Abstract
BACKGROUND: The majority of deaths from chronic obstructive pulmonary disease (COPD) occur in low- and middle-income countries. Primary palliative care is commonly proposed as the best model to ensure access to appropriate care. However, the existing evidence on needs, models and outcomes comes from high-income settings. The purpose of the study was to determine the experiences of adults with COPD attending primary care, their informal caregivers and healthcare professionals to identify current care provided and gaps in this care in primary care settings in South Africa. METHODS: Cross-sectional qualitative interview study collected in-depth data from three stakeholder groups: adults with COPD attending one of five primary care settings, informal carers of patients and healthcare professionals. The cross-national research team developed a coding frame through inductive thematic analysis. RESULTS: The study participants comprised 22 COPD patients, 19 family caregivers and 22 healthcare professionals. Four main themes emerged. (1) Importance of communication to quality primary palliative care, with poor health literacy regarding the diagnosis and its progression. (2) Symptoms and concerns among patients and caregivers, with multidimensional impact on social participation, poverty and family mental health. (3) The role of health systems in promoting quality primary palliative care, with unreliable drug supply, the need for rapid access pathways during exacerbations and continuity of care from the acute sector through primary care into the home. (4) Patient preferences and agency, with patients favouring holistic assessment, self-management and adequate information and consultation to participate in decision-making. DISCUSSION: Palliative care health literacy for COPD patients, families and staff attending primary settings may ensure well-planned continuous care, symptom management and support care at home.