Exploring the Use of Photovoice in Understanding the Lived Experience of Neurological Conditions: A Scoping Review and Reflexive Thematic Analysis

Abstract

People living with neurological conditions such as multiple sclerosis, Parkinson’s disease and dementia may experience physical impairment, social disengagement, cognitive issues, and emotional disturbances. While qualitative research utilising in-depth interviews can access lived experience perspectives, the use of photovoice has the potential to obtain rich insights that include images and raise community awareness. The purpose of this scoping review was to document salient themes relating to the lived experience of neurological conditions as reported in photovoice studies. Following established scoping review methods of the Joanna Briggs Institute, a comprehensive search of five electronic databases, including MEDLINE, EMBASE, PSYCHINFO, CINAHL, and SCOPUS was conducted, as well as relevant journals and reference lists of retrieved studies. References were sorted, screened, and evaluated for inclusion using Endnote and Rayyan. The search results and the study inclusion process were reported in full in the final scoping review and presented in a PRISMA-ScR flow diagram. Reflexive thematic analysis was managed through NVivo to identify and synthesise findings, as well as identify themes. Following the removal of duplicates, the search identified 109 articles for title and abstract screening. The final dataset consisted of 25 studies published between 2007 and 2021. Two themes were identified: 1) ‘Losses and benefit finding’ focuses on the lived experience of people with neurological conditions including being pushed aside by society, a progressive decline of self and growing as a result of losses; 2) ‘Challenges of using photovoice in neurological research’ covers the confusion of terminology and implementation complexities and adaption. Societal change is needed for greater inclusion of people living with neurological conditions. Future studies using photovoice need to pay attention to methodological issues and include the recommended final step of the photovoice process to hold gallery exhibits to disseminate findings to raise awareness and initiate social change.