Primary health care challenges: insights from older people with multimorbidity in Malawi - a qualitative study.

BACKGROUND: The global population is undergoing a significant surge in aging leading to increased susceptibility to various forms of progressive illnesses. This phenomenon significantly impacts both individual health and healthcare systems. Low and Middle Income Countries face particular challenges, as their Primary Health Care (PHC) settings often lack the necessary human and material resources to effectively address the escalating healthcare demands of the older people. This study set out to explore the experiences of older people living with progressive multimorbidity in accessing PHC services in Malawi. METHODS: Between July 2022 and January 2023, a total of sixty in-depth interviews were conducted with dyads of individuals aged ≥ 50 years and their caregivers, and twelve healthcare workers in three public hospitals across Malawi's three administrative regions. The study employed a stratified selection of sites, ensuring representation from rural, peri-urban, and urban settings, allowing for a comprehensive comparison of diverse perspectives. Guided by the Andersen-Newman theoretical framework, the study assessed the barriers, facilitators, and need factors influencing PHC service access and utilization by the older people. RESULTS: Three themes, consistent across all sites emerged, encompassing barriers, facilitators, and need factors respectively. The themes include: (1) clinic environment: inconvenient clinic setup, reliable PHC services and research on diabetic foods; (2) geographical factors: available means of transportation, bad road conditions, lack of comprehensive PHC services at local health facility and need for community approaches; and (3) social and personal factors: encompassing use of alternative medicine, perceived health care benefit and support with startup capital for small-scale businesses. CONCLUSION: This research highlights the impact of various factors on older people's access to and use of PHC services. A comprehensive understanding of the barriers, facilitators, and specific needs of older people is essential for developing tailored services that effectively address their unique challenges and preferences. The study underscores the necessity of community-based approaches to improve PHC access for this demographic. Engaging multiple stakeholders is important to tackle the diverse challenges, enhance PHC services at all levels, and facilitate access for older people living with progressive multimorbidity.

Study protocol for a single-centre observational study of household wellbeing and poverty status following a diagnosis of advanced cancer in Blantyre, Malawi - 'Safeguarding the Family' study.

Background: Many households in low-and-middle income countries face the additional burden of crippling out-of-pocket expenditure when faced with a diagnosis of life-limiting illness. Available evidence suggests that receipt of palliative care supports cost-savings for cancer-affected households. This study will explore the relationship between receipt of palliative care, total household out-of-pocket expenditure on health and wellbeing following a first-time diagnosis of advanced cancer at Queen Elizabeth Central Hospital in Blantyre, Malawi. Protocol: Patients and their primary family caregivers will be recruited at the time of cancer diagnosis.  Data on healthcare utilisation, related costs, coping strategies and wellbeing will be gathered using new and existing questionnaires (the Patient-and-Carer Cancer Cost Survey, EQ-5D-3L and the Integrated Palliative Care Outcome Score). Surveys will be repeated at one, three and six months after diagnosis. In the event of the patient's death, a brief five-item questionnaire on funeral costs will be administered to caregivers not less than two weeks following the date of death. Descriptive and Poisson regression analyses will assess the relationship between exposure to palliative care and total household expenditure from baseline to six months. A sample size of 138 households has been calculated in order to detect a medium effect (as determined by Cohen's f 2=0.15) of receipt of palliative care in a regression model for change in total household out-of-pocket expenditure as a proportion of annual household income. Ethics and dissemination: The study has received ethical approval. Results will be reported using STROBE guidelines and disseminated through scientific meetings, open access publications and a national stakeholder meeting.  Conclusions: This study will provide data on expenditure for healthcare by households affected by advanced cancer in Malawi. We also explore whether receipt of palliative care is associated with a reduction in out-of-pocket expenditure at household level.

Palliative care within universal health coverage: the Malawi Patient-and-Carer Cancer Cost Survey.

OBJECTIVE: Evidence of the role of palliative care to reduce financial hardship and to support wellbeing in low/middle-income countries (LMIC) is growing, though standardised tools to capture relevant economic data are limited. We describe the development of the Patient-and-Carer Cancer Cost Survey (PaCCCt survey) which can be used to gather data on healthcare use and out-of-pocket expenditure (OOPE) in households affected by cancer in LMIC. METHODS: To identify relevant content qualitative data were gathered using Photovoice to detail concepts of wellbeing and cost areas of importance in households receiving palliative care in Blantyre, Malawi. Existing approaches and tools used to capture OOPE were mapped through a review of the literature. The WHO tuberculosis patient cost survey was chosen for adaptation. Face and content validity of a zero-draft of the PaCCCt survey were developed through review by healthcare professionals and a national stakeholder group. The final survey was translated into local language (Chichewa) and piloted. RESULTS: The PaCCCt survey is a tablet-based, third-party administered survey recording healthcare service utilisation and related direct and indirect costs. Coping strategies (loans and dissaving and so on), funeral costs and wellbeing at household level are included. Completion time is <30 min. CONCLUSION: The PaCCCt survey can be used as part of economic evaluations in populations in need of palliative care in LMIC. Such evidence can support calls for the inclusion of palliative care within Universal Health Coverage which requires end-user protection from financial hardship.

Enhanced patient research participation: a Photovoice study in Blantyre Malawi.

OBJECTIVES: Patient involvement in palliative care research is a desirable if challenging goal. Photovoice is an action research method in which affected communities gather photographs to document and discuss their communities' strengths and concerns. Engagement with policymakers is a separately stated goal. Photovoice is increasingly used in health-related research but has not been widely described in the palliative care literature. We report on experiences and lessons learnt using Photovoice in Blantyre, Malawi to encourage its wider use in research and practice. METHODS: Thirteen co-researchers (six patients and seven household carers, mean age 47 years) receiving community-based palliative care, attended nine half-day group sessions over a 4-month period. Co-researchers produced, selected and analysed photographs. On completion of data collection, they conducted an advocacy event, including a photographic exhibition, to which media representatives and community leaders were invited. RESULTS: Procedures to ensure safety of co-researchers and to obtain consent of individuals identified in the photographs were developed during the planning phase. Co-researchers engaged with the Photovoice process with enthusiasm, although frailty and physical disability (poor sight) limited participation for some older adults. Inclusion of palliative care staff within the research team helped to facilitate open dialogue and clinical review where appropriate. CONCLUSIONS: In this Photovoice study, patients and family members receiving palliative care engaged in an exploration of household well-being using photography, participatory analysis and an advocacy event. With appropriate planning, Photovoice can be adapted to a range of settings to enhance patient participation.