Household concepts of wellbeing and the contribution of palliative care in the context of advanced cancer: A Photovoice study from Blantyre, Malawi.

INTRODUCTION: Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for 'healthy life and wellbeing for all at all ages', though there is a limited understanding of wellbeing particularly from patients' and families' perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is 'largely ignored' on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi. METHODS: Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held. RESULTS: Wellbeing was described as seeing improvements in the patients' function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as 'courage givers' supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered 'prematurely dead' in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination. CONCLUSIONS: To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.

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.