A qualitative study of the long-term consequences and adaptation in daily life after replantation surgery at a young age

Abstract

Introduction

Impaired functioning is seen in patients following replantation surgery to the thumb or fingers. Our aim was to explore long-term consequences and adaptation in daily life after a thumb and/or multiple finger amputation followed by replantation surgery during young age.

Methods

Semi-structured interviews were conducted with nine recruited individuals and analysed using content analysis. The participants were asked to describe their hand function, pain, appearance, emotional consequences, impact on daily life and strategies for overcoming daily challenges.

Results

The interviews revealed five main categories: memories of the injury and concerns for the future; hand function, pain and cold sensitivity; feelings about having a visibly different hand; adaptation to impairments and challenges in daily life; and key messages to healthcare professions and advice to future patients.

The circumstances of the injury were well remembered. Pain at rest was rare but occurred when grasping. Cold sensitivity was a major issue. Appearance-related concerns varied from none to a major problem. Despite impaired hand function, solutions were found to challenges in daily life. Compensatory strategies, personal resources and support from others were important in this adaptation process.

Conclusions

Patients with replantation surgery after an amputation during young age adapt to challenges in daily life over time. Healthcare professionals should offer adequate support to enable emotional processing of trauma experience. Appearance-related concerns should be addressed to prevent distress. Information about alleviating strategies to overcome long-term problems with cold sensitivity should be emphasized.

Introduction

Replantation following a total or subtotal amputation injury to the thumb or multiple fingers is a well-established microsurgical procedure, both in adults and children, with a reported survival rate for the fingers and thumb in children of 77–97%.^1–3 After such a major hand injury, impaired functioning is seen in terms of reduced range of motion, sensibility, fine motor skills, grip strength as well as pain and cold sensitivity. Patients may also experience psychosocial problems as well as a negative impact on health-related quality of life (HRQL).^4–10

Appearance-related concerns are rarely evaluated after amputation and digital replantation despite the importance of an individual’s self-image and well-being. ¹¹ The degree of visible difference is related to the manifestation of post-traumatic stress disorder, symptoms of avoidance and emotional numbing.^12–14 Appearance-related concerns and access to coping strategies may also influence social participation, as described in individuals with an amputation injury to the hand or congenital thumb anomalies.^15,16

Earlier reports have mainly focused on the functional outcome and survival rates after replantation surgery, but numerous confounding variables and inconsistency in reported traditional functional outcome measures^5,6,8,17,18 make it difficult to compare results from reported studies. ¹⁹ Impaired functioning and patient satisfaction, which is evaluated in the commonly used Ipsen and Tamai scores, is associated with worse DASH (Disabilities of the Arm, Shoulder and Hand) scores.^6,20,21 Health-related quality of life (Short Form 36; SF-36) and functional results correlate in patients with a replantation after a forearm or wrist amputation, ⁹ suggesting that inclusion of health-related quality of life measures could offer better indices of outcome after replantation. ¹⁰

Patient satisfaction after a successful replantation may depend not only on achieved function and appearance but also on how well the individual can accept and adapt to the new situation. ²² Access to emotion-based and problem-based coping strategies is important as described in different groups of hand injuries or disorders.^15,23–27

Although previous studies contain information about adaptation following hand injuries and the long-term functional outcome following replantation, there are no qualitative studies exploring patients’ long-term experiences of replantation surgery at an early age. Our aim was, therefore, to explore long-term experiences after replantation surgery of the thumb and/or multiple fingers during young age and the consequences for daily life. We also focus on adaptation strategies adopted to overcome challenges in daily life.

Methods

Study design

A qualitative descriptive method with an inductive approach was used to achieve a deeper understanding of the long-term consequences for participants of having had a thumb and/or multiple finger replantation surgery in childhood.^28,29 Face-to-face interviews were performed using a semi-structured interview guide inspired by previous qualitative studies,^15,25 developed by the last author and agreed to by all authors.

Participants

The inclusion criteria were: age below 20 years at the time of injury; having a thumb amputation and/or two or more fingers amputated; and treated with replantation at the Department of Hand Surgery Malmö, Skåne University Hospital, Malmö, Sweden between the years 1997–2006. Exclusion criteria were serious mental or cognitive impairment or inability to communicate in Swedish. Fifteen possible participants were identified in the hospital’s administrative files and found eligible for inclusion. Three participants could not be reached, two were abroad and one declined to take part, leaving a total of nine included participants. These injuries are rare, which is reflected in the few participants included. However, little new information was obtained from the last two interviews, justifying the small number of included participants.

Procedure and ethics

Written information, pointing out the voluntary nature of the study, was sent to the potential participants. The last author then contacted them and arranged an interview time for those who agreed to participate. Written consent was obtained at the interview and the participants were assured of confidentiality. None of the authors had been involved in the treatment of the participants.

All interviews were carried out, tape-recorded by the last author in a quiet room at the clinic, and lasted a mean of 39 min (range 25–53 min). The interview started with a repetition of the aim of the study. A semi-structured interview guide with open questions was then used and the participants were asked to describe their long-term experiences of overall hand function, pain, appearance of the hand, emotional consequences, impact on daily life and strategies used to overcome daily challenges. Follow-up questions were asked such as: How did you experience that? How did you handle that? Can you describe that in more detail? (Detailed information is available in the online Supplementary Appendix) The participants were also encouraged to confirm or clarify information during the interviews (member checks). A secretary transcribed all the interviews verbatim also marking utterances such as “hmm”, sighing or crying. All transcripts were checked for accuracy by the first author, who also translated the quotations from Swedish into English. The last author verified the translations.

The study was approved by the local ethics committee of Lund University (Dnr: 2009/339).

Outcome measurements

To gain background information and an overview of the characteristics of the participants, on the same day but before the interview started, the participants completed the Swedish versions of several self-report questionnaires: the Quick-DASH; ³⁰ 13-item Sense of Coherence (SOC); ³¹ the Cold Intolerance Symptom Severity (CISS) questionnaire;^32,33 seven single questions concerning pain at rest, pain on motion without load, pain on load, grip function, fine motor skill, weakness and appearance of the hand; as well as the acute version of the Short Form 36 (SF 36) questionnaire. ³⁴ The interviewer (last author IKC) measured tactile gnosis and grip strength.^35–37

Data analysis

The text was read and reread by the first and last authors and subjected to conventional content analysis.^29,38 The analysis started with an overview reading of each interview to gain a general impression of the content. Meaning units, described as words or sentences related to each other by their content and related to the aim of the study, were then identified by the first and last authors independently. The impression of the text was discussed, and the selected meaning units were compared. The meaning units were condensed into codes (labels for the meaning units) and then grouped into categories. Within each category, similar statements were analysed critically and questioned, then read and compared until a reasonable interpretation was obtained. The categories were then discussed with the second author, who had read all the interviews, and adjustments were made to ensure that the categories covered all aspects of the text (investigator triangulation^39,40). Finally, the categories were compared with the text and with each other. Concerning the authors’ pre-understanding, the first and second authors are experienced hand surgeons, and the last author is an experienced occupational therapist specializing in hand rehabilitation. All three authors work in a specialized unit and are experienced in the use of qualitative research methodology.

Results

Participants

Among the participants, one had a thumb replantation, two had a thumb and multiple other fingers replanted and six had two or more fingers replanted. The median age at injury was 16 years (range 5–19) and the median age at interview was 28 years (range 16–34) (6 men and 3 women) (Table 1). The median time from injury to interview was 14 years (range 9–18) (Table 1). All participants had completed elementary school, seven secondary education and one had completed university studies. Eight participants worked in a variety of professions, including welding, forestry and farming and one was still in high school. Five had a partner without children and three had families with children. The characteristics of the participants, based on results from self-report instruments, questions and objective measurements, are presented in Table 2.

Table 1.

Characteristics of participants with thumb or multiple finger amputations followed by replantation surgery at a young age.

Participant	Gender	Age group	Number of years from injury to follow-up	Injury mechanism	Injured fingers	Dominant hand	Injured hand	HISS
1	Male	Teenager	11	Wood cutter	Dig I-V	Right	Right	292
2	Male	Pre-schooler	11	Wood cutter	Dig III-V	Right	Left	250
3	Female	Teenager	17	Wood cutter	Dig II-V	Left	Left	272
4	Male	Teenager	9	Wood cutter	Dig II-III	Right	Left	185
5	Male	Middle childhood	18	Wood cutter	Dig II-V	Right	Left	260
6	Male	Teenager	12	Wood cutter	Dig I-IV	Right	Right	286
7	Female	Pre-schooler	18	Wood cutter	Dig II-IV	Left	Right	179
8	Female	Teenager	15	Rope	Dig I	Right	Left	120
9	Male	Teenager	14	Wood cutter	Dig II-IV	Left	Left	249

HISS: Hand Injury Severity Score. A higher score indicates a more severe injury ⁴¹

Age of the patient at injury: Pre-schooler = 3–5 years; Middle childhood = 9–11 years; Teenager = 15–19 years.

Table 2.

Median and range of clinical objective and patient-reported outcomes of the participants (n = 9).

Measures	Median (range)
QuickDASH1	11(2–25)
SOC2	76 (23–85)
CISS3	35 (6–62)
Pain at rest4	0 (0–20)
Pain on motion without load4	0 (0–20)
Pain on load4	20 (0–70)
Grip function4	30 (10–80)
Fine motor skills4	50 (20–100)
Weakness4	40 (10–50)
Aesthetic4	50 (10–90)
Short form 36: Subscales5
Physical functioning	90 (65–100)
Role-Physical	100 (25–100)
Bodily Pain	74 (61–100)
General Health	82 (57–100)
Vitality	70 (25–95)
Social Functioning	100 (50–100)
Role - Emotional	100 (0–100)
Mental Health	92 (40–96)
Discriminative touch, 2PD6	12 (4- >15)
Grip strength injured side, kg7	41 (14–63)
Grip strength uninjured side, kg7	43 (34–74)

¹QuickDASH: Short version of the Disabilities of the Arm, Shoulder and Hand (Score range 0-100). A lower score = less limited functioning.

²Sense Of Coherence (Score range: 13-91). A higher score = stronger SOC.

³Cold Intolerance Symptom Severity questionnaire (Score range 4-100). A higher score = worse problems on cold exposure

⁴Numerical Rating Scale (0=No problems, 100=Worst problems imaginable).

⁵The item score for each subscale is transformed into a scale score ranging from 0 (worst) to 100 (best).

⁶Two-point discrimination

⁷Jamar hydraulic dynamometer (TEC, Clifton, New Jersey, US)

The results from the interviews are presented under five categories: memories of the injury and concerns for the future; hand function, pain and cold sensitivity; feelings about having a visibly different hand; adaptation to impairments and challenges in daily life (compensatory strategies, personal resourcefulness, support); and key message to healthcare professions and advice to future patients.

Memories of the injury and concerns for the future

All, but those who were pre-schoolers at the time it happened, remembered quite well how the hand injury occurred and why. They could describe vividly what had happened and the shock of the experience for themselves and their family members. However, there was also an example of not having a clear memory of the injury due to young age. “I do not remember, I got a teddy bear, and then I was put to sleep”.

Sometimes the injury happened out in the country far away from a hospital and sometimes the injured person was alone at home. On the day of the accident, the children were either helping their parents on their own, or they were in the company of parents or siblings and were supposed only to watch. Most of the injuries were caused by wood-cutting machines. “My little sister was controlling the lever and I was putting the logs in place and she did not have full control over what she was doing”. The cause of injury led to a sense of guilt in the injured person, blaming themselves or close relatives involved in the accident. “It has happened and it is both my fault and my brother’s”.

Some remembered having initial thoughts about the future on the way to the hospital. “l already had thoughts in the ambulance, life is over”. Thoughts that the amputated finger was impossible to save were expressed and led to appearance-related worries “…now everybody will think that I am disgusting”. The memories were unclear regarding the hospital stay itself and the treatment received after the replantation, but emotional reactions, such as irritability, anxiety, and worry, were remembered from this time.

Worries were expressed about the success of the surgery and participants were afraid that the replanted fingers would have to be removed. “I was worried that my body would reject the fingers the first days, hours, weeks, and as soon as there was the slightest change in skin colour my heart started to beat at 190”. Being unable to adjust the finger temperature during the first cold winters also led to anxiety that the replanted fingers would be cut off and lost. This feeling, however, eased over time.

Unsettled feelings were expressed, and participants remembered that they could suddenly start crying when they were worried about how the future would turn out. Some felt distress even years after the accident when they found themselves in similar circumstances. “A couple of years after the accident I felt bad when I heard the sound of a circular saw”.

Not only depressing but also positive thoughts about future challenges were expressed “I have not seen any obstacles but thought of it rather as challenges that can take longer”.

No influence on high school choices due to the consequences of the injury was described.

However, writing by hand prolonged high school studies if the dominant hand was injured. A young male had concerns about being able to take driving lessons and have a driver’s license soon since it was important to be like everybody else. However, worries for the future regarding vocational training and future work opportunities were seldom described. The choice of manual work was popular, unrelated to the injury. However, concerns about the future were expressed due to increasing problems with hand function over time and overloading the uninjured hand.

Hand function, pain and cold sensitivity

Despite impairments in terms of range of motion, sensibility, grip function, fine motor skills and strength, many participants managed to overcome challenges in daily life. The joy over a successfully replanted thumb created a sense of being “in proportion” and enabled a crude ability to grip. However, some grip functions or abilities were more problematic, such as fastening buttons, tying shoelaces, peeling vegetables, washing the face, holding thin objects like a pen or putting on earrings. Limited motion and grip strength also made it difficult to climb ropes, carry grocery bags or hold a barbell. The majority of participants expressed frustration over accidental cuts due to impaired sensibility and dropping objects due to an inability to accurately adjust the strength needed to hold an object. “To feel the difference between different coins is impossible”. However, for those injured when they were very young sensibility was not considered a problem and was found to be as good as in the uninjured hand.

Pain due to hypersensitivity in the injured nerves was experienced in the re-innervation phase and was dealt with by, for example, desensitization while showering. Pain at rest was extremely rare. However, pain was experienced in specific situations, such as when the finger was hit or was exposed to cold. When the finger was hit, a long-lasting dull pain or a sharp stab all the way up the arm was described. Pain was also described when simply grasping something not involving a heavy load. Secondary back pain, which was gradually noticed over time and still present, was also mentioned by one participant who suspected it was caused by asymmetrical strain following heavy loading on the uninjured side.

Cold sensitivity was commonly expressed as a major issue, causing hand function to deteriorate during cold exposure. It was triggered by wind, moisture, and cold weather. However, a cold wintry day was not necessarily worse than a rainy and windy summer day. Besides a general unpleasant sense of coldness, it was described as an icy, pulsing feeling causing pain/aching, tingling, numbness, stiffness, and skin colour change. “When my hand is cold it does not tolerate pain that well …. I can feel it all the way up in my arm, it hurts so it tickles in my guts”. The rewarming time on return to an indoor environment varied but could last for an hour for those worst affected with persistent symptoms or cramp. The degree of discomfort on or after cold exposure improved or remained unchanged over time. The impact on daily life varied.

Feelings about having a visibly different hand

The participants’ concerns about the appearance of the hand varied from none to a major problem during the first years after the injury. Even if the participants did not like the appearance of the hand there was a gradual acceptance over time, and they also expressed joy that the replantation was successful. “Sometimes, but it has disappeared over the years and I don’t bother that much anymore”. However, there could still be thoughts about the look of the injured hand many years after the injury, which could affect self-esteem. “My hand looks like a crab or a claw – it looks unpleasant and bothers me the most”. “I feel disgusting and different. Even if it is many years ago I can suddenly be very sad and start to cry and feel ugly in a way”.

Hurtful comments during the years in school were received and the feeling of being different from schoolmates led to loneliness. However, most of the participants had not experienced negative comments from school friends, teachers, or others. The appearance of the hand rarely gave rise to verbal teasing or bullying. Changing environments, such as moving from compulsory school to high school, seems to have protected participants from comments about their injured hands and from being stared at. Some participants felt that work colleagues had not even noticed that they had an injured hand. “Quite often now in the last years they have said, I have never seen that”. However, specific situations, such as writing with a pen or having a meal in public, could make them feel uncomfortable. The visibility of scars on the injured hand could also be one of the reasons preventing participation in a workout at a gym; not wanting to expose the hand to others. Participants said that they felt uncomfortable and disturbed by people who stared and that it would have been better if they asked what had happened allowing them to explain. “The elderly are the worst, if it is a little kid then he asks what has happened”. Appearance-related concerns when trying to develop intimate relationships were expressed when still young, “I did not believe I would be able to have a boyfriend”, but were rarely experienced later in life. “They think it is ugly, and it is difficult to approach me of course, but I do not think about it …”. “I chose her and she chose me, she has faults and I have faults”. Confidence, good self-esteem, acceptance and emotional support from partners/spouses were usually present. A simple action that exemplifies such solicitude and consideration was for their partner to consciously choose to hold their injured hand to instil a feeling that they were like everyone else.

Adaptation to impairments and challenges in daily life

Compensatory strategies

Appearance-related concerns were handled by hiding the injured hand, pulling a sleeve down over it to prevent exposure in specific situations but, over time, the need to hide the hand diminished.

The use of technical aids or adaptation of tools was described. Computers were a good help in school. “I used the computer a lot, it was easier and it was more troublesome to write with a pen”. Using a thicker pen was an alternative, to enable writing with the injured hand. Finding alternative ways to solve everyday obstacles was common “I found it easier to use scissors than a knife to cut up a pizza”. One example of adaptation to the work situation was to change the positioning of buttons on controls to be able to use the injured hand.

The uninjured hand is used in specific situations, both at work and at home, if there are problems using the injured hand, like fastening buttons, washing the face, and opening and closing windows and doors. “If I take something from the oven I always use my uninjured left hand”. Another way of handling a reduced range of motion in the fingers was to compensate with the wrist to enable a functional grip pattern or use a changed grip pattern when handling cutlery or tying shoelaces.

The eyes compensated for poor sensibility when using the injured hand and prevented new injuries, for example when using a knife or handling hot objects. Lying on the side of the injured hand, so that the uninjured hand was free to caress the partner, compensated for reduced sensibility.

Problems of cold exposure were dealt with by using the uninjured hand when grasping cold objects or by wearing electrical, double-layered or sheepskin gloves outside. “I had good use of it (electrical glove) initially, I think I used it the first 5 years”. Other alleviating strategies used were heating handles, on a chain saw, for example, heating remedies, proper clothing, putting one’s hand in one’s armpit, an awareness or avoidance of activities that could cause problems - “being one step ahead”. Selected strategies, along with a change in occupational performance or pattern, enabled the participants to continue meaningful activities, such as riding and hunting, but also to cope with challenges caused by cold exposure at work. Although, not in itself a compensatory strategy, a conscious choice to simply endure the consequences of cold exposure enabled participation in certain activities.

Personal resourcefulness

To look forward, leave what happened behind and find solutions instead of problems was a distinctive characteristic among the participants. “I have always had as a goal that my hand should not stop me from doing things”. A stubborn attitude, trying to find solutions to performing practical tasks even if it takes some time, was noted as a helping factor.

New possibilities and a richer life after the injury were also expressed. “I have not seen any obstacles if anything only possibilities, new challenges”. A more rational way of thinking is also expressed. “I think I very much put it into proportion to how it would have been without my thumb”.

Support

The experience of asking for and accepting help from others was mentioned in many ways. Parents and friends provide the main support but partners and teachers are also mentioned. “People who are closest to me, family and friends, have been supporting and pepping me”. Doctors, nurses and rehabilitation personnel were also mentioned as giving support in a good way by listening, providing information repeatedly, pain relief and professional treatment. Being treated in a specialist unit felt safe. The experience of early mobilization of the replanted fingers as early as the first postoperative week was shocking, but instilled confidence that movement was possible and also hope for the future.

A sense of being less worthy was described due to other people’s opinion of the participant being disabled. Family support was then crucial. Serious problems, such as social isolation after the injury, were also experienced. Support from parents by giving the participant a puppy to take care of and regularly going to the gym helped to overcome such a problem. “… my mum who pushed me to go and buy the dog … When I got it home I needed to take care of him instead …”. Most had no problems in school and seemed to have had good support from both other students and teachers. The injury meant that some had to put in extra time to catch up with their studies and some teachers worried about whether they could perform some of the exercises in gymnastics. In school, some used computers instead of writing with a pen. However, contact with a counsellor or a psychologist, if such contact was offered, was rare.

Key message to healthcare professions and advice to future patients

Key messages to health care professionals were: to offer the opportunity to repeatedly talk about the injury to enable emotional processing; to receive objective and continuous information and support, both to the participant and their relatives and in a playful manner to younger children. “See it from the child’s perspective”; to be cheered up and not pitied.

Based on our participants’ own experiences the following advice to future patients was mentioned: do not give up; everything can be solved; think positive; it will get better, see the possibilities; look ahead; problems can be solved; learn to live with it; do not miss physiotherapy. “Look ahead and try to use the hand as much as possible, start immediately”.

Discussion

The present study aimed to explore long-term consequences and adaptation in daily life after a thumb or multiple finger amputation followed by replantation surgery during childhood. The participants in the present study remembered well the circumstances of the injury and initial worries about the future. Pain at rest was rare, while pain when grasping occurred. Cold sensitivity was a major issue. Appearance-related concerns varied from none to a major problem. Despite impaired hand function, a variety of solutions was found to challenges in daily life. Compensatory strategies, personal resourcefulness and support from others were important in this adaptation process.

Distress, concerns and prognostic factors

All, but those who were pre-schoolers at the time of the injury, described vividly what happened, the shock of the experience and unsettled feelings like irritability, anxiety, and worry. Such symptoms of emotional distress during the first week after a hand injury have also been described previously.^26,42 Symptoms of acute traumatic stress disorder have been found to decrease during the first month after a traumatic hand injury in a previous study. ⁷ However, other studies have found that 50% of those injured developed the diagnosis of post-traumatic stress disorder (PTSD) and still experienced some psychological problems, flashbacks and fear of re-injury even after 18 months.^43–45 Many years have passed since the injury for the present participants, but a few of them still felt distressed and had flashbacks when e.g. hearing the sound of a chain saw. This could lead to sudden crying and a feeling of being ugly. Anxiety is considered to be the most frequent and persistent symptom after replantation surgery, but depression and post-traumatic stress disorder (PTSD) may also occur.^7,46,47 Notably, these studies have all, more or less, excluded patients under the age of 18 years at the time of the injury. Threat-related early life stress may induce changes observed at functional magnetic resonance imaging (fMRI), which is important for a healthy stress response later in life; ⁴⁸ thus, the plasticity of the brain is crucial in this context in accordance with the findings in children showing a significantly better sensibility after a traumatic nerve injury if occurred early in childhood. ⁴⁹ To evaluate anxiety, depression and post-traumatic stress disorder and other psychological health problems it is relevant to use appropriate questionnaires to reveal and define symptoms, such as Hospital Anxiety and Depression Scale (HADS).^47,50

An amputation injury with subsequent replantation surgery, as in the present participants, is a severe injury that will interfere with their future life. However, all our participants seemed to have both a positive attitude and good support from family and friends and appeared to have overcome the injury in the best way. Most of the participants also received good support from the medical staff even if most of the details of the care given have been forgotten. The opportunity to talk to a welfare officer was mentioned, but psychological help after the injury was not obligatory. It seems that the support that our participants received was sufficient to facilitate a positive adaptation. However, the importance of having clinical routines that include an opportunity for emotional processing of the trauma experience is essential to prevent long-term anxiety and PTSD.

Hand function, pain and cold sensitivity

The outcome of a serious hand injury, such as an amputation injury with replantation, is determined not only by the functional impairment but also by the person’s ability to accept and adapt to the new situation.^24,27 When presenting outcomes after replantation surgery, objective measurements of hand function are usually given along with reports of patient satisfaction and health-related quality of life.^8,22 Our participants experienced impairments in range of motion, fine motor skills, strength and sensibility. However, broad access to adaptive strategies and personal resources over the years enabled the participants to overcome challenges in daily activities. This is reflected in the Quick-DASH score at the time of the interview. Regardless of the injury, manual work, e.g. welding, forestry, and farming, was also common and very few needed to change their future plans.

Pain is a stressful component of traumatic injuries and can negatively influence both the immediate and long-term outcomes.^51–53 Interestingly, at the time of the interview, the present participants did not complain of pain at rest or reported it as a problem. However, many described pain during the acute phase and for some time after. Pain was also experienced when the injured hand was loaded or bumped or when there was asymmetrical pain in the back.

Long-lasting and severe cold-associated symptoms were described in the interviews, and one, which is rarely reported in individuals with a hand injury, sustained in childhood. ⁵⁴ The median CISS score indicates a varying impact of cold sensitivity in daily life. ³² The total score may also reflect access to effective alleviating strategies, which were referred to in the interviews.

A visibly different hand

Appearance-related concerns of the hand varied from none to a major problem during the first years after the injury. Hands are always on show to both the child and teenager and to those they interact with. Hands have personal significance, are important for an individual’s self-concept, and affect how we are perceived by others. ⁵⁵ However, a person´s perception of how noticeable their difference is to others is a more relevant predictor.^14,56 Furthermore, the extent or severity of disfigurement is not always related to the degree of emotional distress. The appearance of the hand rarely gave rise to verbal teasing in our participants, but uncomfortable feelings were experienced when being stared at, when exposed to social activities and when trying to form relationships when still young. A gradual acceptance over time was described, but also a feeling of sadness and disgust over the look of the injured hand many years after the injury. Appearance-related concerns and their psycho-social consequences are therefore important to address following replantation surgery to the hand as described previously following different hand disorders or injuries.^{11,15,16,23,57,58} Appropriate training on how to openly communicate such concerns, use of a positive normalizing approach and emotional support may then empower the child or teenager to promote adaptive behaviour in social situations.^59,60

Adaptation to impairments and challenges in daily life

Three different stages in adjustment after a hand injury with amputation have been described, i.e. functional acceptance, aesthetic acceptance and emotional acceptance. ²² In our study, the participants describe quite well the more acute stress period, followed by functional, aesthetic and emotional acceptance, and going back to normal life even if they had to learn new ways to use their hands.

In the case of serious injury, various strategies can be used to cope with the situation, based on the participant’s earlier experience and psychological status. A variety of coping strategies have been described in patients who suffered an acute traumatic hand injury.^24,27 Our participants had long passed the acute phase and the coping strategies were now not completely recalled, although many examples of compensatory strategies, personal resources and support were described. They clearly described finding solutions instead of problems and leaving what happened behind them, looking forward instead. Having this capacity or disposition to see or perceive the world as comprehensible, manageable and meaningful, as described in salutogenic theory ³¹ and reflected in the sense of coherence (SOC) score in our participants, indicates an ability to handle emotional distress and daily challenges (Table 2). However, psychosocial and functional assessments must be integrated into the rehabilitation process to identify patients in need of extra support, as pointed out by Bates and Mason. ⁶¹

Methodological considerations

In qualitative research, the findings are evaluated in terms of trustworthiness, which includes establishing credibility, dependability, confirmability, and transferability.^29,62 Amputation injuries and replantation are rare in children. We included all participants who accepted the invitation, but the number was limited. A higher number of participants may have added more breadth to the responses. Recall bias should also be considered because the interviews were made several years after the surgery. However, the interviews were all rich in detail although they varied in length. To strengthen dependability, two authors independently read and coded the text and engaged in an in-depth discussion to arrive at a reasonable interpretation (investigator triangulation).^39,40 A third author read all interviews in relation to the coding and interpretation. Representative quotations from the transcribed text are presented to make the interpretation of the text visible to the reader. Constantly confirming and clarifying information during the interviews ensured confirmability. All the authors participated in the analysis to reduce the risk of overinterpretation of the results due to the authors’ pre-understanding of the phenomena in focus. Furthermore, the method used consistently throughout the research process was analysis focused on the content of the text, limiting the risk of predetermined interpretation. The transferability of the findings is limited since the participants represent a small study group.

Conclusions

We found among the present participants, who had been injured during childhood, that over time acceptance and adaptation take place. Even if the hand is functionally impaired, pain and cold sensitivity are present, and appearance-related concerns vary, solutions are found to challenges in daily life. Knowledge about long-term problems following replantation to the thumb and/or multiple fingers is important to be able to facilitate the patient’s adaptation process. The present study highlights the importance for healthcare professionals to offer adequate support to enable emotional processing of the trauma experience. Appearance-related concerns should be addressed to prevent distress. Information about alleviating strategies to overcome long-term problems with cold sensitivity should be emphasized.

ORCID iDs

Hans-Eric Rosberg https://orcid.org/0000-0001-9229-2319

Lars B Dahlin https://orcid.org/0000-0003-1334-3099