Abstract

People with intellectual disabilities have few opportunities to actively participate in research affecting programs and policies. Employment of participatory action research has been recommended. Although use of this approach with people who have intellectual disabilities is growing, articles on specific participatory research methods are rare. Photovoice is a participatory method often used with underrepresented groups and is effective for engaging people with intellectual disabilities in research or program development. A literature review is presented for use with this population as is a description of Photovoice as a participatory research tool for engaging people with intellectual disabilities. An example of a participatory study among people with intellectual disabilities is provided. Benefits and challenges of employing Photovoice with this population are discussed.

Historically, people with intellectual disabilities have had few opportunities to participate in decisions that affect their lives. In research, they were often employed as subjects rather than engaged as research participants (Horwitz, Kerker, Owens, & Zigler, 2000; Rioux, 1997). The conception of the social model of disability enabled people with disabilities to place the responsibility for their limitations and barriers to inclusion in research on society and academia (Tregaskis, 2002). It enabled them to challenge oppressive research methods and policies that do not include their perspective or experiences (Goodley & Moore, 2000; Goodley & Tregaskis, 2006). The model also led to the acknowledgement that data from research are contextually based on the time and place of the research and researcher subjectivity (Goodley, 1999).

These changes led to emancipatory approaches to disability research, such as social action, action research, and participatory action research. These approaches have been employed with stakeholders of policies and programs for people with intellectual disabilities, such as educators, service providers, administrators, caregivers, and family members of people with disabilities (Beamish & Bryer, 1999; Dymond, 2001; Goodley & Moore, 2000; Goodley & Tregaskis, 2006; Markey, Santelli, Turnbull, n.d.; Robison & Krauss, 2003; Poston, Turnbull, Park, Mannan, Marquis, & Wang, 2003; Singer et al., 1999; Tregaskis, 2004). There was also an increase in the involvement of people with physical and sensory disabilities in research through the use of participatory action research or other emancipatory approaches (Balcazar, Keys, & Suarez-Balcazar, 2001; Kuh, Lawrence, Tripp, & Creber, 1988; Taylor, 1999). Although involvement of stakeholders and people with disabilities in research increased, it is still relatively rare to find literature in which specific methods for engaging people with intellectual disabilities in participatory research is described.

Focus groups, interviews, and combinations of these methods have been used to engage people with intellectual disabilities in the research process. In this paper my goal was to expand the literature by adding to the approaches that can be used with this population in research, namely, Photovoice methodology (Wang & Burris 1997) as a participatory action research tool that can be effective for engaging them in the research process. I describe the Photovoice method in the context of an example from a study conducted with Latinos who had intellectual disabilities, a group that, to my knowledge, has not previously been involved in the research process.

Photovoice method is unique in that it uses photography to actively engage this population in the research process. Photography has previously been used for engagement and self-empowerment among people with disabilities in the field of art and design (Stanley, 2003), but Photovoice as a method to engage people with intellectual disabilities in research is not common.

Review of Research Engaging People With Disabilities

The characteristics of a participatory action research approach with participants who have intellectual disabilities are that (a) participants and researchers are equally engaged in the research process, (b) there is co-learning, (c) participants are empowered through the research process, (d) participants' capacity to participate in decisions that influence their lives increases, and (e) there is a balance between the research being conducted and action taken to address the problems being examined (Israel, Shulz, Parker, & Becker, 1998).

Although literature on participatory action research among people with disabilities is common, peer-reviewed literature discussing the use of participatory action research with people who have cognitive or intellectual disabilities is growing, but still not widespread. Furthermore, to my knowledge, discussions of specific research methods for engaging people with intellectual disabilities in participatory research are relatively rare in the context of intellectual disability research. In one of the earlier papers on the use of this approach, Sample (1996) described a study on the transition into community life of people with developmental disabilities. This project engaged family members, service providers, and people with developmental disabilities in the development and implementation of evaluation research on recreation/leisure and employment settings as well as changes in quality of life among people with developmental disabilities using both qualitative and quantitative methods (Sample, 1996). In a more recent study, Ward and Trigler (2001) engaged self-advocates from People First in the questionnaire development, administration, data analysis, and interpretation phase of research among people with developmental disabilities to identify new research questions and new perspectives. The authors discussed issues related to engaging self-advocates in the process and made recommendations, which included orienting and teaching stakeholders, clarifying roles, negotiating time commitments early on, and starting with a narrow scope for the project. Poston et al. (2003) used participatory research to explore family quality of life among families with children who have disabilities. They conducted a focus group with 8 individuals with disabilities as well as focus groups and interviews with family members, service providers, administrators, and families of children without disabilities to obtain multiple perspectives on family quality of life.

Researchers in the field of special education have conducted participatory action research among people with learning or cognitive disabilities. Ruef (2002) conducted focus groups and interviews with individuals who had cognitive disabilities and/or autism and explored their perceptions of barriers and solutions to dealing with problem behavior. The author also obtained suggestions on how to improve their quality of life, including reducing problem behavior. Silver-Pacuilla and colleagues (2004) used a participatory action research approach to identify literacy needs of women with disabilities who participated in an adult education program. Their project began with two focus groups and then continued with 2-hour monthly dialogue sessions on women, disability, and literacy.

Although investigators who have employed participatory action research among people with intellectual or developmental disabilities have used various methods, such as focus groups and interviews, to my knowledge only two have employed Photovoice methodology. Booth and Booth (2003) employed Photovoice with mothers who had learning disabilities. The mothers took photographs to document their lives and challenge discriminatory views. This Photovoice project was conducted among women who were in a support group to improve their confidence and enable them to develop their own sense of identity. The study is an important contribution to the participatory action research literature, but the authors focused on the results of the Photovoice project rather than the implications of Photovoice as a method for actively involving people with disabilities in research. In the most recent project, Jurkowski, Hammel, and Rivera (in press) used Photovoice as a participatory action research tool to engage Latinos with intellectual disabilities in health promotion research. The authors' purpose was to guide the development of health promotion programs that met the needs and interests of people with intellectual disabilities and the agency that served them. The authors mainly focused on the results of the study. Both articles contribute to the literature on participatory action research among people with disabilities, but neither focused discussion on Photovoice as a method that empowers people with intellectual disabilities in the research process.

Description and Theoretical Foundations of Photovoice

Photovoice was developed and applied by Wang and Burris (1994) during a project with rural women in the Yunnan province of China (Wang & Burris, 1997). It is “a process by which people identify, represent, and enhance their community through a specific photographic technique” (Wang & Burris, 1997, p. 369). Photovoice methodology is a participatory action research tool that provides participants with an avenue for expressing themselves through this photographic technique. The goals of researchers using this methodology are

To enable the recording of and reflecting on problems of a group or community, promote critical discussion of these problems, generate collective knowledge of the problems through discussion of the photographs, and finally to take action to change the problems by reaching out to those who influence or make policy. (Wang, 2005)

Photovoice can facilitate the expression and documentation of the views and needs of people with intellectual disabilities. By using this method in research to empower these individuals, researchers obtain data that are rooted in the needs and interests of the people who are recipients of the research, which ultimately influences policy or programming. Participatory research methods such as Photovoice emphasize the unique and valuable insider perspective on the lives of participants. This perspective is important for tailoring policy and programs to improve the health and well-being of people with intellectual disabilities. This method can also be used to explore community assets and to promote or facilitate using these assets to improve the well-being of people with intellectual disabilities (Wang, 2005).

Photovoice has its roots in Freire's (1973) critical education approach and feminist theory. His approach stresses the importance of people identifying important issues in their lives or community, critically reflecting on them by using dialogue to identify common themes, then examining the root causes of these problems and enabling them to prioritize their issues and discuss solutions to these issues (Freire, 1973; Wang & Burris, 1997). Freire provided visual images to people to facilitate reflection on their reality and to encourage discussion of the social and political connections. Photovoice was built on the foundation provided by Friere, but instead it had people create their own visual images by taking their own pictures of their reality to be used for reflection and action (Wang & Burris, 1997).

Feminist theorists critique the dominant group's representation of a group that lacks power. As applied to Photovoice, these theorists recognize the importance of the subjective experiences of participants who lack power and acknowledges inequality (Wang & Burris, 1997). For all of Freire's contributions, his language and methods were limited in that they suggested a male interpretation of the reality. Freire's methods and use of visual images were that of an outsider, which was not only paternalistic, but also biased toward the outsider perspective. Photovoice lessens dominant views or outsider bias because people take their own pictures. Providing cameras to people who may not be able to read or write or who are not able to participate in the dominant dialogue opens doors for these people to participate in a process that can ultimately lead to social action (Wang & Burris, 1997).

Photovoice also has its roots in participatory documentary photography, which acknowledges that there is a lack of information from people who are powerless. Documentary photography uses pictures to portray the perspectives of powerless people in ways that outsiders and people in power do not (Wang, 2005; Wang & Burris, 1997). It encompasses many visual styles used for documenting the interests of underrepresented groups of people (Wang & Burris, 1997).

Photovoice has been employed with several populations across the United States and the world. In addition to first being applied in Yunnan, China, it has also been employed in Ireland with working class women (McIntyre, 2003), with African Americans in Flint, Michigan (Wang, Morrels-Samuels, Hutchinson, Bell, & Pestronk, 2004), with youth (Wang, Cash, & Powers, 2000), homeless persons (Wang & Pies, 2004), persons with psychiatric disabilities (Bowers, 1999), mothers with learning difficulties (Booth & Booth, 2003), Latinos with intellectual disabilities in a health promotion study (Jurkowski & Paul-Ward, in press), and it is currently being employed with youth in foster care (Amy Paul-Ward, personal communication, October 31, 2006). The groups of people who participated in Photovoice are traditionally marginalized groups whose voices are not often heard. Involvement in Photovoice has allowed their knowledge and views to be shared with policymakers and others whose decisions impact their lives.

Photovoice Process

Setting

A 1-year study was conducted to understand the health beliefs of people with intellectual disabilities, their health needs, and interests related to health promotion. The study was conducted in collaboration with a community agency serving people with intellectual disabilities, both youth and adults, in a predominantly Latino neighborhood in Chicago. The agency serves 76 adults with intellectual disabilities, the majority of whom are Latino. Administrators of the agency were concerned about the health of their adult clients, so they contacted a colleague at a local university to identify a university collaborator for developing health promotion opportunities. A relationship was developed between the author and the agency administration and in collaboration with the agency, the author wrote a grant proposal to conduct a study examining the health beliefs and knowledge of Latinos with intellectual disabilities as well as the knowledge and beliefs of people who influence their daily lives, such as their family, agency staff, and local community leaders. The goals in the study were to (a) obtain their health beliefs while actively engaging Latinos with intellectual disabilities in the research process and (b) provide the data to the community agency and a task force of community, university, and agency partners to be used to guide the development of appropriate and relevant health promotion programs. In addition to Photovoice, the larger study conducted focus groups with Latinos with intellectual disabilities, their caregivers, agency staff, and community leaders.

Partners

The mission of the community agency is “to support and challenge urban families to achieve excellence and participate fully in community life through programs to enrich and empower people with disabilities, the disenfranchised and the underserved” (El Valor, 2003). Working with the agency to employ a participatory action research tool such as Photovoice was relatively easy because their mission is well-aligned with the goals of this type of research. The agency administration initiated the partnership and worked with me on the conceptual development of the grant proposal. They also provided information and a letter of support for the grant proposal. Once the grant was funded, the agency administration and several day program staff were actively involved throughout the research process. Latino participants with intellectual disabilities who volunteered to be a part of the research were actively involved through the Photovoice process as well as through the focus groups for data-gathering, validation, and dissemination.

Recruitment and Selection

Due to the nature of the methods of participation, adult Latinos with intellectual disabilities who were verbal and able to participate in a dialogue with other people who have intellectual disabilities were eligible to participate. The agency determined the level of capability for participation based on the Inventory for Client and Agency Planning (ICAP) assessments, which are completed by counselors at the agency and the parents or guardians (Bruininks, Hill, Weatherman, & Woodcock, 2004). The ICAP is used to obtain data on adaptive and maladaptive behavior, diagnoses, support services needed and received, and ability to participate in social/leisure activities. Focus group participants were recruited from the agency's adult day programs. The purpose of the study was explained and then they were asked whether they wanted to participate. Those who volunteered were then asked again in a one-on-one setting whether they wanted to participate to make sure that participation was voluntary. If they agreed, then those who did not have a guardian were provided with a consent form. Volunteers who had a guardian were asked to sign an assent form. Guardians received consent forms that were returned to the agency. All forms were available in Spanish and English. Consent and assent forms for people with intellectual disabilities were carefully adapted for persons with lower comprehension and approved by the Institutional Review Board at the University of Illinois at Chicago. If the participant was known by agency staff to be illiterate, the forms were read to them with a witness present. All volunteers were asked questions to verify that they understood the content of the consent or assent forms. For those with guardians, if both consent forms and assent forms were signed, they were able to participate. Several guardians did not return the forms; therefore, the Latinos with intellectual disabilities who signed assent forms but whose guardians did not return the forms were not able to participate in the project. This will be discussed further in the challenges section.

Three 90-minute focus groups with 5 participants were conducted among Latinos with intellectual disabilities. Focus group participants were asked whether they would like to volunteer for the Photovoice component of the project. I recruited Photovoice participants through the focus groups so that participants were already used to thinking about their health and what influences it. It was thought that having participated in the focus group would facilitate participants to think about health in the broader context of their daily life in their home, agency, and community. Due to the fact the study was a small pilot study that had a narrow time frame, the goal was to recruit 4 to 6 Photovoice participants. Of the Latinos with intellectual disabilities who volunteered to participate, 4 people completed the training in the Photovoice process. The others were not at the agency on the day of the trainings. Three of the participants lived with their family, and 1 lived in an agency group home with other people with intellectual disabilities. The 2 men and 2 women were 32, 42, 46, and 68 years old. Two had a diagnosis of Down syndrome and 2 had other etiologies. Three participants were Mexican American and 1 was Puerto Rican. All lived in or near the Chicago neighborhood that the community agency served.

Training

Each Photovoice participant was individually trained on the Photovoice process. First, participants were educated about the responsibility of using the camera. Examples of how to obtain permission from people prior to taking their picture were given. The potential risks of taking photographs in their community were discussed. Next, each participant was trained on the use of throwaway cameras. After consulting agency staff on how to ask about health, an abstract concept, in the most concrete way to ensure understanding, each participant was asked to think about what helped their health or made them feel healthy. They were also asked to think about things that hurt their health or made them sick. They were asked to take pictures of things that affected their health and that they felt made them healthy or sick. They were encouraged to identify parts of their daily life, whether at home, at the agency, or in their community that they thought affected their health.

Agency staff members who were participating in the project were trained on the purpose of the Photovoice aspect of the project. Staff members were also trained on the ethics of taking pictures and asked to ensure that the participants were being responsible when taking pictures at the community agency. A description of the project's purpose and process was distributed to other staff members. Many staff members helped participants when they were asked to take pictures of them engaging in an activity he or she wanted documented. Staff members who were actively involved also periodically reminded participants to bring the camera back to the agency when they completed the roll of film.

Data Collection

After the training sessions, I visited the agency once or twice a week for 3 weeks to see how the participants were doing with the project and answer any questions. The agency staff reported that the participants said they had finished their film within the first 3 weeks, but they did not remember to bring the cameras back into the agency right away. Once the cameras were returned, they were immediately taken to be developed to minimize the time between picture taking and the interview to reduce the risk of participants forgetting why they took certain pictures. A brief review of the pictures indicated that participants understood that they were to take pictures related to the broader context of their health. They took pictures around their community, at their home, and at the community agency. Doubles of each roll of film were purchased and both sets were given to the participants; one set was given prior to the interview and the second set was brought to the interview to be used to foster discussion. Participants were encouraged to share copies of the photographs with the people in the photographs to show appreciation for being a part of their project (Wang, 1999).

When I developed the rolls of film, it was apparent that 3 of the participants had no trouble using the camera or flash. The images in most of their pictures could be seen and, therefore, discussed during the interview. One participant seemed to have difficulty with the flash. Some of his pictures were overexposed and many were underexposed. Because most of the images in his pictures were indiscernible, he had far fewer pictures that could be reflected upon. He was provided with another camera to start again, but he never returned it.

The Photovoice methodology developed by Wang includes a Photo-Discussion section, which is a group interview for critical discussion and reflection about the selected images from the rolls of film (Wang & Burris, 1997). In this study, I decided to interview Photovoice participants one-on-one in a private setting at the community agency during their day program. This process was tailored from the original method that entailed a focus group with Photovoice participants because I deemed it important to gain more depth in the health perspectives of the participants. I wanted to gather viewpoints that were not shaped by the perspectives of others because a range of views was already identified during the focus groups.

The Photovoice participants were interviewed separately within a month after their film was developed. Prior to beginning the interview, to obtain feedback and facilitate them to begin thinking about the project again, I informally asked participants what they thought about being part of the photo project. They all responded with a brief answer such as, “It was good.” I then probed further to glean more insight into their satisfaction or dissatisfaction with Photovoice and asked each participant more explicit questions about whether they liked or did not like taking pictures and whether they felt comfortable taking pictures. Although these questions were asked before, the participants were reminded about confidentiality and the audiotape was turned on. I did record, using handwritten notes, that each participant replied positively to the questions, albeit with brief affirmative answers. The responses suggest that a more formally developed evaluation tool to encourage feedback from the Photovoice participants may have been better for obtaining detailed feedback about this process.

During the individual interviews, I repeated the purpose and the questions the participants were asked to think about when they were given the cameras. I used a question guide that was inspired by Wallerstein and Bernstein's (1988) question technique. The questions asked in this Photovoice project were (a) Why did you take this picture? (b) What is this a picture of? and (c) How does this picture relate to your health? If the participants raised issues about the picture, the following question was asked: (d) What do you think can be done to deal with your concern? Photovoice participants with intellectual disabilities reflected on what the images meant to them when thinking about their health and well-being. They discussed how the images represented their daily life experiences and how those experiences related to their health (Wang & Burris, 1997). Although the above general questions were asked, most of the discussion was free-flowing. The interviews lasted about 40 minutes. Each interview was audiotaped so that exact quotes could be used in reports to the community, in articles, and in the pictorial scrapbooks that were provided to the participants.

Analysis

All Photovoice interviews were recorded and transcribed verbatim and matched with their pictures. Once the interviews were completed and transcribed, I created a scrapbook of photos and matched quotes from the interviews for each participant. Once the scrapbooks with quotes were complete, I removed all personal identifying information from the transcripts before analysis, which was done using Atlas ti software. First, I conducted systematic thematic coding of health beliefs and priorities, using grounded theory methodology (Miles & Huberman, 1994; Strauss & Corbin, 1990). The second phase of the analysis involved identifying themes based on the World Health Organization definition of health and the health belief model and theory of planned behavior to identify theoretical constructs (Janz, Champion, & Strecher, 2002; Rosenstock, Strecher, & Becker, 1988; World Health Organization, 1946).

Verification of the Findings

After completing data analysis in Atlas ti, I convened the participants for a member-check focus group to discuss the themes identified in the analysis. Participants with intellectual disabilities were given the summary of the findings and asked to discuss and verify whether the themes were true for them. Participants also prioritized themes that they felt were important. These priority themes were incorporated into a final report and presented at a Town Hall meeting by myself and 1 Photovoice participant that I organized with the help of the administrator of the community agency.

Dissemination

The findings of the Photovoice project were included in a final report that I developed by summarizing the priority themes from the Photovoice participants, using their quotes to emphasize the themes. I created another version of the final report that was modified to make it understandable by people with low literacy. Both reports included pictures taken by the Photovoice participants, with corresponding quotes (with the permission of the photographer and speaker). Several community stakeholders, including Latinos with intellectual disabilities and other people with intellectual disabilities, agency administration and staff member, caregivers, community leaders, and university faculty and students attended the aforementioned Town Hall meeting. One of the Photovoice participants presented his scrapbook and discussed his experiences during the meeting. Attendees, including people with intellectual disabilities from the agency, responded to the presentation and participated in a discussion. I moderated the meeting, where the participants identified recommendations and action steps for developing health promotion programming. I summarized the recommendations and action steps and added them to the final report and disseminated the revised report to the agency administration and university faculty who were a part of a task force that was working on program development.

Discussion

Benefits of Photovoice as a Participatory Action Research Tool

Involving people with intellectual disabilities in research can improve investigators' understanding of the needs, interests, and experiences of people with intellectual disabilities. Photovoice gives researchers the ability to understand the views and needs of this population from their perspective, rather than from the perspective of their caregivers, health or rehabilitation professionals, or researchers, who traditionally control the needs and experiences of people with intellectual disabilities. Engaging people with intellectual disabilities in the research process may improve the validity of the research because it fosters a more authentic analysis of their beliefs or knowledge related to the research questions. The data are more accurate with regard to the social reality of people with intellectual disabilities (Balcazar, Keys, Kaplan, & Suarez-Balcazar, 1998). As a result, the findings from participatory research can be used to develop more effective programs. Including these individuals in the process also provides researchers with a truer perspective on what influences the well-being of people with intellectual disabilities. This truer perspective can spawn innovative techniques and policy changes. Furthermore, giving cameras to people with intellectual disabilities to document their perspective allows the researcher to gather information from people who are historically underrepresented in research and information about the influences of the social reality and physical places that are often not accessible to researchers. It allows investigators to obtain data from the homes and communities where these individuals spend their time without having a researcher present. Investigators gain valuable knowledge about the larger social context of the lives of people with intellectual disabilities, while at the same time, their lack of presence may allow for a more realistic recording of information through photographs rather than information gathered by researchers.

There are several benefits for Photovoice participants. Photovoice enables active participation in the research process. Similar to what other investigators have found when using Photovoice with people with disabilities, the photographic method seemed to foster a sense of pride and confidence among the participants (Strack, Magill, & McDonagh, 2004). Latinos with intellectual disabilities who participated in the Photovoice project proudly showed off their scrapbooks and discussed their photographs with friends and staff. Anecdotally, staff members reported that the participants spoke very positively about the Photovoice aspect of the project. They reported that there was a lot of discussion about the scrapbooks among the people with intellectual disabilities at the agency, and many individuals expressed the desire to participate in a Photovoice project and have scrapbooks of their own.

Photovoice provides an avenue for people with intellectual disabilities to reflect on their lives and communicate their perspective to people who make decisions that influence their daily lives. Actively involving these individuals in research and planning provides them with opportunities to develop new skills and confidence (Jurkowski & Paul-Ward, in press; Strack et al., 2004). Photovoice can foster a feeling of ownership in the research because people with intellectual disabilities are collecting their own data. Their involvement also provides them with an opportunity to shape policy and programming so that it will be more relevant and sustainable. This may also foster a sense of pride in being able to be actively involved and influential in the research process and results. Further, one of the issues that has been stated to be a limitation for engaging people with intellectual disabilities or people with developmental disabilities in research is the lack of interest and immediate benefit to the participant (Lennox et al., 2005). Photovoice methods may be more sustainable for longer term use because photography is an enjoyable tool that has a concrete result (the photograph) that can be accessed almost immediately after completion of a roll of film through overnight or 1-hour processing. This is a stark contrast to research in which people with intellectual disabilities answer questions created by researchers with less immediate or obvious benefit to the participants and with methods that may reinforce a sense of having to go along with the interests of people around them. The positive attributes to the researchers and individuals with intellectual disabilities who participate in a research project that includes Photovoice is the reason this paper was written and submitted to a disability journal.

Challenges

The Photovoice study described here as an example is limited by its small size. This study was used as an example of a Photovoice process that was modified and implemented among people with intellectual disabilities. Although Photovoice is a useful participatory action research tool for engaging people with intellectual disabilities in research and program development, in the study example presented in this paper, I identified some challenges and limitations to using Photovoice methodology with this population. First, engaging in any type of participatory action research is more time consuming than traditional research because it is essential to take time to develop relationships and trust as well as continue to actively engage participants throughout the process. Some limitations are similar to those of other research methods, in that although Photovoice is useful for engaging those who cannot read or who have a low literacy level, this method would be difficult to employ with people who are nonverbal. They may be able to participate in the photography component, but it would be difficult to engage them in critically discussing the photos in an interview or group discussion. Those with severe cognitive limitations and perhaps even some with moderate intellectual disabilities also may not be able to comprehend the important ethical aspects of taking pictures that are explained in the training. People with intellectual disabilities have varying levels of communication barriers, and for Photovoice they have to make decisions about when it is appropriate to take a picture. Some may have difficulty understanding the purpose of the study and/or the consent forms. Consent forms often contain language that is required by institution review boards that may be difficult for some people with intellectual disabilities to understand (Lennox et al., 2005). Although efforts have been made to obtain the perspectives of people with severe disabilities through using an extensive array of assessment information, there are still issues with inferential interpretation of behaviors and ensuring that the interests of people with severe disabilities are truly taken in to account (Ware, 2004).

As mentioned earlier, 1 participant with a moderate intellectual disability in the study example had difficulty using the flash because most of the images in his pictures were indiscernible, so he had far fewer pictures to reflect on. As noted, he never returned the second camera he was given. Perhaps additional training would have helped this person fully participate in Photovoice. Training that is tailored to the cognitive ability of each participate may improve participation of people with intellectual disabilities.

Some people with intellectual disabilities may also have difficulty understanding the reason they are taking pictures, especially when focusing on abstract concepts such as health and what influences it. Latinos with mild to moderate intellectual disabilities participating in the study were able to take pictures and critically discuss how their pictures represented what they thought influenced health. However, people with severe intellectual disabilities may not be able to participate in the Photovoice research process. They may have difficulty critically reflecting on their photographic images and relating them to their daily lives.

Another limitation of Photovoice identified in the study example is the fact that caregivers need to provide consent for those with guardians. Caregivers and agency staff also need to be supportive of the person with intellectual disabilities taking pictures of them or in the environment in which they have significant control. As a result, cooperation of caregivers and staff members can heavily influence the participation level, the images that are captured, and perhaps even the themes that are identified by the participants.

The limitations of Photovoice are not unique to Photovoice methodology, but unlike traditional research methods, it enables active participation through photography. The method enables people with intellectual disabilities to record and reflect on their own perspective rather than researchers identifying the themes and collecting information about them through the more typical forms of collecting data. Furthermore, Photovoice has the potential benefit of empowering people with intellectual disabilities to learn a new skill and use it to express their perspective through photography. Photography provides concrete products that can be used to influence decisions that shape their lives as well as for social action to make changes in their lives by displaying and/or publishing the photographs with quotes or stories (Booth & Booth, 2003; Jurkowski & Paul-Ward, 2007, Wang, Cash, & Powers, 2000).

It is important to note that although Photovoice has mainly been used with research using a participatory action research approach, it has the potential to be used in more controlled settings in which researchers heavily influence the photographs taken, do not encourage critical discussion of the photographs, and do not engage participants throughout the research process. Researchers must apply this method with the intent of actively engaging people with intellectual disabilities in the research process so that they have a voice in data analysis and the presentation through such methods as a member-check focus group, during which the group members verify themes and summaries of themes as well as discuss how they want the results used. Assessment of the efficacy of Photovoice as a participatory tool has not been conducted; however it appears that if done correctly, useful feedback from participants is obtained (e.g., through the member check focus groups). Another possibility for assessment is having an independent researcher conduct one-on-one interviews about participants' experiences with Photovoice, their perspective about whether they felt that their perspectives were valued, and their assessment of how Photovoice improved their ability to influence aspects of their daily lives.

Conclusion

This study example with Latinos participants who have intellectual disabilities suggests that Photovoice is an effective participatory research tool. Photovoice is an emerging empowering research method that can be successfully used when working with people with intellectual disabilities. Photovoice methodology enables individuals with intellectual disabilities express their real-life experiences through photographic images that represent their perspective as they interact in their environment. They can collect data with photographs in places where researchers may not be able to observe. Photovoice fosters the active participation of people with intellectual disabilities in research while at the same time providing them with almost immediate benefit from participating in the research process because they are able to take and keep pictures for their own use. This active participation in the research process is especially important for this population because they traditionally have been treated more as research subjects than as than research partners or collaborators (Ward & Trigler, 2001). Based on my experiences in conducting the study used as an example, it is apparent that Photovoice enables a sense of ownership among people with intellectual disabilities in the research process while providing researchers with insights into the perspectives of people with intellectual disabilities.

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Author notes

The author would like to thank El Valor as well as Dr. Joy Hammel from the Department of Occupational Therapy and Dr. Tamar Heller from the Department of Disability and Human Development at the University of Illinois at Chicago. Funding for this publication was provided through the Rehabilitation Research and Training Center on Aging with Developmental Disabilities and the Mary E. Switzer Merit Fellowship, National Institute on Disability and Rehabilitation Research (Grant H133B031134 and Grant H133F040031).

Author:

Janine M. Jurkowski, PhD, Assistant Professor, Health Policy, Management, & Behavior, University at Albany, One University Place, Rensselaer, NY 12144. jjurkowski@albany.edu