http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(2): 135–143 ! 2015 Informa UK Ltd. DOI: 10.3109/09638288.2014.911971

RESEARCH PAPER

Psychosocial outcomes and coping after complete avulsion traumatic brachial plexus injury Lauren Franzblau and Kevin C. Chung Section of Plastic Surgery, The University of Michigan Medical School, Ann Arbor, MI, USA

Abstract

Keywords

Purpose: To understand psychosocial outcomes, coping and adjustment after complete avulsion traumatic brachial plexus injury (BPI). Method: We conducted a grounded theory analysis of 12 semi-structured patient interviews exploring psychosocial outcomes, augmented by quantitative evaluation of self-reported mental health and social functioning, body image and coping strategies obtained via three questionnaires (SF-36, Brief COPE and modified SWAP). Results: Subjects’ main sources of psychological stress were chronic pain, unemployment, decreased self-efficacy and social-emotional consequences of poor body image. One third of participants reported depression, half experienced anger and frustration and two-thirds were dissatisfied with the appearance of their affected limbs. Acceptance, active coping, planning and emotional support were the most frequently used coping strategies. Conclusions: Patients encounter high levels of physical and psychological stress after complete avulsion BPI and must find ways to cope to adjust to their injuries. They face similar challenges to patients with spinal cord injuries, for whom many models describing coping and adjustment exist. Similar models could facilitate more complete adjustment and rehabilitation of BPI patients and help to reduce the prevalence of negative stress responses, including anger and depression. Future patients would benefit from a multidisciplinary treatment program, involving medical and mental health services.

Adaptation, brachial plexus, outcomes, psychosocial factors History Received 16 December 2013 Revised 28 March 2014 Accepted 1 April 2014 Published online 22 April 2014

ä Implications for Rehabilitation  



Complete avulsion brachial plexus injury is not only physically disabling, but also creates multiple sources of psychosocial stress that patients must cope with and adjust to. Patients with brachial plexus injuries appear to experience an increased prevalence of psychiatric symptoms (e.g. depression) and follow a similar model of stress, appraisal and coping as those with spinal cord injuries. Providers caring for these patients should conduct regular screening for psychiatric symptoms and disorders, and refer patients for psychotherapeutic interventions (e.g. cognitive behavioral therapy) as needed to promote psychosocial adjustment.

Introduction The devastating effects of complete avulsion brachial plexus injuries (BPIs) are well documented and multiple procedures have been developed to address the physical deficits [1–6]. Nerve transfers (NTs) and functioning free muscle transfers (FFMTs) can restore basic functions, including elbow flexion and prehension [4,7]. Despite the achievement of good functional outcomes, patients return to work infrequently and experience poor body image, social anxiety and psychological consequences, which are often exacerbated by the financial strain of wage loss and expensive medical treatments [2,3,6,8]. Surgical intervention does

Address for correspondence: Kevin C. Chung, MD, MS, Section of Plastic Surgery, University of Michigan Health System, 2130 Taubman Center, SPC 5340, 1500 E. Medical Center Drive, Ann Arbor, MI 481095340, USA. Tel: +1 734-936-5885. Fax: +1 734-763-5354. E-mail: [email protected]

not address chronic pain due to deafferentation or prepare patients to cope with the psychosocial consequences of their injuries. Psychosocial outcomes and adjustment are poorly understood in the context of complete avulsion BPI, but have been shown to have a profound effect on the recovery and emotional adjustment of patients with spinal cord injuries (SCIs) [2,9,10]. SCI and BPI patients are remarkably similar. Both tend to be young men injured in motor vehicle accidents and both groups experience physical, financial, occupational and psychosocial consequences [6,8,11,12]. Multiple trauma victims of traffic accidents display an increased prevalence of four psychiatric disorders (depression, acute stress disorders, PTSD, driving phobias/anxiety disorders) [13,14]. SCI patients in particular experience high rates of depressive (30–40%) and anxiety (20–25%) disorders, which are examples of stress responses [10]. Multiple models and approaches for combating and managing the stress of trauma, chronic pain and disability are described in the literature. Evidence suggests that depression and anxiety

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Figure 1. Stress, appraisal, coping model of emotional adjustment (adapted from Galvin and Godfrey [10]).

triggered by traumatic injury can be treated using psychological interventions promoting the use of adaptive coping strategies that foster better psychosocial adjustment (i.e. the extent to which an individual reaches a ‘‘normal’’ state that does not require treatment) [9,10,15]. Galvin and Godfrey found the stress, appraisal, coping model (SAC), which incorporates individual and environmental variables, to be more applicable emotional adjustment following SCI than traditional stage-based theories [10]. Unlike stage-based theories, in which time since injury is thought to be a key determinant of adaptation and acceptance, SAC postulates that emotional adjustment is the product of an ongoing, dynamic relationship between the individual and environmental stressors that is mediated by continual appraisal (i.e. assessment of potential threats and availability/efficacy of coping resources) and coping (Figure 1) [10]. Coping is defined in the literature as purposeful thoughts and behaviors aimed at managing sources of stress or moderating one’s response to stress [15,16]. Individuals who appraise stressors as controllable and believe they are able to solve problems are more likely to achieve better emotional adjustment and less likely to be depressed than those who feel it is beyond their control [10,17]. In addition, coping resources including social support, younger age, health, education and employment are associated with better emotional adjustment and lower rates of depression among SCI patients [10,18,19]. It is possible that BPI patients follow a similar pattern of stress, appraisal and coping during recovery, leveraging the resources available to them. Despite the similarities between BPI and SCI patients, there is little research regarding psychosocial outcomes or coping after BPI. Identifying sources of stress, typical patterns of coping and psychosocial outcomes will enhance healthcare providers’ understanding of the patient experience and facilitate the development of comprehensive treatment and rehabilitation strategies for patients with complete avulsion BPIs. Psychosocial variables, coping and post-injury adjustment, however, are difficult to evaluate using quantitative methods, because they are interrelated and based on individual beliefs and emotions. Qualitative interviews provide a window into patient experiences and enable investigators to thoroughly examine relationships between psychosocial variables [20–22]. Therefore, we chose to take a

qualitative approach, supplemented with three patient-reported questionnaires. Our aims were to describe psychosocial outcomes, identify sources of stress and examine the use of coping strategies among patients in order to better understand the relationship between outcomes, coping and psychosocial adjustment after complete avulsion BPI.

Methods Between 2002 and 2012, 163 patients with traumatic BPIs were evaluated at a single academic health center. Of these, 23 fit the inclusion criteria (Table 1) and were contacted via mail. Twelve chose to participate (52%), four explicitly declined (17%), two could not make their study appointments due to health reasons (9%) and five did not respond to our attempts to reach them via mail or phone (22%). We concluded recruiting after 12 subjects, because we had reached saturation in our qualitative analysis (i.e. the point at which no new themes are emerging), indicating that we had obtained a sufficient sample for Grounded Theory methodology [22]. Table 2 shows the characteristics of the study sample. This study was part of a larger investigation of patient outcomes for this condition. Subjects received $100 VisaÕ gift cards to compensate them for their time. The Human Institutional Review Board of the University of Michigan approved all aspects of this protocol. Data collection We followed a primarily qualitative approach, using semistructured interviews to explore patients’ social, emotional and psychological experiences after complete avulsion BPI. We supplemented our qualitative investigation with three questionnaires, the Brief COPE, 36-item Short Form (SF-36) and modified Satisfaction With Appearance scale (SWAP), which is shown in Appendix 1. In the absence of validated questionnaires, we selected these three based on their use in similar study populations (i.e. those who experience similar sudden, lifelong changes in function and/or appearance). The Brief COPE is a 28-item survey that assesses how often participants use 14 coping strategies using a four-point Likert scale [23]. It has been administered to patients with SCI and

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Psychosocial outcomes of brachial plexus avulsion injury

Table 1. Inclusion criteria.

specifically included in the interview guide, as the Brief COPE already addressed the use of coping strategies and our purpose was to explore participants’ experiences from their perspectives, not to analyze their recovery and adjustment. These topics were therefore not discussed unless they came up naturally, which they did at least once in 10 of the 12 interviews.

At least 18 years old at time of recruitment Brachial plexus injury is complete (C5-T1) avulsion No confounding neuropathies, nerve palsies or congenital abnormalities affecting the brachial plexus region or arm Normal arm and hand function prior to injury Minimum of 1 year having passed since surgery (or injury for nonsurgical patients)

Table 2. Participant characteristics and demographics. Age (years) At time of injury Current Pre-injury Occupation Construction/Home Improvement Truck Driving Other physical work Other non-physical work Unemployed Injury mechanism* Motorcycle accident 4-wheeled motor vehicle accident Snow mobile accident Other (fall, football tackle) Treatment Reconstructive Surgery (FFMT or NT) Other (Amputation, Conservative) Time Since Injury (years) Marital status* Single Married Divorced Widowed Education level Some college or Associate degree High school graduate or GED Technical school Less than high school graduate Income* Less than $10 000 $10 000–$29 999 $30 000–$49 999 $50 000–$69 999 More than $70 000 Length of interview (min)

29 (4–58) 37 (25–66) 4 2 4 1 1

(33%) (17%) (33%) (8%) (8%)

5 3 2 2

(42%) (25%) (17%) (17%)

7 (58%) 5 (42%) 7.8 (2.3–24) 7 3 1 1

(58%) (25%) (8%) (8%)

8 2 1 1

(67%) (17%) (8%) (8%)

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Data analysis Analysis of qualitative data followed Grounded Theory, which requires investigators to abandon hypotheses at the onset of coding so that the themes and theories that emerge from the coding process reflect participants’ experiences and not researchers’ preconceived ideas [22]. Coding is an iterative, inductive process, in which investigators identify and label concepts and themes with codes, and then organize, relate and assess the incidence of these codes to describe participants’ experiences [20,22]. Two members of the research team coded interview transcripts independently to minimize bias [20]. They began with open coding, which involves careful reading and coding of important and recurrent themes [22]. Subsequently, they identified relationships between codes and organized codes into a codebook [22]. Throughout every stage of coding, the two coders met to reconcile inconsistencies, confer about emerging themes and associations and revise the codebook. When no new themes emerged (i.e. the saturation point had been reached), they met to finalize the codebook before applying it to all transcripts to examine the prevalence of themes and select representative quotations for this article [20,22]. In light of this study’s aim to describe the patient experience and due to the small sample size, our analysis of questionnaire data is purely descriptive. We examined utilization of the 14 coping strategies in the Brief COPE, the prevalence of body-image related assessed by the modified SWAP, and mean mental health and social functioning domain scores from the SF-36.

Results 1 6 3 1 1 47

(8%) (50%) (25%) (8%) (8%) (16–104)

*Percentages do not add up to 100% due to rounding. All participants were male. FFMT ¼ functioning free muscle transfer, NT ¼ nerve transfer.

cancer, and has been validated among those with burn injuries [9,24,25]. Galvin and Godfrey recommend the Brief COPE for assessment of coping in SCI patients, who experience similar challenges to BPI patients [10]. The SWAP measures satisfaction with appearance, social discomfort and interference with relationships resulting from altered body image on a seven-point Likert scale. It was originally designed for and has been validated among patients with burn injuries, but has also been adapted for and administered to patients with systemic sclerosis [26–28]. We included the SWAP because hand aesthetics after traumatic injury are known to be a source of social anxiety [16]. The SF-36 is a widely used instrument that assess overall mental and physical health and can be used as a screening tool for depression [29,30]. After completing the questionnaires, subjects participated in semi-structured one-on-one interviews that focused on post-injury psychological, social and emotional outcomes (Appendix 2). One member of the research staff conducted all interviews for consistency. Interviews were audio recorded and later transcribed verbatim. Coping and psychological adjustment were not

Our analysis of the interview transcripts revealed five categories of themes relating to psychosocial outcomes: physical changes (ability, pain and energy level), psychological and emotional effects, altered self-image (body image, self-efficacy and selfesteem), social effects (relationships and socialization) and coping. All participants reported good health prior to BPI and physical disability post-BPI that disrupted their work, leisure and daily activities. Ten subjects experienced chronic pain, which contributed to their disability, and six described a decline their everyday energy levels after their injuries. The interviews revealed many sources of stress, including pain and disability, as well as increased reliance on others, unemployment, financial instability and dissatisfaction with aesthetic appearance. At the time of the interview, seven participants were unemployed; four were pursuing technical, undergraduate or graduate degrees; and one had retired. Sources of stress and stress responses The sudden loss of ability provoked an anger response in six subjects immediately after BPI, and four continued to experience anger and frustration throughout recovery in reaction to their inability to accomplish tasks or participate in their usual activities (Table 3). Four participants experienced symptoms of depression, which were confined to the early stages of recovery for three (Table 3). SF-36 domain scores fell below the norm, and five subjects scored below 45 in the Mental Health Component domain (Table 4). Hope for a ‘‘miracle cure’’ or future restoration of function was a salient theme that seemed to prevent

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Table 3. Remarks and representative quotes relating to psychological and emotional effects. Anger and frustration Six participants reported a period of anger or frustration following the injury or diagnosis. Four experienced anger and frustration throughout their recovery. ‘‘I was pissed off at the world pretty much. I went from 220 could do anything, lift anything, to I need help going to the bathroom. It’s like what the hell? And it sucked . . . but, I made it through it, coped with it, dealt with it, and don’t let it really get to me too much anymore’’ 35 y.o., no surgery, interviewed 13 years after injury. ‘‘At first you know I was like f*ck everything, I don’t give a sh*t no more.’’ 26 y.o., double FFMT, interviewed 4.3 years after injury ‘‘Some days you’re just bitter, mad at the world. Some days you’re just good to go, happy.’’ 31 y.o., FFMT, interviewed 6 years after injury ‘‘Cuss and swear until I figure it out on my own. Then if I can’t, I get help.’’ 26 y.o., no surgery, interviewed 2.5 years after injury Depression Four patients explicitly mentioned periods of depression, especially right after their injuries. ‘‘It was driving me to depression thinking about it, but I actually gradually learned to handle it.’’ 28 y.o., FFMT, interviewed 24 years after injury ‘‘I’ve had times where I didn’t want to live.’’ 48 y.o., FFMT, interviewed 10.7 years after injury ‘‘Now I just kind of go through the motions every day, you know? I don’t really have goals.’’ 51 y.o., no surgery, interviewed 7 years after injury ‘‘I knew exactly where I was going, what I was doing and it just seemed like everything was ripped out from underneath me and I’d never do anything of the things I enjoyed again.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury Hope Hope was a common sentiment expressed by 9 patients. For some, the hope seemed to be rooted in the belief that their condition is not permanent. ‘‘I am still hoping for some kind of miracle cure.’’ 35 y.o., no surgery, interviewed 13 years after injury ‘‘More treatments, more advances . . . I just have to wait until something new comes up and hopefully it can benefit me.’’ 31 y.o., FFMT, interviewed 6 years after injury ‘‘Well the hospital asked me about amputation and I told them no. They said it might lessen the pain a little bit, but I just couldn’t do it just in case they could replace it. Well, I could I have an arm someday if they could fix it.’’ 51 y.o., no surgery, interviewed 7 years after injury ‘‘I just hope that you know one day they’ll be able to cure this and fix it. Then it would give the person the life they had before.’’ 48 y.o., FFMT, interviewed 10.7 years after injury

participants from fully accepting the permanence of complete avulsion BPIs (Table 3). Dissatisfaction and insecurities regarding the appearance of the BPI lesion led to high rates of social discomfort around strangers, feelings of unattractiveness and relationship interference (Figures 2–4). Seven subjects also related social changes in the interviews (Table 5); frequently, the size of their main social groups shrank, but the quality of their relationships improved. Seven reported incomplete peer understanding of their situations, but, in general, did not feel that this detracted from their relationships with

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Table 4. Mean SF-36 scores for psychosocial domains. SF-36 Domain Mental Health Component Mental Health Social Functioning

Mean (Range) 49 (29–66) 47 (27–61) 45 (24–57)

Normalized SF-36 score ¼ 50. Standard deviation ¼ 10.

friends and family (Table 5). Only one participant described his circumstance as lonely because ‘‘they can’t really understand what [he is] feeling.’’ Dissatisfaction with appearance was one of many changes in self-image that arose during in the interviews (Table 6). Prior to their injuries, 11 subjects were very active through sports or work and were in good physical shape; after their BPIs, many mourned the loss of their pre-injury physique and fitness. All subjects were somewhat more dependent on others, which led to a reduced sense of self-efficacy in eight. Six reported a sense of loss created by occupational and financial uncertainty and seven had made major life changes (e.g. going to college, breaking up with a fiance´) or adopted new outlooks in response to the challenges created by BPI (Table 6). Despite the prevalence of psychosocial consequences, none of the participants reported using individual or group therapy. Two, however, felt that psychotherapy would have been helpful. Coping and psychosocial adjustment Participants reported using three coping strategies (Acceptance, Active Coping, Planning) at least a medium amount on the Brief COPE (Figure 5). Four coping strategies arose in the interviews: social and emotional support, acceptance, adaptation and active coping (Table 7). Participants described using social support to cope with physical challenges more often than emotional distress. Acceptance appeared to be pivotal in subjects’ recovery by enabling them to move on from their injury and begin adjusting to life after BPI, a process which was aided by active coping. Three participants reported actively looking for ways to manage or resolve the challenges presented by BPI and become better adapted. Nine participants adapted to physical challenges by learning to use one hand, using an adaptive device (e.g. onehanded keyboard), or by modifying the activity to accommodate their limitations (e.g. jogging with the affected arm in a sling).

Discussion Our cohort of 12 patients with complete avulsion BPIs revealed a complex set of psychosocial experiences – anger, depression, hope, shrinking social circle, lack of peer understanding and shifting self-image – that were not confined to a single time period or treatment group. Chronic pain, unemployment, financial instability, disability, social discomfort and poor body image are all sources of stress that patients must cope with. Participants mainly employed problem-focused coping mechanisms (i.e. those aimed at managing stress rather than modifying their emotional response to stress), such as planning. In SCI patients, problemfocused coping is associated with lower levels of depression and perceived life stress [10]. However, the benefits of these mechanisms may have been tempered by the reduced self-efficacy in our study sample; SCI patients with little faith in their ability to solve problems experienced more depression and emotional distress [10,17]. Koestler, in adapting Gatchel’s three-stage model of chronic pain to traumatic hand injuries, describes the progression from acute to chronic pain, which is interdependent with psychosocial variables, including perceived self-efficacy

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Figure 2. Modified SWAP: social discomfort.

Figure 3. Modified SWAP: satisfaction with appearance.

Figure 4. Modified SWAP: interference with relationships.

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Table 5. Remarks and representative quotes relating to social effects.

Table 6. Remarks and representative quotes relating to self-image.

Social life Seven participants experienced changes in their relationships or socialization after their injuries. Often times their primary social group shrank, but they felt the quality of relationships had improved. Two participants reported discrimination by peers or employers. ‘‘Now, I’m more content doing less, but being around the people I really want to be around.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury. ‘‘I always thought people looked at me differently but I think after time you figure if they don’t like you anyways then I don’t want you around me.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. ‘‘I get the people that want to talk s*** . . . I got called a one armed bandit.’’ 26 y.o., double FFMT, interviewed 4.3 years after injury. ‘‘I’m sure some employers - they don’t tell you during the interview, but I’m sure that [my BPI] might be the reason they don’t call me back after the interview.’’ 27 y.o., FFMT, interviewed 24 years after injury.

Self-efficacy All participants reported increased dependence on others. Eight had difficulty accepting this and some experienced a decreased sense of self-efficacy. ‘‘There are still times when I think I can do that and then I get there and I think how in the heck am I going to do that? I mean, hanging a picture. That’s fine except I can’t drive a nail into the wall because I can’t hold a nail and hold a hammer too. But it seems like it ought to be an easy job.’’ 66 y.o., amputation, interviewed 8.5 years after injury. ‘‘When I do need help, I have a hard time asking for it because I’ve always kind of been independent . . . I was the guy everybody used to call to come help them.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. ‘‘I have to accept different goals . . . I’m going to try harder than I ever have before and I’m going to get less than I did before. That is really discouraging.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury.

Peer understanding Seven participants felt that their peers could not fully understand what it is like to live with a complete avulsion BPI. ‘‘There are certainly things they don’t understand and never will unless they were in the situation.’’ 66 y.o., amputation, interviewed 8.5 years after injury. ‘‘The hardest thing to accept is the word ‘‘forever.’ I have people come up and say, ‘‘Oh I’ve broken my arm and I know how much it sucks.’’ It’s like no you don’t because you know you’re getting it back. The term ‘‘forever’’ is the hardest thing to deal with.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury. ‘‘Everybody asks, ‘What happened with your arm?’ And I tell them, and then when I see them again maybe a couple months later, they’re like, ‘You still got that sling on?’ And you know I’m tired of telling everybody what happened.’’ 26 y.o., double FFMT, interviewed 4.3 years after injury.

[16,31]. As pain persists, patients experience anger, depression and distress and eventually adopt a ‘‘sick role’’ that is reinforced by their social interactions and the feeling that they have little control over their condition or how it impacts their lives [16]. One-third of participants in this study reported symptoms of depression and five scored at or below 45 on the SF-36 MCS, which has been suggested as a cutoff point for identifying possible depression, but none had received psychotherapy [29]. This is a much higher rate than in the general population (9.0%) [32]. Soberg et al. [13] detected similarly high levels of psychological distress indicative of depression (27%) and post-traumatic stress symptoms (20%) in multiple trauma victims of traffic accidents. Among SCI patients, there is evidence to suggest that therapy and patient education about coping lead to lower rates of depression, anxiety and hospital readmission [10]. Likewise, patients with hand injuries who were educated about adaptive coping strategies reported less intense pain [16]. Lowering pain levels may also help maintain or improve mental health by removing pain as a constant reminder of the traumatic incident and contributor to posttraumatic stress [13]. Similar programs that encourage adaptive coping mechanisms could greatly benefit BPI patients and help to prevent the onset or worsening of psychiatric disorders, such as anxiety, post-traumatic stress and depression. Special attention should be paid to helping patients cope with the permanence of BPI. In this study, patients hoped for treatments to be developed in the future that could restore their function. Such hope could hinder

Body image Six subjects reported dissatisfaction with their body and feeling selfconscious. All were healthy prior to the injury and felt a sense of loss with regards to fitness and appearance. ‘‘I’m just real conscious of my arm and people looking at it.’’ 51 y.o., no surgery, interviewed 7 years after injury. ‘‘It still bugs me, the appearance of it . . . . It’s nothing like I ever used to look like. I wrestled for five years in school, I ran track, I played football.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. Changes in life plans and outlook Seven participants reported major changes in life plans and/or outlook. ‘‘My priorities have changed, I’m a fulltime student now. I never had planned for that. I had planned on doing what I was doing before for long term, so that’s kind of changed my perspective on things.’’ 34 y.o., FFMT and wrist arthrodesis, interviewed 3.8 years after injury. ‘‘Other people are so worried about the little imperfection they have. I’m like, ‘It’s not that big of a deal.’’’ 26 y.o., no surgery, interviewed 2.5 years after injury. ‘‘I was planning to get married. I had a fiance´e in Tennessee and when I got out of the hospital and went back home [1.5 years after my injury], well, she had different thoughts.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. ‘‘You can’t take nothing for granted. You really can’t. I never thought I’d have no function in my hand, in my arm . . . I can’t even wash dishes like I want to, even though I hate washing dishes. Certain little things like that. Just lifting your arm up period. I never thought I’d never be able to do that again.’’ 26 y.o., double FFMT, interviewed 4.3 years after injury.

acceptance, thus stalling psychological adjustment. Psychotherapy and support groups focused on instilling positive coping strategies to encourage acceptance, adaptation and ways to find fulfillment post-injury could vastly improve psychosocial outcomes and quality of life after BPI. Group cognitive behavioral therapy, which has shown promising results in SCI patients, may help promote coping and also provide social support [10]. Such opportunities for discussion and additional social support may be especially important for patients who do not seek surgical treatment. These individuals may have fewer opportunities to discuss their condition than surgical patients who attend regular follow-up appointments. We also recommend periodic psychological evaluation to screen for psychiatric symptoms and disorders, some of which can present up to 3 years after trauma [13].

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Figure 5. Mean use of brief COPE and coping strategies.

Table 7. Remarks and representative quotes relating to coping. Social and emotional support Seven participants reported getting support from family and friends. ‘‘You just have to keep looking and figure it out. You’re going to have good days and tough days but if you’ve got the determination and will power and some good friends and family, you’ll get through.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. ‘‘One of my friends [], left her job, left her place she lived in Florida and came to live with my family to help out for a month and she is an unbelievable friend of mine.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury. Acceptance Six participants mentioned using acceptance as a way to cope with their BPI. ‘‘If you don’t accept it it’s going to be harder. You’re only lying. It is going to be harder and it is going to be more difficult.’’ 25 y.o., double FFMT, interviewed 4.3 years after injury. ‘‘It’s either you deal with and move on or you might as well just take a 25 cent bullet and get it over with and stop waiting for people to wait hand and foot on you.’’ 48 y.o., FFMT, interviewed 10.7 years after injury. Adaptation Nine patients reported adapting to daily tasks and learning how to accomplish things using one hand. ‘‘I’ve just adapted, I have my own way of doing things . . . I drive myself I do everything independently that I did before.’’ 34 y.o., FFMT and wrist arthrodesis, interviewed 3.8 years after injury. ‘‘I usually just try to modify something and make my old [activities] work.’’ 26 y.o., no surgery, interviewed 2.5 years after injury. Active coping Three participants reported being proactive about their BPI and making plans to improve their situations. ‘‘What can we do about it? . . . it was the one way to kind of get past feeling bad about it. This is it. What can be done?’’ 25 y.o., double FFMT, interviewed 4.3 years after injury. ‘‘I’m trying to make my life easy. Stressing a lot about it would just restrain you.’’ 27 y.o., FFMT, interviewed 24 years after injury. ‘‘I got a new design for another arm sling because the one that I had is nice but when I jog and run, my arm just kind of plops around even when it’s in the sling.’’ 48 y.o., FFMT, interviewed 10.7 years after injury.

Participants in our study described using coping mechanisms to manage sources of stress and overcome negative stress responses, including anger. This relationship between stress and coping reflects the SAC process of emotional adjustment described by Galvin and Godfrey. According to SAC, mediation of stress via coping is essential to emotional adjustment, acceptance and preventing the onset of

psychiatric disorders [10]. Although this model may be applicable to the psychosocial adjustment of BPI patients, there is not sufficient evidence to support its use at this time. Further research involving larger sample sizes to investigate the mediation of the sources of stress and use of coping strategies identified in this study is needed before such a model can be adopted.

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Study limitations This study had a number of limitations. The small sample size is perhaps the most apparent and limits the reliability of quantitative findings. We do not feel that the gender homogeneity of the sample was limiting, because most BPI patients are men [6]. Despite having just 12 participants, we were able to reach saturation in our qualitative analysis and interviewing additional subjects will not significantly change our qualitative findings. The large proportion of non-participants, however, introduces response bias. Patients who chose not to participate may have experienced different psychosocial outcomes that affected their decision to participate. In addition, interview data were likely limited by recall bias (i.e. inaccurate remembering of past events, emotions and thoughts). However, we feel that the hindsight and subjective recollections of subjects are relevant to the objective of this study (i.e. to understand the patient perspective). Interviews did not focus specifically on coping and psychological adaptation, which is a limitation. If these topics did not naturally surface during the interviews, they were not discussed, which could lead to under-representation in the results even though coping was assessed by the Brief COPE. Finally, we included questionnaires that have not been validated in BPI patients.

Conclusions Complete avulsion BPI places a great deal of stress on patients that can hinder psychosocial adjustment. Although nerve and muscle transfers, the current standard of BPI treatment, can provide some relief from physical symptoms, these procedures alone may not be sufficient to help patients adjust to these devastating injuries. We encourage a multidisciplinary approach involving surgical, rehabilitative and psychological services, including screening for psychiatric symptoms and disorders, to improve psychosocial adjustment. In addition, we recommend further investigation of stress, coping and adjustment after complete avulsion BPI to develop a model that can be used to facilitate and guide successful rehabilitation. Understanding psychosocial outcomes and coping is the first step towards improving the treatment process and better serving the needs of future patients.

Acknowledgements The authors thank Lynda J. Yang, MD, PhD, for allowing them to contact her patients, Melissa Shauver for her guidance during the qualitative data analysis, and Mallory Maynard for her help during the coding process.

Declaration of interest The authors report no declarations of interest.

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DOI: 10.3109/09638288.2014.911971

Psychosocial outcomes of brachial plexus avulsion injury

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Appendix 1. Modified Satisfaction With Appearance (SWAP) scale In each of the following statements, circle the most correct response for you. The response choices are: 1 – strongly disagree 2 – disagree 3 – somewhat disagree 4 – neutral 5 – somewhat agree 6 – agree 7 – strongly agree.

1. 2. 3. 4. 5. 6. 7. 8. 12. 13. 14.

Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of my family. Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of my friends. Because of changes in my appearance caused by my brachial plexus injury, I am uncomfortable in the presence of strangers. I am satisfied with my overall appearance. I am satisfied with the appearance of my affected shoulder(s). I am satisfied with the appearance of my affected arm(s). I am satisfied with the appearance of my affected hand(s). I am satisfied with the appearance of my chest. Changes in my appearance have interfered with my relationships. I feel that my brachial plexus injury lesion is unattractive to others. I don’t think people would want to touch me.

1

2

3

4

5

6

7

1

2

3

4

5

6

7

1

2

3

4

5

6

7

1 1 1 1 1 1 1 1

2 2 2 2 2 2 2 2

3 3 3 3 3 3 3 3

4 4 4 4 4 4 4 4

5 5 5 5 5 5 5 5

6 6 6 6 6 6 6 6

7 7 7 7 7 7 7 7

This survey has been adapted from Lawrence et al. [27]. Items 1–3 and 12–14 were adapted from Blades B, Mellis N, Munster AM. A burn specific health scale. J Trauma 1982;22:872–5. Copyright 1982 by Andrew M. Munster. Adapted with permission.

Appendix 2. Topics covered in semi-structured interviews      

Injury and diagnosis Medical decision-making Functional and physical effects Social and psychological effects Perception of surgical outcomes (if applicable), including satisfaction with results and fulfillment of expectations Perspective of care, including doctor-patient communication, sufficiency of information, and discrepancies in patient and physician opinions of outcomes (if applicable)

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Psychosocial outcomes and coping after complete avulsion traumatic brachial plexus injury.

To understand psychosocial outcomes, coping and adjustment after complete avulsion traumatic brachial plexus injury (BPI)...
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