TY - JOUR
AU - Mehr, David, R
AB - Abstract Objective To understand how patients’ use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. Design Qualitative substudy of the intervention arm of a randomized trial. Setting/Subjects Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. Methods The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. Results Discussions of photos elicited three overarching themes regarding patients’ lived experience with chronic pain: 1) patients’ redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients’ diminished ability to function. Conclusions Photo-elicitation is an innovative way to shed light on patients’ lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers. Chronic Pain, Primary Care, Lived Experience, Doctor–Patient Communication Introduction Pain is one of the main reasons people seek medical care [1]. In the United States, conservative estimates are that anywhere between 10% and 40% of primary care medical visits involve pain, or a variety of disorders chiefly manifested as pain, as their primary diagnosis [2,3]. Most painful conditions have an anticipated course and resolution, though a small percentage of these lead to a chronic pain disorder [4]. The scope of the problem at a population level is immense, and the burden of those affected by chronic pain is large, with estimates suggesting that more than 100 million Americans experience chronic daily pain [4]. With some variation depending on the source, chronic pain is typically defined as pain that lasts beyond three months or beyond the anticipated time of normal healing [5,6]. As such, we cannot say with certainty why and in whom it will occur. It defies naturalistic description, as there are few observable, objective markers. Chronic pain defies the notions of cause, effect, typical course, and restitution, as might be anticipated in other illnesses [4,7]. This contributes to the mystery and stigma of living with chronic pain; it is a singular, subjective experience, best described in phenomenological terms [8,9]. To date, phenomenological studies in this area have typically been small, and often conducted within a narrowly defined population [10–15]. Although best practice guidelines and recommendations involve a more comprehensive assessment of the experience of pain beyond just pain severity, most such assessments are underutilized and not well suited for primary care offices, where the majority of chronic pain is assessed and managed [16]. Even when initial guidelines were proposed identifying pain as the “fifth vital sign,” that was only as a starting point for a more involved conversation of the pain experience [17] that would subsequently lead to shared decision-making between clinicians and patients regarding pain management [18]. Patients could interpret these scales in widely varying ways, and the scales are subject to auto-correlation and habituation with frequent assessment. Conversations narrowly focused on pain severity and limiting that experience to ordinal scales are far too narrow to characterize meaningful healing relationships or to help us understand and impact the daily effects the condition imposes [7]. Mersky [5] suggests that in order to enhance the patient-centeredness between the patient and clinician, a deeper understanding of the lived experience of pain is necessary. To bridge the gap between the sometimes conflicting priorities of physicians and their patients, we must delve deeper into the life narratives of those living with chronic pain [19,20]. As powerful medical diagnostic and treatment modalities have emerged over the years, so too has the recognition that the direct experience of those living with chronic pain must be understood and accounted for to achieve optimal outcomes [21]. An emerging body of literature examines the lived experience of those who are forced to adapt to living with pain [11,15,20,22–26]. The purpose of this study was to explore what it means to “live with pain” by asking patients with chronic pain to share photos that capture their lived experience with pain with one another in a privately moderated Facebook group. Methods As part of a larger study exploring the impact of discussions regarding patients’ lived experience with pain on the doctor–patient relationship and pain-related outcomes, patients from across the country took part in sharing photos depicting their experience of living with chronic pain and discussed the experience—that is, what it means to live with pain—and its impact on their lives. This paper highlights the methodology used specifically in the Facebook/photo-elicitation part of the larger intervention study. Themes regarding the patients’ lived experience with chronic pain were derived from the photos shared and patient communications. This is a qualitative substudy of participants from the intervention group of a cluster randomized trial conducted in a practice-based research network. The Living with Pain (LwP) study sought to test an intervention that utilized photo-elicitation and online group support as a way to improve function among patients living with chronic pain. Patient participants shared photos with their doctors to communicate their experience of living with pain, and also their goals for function. They engaged with other patients living with pain in a privately moderated Facebook group, in which they were also encouraged to share their own personal photos with one another and discuss their experience living with pain, their care strategies, and their goals for function. Participants LwP was approved by the primary author’s university’s institutional review board (IRB) and the IRB for the American Academy of Family Physician’s (AAFP’s) National Research Network (NRN). The NRN recruited 18 practices (N = 18) via letter to join LwP. To participate, each practice had to commit to a goal of purposefully recruiting 18 patients each (projected N = 324) who met eligibility. Patient eligibility criteria included being between the ages of 18 and 75 years; having an established care relationship with their practitioner (having had at least two previous visits for chronic pain of at least six months’ duration); an ability to read, speak, and understand English; a willingness to sign a consent form; access to a device to take pictures (e.g., smartphone, camera, or tablet) and an Internet connection; and a willingness to participate in the online discussions via Facebook. Patients with a terminal pain diagnosis and/or a life expectancy of less than one year were excluded from participating. Using a phased implementation design, practices were recruited and randomized into either an intervention or control group (nine practices in each group, with a goal of 162 patients in each group). For this substudy, we focused only on intervention group patients who were successfully enrolled in Facebook by the end of the second phase of recruitment and randomization (N = 55). Due to a variety of challenges enrolling patients in the Facebook group (to be discussed in depth in the Discussion section), this substudy sample (N = 55) did not include all eligible intervention group patients at the time of data analysis (N = 102); however, the number was sufficient for qualitative data saturation [27]. Patients who were from several regions within the United States had a wide variety of pain diagnoses (e.g., arthritis, fibromyalgia, chronic back pain, etc.), ages (mean age = 54 years), and races and ethnicities (86% identified as white, 2% identified as black or African American, 3% identified as having more than one race, 2% identified as Hispanic or Latino, 2% identified as American Indian or Alaskan Native, and 5% did not report their race or ethnicity). Patients also varied in terms of their education levels, access to the Internet, and their use and understanding of Facebook. Limited experience with Facebook created some recruitment challenges. About 50% of the participants in the group engaged in conversation with one another, and 30% of the participants actually shared photos that depicted their experience of living with pain. Over time, between 50% and 80% of participants viewed the discussions and questions asked by moderators, which were collected via the “seen by” feature in Facebook groups (i.e., when a member or moderator posts a comment or question, Facebook automatically tracks the people who view the material and provides a clickable “seen by” button to view who saw the information). Project Procedures Once eligibility was determined and consent was given a practice-identified study coordinator provided the patient with an overview of the study, including an overview of photo-elicitation (participants were informed that their own personal images could potentially be used for publication purposes at this time), a one-page instruction sheet for how to set up Facebook (for those who did not already have Facebook), and instructions for how to log in and join the group. The study group was a “secret” Facebook group, meaning that only invited persons could join. Patients also completed a demographics form via Research Electronic Data Capture (REDCap), a secure online application for collecting questionnaire and other data. Upon completion of the demographics form, an automated e-mail was sent notifying the primary author that a… potential Facebook group participant was ready to join the group. The primary author searched for patients in Facebook via their name and location or e-mail address. If patients were located using this method, she sent them a “friend request” and a separate Facebook message explaining the next steps for joining the group (privacy settings for a secret Facebook group will only allow group administrators to add members to the group). If patients were not found on Facebook, the primary author sent them an e-mail explaining the steps to setting up a Facebook account and logging in and asked them whether or not they were listed on Facebook under a different alias. The primary author also included a direct link to her Facebook page (a page set up specifically for this research project) for patients to send a “friend request” in order for them to be added to the group, if they preferred this route. Once patients were successfully added to the group, they were asked to introduce themselves via a welcome post from the primary author. In this post, they were directed to the group rules, as well as a “meet the facilitator” video pinned at the top of the page. The primary author asked other members to join her in welcoming the new patient to the group and encouraged them to actively participate in the discussions. From there, the primary author moderated the LwP Facebook discussions with the assistance of a patient-moderator (a study nonparticipant who was also living with pain). All discussions occurred within the study’s Facebook group wall, and patients shared their own personal photos and stories about their pain experience via this group wall. Both moderators (the primary author and patient-moderator) posed questions to the group and asked members to share the photos they showed their doctors and also reflect on the experience. After patients introduced themselves and shared photos, the moderators asked questions about their photos. Some examples of questions include: how the photos captured their pain intensity and their ability to function with pain; how patients felt their participation in the group was helpful or not helpful; and questions specifically regarding patients’ pain intensity and strategies for care. Moderators also asked patients to share photos that captured their experience with living with pain, which included photos that depicted what mattered most to them in regards to their health and ability to function through the pain, photos that represented something their doctor had or had not done to address their needs as a patient, and photos that depicted their goals for function. The primary author facilitated discussion of photos using a variation of the “SHOWeD” method, which is a well-established semistructured guide to facilitating discussions about participant photos [28]. SHOWeD is an acronym that stands for: What do you See here? What is Happening? How does this relate to Our lives? Why does this problem or strength exist? And what can we Do about it? Moderators used a variation of this method and tailored the questions to focus on the experience of living with pain. The moderators also asked other participants to respond to the shared photo and to share their reactions or similar experiences. As part of the larger LwP study, patients were compensated $100 (one $10 payment at baseline data collection and three follow-up payments of $30) to participate. Data Analysis The authors used a thematic analysis approach to analyzing the qualitative data derived from the Facebook discussions, including conversations about patient photos. This form of analysis allows researchers to examine and identify similarities within the data to organize them into themes [29]. Qualitative data consisted of about 60 photos and 56 pages of downloaded Facebook discussions from the study’s secret Facebook group. Two coders (including the first author) used Dedoose (a qualitative data analysis program) to analyze the data and began by developing an initial list of codes (e.g., Function, Identity, Pain Acceptance, and Pain Management, Pain Intensity, etc.) as they related to the patient’s understanding of the lived experience of living with pain. The codes were reviewed and confirmed by the patient-moderator of the Facebook group, who also served as a co-investigator to this project. Using a constant comparative method [30], the coders went back and forth tagging codes to the data set (initial codes were applied 275 times, across 188 excerpts from the Facebook data), which were later reduced and organized into three overarching themes. A third researcher who was not involved in the research process reviewed the Facebook data, the original list of codes, and the final themes to ensure that the data matched the codes and the themes were consistent with both the codes and data. The final themes were again confirmed by the patient-moderator as a final form of member check. The three final themes are described at length below. Results Patients used the Facebook group to share photos that captured their daily experience of living with pain. In this process, they expressed being able to connect with others who shared similar challenges associated with living with pain and established a system of support they otherwise did not have. The following themes were derived from the photos and Facebook discussions: 1) redefined pain identity, 2) pain interference with enjoyment of life and activities, and 3) diminished ability to function. In sum, patients’ photos captured their previous identity and how they now redefined themselves as someone “living with pain.” Patients also shared photos that captured the intensity of their pain and how it interfered with their enjoyment of life and ability to do instrumental activities of daily living (e.g., interact with grandchildren, participate in exercise, drive). Finally, patients shared photos describing their loss of function after diagnosis and suggested some physical and cognitive strategies they used to improve their ability to function with the pain. We describe these themes in greater depth below and include key quotes and descriptions of the photos shared by patients. Select participant photos are also included to better illustrate the concept of photo elicitation and further emphasize the themes. The authors replaced the patients’ names with pseudonyms to protect confidentiality. Redefined Pain Identity The idea that people living with chronic pain will never experience life without pain was salient throughout the discussions and descriptions of the photos. Patients described how their pain experience is now part of who they are and how their process of managing a life with pain is their new identity. For example, Michaela, who currently lives with rheumatoid arthritis, stated that her pain is “always there” and is “never going away.” She shared a photo of a cartoon woman screaming as she described her pain. She said, “I feel [that this photo] explains what people with chronic pain live with… Some days the pain may be less intense, but it’s never gone.” She continued to discuss how the physical experience is so much of who she is, saying, “If I woke up and nothing hurt, I would really think I was dead.” She described being frustrated by the people who do not understand how central the actual physical intensity of pain is to her identity. Many in the group echoed this sentiment in their reactions and described having to educate others in order for them to understand their new pain identities. For example, Shelly, who lives with fibromyalgia, shared a photo of a woman being ripped apart, as she described how her pain identity leaves her feeling empty. She said, “This photo is so powerful to me… Sometimes I feel like someone is ripping me apart… the pain takes away from caring me [about anything]. When you fight for so long to get just one person to listen, to understand. Sometimes empty is all you have.” Some patients shared photos relating to their experience of losing their former identity as a person who is able to live their life pain-free. Michaela described this as “watching life pass you by.” Rhonda, a patient who lives with fibromyalgia, further emphasized this loss of identity by sharing a picture of children swinging on a swing set (this photo includes identifying information and therefore is not included in the figures), saying, “[This photo] of children playing reminds me how I am unable to go to parks with my grandchildren, and play with them like other grandparents.” Along these lines, John, who lives with degenerative disc disease and spinal stenosis, described his loss of identity when he shared a photo of a pile of tree limbs (Figure 1) and a photo of a hanging heavy bag (a punching bag). He said: The tree limbs have been sitting in that pile for 2 months, now. It used to be bigger, and I keep working at cutting them down…. That used to be about one day’s work…. The heavy bag used to be my favorite piece of exercise equipment. I was a martial artist for years, and worked out on that bag, daily. Now, it gets used by my children…. I have tried to use it once or twice and ended up lying flat for a day or two afterwards. He continued, “These pictures represent things I used to be able to do. Things that are lost to me, now…. Most days it’s ok that I’m not able to do this stuff anymore. Some days, however, it’s just not a comfortable place, emotionally, to know that things I loved to do are beyond my abilities.” Figure 1 View largeDownload slide Photo of Limbs. Figure 1 View largeDownload slide Photo of Limbs. Pain Interference with Enjoyment of Life and Activities Patients also used photos to emphasize their pain intensity and how it interferes with their daily life. In particular, Rachel, a patient who lives with fibromyalgia, shared a photo of rocks and a photo of a fictional patient getting a shot to describe her pain intensity and underscore how it affects her mental health. In describing these photos, she said: These two photos represent the different pains I have from day to day. It can feel like I’m a rock…very stiff and tense. It’s sometimes like I’ve been beaten by rocks and then jabbed by something else right afterwards…. There are days it feels like I’m getting painful shots all over my body over and over again…. I’ve always felt bad about my pain interfering with my life, and how no one believes me. She continued, “I haven’t been on [the group] for a while now because I’ve been struggling with major depression because of my [pain], and I don’t know what else to do. I feel like I’ve tried everything…. Everything seems to be getting worse instead of better…. I feel disgusting.” Like Rachel, Adrienne posted a before and after picture of herself (this photo includes identifying information and therefore is not included in the figures) to reflect the impact of fibromyalgia on her physical features in just a day’s time. In describing this photo, she also emphasized the physical effects of her pain intensity, as well as the psychological impact. She said, “When a fibromyalgia flare starts [it causes] extreme fatigue…can’t sleep, cognitive issues, feeling like I have the flu, high blood pressure that plummets whenever it feels like…. When [people] say I don’t look sick, that is what I look like under all of my makeup and a fake smile. Don’t judge a book by its cover.” She continued to say that, during flare-ups, “my left eye gets so puffy and becomes lazy” and asked the group whether anyone shared a similar experience. A couple of patients shared pictures of fire to describe their pain intensity. Sarah, who lives with chronic neck and back pain, shared a photo of the flames of a gas burner (Figure 2) with the group and said, “back, shoulders, neck on fire today.” She further emphasized that holding her grandchild increased her pain intensity and equated this pain to the burns one would receive after touching the flame on the burner. She said, “You know that if you touch the flames it is going to burn you…. Every time I pick up the baby, I know my back and neck is going to feel like [fire].” Gloria also used fire to emphasize how her pain intensity resembles burning. In doing so, she described a photo of a fictional woman’s figure on fire, saying, “This is how I feel right now…had to reschedule my cat scan until tomorrow…no pain meds. Prayers needed.” Similarly, Paula described her pain intensity by sharing a photo of a flaming volcano and said: Sometimes things are just simmering below the surface, but are manageable. On a scale of one to ten my pain is a six, today. Not simmering, but not bursting into flames…. Some days the volcano is quiet, and beautiful to watch. Other days it is an erupting, angry mess. The [photo] gives me a visualization that I can mentally manipulate to help me ease the pain when it gets [intense]. Paul, who lives with chronic neck pain, shared a photo of a skeleton with a knife in its back, and emphasized how the knife relates to his stabbing, sharp pain intensity. He also described how the photo represents his feelings of betrayal, as if the pain was “stabbing him in the back” and “owns his life.” Similarly, Michaela also shared a photo of a skeleton leaving a body to convey her pain intensity. In describing the photo, she expressed, “Some days the pain is mild…but some days the pain is so bad you just lay in bed and try not to move… When the pain is excruciating, I would do anything to be able to leave my own body.” Figure 2 View largeDownload slide Burning Flames. Figure 2 View largeDownload slide Burning Flames. Finally, Lauren, who lives with fibromyalgia, shared a photo of the Tin Man to describe her pain intensity and the stiffness that accompanies a fibromyalgia diagnosis. She expressed, “So stiff this morning and feeling contained by the pain…. There isn’t anything that consistently helps…. Life goes on regardless of the pain level.” Kara, who also lives with fibromyalgia, related to Lauren’s photo and responded, “I say that I feel like the Tin Man all of the time. Mostly in the morning, [when] I need oil for my joints.” Diminished Ability to Function Patients used the group as an opportunity to discuss their loss of function as a result of their pain conditions. They shared photos that not only captured their thoughts and feelings regarding their loss, but also their strategies for improving or maintaining function (subtheme). For example, Rachel shared a photo of a bathtub (Figure 3) and said, “This picture is something I can’t do anymore due to my fibromyalgia.” She continued, “I can no longer get in and out of the tub because it makes me hurt trying to use my muscles to hold myself up. So, I take showers all the time.” She proceeded to explain that due to her pain she has breathing problems and is unable to clean the house or walk longer distances. She ended with, “To me a good day is a day I’m able to do self-care without pain, such as shower, or even brush my hair and teeth…a day I am able to go to work and work a full day. It’s the simple things I consider a good day.” Figure 3 View largeDownload slide Bathtub. Figure 3 View largeDownload slide Bathtub. Along these lines, Jeannine, who lives with fibromyalgia and osteoarthritis, shared a photo of her arm with scrapes on the forearm (Figure 4). In describing the photo, she explained that she was trying to move a portable air conditioner, and due to her lack of strength she dropped the unit and it scraped her arm. She expressed, “This just proves how I lost my strength…. I was taking out my AC and couldn’t hold it anymore. I’m very sad about being in so much pain that I can’t do what I used to be able to do.” Similarly, Rhonda reiterated her loss of function when she shared a photo of a car ad and said, “This resembles another one of my losses…. Due to [my pain] I can no longer drive because my legs aren’t able to move fast.” She proceeded to discuss how it has been difficult to accept these physical limitations as part of who she is now, living with pain. Figure 4 View largeDownload slide Scrapes on Arm. Figure 4 View largeDownload slide Scrapes on Arm. Finally, Gregory, who lives with spinal stenosis, reflected on how living with pain impacted his ability to function in the workplace, which ultimately led to the loss of a job. In describing this loss, he expressed: The main thing that bothers me now, and then, is that I was at the top of my game when everything started falling apart. I was working with the oldest and most respected Union HVAC company in [town], I had climbed the ladder to the point where I couldn’t go any higher until someone retired…. I was making twice as much money as most the people I knew, that bragged about their college educations [before the pain]. Improving and Maintaining Function Patients also shared photos that revealed their process for maintaining function. For some, this meant actually participating in physical strategies that helped improve their function. For example, Sarah expressed that participating in exercise helped maintain her physical function, and she shared a photo of a Fitbit activity tracker to describe what she and her doctor agreed on as far as increasing physical activity. She said, “I went to the doctor’s office today. I told him my pain has increased since we have been babysitting the grandson. He asked what I needed to do about it. I bought a Fitbit and light weights to increase my strength.” She continued, “I am continually searching for new and different ways to keep myself as active as I can be, and to try to live a useful life.” Likewise, John shared a photo he took of a bench (Figure 5) to describe how he is able to function with the pain and said, “This is one of the ways I take care of myself…. I have about five [benches] scattered around my house…. [They] prolong my ability to do [chores], so that I don’t feel like I’m not pulling my weight around the house.” Figure 5 View largeDownload slide Bench. Figure 5 View largeDownload slide Bench. For others, having a positive outlook and reclaiming control over their pain were necessary for function. Along these lines, Gloria shared a photo of a mountain to describe how she mentally tries to improve function. She said, “When I am in a lot of pain I think of myself climbing a mountain…. [When] I get to the top and stare down, the pain is gone.” Similarly, John shared a photo of a wave and said, “I see myself as a surfer on the wave…. Some waves are bigger than others…. Some [throw] me on my butt, and I just hold on for dear life. This way I keep conscious of the fact that eventually the pain will subside…. Remembering to surf is important for me to get through the hard parts.” Finally, Paula, who lives with chronic pain due to a car accident, has more of a positive outlook on her pain diagnosis. She shared a photo of a bird flying above the ocean shoreline and said, “This is how I visualize myself, flying high over the ocean, warmed by the beautiful sunshine, where pain has no place in my ‘happy place.’” She further explained that having a positive outlook is what gets her through periods of high pain intensity. Discussion In this qualitative substudy, we examined patients’ lived experience with chronic pain as expressed via the sharing of photos in a privately moderated Facebook group. We found that participants were able to use their photos to connect with other patients living with pain, and conversations of their photos elicited three overarching themes that exemplify their lived experience with chronic pain: redefined pain identity, pain interference, and function. Asking patients to participate in the Facebook group is one part of an intervention to test the effectiveness of using photo-elicitation and online group support (Facebook) on patient-identified areas of function and the doctor–patient relationship. The Facebook group is designed to provide a system of support for patients and stimulate ideas for photos to share with their clinicians. Our findings contribute to the small but growing body of literature examining patients’ lived experience with chronic pain. Using photos to enhance understanding of their lived experience with pain while also connecting patients with others via collective photo-sharing (and thus, shared experience) is highly innovative and has implications for future practice. Images provide patients with a tangible object that could potentially break the verbal barrier that tends to exist between patients and clinicians when discussing how to treat chronic pain. These images help communicate a patient’s pain identity, how their pain interferes with their daily life, and their functional goals more powerfully than numbers could do alone. For example, many patients shared images of flames, knives, and other sharp objects to communicate their pain intensity. Their descriptions of their photos not only reveal the physical effects of chronic pain, but also the emotional and psychological burden, which cannot be conveyed by using the traditional numeric pain scale. Furthermore, a patient’s photos could highlight how their pain experience has become part of their identity, and as such, their goal is to learn to function with the pain, rather than eliminate it from their lives. Finally, it is understood that patients who are able to accept their pain are better able to manage the pain intensity and function while experiencing pain [31]. So, using photos to help clinicians not only understand this pain identity but also enhance the patient’s ability to accept their pain improves the doctor–patient relationship and provides the clinician with a better understanding of the true lived experience of pain. Our participants stated that this improved their acceptance of chronic pain and their function. Although beyond the scope of the current analysis, patients’ reported lived experience of chronic pain and its impact on their lives may strongly impact the quality of their interactions with the physicians that care for them, and the doctor–patient relationship generally. Primary care physicians report that they do not receive adequate training to engage patients with chronic pain optimally and find clinic encounters with them often adversarial and unproductive [32–35]. In earlier qualitative studies, primary care physicians reported concerns about the credibility of patients’ pain complaints [36]. Pilot interventions that promote shared decision-making and improved communication with patients with chronic pain, such as the activities we describe in this study, may improve clinicians’ confidence in treating chronic pain [37]. Limitations, Challenges, and Recommendations Due to a number of challenges associated with enrolling patients in the Facebook group, the sample size was small, though adequate for achieving data saturation. We were limited in terms of successfully adding members to the Facebook group because each patient had the choice of whether they would participate in this phase of the intervention, and they could choose how much they wanted to share, and when. Facebook also currently does not have a feature that shows when a person leaves a group; therefore, the group administrators were constantly having to go back and forth comparing the list of active members with their list of enrolled patients. A person could leave the group at any point in time; therefore, some patients had more or less exposure to the group discussion and were more or less engaged in the discussion. Participants in our sample were middle-aged adults, and many lived in rural areas of the country; therefore, for many, their ability to access Facebook was limited. Four in 10 older adults are smartphone users [38], and younger seniors use the Internet at rates similar to the broader population; however, we found that some of the older participants in this study did not have a Facebook account (or even know what it was) or a smartphone, and that they therefore had a limited ability to quickly get added to the group and participate. Furthermore, there was often confusion about what photos to share and how to share them within the group. Participants of the study were offered supportive tools on how to set up a Facebook page, as well as how to log in and post comments and photos. Included in these documents were group rules, which highlighted the issues of confidentiality and privacy (e.g., participant concerns about people within their social network viewing the material and postings shared in the group). Participants were frequently referred back to these rules throughout their participation. Additionally, the researchers wanted to allow participants to have complete creative freedom over what kinds of photos they shared, so example photos were not provided as to not skew their creative process. The facilitator who was living with pain, however, did get the group started by posting their photos and descriptions at the beginning of the study. Recent revelations about Facebook’s unauthorized sharing of data [39] have highlighted the importance of explicitly directing participants using a social media platform to its policies regarding how user information is kept private and how (if at all) that information will be shared and used by third parties. Typically, social media platforms do have the option to opt out of the sale of user information to third party users (though, it looks different for each platform), and recently, Facebook provided all of their users with clear guidelines on how to do this. Participants should be directed to the Facebook terms and conditions (which include language regarding privacy), but they should also be explicitly informed that it is their individual responsibility to manage their privacy settings within the platform. Finally, only about 50% of those who joined the secret group made contributions to the interactions we recorded. Although they had the opportunity to provide comments contradicting those of other participants, we assumed (lacking alternative information) that they were in agreement with the rest of the group. This may not have been the case. Participation in Facebook group discussions varies greatly between participants and tends to wane over time; moreover, participant characteristics associated with active participation are only beginning to be understood. Nonetheless, we observed qualitative saturation in the comments that were posted. In future studies, using a software product that performs social media analysis, such as Grytics [40], would allow not only analysis of the Facebook data but also tracking of the amount of time spent in the group, how many posts are made by each member of the group, and whether a person leaves the group. Moreover, although using a secret group setting protects the confidentiality and anonymity of participants, it makes it challenging to enroll participants as they have to be enrolled by an administrator (i.e., patients could not search for the group and join on their own). Because people can choose what their Facebook alias will be, searching for study enrollees by the administrator may be unsuccessful if, for example, a person has chosen to list their middle name as their last name on Facebook, or they chose a different Facebook alias altogether. We recommend sending patients a direct link to the administrator’s Facebook page and requesting that they send the administrator a friend request; the administrator can then easily add the patient to the group. Along these lines, we recommend creating separate Facebook profiles for the administrators and moderators, and we do not suggest using personal Facebook profiles. The authors also recommend providing group members with a tutorial on how to use Facebook, how to post comments, how to upload photos, and how to share with others in the group. 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Available at: https://grytics.com/ (accessed September 1, 2017). © 2018 American Academy of Pain Medicine. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)
TI - Exploring Lived Experiences of Chronic Pain Through Photo-Elicitation and Social Networking
JF - Pain Medicine
DO - 10.1093/pm/pny175
DA - 2019-06-01
UR - https://www.deepdyve.com/lp/oxford-university-press/exploring-lived-experiences-of-chronic-pain-through-photo-elicitation-ivDX8vDjk5
SP - 1202
VL - 20
IS - 6
DP - DeepDyve
ER -