“You Don’t Realize What a Big Change It Is”: A Reflexive Thematic Analysis of Patients’ Experiences of Amputation Preparation,Information Provision,and Support

Abstract

The objective of this research was to extend current knowledge on the psychological and emotional aspects around patients’ preparation for amputation surgery. This research explored amputees’ perspectives on their preparation for amputation surgery and how patients can be better supported for this procedure. Data was collected through semi-structured interviews and online qualitative questionnaires with 17 amputees who underwent upper- or lower-limb amputation within the United Kingdom. The interviews were analyzed using reflexive thematic analysis. The analysis generated three themes describing participants’ experiences of being prepared for this surgery and their ideas on how this process could be improved: (1) Making sense of amputation surgery, (2) Patients’ experiences of information and support from healthcare staff, and (3) Patients’ views on approaches to preparation. This research highlighted the importance of information provision and support from healthcare staff, along with the potential benefits of utilizing experiential knowledge through peer support to enhance feelings of preparedness for amputation surgery.

Introduction

Amputation is an increasingly common surgical intervention due to rising rates of vascular diseases, diabetes, and an ageing population. From January 2017 to December 2019, 10,022 major amputations were undertaken in the National Health Service (NHS) in the United Kingdom, with a further 3335 minor amputations and 137 amputations due to trauma (Waton et al., 2020). There is also evidence that rates are set to increase substantially in the next 30 years (Jo et al., 2021). It is estimated that diabetic amputations annually cost the NHS approximately £64.6 million for inpatient and outpatient care (Graz et al., 2018). Mortality rates after amputation remain high; the National Vascular Registry found that mortality rates for both below and above knee amputations were 7.7% (Waton et al., 2020). Longer-term mortality rates are estimated at between 39% and 68% at 5 years post-amputation (Singh & Prasad, 2016) and median survival is estimated at 821 days post-surgery (Heikkinen et al., 2007). One in 10 amputees were readmitted to hospital in the 30 days after their initial discharge, with average stays in hospital after surgery being 23 days (Waton et al., 2020). As amputation rates increase, the wider implications of amputation (including reduced quality of life through loss of work and less participation in social activities) and clinical outcomes (increased mortality, psychological impacts, loss of bodily integrity, and experience of pain) will affect more patients.

The Vascular Society of Great Britain and Ireland (VSGBI) states that “A well prepared patient carries a higher chance of a successful operation and return to independent mobility without hospital acquired complications” (Vascular Society, 2016) and offers an exemplar care pathway for patients undergoing an amputation. Optimizing patients’ physical condition before amputation surgery—sometimes termed “prehabilitation”—is seen as a means of facilitating positive post-operative outcomes (including reducing mortality) (Lewis et al., 2016; Scott et al., 2014). However, such preparation usually focuses on physiological and behavioral influences on surgical outcomes (such as physical exercise, management of comorbidities, medications management, and smoking cessation), and there is limited evidence around the role of psychological preparedness for surgery. Yet, for patients, amputation is often an experience that may lead to the loss of a way of life (Columbo et al., 2018). Consequently, many patients exhibit concerns beyond only their physical health, including around the practical, social, and financial challenges of living with an amputated limb (Schober & Abrahamsen, 2022). Such concerns often arise during hospital admission or soon after discharge when patients begin to live with a reduction of mobility inside and outside of the home (Norlyk et al., 2013). There is, however, limited evidence relating to the psychological preparation for amputation, and patients’ experiences and perceptions of this process.

Research has suggested that, for some patients, the experience of amputation is akin to the grief of being widowed (Maguire & Parkes, 1998), meaning patients may experience substantial emotional distress following amputation surgery (Rybarczyk et al., 2004). The vulnerability and reduced autonomy that frequently accompany limb loss can cause sadness and depression (Canbolat Seyman & Uzar Ozcetin, 2022), and patients may mourn their life pre-surgery, as well as experiencing anxiety about the future (Day et al., 2019). Although many patients report that this sense of grief is gradually replaced by a feeling of hope and re-gaining control over their lives, for some patients, grief can continue into the latter stages of recovery (Livingstone et al., 2011). Regardless of the type of amputation, body-image distress and social discomfort has also been reported among people living with limb loss (Horgan & MacLachlan, 2004). Whilst amputation can sometimes result in a more positive self-image for patients who regain mobility through prosthetic use (Verschuren et al., 2015), an altered body image post-surgery often affects the self-esteem, mental health, and quality of life of new amputees (Nugent et al., 2024). As well as experiencing body image and self-identity distress (Atherton & Robertson, 2006; Senra et al., 2012), concerns around the disposal of an amputated limb may intersect with the grief and loss felt after surgery (Hanna, 2019) although this is largely not considered in existing care pathway for amputees.

Amputation brings a raft of challenges to the lives of patients. Although recent work suggests that intervening at the earliest opportunity may bring the greatest benefit in terms of minimizing psychological distress (Jo et al., 2021), research on the psychological implications of amputation has mainly concentrated on later stages of rehabilitation and recovery. Exploration of the feelings, concerns, and coping strategies of patients preparing for amputation surgery could be beneficial for the development of future research and clinical approaches to help enhance care of amputees. Increasing patients’ knowledge of surgical procedures in the pre-operative phases in other surgical patient populations has been associated with reduced state anxiety (Kiyohara et al., 2004). However, it has been suggested that providing information to surgical patients needs to be tailored to individual needs, begin early in the hospital admission process, and continue until discharge to enhance the feelings of preparedness and improve patient outcomes (Kruzik, 2009; Suhonen & Leino-Kilpi, 2006). The communication of information from healthcare practitioners is important for patient understanding of the process, forming trust between staff and patients, increased adherence to self-care, and improved overall health and well-being (Street et al., 2009).

There is evidence that amputation patients report difficulties to cope with fear and anxiety and lack of information about what to expect from amputation and its impact on life post-surgery (Liu et al., 2010). A recent study showed that vascular amputation patients experience uncertainty about their future, especially around the rehabilitation process and use of a prosthetic limb (Milosevic et al., 2024). The same study also highlighted that interaction with peers helped recent amputees form a more positive outlook about their future. Engagement in peer support with fellow amputees has been found to be an effective tool for improving preparation for surgery in individuals undergoing surgeries, including major amputations (Cain et al., 2021). Despite this tentative evidence base regarding the possible benefits of well-prepared patients for amputation surgery, we still know relatively little about the experience of preparation and the feelings patients have about the process. Further understanding of patients’ perspectives of pre-operative preparation would enable clinical staff to be able to optimize the care they offer to help patients navigate their recovery as effectively as possible. This study aims to explore existing amputees’ lived experiences of being prepared for their amputation surgery.

Materials and Methods

This research forms part of a wider project funded by the National Institute of Health and Care Research (https://fundingawards.nihr.ac.uk/award/NIHR300631), studying how preparation for amputation can enhance patient experiences and outcomes. This paper presents the findings of the second component of the project: an interview study exploring patients’ experiences of preparation for amputation surgery and perceptions of their pre-amputation care.

This project has a constructionist epistemological approach and considers that knowledge-making practices are underpinned by social processes (Burr, 2015), including scientific research. Accordingly, rather than discovered, research evidence is produced by researchers and participants and mediated by broader social structures. Given the exploratory nature of this project component, semi-structured interviews were chosen as the means for data generation in order to prioritize the lived experiences of participants. Rather than the reflection of one set of clinical practices or experiences, this research sought a broad range of patient experiences in order to help inform the stages of the wider project. According to this, participants were recruited through community settings rather than clinical ones. The interviews were conducted between February and August of 2022. The research was advertised online through social media including Facebook, Twitter, as well as via the Patient Stories website Care Opinion and via a range of amputation charities and organizations including the Limb Power games. The inclusion criteria for participants were that they had to have undergone an upper- or lower-limb amputation within the NHS and were aged 18 years or above.

Participants were offered two means by which to participate to enable inclusion. These options were verbal interviews via telephone or video call to ensure participation was accessible and convenient to a geographical spread of participants or through provision of textual interviews via an online qualitative questionnaire. The use of a qualitative questionnaire was offered to enable the inclusion of those who wished to share their stories anonymously or for those who wished to be able to offer their perspective without reliance on verbal testimony. Qualitative questionnaires are a relatively novel method for the generation of rich insights within qualitative studies but can offer disclosure and participation for topics which are potentially sensitive (Braun et al., 2020). Having used them as a means for encouraging and facilitating equitable and inclusive involvement in other studies, we felt it was important to give participants here a choice of how to engage in the study. The use of a qualitative questionnaire or interviews does not have to be “an either/or choice” (Braun et al., 2020), and it was for this reason we opted to include the option of both interviews and anonymous participation via an online questionnaire within this study. Ethical approval was sought from the relevant University Research Ethics Committee (Ref: 442158, De Montfort University). All participants provided informed consent and were assigned a study ID for dissemination purposes.

Sample Characteristics

In total, 17 amputees took part in the research; six participants opted for a telephone interview and 11 participated via the qualitative questionnaire. Of these 17 participants, 15 elected to provide demographic data. Of those who provided demographic data (n = 15), there were 5 women and 10 men, and 13 had undergone lower-limb amputations, one had an upper-limb amputation, and one participant had bilateral upper and lower-limb amputations. The causes of amputation were vascular conditions (6), trauma from an accident (5), complex regional pain syndrome (1), cancer (1), neuropathy (1), and sepsis as a result of COVID-19 (1). It is important to note here that all the participants had undergone an amputation. Whilst for some patients the treatment decision will be not to amputate, this is not the experience of those in our sample. Information provision and risk communication regarding alternative treatments to amputation (including not amputating) were outside of the scope of this study, as it was outside of the lived experiences of those who participated.

Data Collection and Analysis

The telephone interviews were conducted by the research team and audio-recorded. These interviews were then transcribed verbatim by a professional transcriber. The telephone interviews lasted between 25 minutes and 77 minutes (mean = 44 minutes). The online qualitative questionnaire responses totalled 3198 words, which is an average of 289 words per participant. The data were analyzed using reflexive thematic analysis as detailed by Braun and Clarke (2021). Reflexive thematic analysis offers a flexible approach which sees the subjective skills of the researcher(s) as central, which was useful given that the data were generated from verbal as well as written testimony through the two data generation methods used and the analysis was completed as a team effort (Braun & Clarke, 2021). Analysis was undertaken by two researchers (MGA and LW), following the six phases of reflexive thematic analysis suggested by Braun and Clarke (2021). Firstly, the researchers familiarized with the dataset by listening to the recordings and reading and re-reading transcripts, annotating analytic ideas and insights. Secondly, relevant fragments of data were identified for which researchers developed preliminary, descriptive “code labels.” The third step involved researchers grouping and merging codes to develop broader themes. Modifications in the generated themes as well as discrepancies during theme development were recorded to document the process. To carry out the fourth and fifth phases of the analytic process, researchers met regularly to develop and refine themes with the participation of the broader team. The sixth phase, corresponding to the writing-up of the analysis, occurred concomitantly with earlier stages of the analytic process. Although the interpretations presented in this analysis are considered to be credible and meaningful, we acknowledge that these are not the only possible interpretations of the data.

Quality Assurance and Reflexivity

The research team applied the verification strategies advised by Morse and colleagues (2002) to actively attain reliability and validity of the research process, with the exception of saturation. The methodology—semi-structured interviews and qualitative online questionnaires—aligned with the research’s exploratory character and the need to consider and account for the emotional aspects around limb loss; the introduction of online questionnaires aimed at making the research accessible to amputees who did not feel able, or did not wish, to share their experience in a one-to-one interview with a researcher. The sample obtained represents different causes and types of amputation as well as variation in preparation experiences. The analysis process moved iteratively between the specificities of individual experiences and knowledge of current practice on preparation obtained from the previous phase of the project. Data saturation was not considered a quality criterion, as its use in thematic analysis may be problematic (Braun & Clarke, 2021). Researchers kept a reflexive journal throughout data collection and analysis capturing preconceptions, emotional responses, and “ethically important moments” (Guillemin & Gillam, 2004).

Findings

Three themes resulted from the data analysis; these are (1) Making sense of amputation surgery, (2) The experience of information and support from healthcare staff, and (3) Patients’ views on approaches to preparation.

Theme 1: Making Sense of Amputation Surgery

This theme encapsulates participants’ individual, personal narratives of limb loss. The way in which participants made sense of their amputation is notably shaped by whether this procedure was planned or urgent. These experiences are described in the sub-themes: (1) “Amputation as the end of a journey of ill-health” and (2) “The shock of an unexpected amputation.”

Amputation as the End of a Journey of Ill-Health

This sub-theme focuses on the experiences of participants who underwent a planned amputation. They tended to locate the beginning of their amputation journey in an unfortunate event that occurred a long way in the past, such as an accident, an infection, or an unsuccessful surgery. This group of participants (5/17) had often experienced prolonged periods of ill-health, pain, reduced mobility, and exposure to serious health risk, and improving these aspects was their principal motivations to undergo amputation surgery. The extract below describes how the fear of re-experiencing a life-threatening infection influenced Participant 2’s decision to undergo a lower-limb amputation:

[…] the risk of infection coming back again, because that was just like getting punched in the stomach. That happening twice when you really thought you were rid of it. So, I had to make the difficult decision of whether to go for amputation or the others [treatment options]. By the time, I had decided that it was definitely amputation. (Participant 2, telephone interview)

Similarly, the possibility to improve mobility and reduce pain supported Participant 5 in their decision to opt for their amputation surgery:

They [multidisciplinary team] said, you know, it might recover a little bit but with a fairly limited mobility with it, and it would never be proper again, and most likely just give me a lot of pain. (Participant 5, telephone interview)

The influence of these previous experiences not only shaped participants’ decision to undergo surgery but also supported them in making sense of, and preparing for, this procedure. For these participants, amputation surgery, despite it potentially being a traumatic and life-changing event, also embodied a sense of hope for a healthier and more independent future.

It is important to note, however, that previous experiences of long-term chronic pain do not always serve to support participants’ psychological preparation for amputation surgery. Sometimes prolonged pain and limb deterioration can lead individuals to minimize the risks around amputation surgery as a coping strategy to face this difficult moment:

[…] I talked myself into thinking it was quite a minor operation, even though I knew it wasn’t from experience. But I think that was probably my way of dealing with it best, was just to downplay the complications. (Participant 6, telephone interview)

Participants who underwent a planned amputation described their often long-standing experience of ill-health or pain prior to their amputation. This seemed to give these participants time to emotionally adjust and accept their need for amputation.

The Shock of Undergoing Unexpected Amputation Surgery

This sub-theme describes the emotional aspects and specific difficulties associated to unexpected amputation surgery in comparison to those of a planned amputation. When unexpected, amputation surgery can involve additional challenges, such as difficulties to understand what happened, and reduced opportunities to prepare for surgery and to involve family and friends in this process. The excerpt below reflects how the urgency of their lower-leg amputation, following from a toe amputation, limited Participant 14’s opportunities to understand the causes of this surgery:

My situation, it all happened very quickly, when they discovered the wound from my toe amputation wasn’t healing, through lack of circulation. Never had a real opportunity to really look into things properly. (Participant 14, qualitative questionnaire)

The urgent nature of some amputation surgery means that patients do not always get the opportunity to ask the questions they may have or to fully appreciate the potential impacts of the procedure on their life post-operatively:

In hindsight, I wish I’d asked how that it was gonna impact on me […] I didn’t realize how much of an impact that was going to have on my life. (Participant 3, telephone interview)

Given the often time-critical nature of surgery, some participants were not able to involve their families in their decision-making and care:

So, I really only had from the Thursday night to the Friday morning before my surgery; there wasn’t a lot of time to speak to people about it to be honest. (Participant 5, telephone interview)

The unexpected character of amputation surgery, even when minor, may also limit the individual’s ability to understand what happened. In contrast to the experience of Amputation as the end of a journey of ill-health, this sub-theme shows that participants who experienced an urgent or unexpected amputation had limited time to understand and prepare for the imminent procedure, which precluded both their ability to ask questions and understand the potential impact of amputation on their life.

Theme 2: The Experience of Information and Support From Healthcare Staff

This theme describes participants’ experiences of being prepared for amputation surgery. The analysis revealed notable differences in the way in which participants were prepared for this procedure; while some participants felt satisfied with the information and support received, others described this as deficient or even non-existent. The following sub-themes encapsulate participants’ accounts of this process: (1) “Clarity in staff–patient communication” and (2) “Attitudes and support from healthcare staff.”

Clarity in Staff–Patient Communication

Participants often described the time around their surgery as a period of great confusion; there was an agreement, in this scenario, that amputation patients should be offered an honest and clear description of what to expect about surgery rehabilitation and future quality of life. The participants’ accounts suggested that staff communication, or lack thereof, in the pre-amputation consultations influenced their feelings of preparedness. This included clarity in discussions on key questions, such as participants’ prognosis and the process post-amputation, which were perceived as an essential factor to equip patients for surgery:

I think everybody should know what they’re looking [at], you know, once they get done what they’re expected, you know, and stuff like that. (Participant 16, qualitative questionnaire)

Receiving information on the amputation process can be initially overwhelming for some patients. However, having an understanding of what to expect during the surgery and post-operation care seemed to alleviate participants’ concerns and enhance their feelings of preparedness:

[…] I was actually fairly well, as relaxed as you can be about getting your leg taken off. But I was mind-wise in a pretty good place, because I knew pretty much what was ahead of me. Actually, I had a pretty good idea of what was ahead of me. I didn’t have any grey areas on it; knew what to expect, and that does really help. (Participant 2, telephone interviews)

Despite describing the preparatory conversation for their lower-limb amputation as a “daunting” experience, the quote above shows how information from healthcare professionals helped manage the trepidation about surgery. Other participants, however, felt that information provision was not as clear or forthcoming as it could have been:

With my right ankle I was told it could be saved, and I still have it. But my left, my left ankle was beyond saving, and they could have been a little forceful about telling me; so, that I would have understood better, and addressed sooner … (Participant 15, qualitative questionnaire)

Preparatory discussions surrounding the possible outcomes of not undergoing surgery and chances to wear a prosthetic limb were also important to the participants. Participant 11 noted how this information from staff members helped them balance the risk factors involved and make an informed decision to proceed with an amputation:

One of the discussions was the possible effect of not having the amputation. Another was the fact that not every amputee is able to walk on a prosthetic leg. This allowed me to make a more informed decision. (Participant 11, qualitative questionnaire)

From participants’ accounts, it transpires that preparatory conversations were commonly held by with the surgeon or anesthetist who were often the people taking consent for the surgery itself:

Yeah, it was the surgeon that I saw, and he took consent and also for what they wanted to do with the leg after they took it off. (Participant 5, telephone interview)

The excerpt below describing a multidisciplinary approach to preparation for surgery was an exception to participants’ reported experiences:

The possibility of having an amputation was discussed firstly with the podiatrists and diabetic consultant […] After this, it was arranged that I go to speak to one of the physios that work with amputees […] All this combined removed a lot of the scary side involved. (Participant 12, qualitative questionnaire)

This indicates that pre-operative discussions that include staff from different clinical disciplines involved in amputation care could be beneficial, as the diverse skills that each staff member means that they can offer tailored information and answer patient questions holistically.

Attitudes and Support From Healthcare Staff

From our research, it was clear that there were a number of areas in which patients felt satisfied with their pre-operative preparation. Such accounts affirm that the staff did everything they could to support them in this process. Patients particularly valued staff’s approachability and availability to answer their queries:

He’s [surgeon] always been really good; he’s really down to earth. So, you know the backup I’ve had from him; if I need anything, you can just give him a ring. (Participant 1, telephone interview)

Staff’s availability and open attitude were central elements of participants’ reported positive experiences of pre-operative care. Many participants described their relationship with the staff involved in their care as being based on trust and support. The accounts below reflect the positive impact of establishing this kind of relationships between healthcare staff and patients:

Knowing I had full trust in my care team was extremely reassuring, and I genuinely felt they had an interest in my recovery and progress. (Participant 11, qualitative questionnaire)

Likewise, participants who reported to be satisfied with the way in which they were prepared for surgery indicated having been given sufficient opportunities to ask questions:

I was given ample opportunity to ask questions leading up to the amputation. (Participant 12, qualitative questionnaire)

Some participants reported not having been well informed about the extent of their upcoming surgery:

(…) they took the bones out my hands and stuff. I wasn’t expecting that at all. I thought it was just a finger that they were gonna remove and that was it. (Participant 3, telephone interview)

I knew nothing about the fact that I was about to have my leg amputated. (Participant 17, qualitative questionnaire)

Participant 4, who was on an induced coma at the time of their surgery, complained about staff’s lack of sensitivity when informing their spouse about their prospective amputation:

So, I do remember speaking to my husband on the phone about it, and he’d been told separately, and I think probably fairly brutally by a doctor. (Participant 4, telephone interviews)

In comparison with doctors, nursing staff were usually perceived as more approachable and empathetic, and therefore were viewed as a key staff member to ask questions and gain information:

The registrar was just in a hurry to go and get all the consultation, the consent forms done. So, he was kind of in and out; so, I didn’t have any chance to say anything or ask any questions even if I had them. But then the nursing staff were just more human and more approachable at the time. (Participant 6, telephone interviews)

This theme described the elements of participants’ preparation for surgery and the differences of their experiences of this process. Notable differences transpired in their reported experiences of preparation; while some participants affirmed to be satisfied with the care and support provided, others indicated cases of poor information provision and reduced availability and attention from staff.

Theme 3: Patients’ Views on Approaches to Preparation

This theme encapsulates participants’ understanding of what constitutes good preparation for amputation surgery. The need for accessible and realistic information about surgery and life post-amputation was an important feature of participants’ understanding of good preparation for surgery. Participants’ views on preparation for surgery are organized in the following sub-themes: (1) “Participants’ support and information priorities,” (2) “Searching for information online,” and (3) “The role of experiential knowledge in preparing for amputation surgery.”

Support and Information Priorities

In this sub-theme, participants retrospectively describe the most significant information and support needs they had around and immediately after amputation surgery. When recalling this period, participants explained that, apart from the risks associated to amputation surgery, their questions and concerns had a pragmatic character, for instance, mobility prospects—including opportunities to wear a prosthetic limb—and how to adjust to daily life:

The biggest thing I was worried about was how soon I could get a leg, to be honest. I wanted to get up and about mobile as soon as I could, that was my biggest thing. (Participant 5, telephone interview)

Receiving some information about what living with limb loss involves was also seen as a useful part of being prepared for the experience of undergoing an amputation:

[…] to be able to book an hour of an OT’s time to chat through life after amputation would be so helpful for some. (Participant 11, qualitative questionnaire)

Participants' accounts showed a sharp polarization in regard of the relevance attributed to psychological support; whereas some participants tended to minimize the psychological risks of amputation, others emphasized the need of emotional and psychological support for amputation patients. From the following excerpt, it can be inferred that sometimes participants prioritize their medical needs and do not wish to receive counselling:

And they kept saying we could give you a meeting with a counsellor (…) I was waiting for this radiology treatment for killing off the nerves; so, I said unless it’s a radiologist (…) they are not really going to be much use to me. (Participant 2, telephone interviews)

In contrast, other participants felt that psychological support was essential as part of their preparation:

I think some sort of psychological support is essential, or the access to psychological support, because you don’t realize what a big change it is, no matter how prepared you are. (Participant 6, telephone interviews)

Participants’ accounts showed an agreement about the need to prepare patients for amputation surgery and adjustment to daily life; “knowing what to expect” and being able to prepare and plan for life post-amputation was considered a facilitator of recovery, including psychological well-being. Psychological support was not always seen as needed for some patients, but provision of such formal support is likely useful even if patients choose to not utilize it.

Searching for Information Online

Some of the participants discussed their experiences of searching for information about amputation online. It can be argued that these participants resorted to online resources to learn about, and prepare for, amputation surgery and recovery to circumvent the lack of health services’ information resources specific to amputation patients:

The one I looked at the most online was [website]. I’ve watched a lot of her videos and what she’s done … you could almost do with like a helpline setup. But I don’t know if there is, because I didn’t have anybody really to ask, you know? […] But to speak to anybody; I couldn’t find anybody to speak to other than someone walking around in [town] on a prosthetic. (Participant 1, telephone interview)

Some participants relied on online sources to learn about the causes of their amputation and familiarize themselves with amputation surgery:

[…] I actually watched quite a few YouTube [videos] on actual amputations. But it really helped, because then I understood why I had pain in my sciatic nerve because it’s been cut, basically. (Patient 2, telephone interview)

Participants also went online to find charities and amputation support organizations and to see how the rehabilitation and adjustment to life have been for others. Sometimes, participants sought specific information on technical adaptations that would allow them to continue to practice hobbies and sports after having lost a limb. Other participants reported working with charities and social media groups to use their own experiences of becoming an amputee to provide peer support to prospective and recent amputees.

For me, actually reading about what other amputees can do is really helpful. And just sharing those experiences with them on some of the forums. For me, the (social media group) is really useful. So, I think any form of contact that you can have and any way of making amputees more visible is helpful. (Participant 4, telephone interview)

Some participants urged caution on the use of online resources to protect themselves from potentially emotionally harmful material:

Yeah, there was a fair bit out there. But I didn’t want to do too much online, because it can be a bit on the scary side, sort of before you have it done, all the horror stories and everything else. (Participant 1, telephone interviews)

This sub-theme encapsulated participants’ motivations to search for amputation-related information online. Participants’ information needs focused on the experiential and practical aspects around limb loss and how to continue to do the same things they used to do before amputation surgery, including social life and leisure activities.

The Role of Experiential Knowledge in the Preparation for Amputation Surgery

Some participants reported having spoken with other amputees before or after their surgery, usually following a recommendation from their medical team. This sub-theme showcases the importance of the sharing experiential knowledge from the participants who did speak to other amputees. Some of the participants engaged with other amputees through online forums and social groups as discussed in the previous sub-theme; however, a minority of the participants were able to speak with another amputee face-to-face. Many of the participants who did not speak to another amputee mentioned their desire to and how this could have enhanced their preparation. Participant 2 discussed how it was important for them to speak to fellow amputees who can relate to their experience and provide guidance beyond medical information:

But I absolutely think that is vital to speak to other amputees and get an idea, because your health professionals, as much as they know the situation, they have no idea what it feels like. (Participant 2, telephone interview)

Of those who spoke with fellow amputees prior to surgery, participants seemed to feel supported in their preparations for surgery. Participants highlighted how this helped them anticipate forthcoming challenges associated with limb loss and learn strategies to overcome them. However, not all participants were able to communicate with another amputee prior to their surgery. For example, Participant 1 discussed how they found performing some daily tasks more difficult after their amputation, which could have been better anticipated if they had the chance to speak to someone with experiential knowledge:

Simple things, or even put a, believe it or not, putting a sock on. When you haven’t got a leg on the other side, you put a sock on you got nothing to balance. (Participant 1, telephone interview)

Experiential knowledge on how to adapt life post-surgery also circulates in a written form among amputation patients. Participant 6 explained that they learnt about key aspects of surgery preparation and recovery, from a booklet given by another fellow amputee. As they point out below, the access to this valuable information usually depends on personal relationships, when it should be universally accessible by all amputation patients through the health services:

I was quite lucky; I had a little book given to me from a fellow amputee, who came to see me just before my amputation. (…) I think this is something that needs to be done centrally and being made available to everybody that has an amputation. (Participant 6, telephone interview)

Speaking with other amputees, however, is not always a positive experience. Participant 4 reported having felt overwhelmed after speaking with an amputee who was too far ahead in their recovery for it to feel relevant to their own present situation:

So, he has been an amputee for about 20 years. And it was basically, yeah, I drive; I do this; I do that; and that was at the point where I was still learning to stand. So that was great, but it was sort of, it was quite overwhelming as well. (Participant 4, telephone interviews)

Despite the caution, this sub-theme shows that the experiential knowledge and support provided by other fellow amputees was an essential element of some participants’ preparation for surgery.

Discussion

This paper provides new qualitative insights into amputation patients’ emotional, informational, and support needs during their preparation for amputation surgery. A relevant contribution of this paper to the subject of patients’ preparedness for amputation surgery is the importance of clear communication from healthcare providers about the amputation process, outcomes, and rehabilitation pathway. Despite the preeminent role that patients attributed to information and support in amputation pre-operative care, the analysis revealed notable differences in patients’ reported experiences of care; while some affirmed affirmed satisfaction with the care and support received, others complained about the quality of the information received and the lack of support from staff. The findings indicated, in addition, that information provision’s excessive focus on surgical risks limited patients’ opportunities to psychologically and emotionally prepare for amputation. Participants, in this regard, pointed out that their information provision tended to omit the practical and every day aspects of life with limb loss, hindering recovery and adjustment to daily life.

This is pertinent as previous research notes the need to provide pre-operative information, particularly when patients are required to take care of themselves after discharge (Abrahamsen et al., 2024; Suhonen & Leino-Kilpi, 2006). However, it is noted that not all patients desired psychological support but rather expressed their need for improved information on the surgery process and life post discharge. To compensate for this informational deficiency, new amputees sometimes relied on the experiential knowledge developed by other amputees further ahead in their amputation journey, either through online or face-to-face interactions. Whilst qualitative research has described how multidisciplinary amputation teams understand and utilize experiential knowledge in rehabilitation (Sanders et al., 2021), this paper is the first in illustrating patients’ strategies to acquire and mobilize experiential knowledge to prepare for amputation surgery and adjust to daily life through seeking online information and peer support.

This study found notable differences in patients’ experiences of pre-amputation care. Whilst some participants were satisfied with the preparation received, others reported lack of information provision and not having felt well-supported by their healthcare team. A recent interview study has highlighted the differences in patients’ reported experiences of in-hospital rehabilitation (Schober & Abrahamsen, 2022). Our findings support a study exploring patients’ experiences of NHS amputation care, as the participants in our study who reported positive experiences tended to associate these with an adequate information provision and staff’s availability and open attitude to their questions (Hanna & Robert, 2022). Furthermore, our findings highlight that those who feel supported by staff and report having sufficient information often feel better prepared for amputation surgery. The importance of staff–patient partnerships on amputee’s psychological well-being has been previously observed (Torbjörnsson et al., 2017); support and empathy from staff can help patients cope with uncertainty, limited mobility, and autonomy expectations after amputation surgery. Whilst this study was exploring the specific experiences of patients who had undergone an amputation, surgery is not always the best option for all patients. The focus on the lived experiences of those who have had an amputation likely foregrounds surgery as the “solution” to the illness, injury, or disease the participants were facing. Balancing quality of life in the decision-making regarding amputation also requires the same good patient–staff communication, and that same high level of empathy and support from healthcare professionals with the patient as preparation for surgery does. Exploring how patients can be better prepared in the context of deciding to not have an amputation, including preparation for palliative care, remains an underexplored area. Future studies could usefully explore this further to better support this group of patients.

Independently of their reported experiences of hospitalization and pre-operative care, participants deemed information provision, together with support from healthcare providers, as the central element of their pre-operative care. A recent study has also shown that amputation patients consider clear and concise information about surgery and expected outcomes as key features of shared decision-making for this procedure (Leonard et al., 2023). Pre-operative information can empower surgical patients, enhancing treatment adherence (Suhonen & Leino-Kilpi, 2006), and reduce anxiety (Kiyohara et al., 2004). Healthcare providers’ understanding of patients’ individual concerns and needs can support patients in processing the information of an upcoming surgery (Roche & Jones, 2021). Despite the benefits that a tailored information provision can have for surgical patients, an adequate information provision is an unmet demand of some patients facing amputation, especially in the case of lower-limb amputation (Furtado et al., 2017).

A common complaint among this group of patients is that the information provided by their medical team is principally focused on surgical risks and complications, with some affirming that they had a poor understanding of the rationale of their amputation (Radenovic et al., 2022) and a lack of knowledge of the surgery outcomes and what to expect about life afterward (Torbjörnsson et al., 2017). In agreement with this, our findings suggested that an information provision covering the risks and expected outcomes of amputation surgery, including adjustment to daily life post-surgery, is not universally accessible to all amputation patients through the healthcare system. Participants in our study who reported not being satisfied with the care received tended to associate this experience with an inadequate information provision, including not having been informed about their upcoming amputation, and poor support from their multidisciplinary team. Previous qualitative inquiry into patients’ experiences of amputation surgery has also highlighted patients’ complaints that healthcare staff had not taken sufficient time to discuss their surgery and that they were not sufficiently involved in the decision about their amputation (Torbjörnsson et al., 2017). Participants who noted a lack of quality information received in preparation for amputation surgery explained that this lack of information negatively impacted their psychological well-being, reflecting the link between patients’ difficulties to understand the causes of their amputation and feelings of losing control and fear about the future (Liu et al., 2010). Given amputation can bring a raft of changes to patients, including negative perceptions of body image, self-identity distress, and grief, some patients may also require additional psychological support beyond the direct clinical care team. Cognitive behavioral therapy can be useful for some patients (Jo et al., 2021; Molavi et al., 2017; Pereira et al., 2023), but others may value approaches including multidimensional spiritual psychotherapy (Arefpour et al., 2024), acceptance and commitment therapy (Shergmin et al., 2023), or eye movement desensitization and reprocessing (Murray et al., 2024). These approaches may help patients manage depression, anxiety, and trauma as well as acceptance of their experience and new bodily identity. Further exploration of psychotherapy interventions for patients undergoing amputation is needed.

Some participants actively sought the experience and expertise of other amputees, both through online and face-to-face discussions, to facilitate their return to everyday life, for instance, to learn about living with limb loss, moving around the house, or resuming leisure activities. In doing so, they prioritized Borkam’s (1976) notion of “experiential knowledge,” meaning they valued the knowledge originated from personal lived experiences of amputation. In contrast to previous literature on patients’ knowledge-making practices, participants and the amputees they learn from do not elaborate on their own experiences to challenge medical knowledge about amputation (Brown et al., 2004), nor do they re-appropriate this type of knowledge to fundament their demands as patients (Akrich, 2010). Rather the contrary, they rely on others “lay expertise” (Lave & Wenger, 1991) to circumvent the often-limited information on how to live with limb loss that some received in preparation for amputation surgery. Learning how to adapt to the everyday challenges of living with amputation is not only essential to construct their new identities as new amputees (Atherton & Robertson, 2006) but also to enhance their recovery and regain some control over their lives after amputation surgery. However, some participants indicated their satisfaction with the communication and support they received, suggesting a need for a more tailored approach to information and support provision (Suhonen & Leino-Kilpi, 2006). Peer support is also beneficial for peer support mentors: providing hope and helping others realize that there is life after limb loss contributes to the well-being of others (Richardson et al., 2020).

Whilst this study recognizes the benefits of peer support in coping with the psychological and emotional aspects of amputation, its findings highlight the potential importance of the circulation and acquisition of experiential knowledge from other amputees to adjust to life after limb loss. Integrating peer support into care for amputees would enable patients to receive the potential benefits of peer interaction, but also reduce the burden on healthcare professionals to attempt to illuminate the lived experiences of amputation.

Conclusion

Patients who underwent an amputation experienced the early phases of surgery as an uncertain and emotional time, with inconsistent information provision and support from healthcare staff. Our findings indicate amputation patients would like improved clarity of information and communication from staff members regarding their condition, the surgical procedure, and rehabilitation, along with more opportunities to engage with fellow amputees as a means of peer support. The introduction of a peer support program within hospitals would help facilitate this desire for experiential knowledge from those undergoing amputations; a number of charities already offer such provision but creating better awareness of such schemes among healthcare professionals would be helpful. People living with limb loss could benefit from reliable and evidence-based support resources accessible online. This may be beneficial considering the extended use of online sources among both patients facing an amputation and long-term amputees in order to obtain information about surgery and, later on, to learn how to adjust to life. Those who did experience clear information and support from their healthcare team felt more prepared for their amputation surgery and learning to live with an amputation. Utilizing “what works” would help to enable healthcare professionals to tailor the types of information patients receive, and getting feedback from existing amputees would be helpful for this. Professionals could also consider how preparatory work is done, making sure there is time, private space, and opportunity to ask and have questions answered are useful starting points for such work. Further exploration of the potential benefits of different types of psychotherapeutic support for those undergoing an amputation would enable a clearer picture of the types of support this patient group needs and to build a case for access to such services. Any interventions or informational resources for this patient population would benefit from wider evaluation, to begin to develop the body of knowledge about effectiveness and to disseminate best practice with the goal of supporting a greater number of patients.

This study does not make claims to be representative of all amputees. Further studies to examine a wider range of experiences of amputees would be beneficial, including those amputees who did benefit from peer support in their recovery. Notwithstanding these limitations, our findings offer insight into how healthcare professionals could help improve the experiences of amputees through provision of information and communication in ways which patients themselves find most beneficial.