The global population is ageing, with an estimated 901 million older people – representing 12.3% of the world’s population.¹ By 2050, projections suggest that 80% of older people will live in low- and middle-income countries (LMICs).² Although the definition of older age remains contested, many high-income countries conventionally define it primarily on the basis of chronological age, typically as 60 years or 65 years and above.³ However, for policy development and cross-cultural comparability in African research contexts, an age threshold of 50 years is commonly used to define older age.⁴ In sub-Saharan Africa (SSA), this demographic shift is accompanied by a growing prevalence of multimorbidity, defined as the co-existence of two or more chronic conditions in one individual.^5,6 While multimorbidity has long been recognised in primary care populations in high-income countries,⁷ it is now increasingly prevalent worldwide as populations age.⁸ The World Health Organization (WHO), through the Astana Declaration, highlights the central role of primary care in delivering integrated services and in creating ‘enabling and health-conducive’ environments for individuals and communities.⁹ Multimorbidity presents significant challenges for affected individuals, their families and already strained health systems.¹⁰ Yet in many LMICs, vertical (single-disease-focused) health programmes limit the delivery of integrated care for people with multimorbidity.^10,11

As populations age and non-communicable diseases (NCDs) increase, primary palliative care (PPC) is becoming more relevant.^12,13 Primary palliative care has been defined as the integrated and holistic management of disease and symptoms by primary health care workers for people in their local communities.¹⁴ It generally refers to the provision of basic palliative care by non-specialist healthcare professionals.¹⁵ In addition to healthcare providers, family members play a critical role in supporting individuals experiencing serious health-related suffering.^16,17,18,19 Their contribution as informal, non-specialist caregivers is particularly important for older people, who often depend on family members for daily care and support. In resource-limited settings, where specialist palliative care services and healthcare workforce capacity may be limited, family caregivers often help bridge gaps in care provision.²⁰ Caregivers are typically informal providers of physical, social, practical and emotional support.²¹

In LMICs, however, family caregivers face numerous socioeconomic challenges that make their role difficult and overwhelming.^22,23 The impact is often long-term, resulting in caregiver morbidity, reduced work capacity and diminished quality of life.⁶ Despite the increasing prevalence of multimorbidity,^10,22,24 limited evidence exists on the challenges faced by caregivers of older people in SSA as they provide PPC. Generating such evidence is critical for informing and strengthening holistic models of PPC delivery. Without addressing these challenges, the rising burden of multimorbidity in older populations across SSA and other LMICs may undermine progress towards universal health coverage (UHC). The WHO defines UHC as ensuring that:

While previous studies have documented the general burden experienced by family caregivers of people living with serious illnesses in LMICs, most have focused on single conditions such as advanced cancer or human immunodeficiency virus (HIV) or have examined caregiving within high-income settings.^17,19,22,23 Evidence on the experiences of family caregivers supporting older people living with multimorbidity within PPC in SSA remains scarce.^17,19 This study addresses this important knowledge gap by providing one of the first qualitative investigations of family caregiving among older people living with multimorbidity receiving PPC in Malawi. The findings generate context-specific evidence to inform the development of integrated, person-centred PPC models, caregiver support interventions and health policies for ageing populations in SSA.^26,27

This study demonstrates that family caregivers of older people living with multimorbidity experience interconnected financial, social and emotional challenges that extend beyond the provision of day-to-day care. These findings provide important evidence for the development of PPC services in Malawi by highlighting the central role of family caregivers in supporting older people as they navigate fragmented health and social care systems.

Evidence demonstrates the positive impact of caring for older people with multimorbidity in high-income settings,^22,35,36 where a range of support services, such as day care, pensions and disability grants, residential facilities, and mobility or disability equipment are available to meet PPC needs. In contrast, such services are often limited or absent in LMICs. Findings from this study revealed that primary palliative caregiving for an older person with multimorbidity in Malawi brings significant disruptions to family life, including financial strain and its consequences, such as household food insecurity, school dropout, and emotional and social distress. These findings align with previous studies showing that caregivers of patients with serious illnesses experience substantial burden.^17,23 The study also extends the palliative care literature in SSA, which has predominantly focused on HIV and cancer, by examining caregiving in the context of ageing and multimorbidity.³⁷ Such needs are likely to be amplified in the context of multimorbidity, where the absence of integrated or dedicated health care pathways necessitates multiple hospital visits particularly in settings like ours, where primary health centres often lack both the expertise and the essential medicines and supplies to manage multimorbidity effectively.³⁸

Viewed through the illness-specific work domain of the Lines of Work framework,^39,40 financial hardship emerged as a consequence of fragmented chronic care pathways rather than isolated household poverty. Long travel distances to facilities providing chronic disease services, together with frequent medicine stock-outs requiring out-of-pocket purchases, substantially increased the workload and economic burden borne by families.⁴¹ Similar financial pressures have been reported among caregivers of patients with advanced cancer,^10,19,42 suggesting that inadequate access to affordable care is a common mechanism through which serious illness generates caregiver burden. These findings reinforce calls for decentralised chronic care, strengthened medicine supply systems and social protection measures to reduce the financial consequences of caregiving.³⁸

Within the everyday work domain,³⁹ caregiving disrupted households’ capacity to maintain livelihoods. Reduced participation in farming and income-generating activities contributed to food insecurity, illustrating how illness-related demands extend beyond health to affect household resilience.⁴³ These findings support evidence from other LMICs that caregiving and poverty are mutually reinforcing,⁴⁴ and suggest that palliative care policies should be complemented by social protection interventions that enable families to sustain livelihoods while providing care.⁴⁵

Emotional work³⁹ was strongly gendered, with women assuming most caregiving responsibilities, reflecting broader social norms documented across LMICs. The cumulative demands of illness-specific and everyday work appeared to intensify emotional strain, reinforcing the multidimensional nature of caregiver burden.⁴⁶ These findings support previous recommendations that caregiver training and psychosocial support should be integrated into PPC,^47,48 while policies should also promote greater male participation in caregiving.⁴⁹

Similarly, studies have shown that the practice of PCC can reduce the burden on caregivers of people with serious illnesses.^50,51 Evidence also highlights the value of integrated care for people with multimorbidity, as it better accommodates the needs of both patients and caregivers.^52,53,54 The theory and evidence underpinning models of person-centred care in serious illness have largely come from Western high-income countries.⁵⁵ This study adds to the emerging evidence from the global majority.⁵⁶ Furthermore, the novel data in our study may inform new models of PPC, which currently lack a sound evidence base. Development of plausible models requires adherence to established consensus definitions of PPC in Africa and articulation of logic models to provide clarity in context and mechanisms.³⁰

Further research is needed to design and evaluate effective interventions to care for older people with multimorbidity, with a focus on improving physical accessibility, strengthening support for HBC and advancing integrated, person-centred approaches. By addressing the complex needs of this population, such interventions have the potential to enhance quality of care while alleviating the challenge on both patients and their caregivers.

Family caregivers are indispensable providers of PPC for older people living with multimorbidity in Malawi, but they face considerable financial, physical, psychosocial and spiritual challenges that compromise both caregiver and patient well-being.

These findings suggest that effective PPC for older people living with multimorbidity requires interventions that extend beyond symptom management to address the practical and emotional realities of family caregiving and recognise caregivers as partners in care. Integrated, person-centred models of care, supported by stronger primary health care systems and social protection mechanisms, have the potential to improve outcomes for both patients and caregivers. Routine caregiver assessment should be incorporated into PPC consultations to identify caregiver burden and unmet needs, with timely referral for psychosocial support where appropriate. Health systems should strengthen decentralised community-based PPC services, improve the availability of essential medicines at primary health care facilities and expand integrated PCC services closer to people’s homes to reduce travel costs and the caregiving burden. Our work informs policymakers to consider social protection measures, caregiver education and community support programmes that strengthen family resilience and sustain caregiving. The data provide novel evidence from Malawi to inform policy, service delivery and future intervention development for older people living with multimorbidity and their family caregivers across SSA.