Study design

This is a qualitative interview study that explores the experience of changes in physical activity (PA) after a nerve injury in the arm and hand. Data was analysed using content analysis [16,17].

Research context and researchers’ position

This study was performed at two specialized hand surgery clinics in Sweden, both offering in-house rehabilitation for nerve injuries. Rehabilitation typically extends over long periods, sometimes lasting several years, to support functional recovery, however varies based on location and individual needs.

The interviews were conducted by a physiotherapist and an occupational therapist, each with over 10 years of experience treating patients with nerve injuries. To avoid bias, none of the interviewers had previously treated the study participants.

Participants

Patients were recruited using a relevance sampling strategy [18,19] also known as purposive sampling [18] and identified in medical journals at Stockholm or Linköping hand surgery clinics. Eligible participants were individuals aged 18–75 years at injury, treated for a nerve injury in the upper extremity one to three years prior to the present investigation.

Participants with varying ages, sexes, and nerve injury locations (including injuries affecting the fingers, hand, forearm and shoulder region), were included to provide a broad spectrum of experiences, enriching the dataset. Additionally, individuals with varying prior experiences of PA were selected to ensure a diverse range of perspectives and experiences. Exclusion criteria were difficulties in communication in Swedish or English making an interview impossible.

Eligible participants were approached during outpatient visits or contacted by telephone. Twelve eligible participants could not be reached by mail or phone.

Oral and written information regarding the study was provided by the treating therapist and written consent was obtained from each participant before the interview was conducted. Participants ranged in age from 23 to 75 years, with a median age of 49 years (SD 17,81). All participants, but four with plexus injuries, underwent surgery in direct connection with their nerve injury; no participants underwent tendon transfers before interviews. Background data of the 20 participants are presented in Table 1.

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Table 1. Study participants (n = 20), injured nerve, injury site and participants not treated surgically at the time of injury.

https://doi.org/10.1371/journal.pone.0341801.t001

Data collection

A semi-structured interview guide was developed with questions about PA; level before and after the nerve injury and the possibility to be physically active today (1–3 years after the nerve injury). We conducted a pilot test of the interview guide with two persons and these interviews were also included in the study. Based on these pilot interviews, we made slight revisions of the interview guide to improve question phrasing and flow. The finalized interview guide is included as an appendix in the manuscript for full transparency. The interview guide was used to direct the interview towards different areas in life.

The interviews were conducted during the period 16 April 2021–8 January 2025 by the first author (LE), occupational therapist, or a physiotherapist and researcher colleague (JS) familiar with the patient group, study aim, and interview technique. Face to face interviews were conducted with four participants. All other participants were interviewed over the telephone due to location of living or Covid restrictions during the study period. The interviews lasted from 27 up to 72 minutes with a mean length of 44 minutes. Data collection ended after 20 interviews, as no new information emerged during the final 4–5 interviews. This indicated that data saturation had been reached, supporting the adequacy of the sample size for capturing the range of perspectives relevant to the study.The audio-recorded data was transcribed verbatim by LE, a medical secretary or an occupational therapist colleague not involved in other aspects of the study. The participants’ names and specific details in quotes were removed to protect the participants’ identities.

Data analysis

Initially, the audio-recorded data from each interview were transcribed verbatim and the interviews were read several times to enable the researchers to familiarize with the data. Data was analysed with qualitative content analysis [16,17] with the emphasize on experiences of changes in PA after nerve injury in the upper extremity. As a first step, each interview was analysed separately (LE, CMN, CT). The process started with identification of meaning units related to PA and the change in PA as expressed by the participants. The meaning units were condensed, interpreted, and labelled with codes close to the text trying to capture the essence [17]. Groups of codes were compared among the research group participants, and the interrelationship identified was used to create themes that encapsulated the commonalities found.

When analysing the codes, recurring trends from the participants’ wordings emerged, and these were either positive or negative features of experiences for being or not being physically active. The two distinct sides, whether to be involved in PA or not were identified and labelled as barriers and facilitators. Further analysis of the codes and content of barriers and facilitators resulted in the identification of subthemes. The interrelationship of the subthemes under each theme, were reviewed and discussed among the researchers until agreement was reached [16,20].

The analysis was an iterative work process, done in sequences of individual work by LE and followed by discussions in the multi-disciplinary research group, two occupational therapists and one surgeon with experience of qualitative research (LE, CT, CMN), to refine the analysis and ensure that the findings were grounded in data.

Ethical considerations

This study was conducted according to the ethical principles outlined in the Declaration of Helsinki (World Medical Association, 2008) and was granted ethical permit by the Swedish Ethical Review Authority, Dnr 2020−05884, Dnr 2021−04528, Dnr 2024-01913-02. The study was registered at clinicaltrials.gov, ID: NCT05080608.

Internal barriers and facilitators

The internal dimension of barriers and facilitators reflects participants’ challenges and inner strengths, with barriers often described as vulnerability, fear and worries. The days or weeks immediately following the injury were by most participants proposed as the utmost inactive and vulnerable stage. In the initial stage participants described to be lying in the sofa, often in front of the television the whole day. Fear was communicated to contribute to their sense of vulnerability, with concerns and worries about PA potentially triggering pain, exacerbating existing symptoms, or causing further harm to the injured limb.

P6 “I also had — I know — a fear of using my hand, like somehow, because it was a trauma, I was afraid that something might break” (Median)

This was similarly communicated after digital nerve injuries;

P3 “as if I touch something with the tips of my fingers, but feel it all the way … like a jolt all the way down to the palm of my hand. Because I’m so afraid of bumping my hand into something” (Digital)

In several cases participants became more aware of any physical danger after the injury. This fear even made participants hesitant to leave home or use public transport, limiting their ability to engage in previous activities or try new forms of PA. This sense of vulnerability led some individuals to use additional protective gear and splints. Along with this vulnerability, participants commonly described to be too tired, too exhausted, and too mentally affected to even consider to be physical active. When reflecting on their inactivity, participants consistently emphasized the nerve injury’s impact on the brain. The mental effects contributed to internal barriers hindering activity. One participant vividly described this shift as:

P18 ”No, but it’s more complicated — I’m definitely more tired now, and my brain has clearly been affected by all this, so I would say that fatigue is a major reason why my physical activity has decreased” (Plexus)

Additionally, participants reported that the injury led to negative psychological effects, reinforcing mental barriers to PA. Moreover, when participants labelled the injury as a very traumatic event this was contributing as an internal barrier. Some participants expressed that their life flashed before their eyes while injured. Such dramatic experiences were clearly mentioned especially after major nerve injuries, plexus injuries and concomitant major bleeding at the site of injury. In contrast, some described the initial postoperative period in a cast as a break or “vacation,” enjoying the lack of expectations to be active and feeling no urge to resume PA. Descriptions from participants with digital nerve injuries varied, and informants rarely saw the injury as life-threatening, though emphasized the mental and physical challenges of staying active.

P19 “I think it was the shock — one second I had all my fingers intact, and the next second, it was like, I had a lifelong injury […] I mean, the hardest part — I think maybe it took about six months before I could properly start gripping with weight-bearing. It just didn’t feel right, you know” (Digital)

Exhaustion, fatigue, passivity, and vulnerability lasted from days to years, with some still affected during the interview. In the acute phase, participants sought distraction from distressing thoughts and fear of pain. Additionally, reduced enjoyment led participants to abandon activities when they were unable to perform PA as before.

P12 “I’ve felt defeated and have given up both playing padel and golf. I’m not the kind of person who gives up, but I’m not going to keep doing something that doesn’t feel fun anymore, you know” (High median)

Similar expressions of lack of motivation were noted among participants with digital nerve injuries;

P14 “the injury became, like, a kind of a break [from PA], and then I didn’t really feel like I wanted to go back to it” (Digital)

Active participants, on the other hand, credited awareness from prior PA experience, and past injuries as key factors. These experiences were articulated as beneficial internal facilitators while adapting to prior activities;

P14 “when I came back from the hand injury I did a climbing training course that was very easy on your hands and I feel that I’ve become a lot stronger after that course, even though it was low intensity” (Digital)

As noted by formerly active participants, this could even facilitate engagement in new activities. Despite the grief of lost functions, prior PA experience was credited with facilitating an earlier return to activities. Despite prior experience with PA, participants reported abandoning their previous activities when faced with unfavourable outcomes. Meanwhile, others with pre-injury PA experience cited self-monitoring and progress tracking as internal facilitators. Observing the return of functions through self-monitoring was described as an internal motivator for maintaining activities. Prior exercise habits also facilitated activity adjustments, motivating participants to stay more active. Whereas prior inactive participants expressed doubt about returning to activities, pre-injury exercisers expressed greater belief in their ability.

P14 “I feel that I’m probably also more, like, you become more resilient just because you stay active, and that maybe it’s easier to bounce back” (Digital)

Several participants identified PA as promoting healing effects. When noticed, this too facilitated motivation for an earlier return to activities. Reasoned by one participant as:

P13 “I think the basic principles or the benefit that physical activity gives to mental health are as true if not especially true in this context. I think... Just sitting at home and waiting for it to heal … does not really do you any favors because this process is so long” (Ulnar)

In line with its healing effects, participants emphasized the potential of PA as a key component of rehabilitation after arm and hand nerve injuries.

Personality traits such as being stubborn or having a positive view, patience and constantly trying in life was discussed as valuable internal facilitators to stay active. Some of the traits were discussed to emerge from upbringing, nurture, and innate characteristics, all of which were identified as influential factors in determining whether someone is active.

P15 “my mother was really driven so that’s probably where I’ve gotten it from, the fighting spirit … it’s probably partly from mom … this sort of driven mind-set to never give up and to keep fighting” (Median & ulnar)

Active participants also expressed appreciation for their prior PA and the mind-set that comes with activating the body and challenging the brain physically, recognizing the internal mental facilitator for being active. Regardless of PA experiences feelings of worries about the future, and the new arm and hand abilities were internal obstacles. A lack of hope and increased anxiety were described as factors undermining the motivation to resume activities.

P5 “I was really anxious because I was afraid about what my future would look like after the injury I went through” (Median & ulnar)

Physical barriers and facilitators

The physical dimension of barriers and facilitators reflects the physical elements, and symptoms which influence the ability to stay active. All participants mentioned physical barriers as reasons for reduced PA. Various physical barriers for not being able to stay active after the injury were expressed in relation to the arm and hand and to activities being bimanual. Additionally, nerve healing was often expressed as an unchangeable physical barrier, with participants emphasizing that adapting to their new arm and hand would take time and delay their return to PA. In unison inability to perform hand-based activities was articulated. Reasoned by one participant as;

P13 “yeah I mean so many of my activities were hand based, you know so it was like cycling and backpacking are my two main things. And backpacking I think I can, I can do it now fine, and I could probably start try to cycle again I think I could start… “(Ulnar)

Symptoms were experienced even to the extent that participants stopped attempting previous activities due to reduced hand function. Frequently the concentration required to focus on hand function after the injury, was mentioned to affect physical ability.

P18 “it’s mostly that I have to concentrate on which damn muscles I’m trying to activate more than the physical effort itself” (Plexus)

Swimming, skiing, horseback riding were examples of activities participants mentioned giving up, due to not being able to use the hand and arm. One obstacle when swimming expressed from a participant with a plexus injury was the whole function of the arm. While for a person with a digital nerve injury a reason would more often be explained as the temperature of the water causing pain. This shift in not being able to use the hands in PA was further described to lead to poor fitness after the injury;

P10 “Before we used to go for a swim. It’s also things like this that are totally impossible today. But what we do now is that we go out for a walk. And that doesn’t really give you the same thing… but of course it gives you something. But it’s just not at all the same kind of thing as I did before and not as often because, I get really tired and then some days I have really bad pain in my hand” (Plexus)

In unison participants with pain expressed this as a major physical barrier for PA, and the reason for having a more sedentary lifestyle. Pain as a physical barrier was described to not only affect the hand and arm but the whole body after the injury.

P16 “Well, you were in pain and your arm was paralyzed, and at first, you didn’t even want to move the rest of your body, because that also felt uncomfortable” (Plexus)

Participants with nerve injuries in the arm and wrist level often described pain affecting all aspects of life, while after finger nerve injury pain was often linked to barriers of lack of grip function, sensation and specific activities. Lack of sensation and cold intolerance in the arm and hand were physical barriers universally mentioned to contribute to discomfort, avoiding PA or even resulting in staying indoors during cold weather. When a nerve in the finger was injured, participants particularly described avoiding using that finger, while with an injury to the plexus, the interpretation of temperature resulted in a physical barrier, causing a complete shift in PA. Pulsations and numbness were reported from participants with varying levels of nerve injury as adverse symptoms, which could escalate when being physical active.

P20 “No, I tried running one time … in the late autumn, then I ran quite a long way … a little over 10km but then […], haha, I have basic fitness level from boxing, but then I noticed that my whole arm, from the injury down to my hand had become numb” (Median)

Equally noticed by participants with a nerve injury more distally in the fingers;

P11 “I [thought I] should try to go play table tennis but it didn’t work. I played a little with my left hand and stuff, but it didn’t work because when I moved a lot, my hand started to pulsate” (Digital)

On the contrary others experienced the opposite with reduced pulsations and numbness when being physically active for a longer period of time:

P2 ”It lasts for maybe an hour or two afterward, when I have a calm moment where my hand feels okay — like, I don’t have that constant pulsation, and the numbness hasn’t been there, you know” (Ulnar)

Participants who experienced symptom relief in the hand found it easier to stay active. Several mentioned that engaging in PA not only reduced hand symptoms but also stress, furthermore, helping manage negative thoughts and alleviate pain perception. Participants found it easier to resume activities not involving the hands like walking. However, several faced walking barriers, often attributing them to the whole body being affected from the injury.

P17 “I should have stuck to more strength training but I have, I’ve just been afraid of over-exerting my body in some way, I’ve been, like I said, pretty worn out physically and mentally tired and that has just prevented me from getting going” (Median & ulnar)

However, water exercises were expressed to provide hope when other activities failed, particularly aiding in the gradual recovery of arm function after brachial plexus injuries. Others questioned their PA level after the injury and questioned their sedentary lifestyle during the interview. When reflecting on their lack of PA after the injury, participants struggled to fully understand how they had ended up leading such an inactive lifestyle.

External barriers and facilitators

The external dimension of barriers and facilitators uncovers influences from the environment that affects one’s ability to stay active. Several of the obstacles that led to inactivity, or made activity impossible, were described as being outside the participants’ control. The cast was consistently mentioned as an example of an external barrier which limited PA. A wide variation in information about restrictions during the cast period was noticed among the participants. Some described being encouraged to go for walks while others only received restrictions in relation to the injury; i.e., “you can’t/ you are not allowed to…”. In addition, an external barrier expressed could be the surrounding and family worrying. This, along with the shift from independence to reliance on family and healthcare professionals, was described.

P1 “One’s everyday life changes; you become dependent on others. And even if you can still manage certain things when you end up there, as it deepens more and more, it becomes very difficult to bring yourself back to the surface again” (Median & ulnar)

Many participants attributed their sense of lost control after the injury to a lack of information. Frequently articulated as P1 ” Don’t know what I’m allowed to expose myself to”. Ambiguous information from health care professionals was described to raise feelings of insecurity. During the interviews, participants sought advice on rehabilitation and restrictions, highlighting their need for knowledge. The lack of informed guidance led participants to be overly cautious, often protecting and restricting the use of their arm. This shift to a more sedentary lifestyle due to insufficient knowledge was evident.

P13 “… I do not do anything I just game and stuff like that. Prior to this I was not doing this at all I was super active I was not doing it at all but I definitely picked it up in the aftermath because I felt like I had nothing else to do I did not know what to do with myself…” (Ulnar)

Furthermore, participants articulated that a lack of knowledge was linked to lower energy, with increased pain, and reduced activity, including gym attendance and running, due to unclear restrictions. Most participants described a lack of support, encouragement and confirmation in being active from the health professionals. Some participants, encouraged by health professionals to go for walks saw it as vital to resuming PA. Some noted progress on their own and could adapt their PA. Those advised to “be careful” described to be more cautious, while others resumed activity once their cast was removed. External support from healthcare professionals, family, and friends was expressed to facilitate activity.

P6 “My husband has been a huge support in all of this — both he and my son, you know, encouraging me, saying things like ‘Come on now, we’ll sort this out,’ and ‘Nothing is hopeless,’ and so on. And then the rehabilitation, when I got to go to the hospital and meet the physiotherapist, the occupational therapist, and the counsellor, and was able to talk things through and see the possibilities […] So I think it’s a combination of a lot of support from home and also strong backing from the hand surgery unit” (Median)

External support also boosted the courage to resume previous activities despite fear, as one participant stated:

P17 “Partly, I had people around me who encouraged me, and then I also gathered my courage. But I had also understood the benefits before I got back up on the horse again and what it could give me, so really it was just about overcoming the fear” (Median & ulnar)

Various social contexts emerged from participants as factors influencing activity levels, such as participating in sports clubs or gyms. Participants with pets noted them as external facilitators for going outside and staying active. A shift in context occurred when a participant, in a new cultural context among war-experienced individuals with severe injuries, was encouraged to go to the gym for the first time after injury. The reflections in mind-set were:

P20 “here in Sweden people react in an entirely different way to this type of injury than how they react in countries that are familiar with war” (High median)

In line with social contexts, participants asked to meet other patients in the same situation for support to resume PA.

P6 “… to get a reminder that your legs are working … this is difficult because of confidentiality and stuff … but this thing with having some kind of role model” (Median)

Work context was frequently discussed in relation to PA, serving as both a barrier and a facilitator. To be given more time when on sick leave was sometimes a new context mentioned as a beneficial external factor to stay active. The extra time was described as positive and necessary, as hand-based activities took longer and required adjustments. Other external facilitators included return to work along with schedule adaptations for an early return, noted by one participant:

P18 “I’m not only, I’m not just a great lump on the sofa anymore but now I can actually return to some work, take on some tasks that I had before the accident … so that’s what motivates me to go to work and set my alarm for 05:45” (Plexus)

Strengths and limitations

The present study has several strengths and limitations. One limitation is that inclusion may have been biased toward participants with a greater predisposition for engaging in PA. However, no one invited to an interview declined to participate. Including participants with different levels of PA experience and varying nerve injury severities broadened the range of perspectives and strengthened the data. However, we acknowledge that this also might be a limitation. While this approach increased clinical relevance, the heterogeneity of injury types may have limited the specificity of our findings for distinct patient subgroups. Patients with similar nerve location injuries can also have vastly different treatment options and at varying time points after the injury which may affect patient experience through their recovery and perceptions of barriers/facilitators. Despite potential variability, clear similarities were found across different injury levels. Future research focusing on more homogeneous populations, such as professional athletes or patients with isolated hand or finger injuries, would provide valuable complementary insights. The multidisciplinary research team provided valuable perspectives, enhancing the study’s trustworthiness. A key strength is the authors’ diverse professional backgrounds and knowledge of the patient group and PA, which enriched the interpretation of the results. For example, discussions were held around how clinical expectations of recovery might differ from patients’ experiences, and how terminology used by participants could be interpreted differently depending on professional background. However, awareness of the preunderstanding of the researchers performing data collection and analysis was also recognised and discussed to ensure findings were grounded in data. To strengthen the credibility of the results, the authors discussed the interpretation of data, categories and subcategories throughout the analysis process, to reach a consensus and ensure they accurately represent the data [49]. Another limitation was that participants were interviewed at different time-points after the injury, which may result in recall bias. As the study is based on participants’ retrospective accounts, their descriptions may be influenced by memory limitations or changes in how they interpret their experiences over time. This type of recall-related bias is important to acknowledge, although such subjective reflections are also central to qualitative research. However, the passage of time may have allowed participants to reflect on their injury and recovery with greater emotional distance, potentially leading to more positive or negative reinterpretations than they might have expressed closer to the time of injury. It is also important to note that the events discussed were often significant and impactful, which tends to enhance memory retention and the depth of reflection. The variation in time since injury therefore contributes to capturing a broader spectrum of experiences, which enriches the data. Other limitations are the lack of information about the participants pre-injury PA level or available social and environmental support. Further, as most participants were over 30 years of age, the findings may primarily reflect the experiences of older patients and may not fully apply to younger individuals with upper limb nerve injuries.

Initially, the COVID-19 pandemic’s impact on the interviews was observed, redirecting discussions towards its effects on PA. This led to a temporary postponement of data collection, as the pandemic’s influence on responses potentially diverted attention from the study’s primary objectives.