Article Text
Abstract
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.
- palliative
- participatory methods
- qualitative research
- patient involvement
- cancer
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Footnotes
Contributors MJB compiled and drafted the original manuscript. JA, TM, SBS and LWN reviewed, contributed to and approved the final manuscript.
Competing interests None declared.
Patient consent None.
Ethics approval Ethical approval for the study was obtained from the College of Medicine Research Ethics committee (P.07/16/1999) and the Research Ethics Committee of Liverpool School of Tropical Medicine (16-045).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement None.