“This New Chapter of Life”: Content Analysis of Facebook Posts After Traumatic Brachial Plexus Injury

Abstract

Background: After traumatic brachial plexus injuries (BPI), the sudden loss of physical function is often accompanied by psychological distress. Given the complex nature and relative infrequency of the injury, BPI patients will often use online resources for information about their injury as well as emotional support. Questions/Purpose: Recognizing the influence of social media, we sought to search a popular social media platform to identify challenges faced by BPI patients and strategies used to overcome these challenges. Methods: We searched “traumatic brachial plexus injury” on Facebook and selected the 2 most popular BPI support groups. We collected posts regarding traumatic BPI from November 1, 2018 through November 1, 2019. We performed inductive and deductive thematic analysis of the posts to identify recurring topics, knowledge gaps, and peer interaction dynamics. Results: We analyzed 7694 posts from the 2 Facebook support groups. The following themes emerged: (1) BPI patients express discontent regarding the inability to use their arm and the slow or stagnant pace of recovery; (2) BPI patients are frustrated over their inability to retain their preinjury livelihood; and (3) BPI patients emphasize that acceptance and moving on are key components of adjustment to their condition. Some patients described the role of limb amputation in achieving these goals. Conclusions: Our analysis demonstrates the areas in which BPI patients are in need of emotional support. Adjustment to BPI might be facilitated through multidisciplinary care that addresses emotional aspects of recovery and emphasizes self-management skills, in addition to the traditional focus on physical function.

Introduction

Traumatic brachial plexus injuries (BPIs) are often devastating and life-altering, as patients experience neuropathic pain and substantial loss of function in their upper extremities. Like other patients who have undergone traumatic injuries [1,4,10,14], BPI patients suffer from symptoms of psychological distress, such as depression, anxiety, and post-traumatic stress disorder. These psychological complications have the potential to affect the patient’s physical recovery and their overall quality of life [19,21,22]. Prior analysis of Internet message boards has demonstrated that BPI patients often turn to online communities for support and information regarding their experiences and difficulties during recovery [3]. Since the completion of the prior study by Morris et al [16], BPI online conversations have shifted from independent message boards to Facebook. Through thematic analysis of posts in Facebook BPI support groups, we aimed to (1) identify specific challenges that BPI patients face and (2) strategies that patients have used to overcome those challenges. A greater understanding of the BPI patient experience is needed to identify areas for improvement in delivery of care, particularly for the referral and provision of social support and mental health services.

Methods

Following approval from our institutional review board, we analyzed posts from 2 publically visible Facebook support groups for BPI patients. In order to identify support groups for analysis, we searched the term “traumatic brachial plexus injury” on Facebook. Two support groups, Brachial Plexus Nerve Injury and Erbs Palsy Support Group: UBPN (UBPN) and Brachial Plexus Injury Awareness (BPIA), were selected for analysis, as they had the largest member counts and were the most active. Posts regarding BPI patient experiences and treatments were collected from November 1, 2018 to November 1, 2019. All subsequent comments in each thread of posts were also analyzed. Posts referring clearly and strictly to BPI birth palsy, purely social in nature, reposts of previous posts, or written in a language other than English were excluded from analysis.

Once all relevant posts were collected, posts and comments were de-identified of any information that could be used to identify the creator. In addition, any information of, or reliant on, the poster’s age, gender, or personal Facebook profile information were also removed and not considered in analysis to ensure privacy of the group members. Names of post creators and commenters were removed from collected data and replaced with a unique identification number. The only names that were retained were those that were relevant to the information such as the names of health care providers, business owners, or public figures. Images and videos were removed and replaced with brief descriptions describing the content of such materials.

All de-identified information was uploaded into the qualitative data analysis software NVivo12 for coding. Based on established qualitative research methods, inductive and deductive analysis of the collected information was performed through a collaborative iterative process. A codebook was first developed that consisted of common themes found when initially collecting posts. Coding was then performed by marking and linking relevant information with their respective code(s). Each document was coded independently by 2 coders. Discrepancies between coders would be resolved in a reconciliation process. Group discussion by the study team was used to organize the codes into themes. In accordance with standard qualitative research methods, analysis was conducted until data saturation had been achieved.

Results

Of 7694 posts analyzed from the 2 Facebook support groups (UBPN and BPIA), 5504 (71.5%) posts were collected from BPIA and 2190 (28.5%) posts were collected from UBPN.

BPI patients express discontent toward their disability and unsuccessful procedures. BPI patients in Facebook support groups often discuss the difficulties they face and seek advice or support from their peers. Contributors frequently expressed distress due to their injury and resulting disability. Usually, these were individuals who recently suffered a BPI and had difficulty learning to adapt to living with limited or no function in their arms (“I have a wife and 2 kids. So no income and I’ve got 3 dependents. I know how you feel. How do I provide. How do I teach. How do I love.”). However, individuals who were several years into their recovery had also expressed a similar or even greater level of distress with their injury and disability. These individuals often posted of their frustration with their recovery and the ineffectiveness of their surgeries or other recovery efforts (“I’ve tried every available means at achieving relief on my quest . . . I feel like I’m at the end of the road in more ways than I care to admit”). A common sentiment was a sense of stagnancy as a result of their slow recovery and state of disability (“I’m not used to being stuck in one place . . . . I’m used to being on the go and working and helping people and now I can’t even button my own pants”).

BPI patients expressed frustrations over their inability to retain their preinjury lifestyle. Another common trend in posts from members of these support groups is the discussion of aspects of their lives before their injury. Most commonly, people would discuss activities that they would engage in before they had sustained their injury and lost function of their arm. In some instances, these posts would consist of an individual reminiscing of their past (“I still remember all those beautiful days that I have lived before injury. I started my job at the age of 18. I started working as a teacher”). However, patients in most of these posts would describe of their desire to return to their preinjury life with a sense of distress or bitter nostalgia:

Fashion was my life then. It was my greatest form of self-expression, it was my art. It may seem trivial to some but for me losing the use of my arm along with having to wear an ugly, uncomfortable, outfit-ruining, single-function arm sling added to my grief.

Patients engaging in such discussions would often express the most despair, as they would write of their unsuccessful attempts and years of waiting to regain full function of their arms:

It’s driving me mad I can’t drive, ride my horse, struggle to dress myself, cook, and get weak very easy. Is there light at the end, I just need to know the truth from people who are in the same position as me.

BPI patients express that acceptance and moving on is key to recovery. There were also many members of the group who had much more positive outlooks and experiences with their injury. These individuals had optimistic viewpoints, discussing their proficiency with specific activities and adaptation to life with their injury (“I had accepted that it will never work again. So why waste energy into thinking it might. Life is so short so I just crack the f**k on. 20 years in I don’t remember being any different”). Such posts would discuss how the individual has overcome their injury and found a new path in life. Often these new paths would be a new career, lifestyle change, or general change in their perspective toward their injury (“The quicker we get out of our own heads the better . . . As soon as you are able get out. Go for a walk. Do something, ANYTHING! Take a class, learn new skills”). Mentions of religion and faith were also prevalent in these posts (“The healing I’ve received from God has been the most important”). These individuals also commonly expressed the sentiment that acceptance of one’s injury is key to moving forward in life and having a successful recovery (“Acceptance is huge in recovery. You will never be who you used to be, but there’s no limit with who you can be”). This type of behavior was frequently seen in patients who underwent elective extremity amputation. Posts from these individuals share a similar, positive sentiment and discuss how they have adapted to life with their amputation. Amputation is often discussed as a turning point in these individuals’ lives and there was no strong resentment against their decision to amputate:

I kept my injured arm for 8 years after my accident then had it amputated mid forearm as I had use of my elbow. No regrets, not for a moment. To me I was getting rid of a part that had died.

From what was seen in their posts, almost all their efforts were dedicated to learning to live, and even thriving, with their amputation:

I do more now than I did before with 2 arms. I still ride motorcycles with 1 arm. I wrench on bikes and cars still. I work in construction and lift heavy. I am one of the top adaptive crossfit athletes in the world.

Discussion

BPI patients used Facebook to express frustration, celebrate accomplishments, and encourage others. In our qualitative analysis, users who expressed frustration with inability to meet expectations and goals for physical function were also likely to demonstrate depressive symptoms. Depression and anxiety are relatively common among BPI patients [8,22] and may stymie a patient’s willingness to maintain optimism and stay engaged in their postoperative therapy. Lower patient self-efficacy scores were noted to have a negative impact on life satisfaction and functional outcomes in other traumatic conditions, such as spinal cord injury [18] and major limb amputation [2,12,15]. While not yet reported, it is plausible that the impact of these patient measures is similar among BPI patients. However, it is important that health care professionals treating BPI patients distinguish depressive symptoms from those related to grief and loss. In spinal cord injury patients, grief is relatively common [9] but can be differentiated from depressive symptoms [7]. In our analysis, it was apparent that BPI patients commonly express grief and loss for their limb after injury. The comparisons to the past and importance of adjustment seen in our analysis exemplify the cycle of grief expected after loss of limb function. Careful attention to grief symptoms, depressive symptoms, and their potential overlap is necessary to ensure that BPI patients receive the appropriate psychological support.

BPI patients who have accepted their condition, moved forward with their lives, and adapted to their condition conveyed more positive experiences. These findings suggest that adjustment and resilience are important areas to formally address during recovery from BPI. One method to empower patients is through chronic disease self-management programs, as has been done for other debilitating conditions such as stroke and spinal cord injury [5,17]. Self-management skills contribute to autonomy in managing functional deficits, evolving psychosocial factors, and the complexity of navigating medical care. Development of meaningful activities and roles is prioritized, which can maintain an individual’s sense of purpose [11]. Within the context of a multidisciplinary BPI team, self-management programs may be implementable under the direction of a hand therapist in conjunction with a mental health professional [6].

One relatively unexpected finding was the largely positive perception of amputation in the treatment of BPI. Elective amputation has not been frequently described in the literature as a treatment for BPI, although in our anecdotal experience, it is a topic that most BPI patients ask to discuss at some point during their treatment course. A recent case series from Maldonado et al [13] and narrative review by Siqueira et al [20] describe largely positive results from elective amputation after BPI, with both groups emphasizing that patients who are proactive in discussing and pursuing the procedure are the most likely to benefit from it. The reasons why amputation may help BPI patients are likely multifactorial and highly patient-dependent: the weight of a functionally limited or nonfunctional arm may be bothersome; shoulder instability or heaviness may be uncomfortable; or there may be psychological value in having an amputation expedite a sense of closure. Another consideration in the future will be the relative benefit of myoelectric prosthesis and targeted muscle reinnervation, particularly as the former becomes less expensive and more accessible to patients. One important caveat regarding amputation is that it is unlikely to alleviate neuropathic pain and phantom limb pain, particularly in patients with preganglionic root avulsions. While highly unlikely to emerge as a preferred treatment strategy, the experience of BPI patients who have undergone amputation merits further investigation given the positive sentiments seen in our analysis.

Our analysis of Facebook posts is limited by the content available from our searches. We used messages from the 2 most popular public BPI groups on Facebook, and it is possible that smaller groups or private groups may contain additional content that would add to our findings. However, it is likely that patients seeking information on Facebook are going to be begin with one of the 2 groups that we analyzed. Analysis of social media posts is also made more challenging because of the potential for misrepresentation (such as patients saying that they are doing better or worse than they actually are) and the inability or unwillingness to disclose other factors that may influence an outcome (such as severity of BPI or availability of financial resources). Future investigation may involve in-depth interviews or focus groups with patients interacting on social media platforms.

In conclusion, a sense of stagnancy and difficulty adjusting to postinjury life are common issues among BPI patients. If left unaddressed, these emotional states may have greater mental health implications as well as an impact on the life satisfaction. Multidisciplinary care involving coordination among surgeons, therapists, social workers, pain management specialists, and mental health professionals should be used to address all domains of recovery after BPI (Table 1).

Table 1.

Themes and selected quotes from Facebook BPI support group posts.

Theme	Quotes
Frustration/Sense of Stagnancy	I’ve basically fallen through the cracks these last 6+ months, being juggled between different surgeries and forced to go without pain medicine. But because I’ve tried literally everything else, I have no other choice. This is it. If my circumstances don’t change, at least I can say that I gave it my all and explored every option scientifically and medically available.
	I feel like I’m barely treading above water and any second my legs are gonna cramp up and you know how that metaphor ends. I’m just emotionally and physically drained.
	I understand feeling out of control. I spiraled hard into depression. This injury is not easy to deal with.
	Over the past four years I’ve all but exhausted every medically available options for pain relief. It feels hopeless.
	Everyday my day revolves around beating the extreme pain that just sleeping causes me, only to relive the same way the same day day in day out . . . #thisLIFEisgettingold
	I think if I’m honest things can seem a relentlessly unending state of low thoughts . . . I know I have felt really down at times and yes thought of throwing the towel in
	I’m constantly frustrated and deeply discouraged every time a different physician turns me away, feeling even more hurt, disappointed, and confused. They also offer no real explanation to why they have refused to tell me that they “won’t be doing my surgery,” or that I “waited too long.”
	I guess low-level grade depression is normal life for me TBPI 38 years ago. But I tailspin into a “diagnose-able” clinical depression about once a year, but don’t seek extra meds to treat it.
	I’ve had your EXACT INJURY and your EXACT PAIN since 1996. I have tried every damn thang!! I really don’t have any idea what to try. I firmly believe that this is an injury that NO ONE understands.
	This is not my fault I was butchered by a surgeon supposedly fixing me.
	After 6 month time passed, I again visited the hospital with zero recovery in my hand. I waited the whole day for my reports and I got a single sentence from my doctor. We are sorry [name] we can do nothing now you have to learn to make your left arm dominate arm. I was too frustrated hearing that sentence from the doctor.
	I’ve been dealing with all this since 2004. I am stuck in hell from it. My day is all about how to beat the pain just to relive the same way the next day. There’s no nope as no one in Delaware is qualified to treat this rare injury and being on state aid out of state places won’t take my insurance. I’m basically just forgotten about period and wouldn’t wish this injury on Lucifer himself.
Comparisons to the Past	I’m tired of hurting 24/7. I’m tired of this new chapter of my life. I know I sound childish but I want my life back that was before the chronic pain.
	Mine is a full left arm paralysis caused by a careless driver. It’s ruined all of my hobbies and I can no longer work as a mechanic. It’s rough and I feel the pain too.
	If there is a god why can’t we be cured.. why can’t we reset life.. it’s not fair.
	I often dream the accident over and over and I wake up at impact. I know I will never be the person I was the day before this injury and the pain is unrelenting.
	I used to bench 505 lbs; now a toothbrush is too much
	I used to do a thousand things a day! Multitasking tons of things! Now I’m at war in my own head!
	I’m happy and thankful to be alive don’t get me wrong. But all this not being able to work play with my sons do house work do anything really at all. Is driving me insane.
	I’ll spend the rest of my life grieving and coming to terms to this new world I’m living in. I wish it was just physical pain but it really affects you emotionally and mentally which is much worse
	I went from being to sole provider to not being able to contribute a dollar. My bills are slowly falling behind I just sit in the house everyday feeling sorry for myself that I messed up my life. I feel awful like I failed horribly.
	I am bpi from last three years and had a baby in June this year . . . There are weak moments, plenty of these.. when I take the corner of the room and keep on looking toward my baby and wishing badly for things to get corrected in the past. shedding tears in silence.
	My coping strategy is to just deal with the day ahead. Sometimes the hour. Looking back or forward tends to make me anxious and frustrated.
	I never realized how much I took for granted. Working, shopping, even driving can take a toll on you now that you’ve worn out your hands.
	I checked the pictures clicked on my sister’s wedding and I couldn’t find even 5 normal pictures.. I could myself see the right arm BPI haunting me. I guess only closeups are perfect place to hide out.
Moving on/ Acceptance	It’s ACCEPTANCE. When there’s acceptance there is no more fear and no more suffering and you just learn how to adapt to live with it.
	Acceptance is huge in recovery. You will never be who you use to be, but there’s no limit with who you can be.
	While realistically, there is a very tiny chance to be like how you were before, we can witness how some of the ppl in this grp achieve so much more mental strength, renewed confidence and improvisation to their daily lives—even when some of them chose amputation.
	I was fully avulsed at every root nerve. There was no nerve transfer of growth that would have made my arm move the way I would have wanted to. Plus with having to be fused from T2 to T9 and 3 fractured vertebrae my arm was just pulling on my back. So amputation was right for me.
	I just want to say I am sorry for those who felt that ‘amputation’ was the only way forward. I was told that I’ll never move my arm again, but due to my commitment and dedication, I have defeated science!
	I’m pretty pragmatic, been nearly 5 years now with no recovery except a little sensation in two fingers and palm of my hand that just registers as an increase in the phantom pain. Fed up of the weight hanging off me, having to wear slings, accidentally knocking/burning it. Time for the big chop.
	3 years ago I took the arm off hoping it would dull the fucked up pain. But it hasn’t. Tried every drug just about every one made for pain. And now when the pain is so bad it cripples me every few or every minute or two. The sort of pain that can drop you to your knees and just when you’re sure your heart is about to stop bang the pain eases.
	After speaking with my two doctors who have been with me every step of the way, they have both agreed to do my amputation, they understand that having this is more of a burden than anything. My amputation date is June 18th! Yes I know it’s very soon. Quicker it’s done, quicker I’m on my road to recovery.
	The first doctor I went to recommended I amputate way back 13 years ago before I went and had all the surgeries done in retrospect of course I probably should have life probably would have been easier.
	I did it and was the best decision I’ve ever made. Only issue is, I wish they would have taken more off. So freeing when you stand up and walk the first time after you have it taken off. So much straighter and feel so much lighter.

BPI brachial plexus injuries, TBPI traumatic brachial plexus injury.