Use of Photovoice Methods in Research on Informal Caring: A Scoping Review of the Literature

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 carers^{1, 2, 3, 4, 5, 6}. 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 Australians^{12, 13, 14, 15}. 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 ^{17, 18}.

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, ^{21, 22, 23}. As a result, carers have higher levels of stress and depression and lower levels of overall well-being and physical health^{19, 21, 24, 25}.

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, ^{28, 29, 30, 31}. 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, ^{32, 33, 34}. 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 alone^{5, 41, 42}.

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.

The purpose of this study was to determine the current state of Photovoice methods in caring research. The review was guided by the following research question: How does Photovoice methodology contribute to our understanding of carers and caring?

At the onset of the scoping review, the authors defined the scope, parameters and implications of the research question. In some older Photovoice studies, the term “Photovoice” was used interchangeably with terms such as “photo novella” or “photonovel”³⁵. However, “photo novella” and “photonovel” are techniques that have been used to describe the process of using photographs or pictures to tell a story, or to teach language and literacy³⁵. As such, any study that used such terminology was not included in the pool of articles. Further, the authors’ defined carers as people who provide informal and unpaid care for a care recipient above the age of 18 years for health or aging related conditions. This was important to differentiate from other types of carers, such as parents providing care for their children. While wide definitions of search terms can expand the pool of included articles, such searches can also generate a large number of articles. Given the authors’ familiarity with the topic, the search terms were defined from the outset.

A set of articles that was already familiar to the authors was used as a starting point. To ensure an extensive search of all relevant articles, the authors consulted with a university research librarian who provided guidance for the scoping review methodology, forming Boolean search strings, and searching relevant databases. The scoping review included articles published since the inception of Photovoice by Wang and Burris in 1997, through to June 2019. Articles were curated from any geographic location internationally but were limited to those in the English language. An initial and unstructured search was performed using Google Scholar, producing a small but relevant set of articles (n=22). Next, the authors searched databases using search strings as suggested by the university librarian. The following search phrases and keywords were used: informal or unpaid or family or familial or parent or grandparent or spouse or spousal AND carer or carer or caregiv* AND Photovoice or participatory research or photo* method*. The asterisk indicates other possible endings for the root words. Most of the databases had a focus on health and included: Web of Science, Sociological Abstracts, Embase, CINAHL Complete, Factiva, and PyscInfo. Generally, the articles contained a Western bias with many originating from North America. The initial search yielded 418 articles; duplicates were then removed. The remaining abstracts were read and then searched through their reference lists to find other relevant articles. While it is recommended to hand search relevant journals, this was not done due to the large number of journals in health disciplines; it was deemed more productive to go through the reference list of articles that were already identified⁴³. Grey literature was included but yielded few results (n=2). A total of 61 articles were identified.

To filter relevant articles based on the research question, the authors determined inclusion and exclusion criteria. Articles were included in the sample if they addressed each of the following four criteria:1) publication between 1997 and June of 2019; 2) inclusion of Photovoice as a method for data collection; 3) explored the experiences of informal and unpaid carers, and; 4) the carer was caring for a care recipient above the age of 18 years suffering from age or health-related conditions. The authors chose to include studies that also included the following groups in the study sample: care recipients, other family members, and formal health care providers.

Exclusion criteria included: 1) no use of Photovoice as a method of research; 2) care was only provided by formal or paid carers, or did not distinguish between formal and informal carers; 3) the care recipients within the sample included children below 18 years of age. After applying the criteria, 25 articles remained that were then incorporated into the Mendeley database management system. The articles were printed and read in full by the authors.

During this stage, the authors simultaneously read the articles, applied the inclusion and exclusion criteria, and charted the articles’ themes and concepts. A chart, created using Microsoft Excel, was used to extract and organize the authors’ findings. Charting the data was done through sorting and charting information based on key terms and themes⁴⁶. The chart consisted of the following fields:

1. Authors and year;

2. Study sample characteristics (a. sample size; b. relationship to care receiver; c. condition/disease/other inclusion criteria of care recipient);

3. Methods (a. details of research process; b. other qualitative/quantitative methods used with Photovoice);

4. Findings and results, and;

5. Conclusions (implications for carers, researchers, policy makers).

After analyzing articles for relevance and content, the authors determined if the article matched the inclusion criteria. If the authors were unsure, they discussed and jointly decided the article concerned should be included.

Of the 25 articles that were included, 20 (80%) were peer-reviewed primary research articles. Three articles (12%) were dissertations and two articles (8%) were academic/government reports. The geographical distribution of studies included Canada (n=8), the United States (n=8), Australia (n=4), United Kingdom (n=3), Netherlands (n=1), New Zealand (n=1), and Portugal (n=1). The authors collaborated to compare and discuss common findings amongst the articles. The results of the thematic analysis are described in the following section.

The scoping review revealed four strengths of the Photovoice method in caring research: (a) a positive experience for carers; (b) facilitating communication of novel and abstract ideas, (c) participant cohesion, and (d) collaboration in research. Each of these strengths is discussed below as subthemes.

Previous studies have found that the Photovoice process allows researchers to engage fully with participants because of the presence and stimulus of visual cues (Hibberd, Keady, Reed & Lemmer, 2009; Young & Barrett, 2001). A few of the studies noted that carers found the research process enjoyable³⁴,⁴⁷, engaging³⁴, and in some cases, therapeutic⁴⁸. In Armstrong (2012), participants stated that the organization, choice, and discussion of photographs in the focus group was very helpful and therapeutic, as they were able to make sense of their experiences and relate to those in similar circumstances. Sethi (2014) noted that participants were excited and honoured to have their pictures displayed in an art exhibit as part of the knowledge translation phase of the project. Many of the participants felt empowered and emotional from the recognition that their photographs could be used to bring awareness and educate others³⁴.

Photovoice can allow for the ease of communication between researchers and participants. The Photovoice methodology is useful when collecting data from participants that have low literacy or are not fluent in the language of the researchers⁴⁷,⁴⁹. The facilitation of communication using Photovoice is also important when discussing abstract issues that may be hard to articulate, such as the emotionally distressing aspects of caring. This was noted by Wong et al. (2018), in which Photovoice was chosen due to the merits of its participatory approach in studying distressed and understudied groups.

Photovoice allows participants to be in control of the research process; this is especially important when discussing topics that may be difficult to explore. For instance, Horsfall, Leonard, Evans & Armitage (2010) identified and analyzed the social networks of older people and their carers, choosing Photovoice because social networks are often “invisible, not talked about, or are seen as an unremarkable part of people’s everyday lives”¹⁵(p9). Photovoice has proven to be an effective methodological process in gerontological research⁵⁰. Participant control of the research process is particularly critical when researchers delve into emotional and sensitive topics that could leave participants feeling vulnerable⁵¹.

Researchers in three studies noted that Photovoice enabled the emergence of overlooked, ignored, or under conceptualized aspects of the caring role⁹,²⁸,⁴¹. For example, Garner & Faucher (2014) used Photovoice to examine the challenges experienced and the supports employed by family carers. They identified the following novel challenges faced by carers: the management of equipment and various treatments, and problem-solving using trial and error⁹. Aubeeluck & Buchanan (2006) explored familial carers of Huntington Disease patients and noted that the themes of care, security and small pleasures were not readily identifiable in previous Huntington Disease caring literature.

Many of the articles analyzed (n=18) recruited samples of carers who were caring for recipients that were suffering from a common disease or condition. For instance, Guerra, Rodrigues, Demain, Figueiredo & Sousa (2012) studied family carers of dementia patients. Common characteristics amongst the study sample allowed for a greater sense of community and cohesion due to shared experiences, common needs, and challenges. In LaDonna (2014), some participants had not met other individuals outside of their families who had Myotonic Dystrophy Type 1. Participation in the research study allowed participants to meet, socialize and bond with other affected individuals, which may have contributed to participants’ assessment of the research process as “therapeutic”⁴⁷. A participant in Levy et al.’s (2019) study echoed this sentiment by describing the Photovoice experience as “healing”⁵²(p561). Similarly, in a study by Williamson et al. (2019), researchers noted that common lived experiences between participants allowed for the emergence of strong relationships. The researchers also noted that some of these relationships continued after the study, as participants and community members continued to collaborate in capacity building and awareness efforts⁵³.

Research suggests that carers are given little help from health care professionals when performing tasks and when dealing with the emotional demands of caring⁵⁴. However, caring does not need to be an isolating experience. While existing literature highlights negative aspects experienced by carers, strong social networks and collaboration amongst all groups concerned may better support carers; these groups include the care recipient (s), other family members, paid health care providers, and, volunteers¹⁵. Exposure to different perspectives during the research process can assist in better understanding the overall caring experience. In turn, this can help inform health care providers and other stakeholders who have a vested interest in supporting the needs of carers and care recipients. Thus, the needs of carers must be understood within the wider context of formal services, workplace supports, interventions, and policies⁵⁵. Much of the time family carers are unsure of when they need the available resources, or how to access and use these crucial services and supports⁵⁶,⁵⁷, which exemplifies the importance of developing and maintaining connections with other concerned groups, making caring more sustainable¹⁵.

This section addresses the challenges identified in the articles included in the review, including: (a) time and cost demands, (b) memory bias, and (c) photograph selection bias.

Photovoice projects can be costly; all the 25 articles chosen by the authors either provided or lent participants a camera. Additional costs include: using a digital camera as opposed to a disposable camera; film, and processing fees. In additional to financial costs, Photovoice research are very time consuming, which can be problematic given the time constraints already experienced by carers³⁴,³⁵. Time and energy are invested by participants through partaking in multiple meetings with the researcher, taking photographs, and follow-up interviews or focus groups³⁴,⁵³,⁵⁸. In Williamson et al. (2019), some participants required more support in using their cameras and maintaining communication with the project. These demands can cause participants to refuse to participate or leave the study. One exception to this finding was Aubeeluck & Buchanan’s (2006) study, which noted that Photovoice required only a small time commitment from participants. However, multiple meetings and interviews/focus groups may be necessary for researchers to build rapport and trust with the participants. In turn, this would allow participants to uncover deeper meanings in their photographs and experiences through greater reflection⁵⁹. To address time and energy demands, as well as the issue of attrition, researchers often provide compensation for participants to take part and complete the study. Compensation options include cash, gift cards, transportation money, or the digital camera that was used in the study⁸,⁹,⁶⁰.

Another challenge lies in the fact that Photovoice is a retrospective method, which leads to possible memory bias. During the interview or focus group phase, participants are asked to recall how they felt and what their experiences were like when they first took their photographs, opening up the possibility of recall bias²⁸. Some studies had significant time periods between the time when participants took pictures and met for discussion; these time periods may be as long as eight months⁶¹. While memory issues cannot be eliminated completely, researchers made efforts to mitigate these effects. For example, researchers provided participants with a notebook or diary to record details during the research process, or asked participants to craft accompanying narratives during the picture taking process³⁴,⁶¹.

Some of the carers’ experiences may contribute to them being identified as more memorable, and thus more photographed (Guerra, Rodrigues, Demain, Figueiredo, & Sousa, 2013). Participants may choose photographs that highlight positive aspects of caring worth memorializing in photographs. Guerra et al. (2012) also suggested that participants may have a cultural bias towards the photographs they choose to take. As with other qualitative and quantitative research methods, researchers must be mindful of participants providing responses that they believe the researchers are looking for⁶².

It should be noted that the challenges outlined above are not limited to research with carers; such challenges have been seen in Photovoice with other participant groups and in other fields of research.

The following section explores the methodological complexities of using Photovoice, as identified from the 25 articles. The following subthemes emerged: (a) methodological challenges, (b) alternate research approaches, and (c) ethical considerations.

Certain controlled, research-directed settings can create an authoritarian environment which may shift away from a participant-directed research process³⁹,⁵⁸. In such research, participants may perceive research questions being asked by the researchers as too complex. In van Hoof et al.’s (2016) Photovoice study on the sense of home in nursing homes, participants provided feedback that the abstract phenomenon of “sense of home” was difficult to comprehend and thus capture in a photograph. Complexity of the research process may affect study findings in other ways. In van Hoof et al., (2016), participants were told that the camera reel had 25 pictures but were free to choose the number of pictures they could take. Some participants gave feedback that taking 25 pictures was too much and thus decided to take random photographs in the end to fill up the camera reel⁶³. These challenges may be alleviated through open communication, discussion, and guidance from the researchers to ensure that participants fully understand the intricacies of the study.

Many of the studies in this review used modified aspects of the traditional Photovoice method, originated by Wang and Burris (1994). Although there are no set guidelines in undertaking a Photovoice study, the following steps are generally represented: an orientation meeting, focus groups and/or individual interviews, and a group forum to share findings. The rationale for altering the Photovoice method varied from researcher to researcher. For example, some studies opted to use individual interviews as opposed to focus groups to discuss participant photographs. In Sethi (2014) and Roger, Migliardi, & Mignone (2012), the researchers were concerned with the use of large focus groups as participants may not be comfortable discussing intimate issues in such a format. Other modifications include not involving participants in the data analysis stage even though Photovoice, as stated earlier, is based on the tenets of participatory research.

Our analysis found that some studies used other qualitative methods in conjunction with Photovoice during the data collection phase. The use of other methods in conjunction with Photovoice may offer a richer understanding of participants’ experiences. A scoping review of Photovoice literature in 2012 found that out of 191 studies, 55% used Photovoice as the sole method for data collection and analysis, while the remaining 45% used Photovoice in addition to other methodological approaches⁶⁴. Our scoping study found that 40% (n=10) of studies used Photovoice as the only research method, while 52% (n=13) of studies used Photovoice in conjunction with another type of qualitative method. Other qualitative methods used include content analysis, and individual interviews (as opposed to group discussion)⁶⁰. One study employed Photovoice together with quantitative methods.

It is of utmost importance for researchers ensure the participants’ confidentiality and anonymity. Ethical issues during the use of Photovoice include the following: invasion of privacy; issues in recruitment; participation; representation, and; advocacy. Methods taken by the researchers to ensure confidentiality included: obtaining ethical approval from research boards; discussing ethical issues that may arise during the photography process; signing consent forms; allowing participants to withdraw at any time point, and; providing pseudonyms. In one of the few studies to directly state ethics concerns that had arisen during the Photovoice studies, Sethi (2014) noted that researchers must be cautious of this innovative methodology; Photovoice may not be suitable for participants whose safety has been a concern due to political issues in their country, for example. In Sethi’s (2014) study, three participants who were refugees shared their stories but did not take photographs. While no studies explicitly mentioned that potential participants decided to not partake or to withdraw from the study due to ethical concerns, researchers must continue to be cognizant, sensitive, and accommodating of these issues.