Bates Maya Jane, Ardrey Jane, Mphwatiwa Treza, Squire Stephen Bertel, Niessen Louis Willem
Department of Family Medicine, College of Medicine, Blantyre, Malawi.
Department of Clinical Sciences, Liverpool School of Tropical Medicine, Liverpool, UK.
BMJ Support Palliat Care. 2018 Jun;8(2):171-174. doi: 10.1136/bmjspcare-2017-001439. Epub 2018 Feb 1.
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.
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.
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.
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.
患者参与姑息治疗研究是一个虽具挑战性但值得追求的目标。摄影声音法是一种行动研究方法，受影响的社区通过收集照片来记录和讨论其社区的优势与关切。与政策制定者的互动是另一个明确的目标。摄影声音法在与健康相关的研究中使用得越来越多，但在姑息治疗文献中尚未得到广泛描述。我们报告在马拉维布兰太尔使用摄影声音法的经验和教训，以鼓励其在研究和实践中更广泛地应用。
13名接受社区姑息治疗的共同研究者（6名患者和7名家属照顾者，平均年龄47岁）在4个月的时间里参加了9次为期半天的小组会议。共同研究者制作、挑选并分析照片。数据收集完成后，他们举办了一场宣传活动，包括摄影展，并邀请了媒体代表和社区领袖参加。
在规划阶段制定了确保共同研究者安全以及获得照片中人物同意的程序。共同研究者热情地参与了摄影声音法的过程，尽管身体虚弱和身体残疾（视力不佳）限制了一些老年人的参与。研究团队中纳入姑息治疗工作人员有助于在适当情况下促进开放对话和临床审查。
在这项摄影声音法研究中，接受姑息治疗的患者和家庭成员通过摄影、参与式分析和宣传活动参与了对家庭福祉的探索。通过适当的规划，摄影声音法可适用于一系列环境，以提高患者的参与度。
