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Enhanced patient research participation: a Photovoice study in Blantyre Malawi.

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Bates, Jane, Ardrey, Jane ORCID: https://orcid.org/0000-0003-4558-5113, Mphwatiwa, Treza, Squire, Bertie ORCID: https://orcid.org/0000-0001-7173-9038 and Niessen, Louis ORCID: https://orcid.org/0000-0002-8639-5191 (2018) 'Enhanced patient research participation: a Photovoice study in Blantyre Malawi.'. BMJ Supportive & Palliative Care, Vol 8, pp. 171-174.

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Abstract

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. [Abstract copyright: © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.]

Item Type: Article
Subjects: W General Medicine. Health Professions > Health Services. Patients and Patient Advocacy > W 85 Patients. Attitude and compliance
W General Medicine. Health Professions > Health Services. Patients and Patient Advocacy > W 84.4 Quality of Health Care
W General Medicine. Health Professions > Health Services. Patients and Patient Advocacy > W 84 Health services. Delivery of health care
WA Public Health > WA 30 Socioeconomic factors in public health (General)
WB Practice of Medicine > Therapeutics > WB 325 Aftercare
WM Psychiatry > WM 20 Research (General)
Faculty: Department: Clinical Sciences & International Health > Clinical Sciences Department
Digital Object Identifer (DOI): https://doi.org/10.1136/bmjspcare-2017-001439
SWORD Depositor: JISC Pubrouter
Depositing User: Stacy Murtagh
Date Deposited: 22 Feb 2018 15:12
Last Modified: 30 Aug 2019 17:25
URI: https://archive.lstmed.ac.uk/id/eprint/8259

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