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Use Of Photovoice Methods In Research On Informal Caring: A Scoping Review Of The Literature

Ilagan Chloe ¹ Akbari Zahra ¹ Sethi Bharati ² Williams Allison ¹

1 School of Earth, Environment & Society, McMaster University

2 School of Social Work, King s University College, University of Western Ontario

Abstract

The purpose of this scoping review was to examine the use of Photovoice in caring research. The review assessed the existing literature using the Arksey and O Malley scoping review methodology. Database searches of relevant literature published worldwide between 1997-2019 yielded 25 articles in the English language that were included in this review. The authors summarized thematic findings. Three themes emerged from data analysis: 1) strengths of using Photovoice; 2) challenges of using Photovoice, and; 3) methodological complexities in Photovoice studies. The small number of studies included in the review (n=25) indicate the limited use of Photovoice in caring research, reflecting missed opportunities for action-oriented research. The scoping review recommends ways that researchers can better address the needs of carers using Photovoice, particularly as a tool for knowledge translation, advocacy, and empowerment.

Author Contributions

Received Sep 23, 2020 Accepted Oct 01, 2020 Published Oct 07, 2020

Copyright© 2020 Ilagan Chloe, et al.
License
This work is licensed under a Creative Commons Attribution 4.0 International License. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Competing interests

The authors have declared that no competing interests exist.

Funding Interests:

Citation:

Ilagan Chloe, Akbari Zahra, Sethi Bharati, Williams Allison et al. (2020) Use Of Photovoice Methods In Research On Informal Caring: A Scoping Review Of The Literature Journal of Human Health Research. - 1(3):1-14

DOI 10.14302/issn.2576-9383.jhhr-20-3573

Introduction

Introduction Background

The reconstruction of the health care system towards community and home care has shifted the responsibilities for care from the public system onto unpaid, informal and familial carers123456. As health care budgets in many developed nations are increasingly strained, attempts to minimize the costs of institutionalized care have led health care systems to view families as a substitute for formal services, resulting in an increased reliance on families to provide care7,8. As such, the need for carers is expected to increase9. By 2050, the number of seniors aged 60 years or older is expected to double across the globe due to increased life expectancy, as well as healthcare and technological improvements10. Simultaneously, the impacts of trends such as the increase of females in the labour force, a decrease in family sizes, and an aging workforce further strain the demand on carers11, the majority whom are women given the gendered nature of care. In 2012, it was estimated that 28% of the Canadian population were caring for a family member or a friend with a disability or chronic health condition, compared to 12% of the British population, 25–30% of the American population, and 12% of Australians12131415. Consequently, carers are often touted as the backbone of the health care delivery system16. Benefits of unpaid and familial provision of care include a reduction in health care costs, in terms of health services and institutionalization, while allowing the care recipient to remain at home to maintain a better quality of life 1718.

While governments may benefit from reduced costs, the costs for carers who provide care at home increases. Specifically, negative consequences arise from the multiple roles and responsibilities expected of carers5,19,20,21. Oftentimes, carers are not ready for the necessary care tasks and expectations, which can include providing personal care, transportation, house maintenance, financial assistance, emotional support, and scheduling22. Caring has shown negative impacts on mental and physical health, personal finances, time available for other activities, and labour force participation, as many carers balance paid employment in addition to care responsibilities14, 212223. As a result, carers have higher levels of stress and depression and lower levels of overall well-being and physical health19212425.

Photovoice Research Method

Many of the studies examining carers employ quantitative methods. While quantitative studies provide valuable information, such as the number of carers, types of tasks, and the measure or degree of burden, such studies fail to encapsulate the unique and personal experiences of caring9. A growing body of research studies use qualitative methods to address this knowledge gap5,26,27. In recent years, the qualitative research method named Photovoice has seen an increased use in the study of carers9, 28293031. Understanding what is known about the use of the Photovoice method in existing caring literature is the purpose of this article.

Photovoice is an image-based research method that seeks to examine and understand issues through the everyday experiences of people whose voices are often unheard, forgotten or silenced5,29, 323334. As outlined by Wang and Burris (1997), Photovoice has three main goals:

1. To enable people to record and reflect their community’s strengths and concerns;

2. To promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and;

3. To reach policymakers.

Using a camera, participants record visual evidence of their experiences which allows them to share their unique knowledge and expertise. Photovoice involves participants going out into their community to take pictures that will be used to guide further discussion with the researchers, and in so doing, identifying, representing, and enhancing the visibility of issues within their communities35. Participants function as co-researchers who direct the identification of themes relating to the research question35. As a result, this research method differs from other qualitative methods in that “Photovoice is able to ‘voice’ and represent individual perceptions” of participants,”36(p1). Given participants’ power to voice their experiences is an essential element of empowerment36.

Since its development by Wang and Burris in the mid 1990s, Photovoice has been used in a wide array of research areas to gather information on community strengths and challenges37. Originally used with Chinese village women35, Photovoice research ranges from understanding issues related to mental health38, learning difficulties39, and experiences of cancer survivors40. While the method is used in a wide array of issues and projects, current literature suggests it is underused for caring research. There are numerous benefits of using the method, given the intricacies of care work, which is not only physical, but emotional, social and oftentimes compassionate. Photographs can assist to visually present meanings, ideas and experiences that are not easily communicated through words alone54142.

This scoping review will synthesize existing literature to analyze the utility and limitations of Photovoice in examining the caring experience and will likely be of interest to following groups: researchers who have performed Photovoice studies; carers who have participated in these studies, and; policy makers who have the potential to respond to issues found as the result of research. A total of 25 articles written in the English language were included in this review, comprised of peer-reviewed journal articles, government reports and dissertations. All articles examined were published between 1997 and June of 2019.

Discussion

Some studies in this review fell short in disseminating research findings through knowledge mobilization and knowledge translation strategies. In particular, only 60% (n=15) of articles included some photographs from the data collection phase in the journal article815313441474861626566676869. Inclusion of the photos, alongside the narratives of participants within the published research papers, can operate as a form of disseminating research findings in the research community. However, it is entirely possible that the exclusion of photographs was set by pre-determined requirements of the academic journals concerned70. As researchers continue to diversify methods, journals need to explore the inclusion of photographs.

As outlined by Wang and Burris, one of the goals of Photovoice is to reach policymakers71. There lies an inherent assumption that Photovoice can enable change in the community through decision-making and policies. Photovoice studies can be an effective advocacy tool to inform stakeholders of the caring experience. In Levy et al. (2019), participants noted the opportunity to teach the community as important 52(p561). However, few studies intentionally addressed that goal. Of the 25 articles reviewed, three studies included art exhibits, where community stakeholders such as health providers, carer organizations, higher education institutions, and policy makers were invited to attend95272. Four studies stated that art exhibits will be planned/are in the planning process15293473. An important component of using Photovoice is what is done after the pictures have been taken and the discussion has occurred 72(p632). Photographs can facilitate discussion and dialogue amongst others who view the pictures72. The presentation of photographs to a wider audience can help educate and inform others, such as policy makers who have the potential to make change and provide support for carers. The absence of next steps from a number of the articles limits the potential for such research to reach the community at large. The gap between research findings and opportunities for community change may also be narrowed through collaboration between participants and researchers, ideally at the beginning of the research process, to discuss tailored services, programs, and policy changes that support carer needs68. Other studies have noted that this requires relationship building prior to and during the Photovoice process as well as the political desire to bring about change in the community74.

Although one of the goals of Photovoice is to empower participants, information on evaluating and achieving this goal may be lacking. Few studies mention or allude to ways in which partaking in Photovoice research studies can be advantageous and beneficial for participants. In Sethi (2014), participants had a sense of pride and ownership in the photographs they had taken, such that some were excited to show the researcher their photographs. Given that participants in that study may feel a sense of empowerment after completing the project, future research studies can further explore how Photovoice may be used as an empowerment tool for carers. Some studies mention that carers are better able to make sense of their caring situation414852. Aubeeluck & Buchanan (2006) and Levy et. al (2019) noted that carers were able to record and reflect the positive aspects of their lives and the problems that they experienced after participation in the project. However, there is a lack of research on whether involvement in Photovoice projects can lead to tangible or measurable changes in the lives of carers, such as improved problem solving and dealing with challenges while caring.

There are a wide range of new research directions in the area of caring that have yet to be tapped when using Photovoice methodology; three will be discussed here. First, immigrants are providing transnational care across international borders in increasing numbers given current trends in globalization and technological advances. Sethi (2014) found that study participants rely on their families abroad for social support through computer and phone message applications, phone and video calls. More research can be done to explore transnational caring and the ties that immigrants have to care recipients in other countries. Photovoice can be used to understand such unique experiences, which can be useful in policy making to help support these carers. Second, exploring the negotiations that double-duty carers have to make when transitioning between their paid caring work, whether in an institutional setting or in the community, and their unpaid/ informal care work, whether in an institutional setting, in the community, or at home. Third, intersectionality theory can be integrated in Photovoice research on carers. Intersectionality theory suggests that the interactions between various social categories, such as race, class, and gender shapes an individual s personal experiences34,75. Other Photovoice studies have acknowledged that such contextual factors play a significant role in participants lived realities, using Photovoice to allow participants to portray their lives through their own eyes and in their own way75. The lens of intersectionality can be used in future research studies to explore how carers experiences are affected by these overlapping axes of diversity.

Journal of Human Health Research