Family caregiving challenges in primary palliative care for older people with multimorbidity in Malawi – A cross-sectional qualitative study

Abstract

Background: Global population ageing has led to a rise in older people living with multimorbidity. In low-resource settings, they rely heavily on family members for primary palliative care (PPC) and daily support, placing substantial demands on caregivers.
Aim: To explore the challenges experienced by family members providing PPC to older people living with multimorbidity in Malawi.
Setting: Peri-urban district of Malawi at two primary health care facilities and within participants’ homes.
Methods: A cross-sectional qualitative design was employed between January 2021 and March 2021. Fifteen caregivers were purposively selected. In-depth interviews were conducted either at the health facility or in participants’ homes, according to their preference. Data were analysed inductively to generate themes, supported by NVivo 12 Pro software.
Results: Four overarching themes and nine sub-themes emerged: (1) Complex decision-making dynamics (family hierarchy and interdependence); (2) Demanding caregiving responsibilities (patient-related care and household duties); (3) Consequences for caregiver well-being (psychosocial and spiritual impacts); (4) Expressed needs to support caregiving roles (person-centred care, strengthened community-based primary health care services, and consistent availability of essential medicines).
Conclusion: Family caregivers are an integral component of PPC in providing PPC for older people living with multimorbidity. Interventions should address the practical and emotional challenges they encounter in their caregiving roles.
Contribution: This study provides context-specific evidence on the multidimensional challenges faced by family caregivers of older people with multimorbidity in Malawi and underscores the need to strengthen community-based primary care and integrate caregiver support into palliative care services in similar low-resource settings.