A Photovoice Study on Life After Traumatic Brachial Plexus Injury

Abstract

Background:

Brachial plexus injury (BPI) leads to a variety of life-altering changes, both physically and mentally. While tremendous effort has been dedicated to improving patients’ upper-extremity function through surgical and rehabilitation advances, patients’ life experiences after BPI are largely understudied and poorly understood. Our study aims were to qualitatively assess the patient experience after BPI through the use of a photojournalism method known as photovoice, a community-based participatory research methodology centered on participant photograph-taking, and to trial the use of photovoice as a novel qualitative method within the field of orthopaedics.

Methods:

We utilized both photovoice and qualitative methods to highlight the experiences of 7 participants living with a traumatic BPI (5 male and 1 female, 4 White and 2 Black, plus 1 not stated). The study was conducted in 6 phases with a mix of 1-on-1 and focus group discussions. Over the course of 10 weeks, the group met to generate photography prompts, analyze photographs (in 1-on-1 meetings with researchers), and discuss the meaning of photographs as a group. The research team analyzed transcripts from all 1-on-1 and group discussions to create 2 editions of e-magazines, which included quotes from transcribed data layered with photographs from each participant, to serve as patient-facing support materials for future patients with BPI. In the final phase, the research team shared the e-magazines with the participants in a group discussion.

Results:

The participant-selected topics highlighted in the e-magazines ranged from pain after injury to tips and tricks for living with BPI. Photovoice was effective in building community among patients with BPI and creating meaningful patient-facing support materials. Our findings demonstrate the utility of using participant-generated photography as a tool to encourage meaningful conversation and develop community among participants.

Conclusions:

Participant-led methodologies, such as photovoice, provide opportunities for patients to convey their life experiences to their community and to their health-care providers in a unique way. Our study also demonstrates the potential for photovoice to improve the patient experience by generating a sense of community, allowing patients to express themselves, and inspiring others.

Brachial plexus injury (BPI) frequently results in the sudden loss of upper-extremity function, which affects both physical and mental health domains. Current BPI research is primarily focused on quantitative outcomes such as muscle strength testing, which do not necessarily correlate with patient satisfaction^1,2. These measures fail to fully capture the patient’s perspective, limiting our understanding of what contributes to patients perceiving a “good” outcome after BPI. Qualitative research has been increasingly used to further explore patient perspectives and experiences through interviews and discussions³. These methods have the power to improve our understanding of patients’ experiences and inform future research directions, particularly for injuries with life-long repercussions such as BPI^4–7. Specific to BPI, prior studies have used qualitative methods to gain greater insight into delivery of care⁸, satisfaction¹, psychological recovery^9,10, pain¹¹, and function¹², but these studies relied on semistructured interviews developed by the investigators. The current literature lacks perspectives and experiences that are predominantly generated by patients with BPI, which are necessary to identify additional areas to improve quality of life. To address this shortcoming, we used a methodology known as photovoice, a participant-led methodology that utilizes photojournalism (journalism based on participant-generated photographs to describe their perspectives).

Photovoice was first described as a participant-led methodology by Wang and Burris in 1997¹³. Photovoice falls under a specific realm of qualitative research called participatory action research (PAR). One of PAR’s key tenets is ensuring that the project is primarily participant-led, with the research team taking on an observant and assisting role. Photovoice methodology is centered on discussion of photographs taken by participants. Prior to taking photographs, the group agrees on a prompt to be the subject of the photographs. The methodology centers on 3 primary goals: (1) to enable people to document and reflect on their community’s assets and weaknesses, (2) to spark conversations between community members and researchers in discussion of the photographs, and (3) to reach non-community-member partners and inform decisions on policy, guide conclusions drawn from ongoing research, and direct future research¹³. In contrast to quantitative methods, qualitative methods are focused on describing human experiences and sharing them with others, rather than measuring outcomes after an intervention. An effective qualitative study can deepen readers’ understandings of a population’s social and behavioral phenomena¹⁴. Our study team included an expert in photovoice methodology (J.H.), with whom we consulted throughout the study design, data collection, analysis of data, and interpretation of findings.

Throughout our study, we maintained the participant-led model of photovoice by having participants decide on their audience, develop the prompts to guide their photograph-taking, and provide feedback on incorporating their photographs and messages into electronic (e-) magazines. The overarching aim of this investigation was to explore life after BPI and to trial the use of photovoice as a novel qualitative method within the field of orthopaedics.

Materials and Methods

Participants and Recruitment

Following approval from our institutional review board, we recruited 7 participants with traumatic BPI to participate in our study. Participants were sampled from our tertiary-care nerve injury practice or through their involvement with a patient advocacy group (United Brachial Plexus Network, UBPN). Consistent with prior photovoice studies used for disability research¹⁵, we used purposive sampling, which is a sampling strategy that seeks to obtain a sample of participants with specific characteristics. For this study, our participants were selected with an emphasis on having a variety of demographic backgrounds and injury characteristics (Table I). Purposive sampling strategies aim to select participants who have characteristics or experiences that provide rich and in-depth information for the research question¹⁴. Participants provided consent and were compensated for the time spent on the project. Participants gave permission for their faces to be included in photographs used throughout the project, including materials that might be disseminated to the general public.

TABLE I.

Participant Demographics^*

Patient	Age (yr)	Gender	Race	Time Since Injury	Injury Pattern
1	26	M	White	4 yr + 6 mo	Complete/pan-plexus
2	47	M	Black	1 yr + 8 mo	Complete/pan-plexus
3	56	M	White	21 yr + 8 mo	Complete/pan-plexus
4	34	M	White	2 yr + 11 mo	Lower trunk
5	DTD	DTD	DTD	DTD	DTD
6	47	M	White	6 yr + 2 mo	Complete/pan-plexus
7	71	F	Black	2 yr + 2 mo	Lower trunk

^*DTD = declined to disclose.

Data Collection

We conducted and designed our study using the photovoice methodology framework, which consists of a mix of group discussions and individual interviews to discuss participant-taken photographs, as described by Wang and Burris in 1997¹³. Participants attended a total of 6 virtual videoconference meetings, of which 5 were group discussions and 1 was an individual interview, all completed over the course of 10 weeks. Parameters for appropriate photograph-taking were provided to all participants during the first group meeting. Photograph prompts were developed through collective group discussion and agreed upon by participants. All meetings were audio-recorded and transcribed using a secure transcription service. Descriptions and the sequence of the meetings are displayed in Figure 1. At critical points throughout the study design, data collection, analysis, and interpretation of the findings, we consulted with the expert in photovoice methodology^15,16 (J.H.).

Fig. 1.

Photovoice project sequence.

Audience, Analysis, and e-Magazine Creation

The primary goals of our data analysis were to (1) create e-magazines that reflected both individual experiences and group discussions and (2) explore the potential benefits of photovoice as a methodology to study this life-altering injury. During the first meeting, the participants determined what medium they would like to use to share photographs and determined their target audience for the final photojournalism product. Participants decided to create an easily accessible, electronic collection of photographs for physicians, future patients with BPI, and family and friends.

Participants wanted to be able to share the product of our photovoice study electronically. After brainstorming, the participants and researchers decided to pursue the creation of an e-magazine, as it met many of the group goals for sharing capabilities. Analysis was conducted by the primary author in phases. For the first edition of the e-magazine, transcripts from meetings 1 through 3 were used to create the e-magazine. The second edition of the e-magazine was composed using transcripts from meetings 4 and 5. During magazine creation, the primary author listened to, and familiarized themselves with, the audio recordings and reexamined the transcripts iteratively to select quotes that reflected group discussion topics and the meaning of photographs. The e-magazines are composed of both overarching sentiments of the group discussion and photographs with reflective quotes. All photographs included in the e-magazines are accompanied by a reflective quote from the participant who captured the photograph. Once drafted, e-magazines were discussed with the group and edited on the basis of participant suggestions. All participants were asked privately if they would like to make any personal changes to their photographs and quotes. Once all participant suggestions were made, final drafts of both e-magazines were sent to the participants.

Results

Of the 7 participants, 6 provided demographic and injury information (Table I). Among those 6 participants, the median time from injury to project participation was 44.5 months (range: 20 to 260 months). Of the 6 participants who included demographic information, 4 were White and 2 were Black. The median age at the time of participation was 47 years (range: 26 to 71 years).

First E-Magazine Edition

The first edition of the e-magazine (Appendix A) is titled “‘There is somebody out there that knows what you’re going through’ – A photo-journalism project through the lens of having a brachial plexus injury”. The group decided to focus their photographs on their experience with pain, on “overcoming the fog,” which refers to overcoming mental challenges after injury, and on visually “blending in.”

Pain

Capturing pain in an image manifested in 3 ways: the intensity of pain, facing pain mentally, and finding distractions (Fig. 2). Participants both visually captured their relationship with pain and discussed it at length during interviews and group discussions.

Fig. 2.

Examples from the pain portion of the first-edition e-magazine. Fig. 2-A A description of pain intensity and coping. Fig. 2-B A description of mentally facing pain. Fig. 2-C An example of a distraction from pain. Fig. 2-D Advice on how to cope with pain.

“The [pain] component of it is just—even though I’m pushing and succeeding in life it’s like this one component [pain] is just… if this could be addressed and treated at the onset of injury, it would be a complete game changer for how people would get back into their life again and the level of how their injury would affect them” – Participant 3

“It’s called misery. When you can’t escape something that the only thing you want to do is escape, when you can’t run from something. You just have to face the demon. When you have to face the demon of nerve pain, you get to face all your other demons, too.” – Participant 1

“We’re riding motorcycles and golfing. You can do it, so putting that message out there in photos… They [doctors] were drilling into my head, “We’re going to get your arm back…we’re going to get your arm back… you can have your arm back.” I would trade that in 7 days a week and twice on Sundays for a better approach to my pain” – Participant 6

“Overcoming the Fog”

Participants discussed a shared experience of overcoming a mental fog after their injury. Photographs of overcoming the fog were focused on rebuilding confidence, realizing physical and mental capabilities, and proving to yourself that your abilities change as you grow after your injury (Fig. 3).

Fig. 3.

Examples from the “overcoming the fog” portion of the first-edition e-magazine. Fig. 3-A A symbolic example of how old hobbies take more than physical capabilities to begin again. Fig. 3-B An example of an activity that mentally proved to the participant that they were capable of activity again. Fig. 3-C A reflection on how learning new skills has an exponential effect on confidence. Fig. 3-D An example of mental barriers, which are at times the most limiting factor.

“Part of it is that I felt like I let [the physical challenge of hanging a picture frame] defeat me, which is just not my temperament. I always try and figure a solution out. But I really learned the weight of something emotionally—I couldn’t fix this—I couldn’t fix the problem. So I wouldn’t think of doing it an alternate way… Finally I was just like, ‘What if I imagine these were someone else’s walls?’ Immediately, a flood of ideas came up … within hours, I was putting up paintings on the walls. It was after 2 years.” – Participant 3

“Blending In”

Some participants noted that concealing their injured arm contributed to feeling like themselves post-injury. Hiding their injuries felt like a way to ensure they would be seen in the same way as everyone else (Fig. 4).

Fig. 4.

An example from the “blending in” portion of the first-edition e-magazine.

“Especially in the beginning [when I wore] a standard medical sling, people can’t help but look, and it just bugs me. I want to blend in, in every way of my life. I don’t want any advantages. I don’t want to be looked at in any different capacity than I was pre-injury.” – Participant 4

Second E-Magazine Edition

The second edition e-magazine is titled “‘Where there’s a will, there’s a way’ – A tips and tricks guide for life after a brachial plexus injury” (Appendix B). The second-edition photograph prompt was developed during meeting 4 and is aimed at sharing tips and tricks for other current and future patients with BPI. The participants wanted to create a guide for how they have learned to navigate physical challenges, with the hope that this guide may save time and frustration for others.

“If every trick that is learned from each patient can reach more and more people–it just has an effect of giving everyone everything you’ve learned through your injury.” – Participant 5

Tips and Tricks

Participants shared tips and tricks on a variety of tasks, including things such as brushing teeth, using clamps or weights to provide counter-traction for 2-handed tasks, hanging wall art, opening bottles, and cutting meat (Fig. 5).

Fig. 5.

Examples of tips and tricks from the second-edition e-magazine. Fig. 5-A A demonstration of how to brush teeth without balancing the toothbrush on the counter. Fig. 5-B Use of weights to hold down fabric during quilting. Fig. 5-C A method for mounting a wall hook and nail. Fig. 5-D A tool used for cutting steak.

The Value of Photovoice

Throughout the interviews and group discussions, the participants discussed the indirect benefits of using a method such as photovoice. Using photovoice was seen as a way to remedy isolation, provide visual hope, and generate a powerful community (Table II). Participating in the project exposed patients to new experiences that provided a different perspective:

TABLE II.

Illustrative Quotes on the Benefits of Using Photovoice After a Brachial Plexus Injury

Why Photovoice?
Remedying isolation
“It blew me away to know that there were other people out here that have the same injury as I do. Doctors kept saying that “Oh, this is an injury that not too many people have.” Then at the first meeting, I met 6 people! That blew me away… It was therapeutic for me to see […] everyone, knowing that they have the same injury that I have and have gone over some of the same obstacles. It cheered me up.” – Participant 2
Seeing is believing
“I would love to be able to show the things I can do now that I didn’t think I would possibly ever be able to do.” – Participant 4
“I think hope is a very important word, especially at the beginning of it. I definitely lost hope for a while. Right? Once you see other people and you learn that you can adapt, you start to regain that hope” – Participant 1
Community is powerful
“[Outside of photovoice] you want to tell your story, but you don’t want to bore the people around you because they’ve lived through it too. To have new faces to talk to and tell about what I’ve experienced, and how it went, and the surgery afterwards, it’s rewarding.” – Participant 7

“It blew me away to know that there were other people out here that have the same injury as I do.” – Participant 2

“I definitely lost hope for a while. Right? Once you see other people and you learn that you can adapt, you start to regain that hope” – Participant 1

Discussion

Implementation of photovoice methodology in this patient population provided direct benefits through content creation and indirect benefits through generating a sense of community for the involved participants. While online forums and advocacy groups serve as sources of community¹⁶, the photovoice methodology may function as an additional avenue for connection between patients with chronic conditions. The content created and included in the e-magazines demonstrates that recovery after BPI is a dynamic emotional and physical process, which has also been highlighted in previous qualitative work^1,10,17. This work expands on our understanding of how pain, fear, and rebuilding self-trust and confidence after BPI are intimately intertwined experiences and are critical for health-care providers to understand when caring for patients with BPI.

Prior work has demonstrated the pervasive and instrumental role that pain plays in patients’ lives after BPI^11,17,18 and, unfortunately, that pain management remains nonoptimized and limited¹⁹. The present study provides visual examples with striking reflections on how pain has affected the patients’ physical and mental health. We believe that these findings are important in the surgical care of patients with BPI because patients may view pain, rather than physical function, as the most challenging and most important part of this injury to overcome. Pain and fear are not visible to others and are described by participants as having a multiplicative effect, creating a “fog” that patients felt they had to pull themselves out of. The presence of this fog was a mental hurdle created by a mix of depressed mood, fear of pain, and fear of the process of learning how to do things again. Neuropathic pain was a notable part of the experience of patients with BPI. While neuropathic pain may not occur as a result of other traumatic injuries, the rich information gleaned from our photovoice methodology is an example of the type of in-depth understanding that can be gained through PAR methodologies, which have clear applicability to other traumatic conditions as well. Photovoice provides a methodologic framework to encourage participants to self-reflect and share their authentic experiences, all while uncovering rich insights into the underpinnings of participants’ emotions and feelings.

In addition to providing the therapeutic benefit of individuals understanding their experience after BPI, the photovoice methodology also yielded 2 e-magazines that will be of use to patients with BPI and their support network. The findings resulting from our study demonstrated 2 key points about community: (1) having a BPI community helps eliminate isolation, encourages hope, and can be socially fulfilling, and (2) patients with BPI frequently want to improve the lives of others through sharing their experience and knowledge. The importance of community has led to the creation of online forums and groups for patients with BPI to share their stories, advice, and questions^11,18. These forums have been noted to serve as a distinct source of support outside of family and friends after BPI. A particularly powerful moment occurred when 1 participant noted that the only person on the group videoconference who could not relate to their shared experience was the researcher. This was likely the first time that many participants felt as if their experience was the “majority” one. The sense of understanding across group members was powerful for members who had never met other patients with BPI because of the rarity of their condition. Some participants in the group took it upon themselves to connect with other members outside of the study setting.

The main limitation of our study is the lack of gender and racial diversity. While we used purposive sampling to maximize the heterogeneity of experiences, attainment of adequate gender and racial diversity was limited by the demographics of our practice at a BPI subspecialty center and our ability to contact UBPN members. An additional potential limitation of our study is the heterogeneity of our participants’ injury patterns and characteristics. Unlike quantitative work, this qualitative work relied on creating a heterogenous study sample to capture a wide range of perspectives on a shared experience. Future studies with more homogeneous cohorts may be considered in order to generate more findings that are more readily applicable for those treated at such specialty centers. We understand that our findings reflect only the experience of the participants involved, but we believe that the findings are likely to be appreciated and understood by other patients with BPI, given that many of these topics have been described using other nonvisual qualitative methods. Our study provides a template for further work to understand the experience of patients with other conditions as well. While the exact themes may not be universal across conditions, this methodology has potential to enrich surgeons’ understanding of patient experiences and to tailor our treatment strategies accordingly.

In conclusion, this photovoice study demonstrated that patients with BPI experience complex mental and emotional changes through the course of their adjustment to life after injury. Photographs served as a medium to share how these changes have influenced the lives of 7 people living with a BPI. Community and shared understanding serve as powerful therapeutic tools in the lives of patients with BPI. We can begin to understand and successfully share patient experiences with physicians and researchers through use of qualitative techniques new to orthopaedics.

Supplementary Material

Appendix

Supporting material provided by the authors is posted with the online version of this article as a data supplement at jbjs.org (http://links.lww.com/XXXXXXX).