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.

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study

“…Three participants dropped out of the study, possibly reflecting these demands. Our sample size ( N = 14) exceeds the typical sample size for this methodology [ 18 ] and was varied in terms of disease duration (<1 year to >13 years), but has limitations in terms of sociodemographic diversity. All were White, English speaking and educated, with over half retired/medically retired.…”

“…The typical sample size for photovoice methodology is 7–10 participants [ 18 ]; we therefore determined that a sample size of 10–12 participants would be sufficient. The research team regularly reviewed and discussed the data to determine whether data saturation had been met.…”

“…Photovoice is a qualitative research method increasingly used in health research to understand illness experiences from the patient's perspective [ 18 ]. The approach involves participants taking photographs that illustrate their circumstances relating to a research topic.…”

Determining cancer stage at diagnosis in population-based cancer registries: A rapid scoping review

“…The review was undertaken following the Joanna-Briggs Institute methodology for scoping reviews (18)(19)(20). The Cochrane Database for Systematic Reviews (21) and the Joanna Briggs Institute (JBI) Evidence-based Practice Database (22) were searched and no existing reviews in this area were identified.…”

Using large language models to generate silicon samples in consumer and marketing research: Challenges, opportunities, and guidelines

“…This endeavor is to identify areas of consumer and marketing research in which silicon samples generally align well with human samples and/or with actual behavior (vs. those in which they do not)—ultimately aiming to substitute or annihilate human benchmarks for certain types of research. As Hamilton et al (2023) suggest, because LLMs are language‐based, they may also be useful for discovering new insights in qualitative data sets rather than just mimicking the themes identified by humans. Similarly, in theory‐driven research, silicon samples may be used first to mimic human behavior in line with theoretical predictions.…”