changing health care needs in the population. METHODS: The study took place in 2011 and 2012 and was part of a multi-country study. It used a mixed method approach involving semi-structured interviews, focus group discussions, structured interviews, service observations and a questionnaire survey. Findings Our research revealed long-standing presence of extensive mutual support amongst residents in many settlements, the invocation of cultural values that emphasise social relationships and organisation of people by CSO in care and support programmes. This laid the foundation for a locally conceived model of chronic care capable of addressing the new care demands arising from the country's changing burden of disease. However, this capacity has come under threat as the reduction in donor funding to community home-based care programmes and donor and government interventions, which have changed the nature of these programmes in the country. Zambia's health system risks losing valuable capacity for fulfilling its vision 'to bring health care as close to the family as possible' if government strategies do not acknowledge the need for transformational approaches to community participation and continuation of the brokering role by CSO in primary health care.

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

BACKGROUND: In 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. METHODS: The 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. RESULTS: The 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. CONCLUSIONS: Countries 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.

Practicalities and challenges in re-orienting the health system in Zambia for treating chronic conditions.

BACKGROUND: The rapid evolution in disease burdens in low- and middle income countries is forcing policy makers to re-orient their health system towards a system which has the capability to simultaneously address infectious and non-communicable diseases. This paper draws on two different but overlapping studies which examined how actors in the Zambian health system are re-directing their policies, strategies and service structures to include the provision of health care for people with chronic conditions. METHODS: Study methods in both studies included semi-structured interviews with government health officials at national level, and governmental and non-governmental health practitioners operating from community-, primary health care to hospital facility level. Focus group discussions were conducted with staff, stakeholders and caregivers of programmes providing care and support at community- and household levels. Study settings included urban and rural sites. RESULTS: A series of adaptations transformed the HIV programme from an emergency response into the first large chronic care programme in the country. There are clear indications that the Zambian government is intending to expand this reach to patients with non-communicable diseases. Challenges to do this effectively include a lack of proper NCD prevalence data for planning, a concentration of technology and skills to detect and treat NCDs at secondary and tertiary levels in the health system and limited interest by donor agencies to support this transition. CONCLUSION: The reorientation of Zambia's health system is in full swing and uses the foundation of a decentralised health system and presence of local models for HIV chronic care which actively involve community partners, patients and their families. There are early warning signs which could cause this transition to stall, one of which is the financial capability to resource this process.

A systematic review of the literature on self-management interventions and discussion of their potential relevance for people living with HIV in sub-Saharan Africa.

OBJECTIVE: This study systematically reviews the literature on self-management interventions provided by health care teams, community partners, patients and families and discusses the potential relevance of these interventions for people living with HIV in sub-Saharan Africa. METHODS: We searched major databases for literature published between 1995 and 2012. 52 studies were included in this review. RESULTS: The review found very few studies covering people living with HIV and generally inconclusive evidence to inform the development of chronic care policy and practice in sub-Saharan Africa. CONCLUSION: Chronic care models and self-management interventions for sub-Saharan Africa has not been a research priority. Furthermore, the results question the applicability of these models and interventions in sub-Saharan Africa. There is a need for studies to fill this gap in view of the rapidly increasing number of people needing chronic care services in Africa. PRACTICE IMPLICATIONS: The established practices for long-term support for HIV patients are still the most valid basis for promoting self-management. This will be the case until there are more studies which assess those practices and their effect on self-management outcomes and other studies which assess the utility and feasibility of applying chronic care models that have been developed in high-income countries.