Experience and Utility of Using the Participatory Research Method, Photovoice, in Individuals With Spinal Cord Injury

A convenience sample of Veterans with SCI/D was recruited via flyers posted in the Spinal Cord Injury Center (SCI/D Center) and disseminated by SCI/D health providers. There were no exclusions; individuals were eligible to participate regardless of injury level, severity, and duration.

Participants completed the human subject's requirements, which included informed consent and a photo-release consent form. Participants completed a brief questionnaire that collected data on demographic and injury characteristics.

Participants attended a one-on-one, 30-minute informational orientation session held at the SCI/D Center to learn about the study procedures. Each received a 5 megapixel digital camera, a 2 gigabyte secure digital memory card, a VA business reply envelope to return the memory card, ethical guidelines, and instructions for participation. Ethical guidelines prohibited photographs that included faces and other identifiable information. Technical help was provided to ensure that all participants were comfortable with using a digital camera and taking photographs. Individuals with SCI/D who were unable to use the camera (eg, had issues using the camera due to hand function, paralysis, unsteadiness) were encouraged to seek assistance from a caregiver, friend, or family member willing to capture photographs as guided by the participant with SCI/D.

Participants were asked to take 25 to 30 photographs that captured salient features in their environment based on the following prompts:

1. Take pictures of things that help you function the way you want to.

2. Take pictures of things that are barriers to you functioning the way that you want to.

3. Take pictures of the adaptations you make so you can do the things you want to do.

Participants had 4 weeks to take the photographs and return (in the provided business reply envelope or in person) the memory card containing pictures to the research team. Participants were invited to partake in a 30- to 60-minute, one-on-one, in-person follow-up interview 3 to 4 weeks later at the SCI/D Center to discuss their photographs and experience with the photovoice process. A semi-structured interview guide, developed using literature on patient-reported needs around function with SCI/D and on use of photography to elicit factors shaping participant perceptions, was used.12,17 

During follow-up interviews, the photographs were used to stimulate discussion. The researcher probed into the significance of each photograph to elicit detailed personal narratives about the participants' experiences with and perceptions of functional needs. Upon completion of the interview, participants were able to keep the camera and they received a new memory card and a $10 monetary incentive.

Interviews were audio-recorded, transcribed verbatim, and entered into NVivo 8 for analyses. An inductive coding approach was used, and coding was conducted by 3 qualitative researchers. To attain reliability, transcripts were independently coded and compared and coding discrepancies were resolved through consensus.18 Coded transcripts were analyzed within and across cases to develop emerging themes. Modified codes were applied to the prior set of responses until reaching saturation.18 This study was approved by the Hines VA Institutional Review Board (PROMISE #0019).

Of the 18 Veterans with SCI/D who completed the orientation, 9 (50% participation rate) completed human subjects requirements and participated in both protocol phases (photos and follow-up interview). Participants were 64 years of age, on average, Caucasian (67%), and had paraplegia (75%); average duration of injury was 22 years, and 8 were male. Sample characteristics are included in Table 1.

Although the primary objective was to understand experiences with and feasibility of photovoice methodology in persons with SCI/D, we present the themes that were derived from the participants' narratives in which they discussed the photographs they captured in order to provide an understanding of the type of information that is achievable using this method. Overall key themes (subthemes) included (1) function (definition, barriers/facilitators, adaptations to functional challenges); (2) participation as impacted by functional ability (effects of participation – feelings of enjoyment, effects of participation – feelings of accomplishment, barriers/facilitators to participation, and examples of participation), (3) individual/patient context (outlook on life, physical aspects, social aspects), (4) quality of life as linked to function (positive aspects, challenging aspects), and (5) experiences individuals with SCI/D had with photovoice (rewarding experiences, initial challenges). Primary themes and subthemes are provided in Table 2. Examples of photos and corresponding narrative quotes are presented to provide readers with a feel for photovoice (Figures 1–3). Further content analyses using photovoice are presented in related papers, which delve into the content and describe 2 key themes: An expanded discussion of function can be found in Hill et al19 and participation in SCI/D can be found in Balbale et al.20 The primary objective of this article is to examine the feasibility of the photovoice methodology in SCI/D, hence the theme that emerged around feasibility and experiences with photovoice methodology is described in detail below.

Five Veterans described some initial issues with not knowing how to use the camera and not being sure what to take pictures of; however, once clarifications were made, they described it as a positive experience that they hoped would help others. Most Veterans reported taking their photographs independently, and 2 Veterans discussed seeking assistance from a caregiver or family member to take clearer pictures when their hands were unsteady.

Veterans mentioned not being sure what to take pictures of or wishing they had taken pictures of other things to be part of the discussion.

Veterans also described their experience as rewarding because they felt it could help others.

Some Veterans said that participation in this project provided them with revelations. One said it revealed adjustments being made.

This study is among the first to share perspectives and experiences of individuals with SCI/D specifically related to their use of photovoice methodology. Participant photography and narratives generated from this study revealed new, important insights on topics that matter most to individuals with SCI/D, such as function, participation, and quality of life. Study findings can (1) inform future health care improvements to address SCI/D patient-centric needs and (2) expand existing knowledge by demonstrating the utility of using photovoice among individuals with SCI/D.

Literature describes photovoice as being beneficial not only in learning about perceptions and needs related to health but also in empowering individuals to share their views and promote positive change in their own health and environment.10 Photovoice has been used with a variety of populations to investigate factors that influence beliefs and health behaviors in many areas, including physical activity, pain, and physical and mental health management.21–24 In one review that examined populations with whom the photovoice methodology has been used, findings showed that most studies were conducted within the context of a public health issue, such as obesity prevention or homelessness, and that less than a quarter of studies (24%) focused on a specific health diagnosis or disability.25 The authors of this review concluded that the methodological and ethical considerations associated with using photovoice in populations of persons with disabilities required further study to promote its use,25 which we have done in this paper examining photovoice utility and experiences in individuals with SCI/D. The use of photovoice in adults with physical disabilities and/or neurological conditions that impair mobility is limited, although there are a small number of recent studies in populations of persons with physical disabilities,26,27 including a few studies that include SCI/D cohorts.14–16 

Photovoice methodology has been used with other potentially vulnerable populations such as adults with intellectual disabilities,28–30 serious mental illnesses,31 chronic pain,22 and cancer.32 Collectively, these studies are important because they demonstrate that populations with a variety of illnesses and disabilities are well-suited for photovoice studies, supporting its inclusion as a methodology to facilitate richer descriptions of participants' lived experiences.11,25 Furthermore, participant-generated photography can help enable participants to convey complex perspectives and experiences that may be challenging for them to articulate by traditional methods.33 

Research involving individuals with SCI/D has used photovoice to examine environmental factors related to community participation,16 self-perceived participation,14 and the role of assistive technology in participation.15 In the current study, application of the photovoice method enabled persons with SCI/D to use photography and follow-up interviews to express their unique needs, experiences, and perceptions around important health promotion and health care topics. Specifically, participants focused on several themes in their photography and narrative discussions, including (1) function (what it means to them, barriers and facilitators encountered, and adaptations they employed), (2) participation (impact of participation on their lives), (3) individual context (general outlook on life as a related to functional abilities, both physical and social aspects), (4) quality of life, and (5) photovoice experience (rewards and challenges using photovoice). These findings highlight the rich data that can be gathered with photovoice. The data provide SCI/D health care leaders and providers the opportunity to adequately evaluate and address functional challenges that have an enormous role in multiple aspects of life satisfaction, such as participation and overall quality of life.

Photovoice was successfully used in our cohort of Veterans with SCI/D and, as suggested by others,16 our work illustrates that photovoice is effective in empowering individuals with SCI/D by engaging them in the research process and providing them with an opportunity to express feedback in multiple ways (visually through photos and verbally through interviews). In the current study, individuals with SCI/D described their photovoice participation as a positive experience. Some discussed challenges with handling the camera (unsteadiness), but emphasized that they were pleased to be included and hoped that their participation could help others with disabilities. Individuals with SCI/D described participating in the photovoice process as rewarding; it highlighted what they have learned to do to make things work for themselves (with regard to taking photographs for this study and function, in general), what they are able to achieve, and the ways that they have used creative adaptations, when necessary. Our findings indicate that individuals with SCI/D were able to utilize this methodology, even with hand impairment or challenges due to paralysis, and enjoyed participating and appreciated the opportunity. Too often assumptions may be made about the challenges that individuals with disabilities may have with a task such as this. However, failure to be inclusive goes against the grain of participatory research methodology and introduces inequity. This population, like others faced with challenges or disadvantages,34 should not be excluded from participatory, innovative ways to express themselves even though adaptations might be needed to optimize their experience and facilitate participation.

Adapting methodologies and protocols to allow for flexibility will support participation, engagement, and comfort in participating in photovoice studies. Research teams should be willing and prepared to provide adaptations to accommodate individual participant needs. This was evident in our study, as some participants with SCI/D were unable to use the camera and sought help from family members or caregivers to capture their photographs. Some participants chose to take photographs on their own, even though at times their hands were unsteady which led to an unclear photograph. One methodological consideration for future studies including persons with upper extremity paralysis or hand impairment may include utilizing cameras with screens where pictures can be previewed35 and following up with participants to ensure that they have any technical support needed to engage in the study. Considering that the use of smartphones is common in many unexpected populations, the use of these phones by persons with SCI/D and the implications for hand stability and camera options warrant further consideration. Nonetheless, it is imperative to note that the quality of the photograph is less important than its meaning to the participant and the dialogue that is stimulated from it.

With increasing use of the photovoice method in SCI/D cohorts, there is the need to develop an ethical framework relevant to this population that encourages inclusion, guides research efforts, and protects participants from potential invasion of privacy. In addition to traditional ethical concerns in photovoice studies about informed consent, confidentiality, and ownership of photographs and other data generated,36 it is critical to ensure confidentiality of participant data to the extent possible given the involvement of additional individuals (proxies such as family members and friends) during data collection. Photovoice literature also highlights that sensitive data may emerge from participant photographs and discussions,9 thus it is essential to maintain participant privacy. This is especially relevant in participants with SCI/D, as photographs and subsequent discussion may inadvertently reinforce potential stigmas associated with disability.25 

Photovoice has the potential to have a significant impact on the SCI/D patient care experience. This methodology can be used as a component to evaluating programs that are focused on enhancing or improving the patient experience or identifying barriers to care37,38 related to function and health. Findings can provide valuable insights about the SCI/D patient experience and may be used to develop patient-centered interventions and community-based initiatives to promote optimal health outcomes for individuals with SCI/D. Future work is needed to build upon these participatory studies that engage individuals with SCI/D, providing them with a variety of avenues (eg, visual, verbal) to comfortably express their opinions, and to develop interventions that address their unique needs. In a society where health inequalities persist, this study represents one way to use innovative research methodologies across the disability spectrum to promote health and encourage social change.

Another key benefit of using photovoice is the partnerships that are fostered between researchers and participants.12,39 Such partnerships may pave the way for using photovoice as a tool for disability advocacy.40 Previous studies demonstrate how these partnerships can be harnessed to further engage SCI/D community members in advocacy initiatives to improve state disability parking laws based on photovoice data and in community-based interventions to improve SCI/D patient outcomes.7,16,40 Photographs and narratives generated by participants are important data sources that can be used to identify areas of need. This was noted, for instance, by a participant in the current study who saw photovoice as a method of documentation that could be used as a pathway to advocate needs with leaders: “I can print these pictures out and send them to my alderman.” These needs should be addressed, through interventions and advocacy efforts, to facilitate positive health outcomes (function, participation, and quality of life) at home and in the community.

Our small sample, although common in photovoice studies, may limit generalizability to the population of persons with SCI/D. Inclusion of only Veterans with SCI/D may also limit generalizability, but we feel that our findings are applicable to persons with SCI/D at large. It is possible that photovoice training instructions may have influenced or biased participant photography, such that individuals may have taken photographs of what they thought researchers wanted to see rather than things meaningful to them.12 Eliciting the help of others to take pictures, even when directed by the individual, may have had some influence on the photos captured. Finally, we were not able to facilitate group discussions of the photographs to stimulate further engagement among participants; such discussions are often a final step in photovoice studies11 and should be considered in future research.

Participants responded positively to the photovoice process, and use of the methodology was feasible in persons with SCI/D and was a good experience. Many participants had not used a camera (since their injury), but they were able to use the digital camera on their own; others (with impaired hand function) were able to get help to take photographs. All participants expressed that they enjoyed participating and wanted more opportunities like this to help make positive changes for other people with SCI/D. Photovoice findings were driven by participants' perspectives and generated through their photography and detailed narratives. Photovoice was feasible in this cohort and was successful in eliciting thoughts (our secondary objective) about topics such as function, participation, context, and quality of life as they related to persons with SCI/D. Photovoice studies can inform future health promotion efforts to address the needs of persons with SCI/D and contribute uniquely to a small but emerging knowledge base by demonstrating the utility of using photovoice among individuals with SCI/D (as demonstrated within a Veteran SCI/D cohort) and encouraging inclusion of persons with physical disabilities in all types of research.

None of the authors have a financial or other relationship that might signify a conflict of interest.

This work was supported by the Department of Veterans Affairs, Office of Research and Development Health Services Research and Development [RRP 13-248]. The views expressed in this manuscript are those of the authors and do not necessarily reflect the position or policy of the Department of Veterans Affairs or the United States government.