Stories About Living and Going Through Reconstructive Surgery for Pressure Injuries—A Narrative Study

ABSTRACT

We investigated the lived experience of adult patients with ischial, sacral and trochanteric pressure injuries going through reconstructive surgery. Five informants were recruited. The study was conducted using narrative methodology including in‐depth interviews. The transcripts were analysed using structural and thematic methods as described by Riessman. Three main themes were derived: The wound—that changes life; Time—it's my life passing by; and Surgery—a fast track back to life. This study emphasises the importance of surgery as a way to reduce the time it takes for a pressure injury to heal. Involving patients in their own care and sharing information about their treatment is crucial to empower them and maintain a sense of hope.

Summary.

• Pressure injuries are associated with personal suffering and high economic costs. Knowledge of the role that people with pressure injuries attribute to reconstructive surgery as a treatment strategy for healing wounds is largely missing from current research.

• The aim was to explore the lived experience of patients with ischial, sacral and trochanteric pressure injuries and their way through reconstructive surgery.

• This study emphasises the importance of surgery as a way to reduce the time it takes for a pressure injury to heal.

• Involving patients in their own care and sharing information about their treatment is crucial to empower them and maintain a sense of hope.

1. Introduction

Pressure injuries are a difficult and costly problem for both the person affected and the healthcare system [1]. It is also a problem that the healthcare system has failed to address, despite extensive efforts [2, 3, 4]. Pressure injuries occur mainly over bony prominences such as the sacrum, tuber ischii and trochanter major. These locations are also where most complications after reconstructive surgery occur [5]. The people most at risk of pressure injuries are temporarily or permanently non‐ambulatory individuals [6]. Patients with spinal cord injuries, that have a lifelong effect on both sensation and mobility, are a particularly vulnerable group in terms of pressure injuries [5, 7].

The most important aspect of avoiding pressure injuries is prevention and the most important preventive intervention is pressure relief [8, 9]. In cases where prevention fails in such a way that injuries develop and progress, reconstructive surgery in the form of flap surgery may be a treatment option. However, reconstructive surgery is not a first‐line option and the recommendation is that it should be used primarily for deep wounds (categories 3–4), where a favourable outcome of other treatment regimes has failed [9, 10]. In practice this means that patients going through surgery for their pressure injuries have been living with their wounds, and the restrictions that the healthcare system has deemed necessary, for an extended period of time.

Reconstructive flap surgery is a surgical procedure that involves moving tissue from one area of the body to another. The main advantage is that it leads to direct coverage of the pressure injury area, which in most cases greatly accelerates healing. The limitation, however, is that there is not an infinite amount of tissue on our body suitable for this type of surgery, which means that the problem of recurrent wounds, which has remained at roughly the same high levels for the last 15 years, needs to be addressed [2, 3].

Apart from the fact that other treatment options must be ruled out for surgery to be considered, the current guidelines also advocate that patients' goals, motivation and adherence to treatment programmes need to be assessed and evaluated. These recommendations are not currently based on evidence, but rather on the clinical judgement of experts, as important factors to ensure healing and avoid recurrent wounds [9].

The effectiveness of reconstructive flap surgery for pressure injuries is currently uncertain, as there are no studies examining its outcome in relation to other treatments [6]. Instead, the majority of studies in the field investigate clinically measurable differences between different surgical techniques, or patient‐related risk factors and their impact on flap outcomes. The results of these studies are then discussed in terms of psychosocial hypotheses, such as patient experience and compliance, for which there is currently no reliable data [5, 11, 12]. This leads to a speculative form of knowledge that makes it difficult to implement in clinical practice.

2. Background

An excessive focus on clinically measurable predictors, also known as surrogates, risks jeopardising patient care if they are allowed to prevail without regard to the outcome measures prioritised by patients [13, 14]. Too narrow a clinical view of risk factors, interventions and desirable outcomes may also lead to misinterpretation of treatment adherence [15].

In order to avoid this development, there is a demand for healthcare to complement the biomedical perspective with a more person‐centred knowledge, which is often obtained by asking for patient experiences [16]. Patient experience can be explained as patients' perception of a phenomenon where they are the best, or in some cases even the only, source of knowledge [17].

The knowledge that currently exists about patients' experience of pressure injuries can be roughly divided into two different aspects of care, prevention and conservative treatment. Ledger et al., in their review of adherence to preventive interventions, emphasised the importance of inviting patients as co‐creators of their care [18]. Latimer et al. similarly concluded that patients with pressure injuries had a strong desire to be more involved in their care, but that current care processes and organisational conditions seemed to hinder this [19]. Clark et al. developed these ideas by advocating for person‐centred care, citing stories that demonstrated a link between unique circumstances in an individual's daily life and the development of pressure injuries [20].

Personal stories of living with pressure injuries describe an impact on virtually all areas of life. Hopkins et al. described how pressure injuries, in an elderly population, were perceived as a never‐ending story containing endless pain [21]. Gourlan et al. emphasised the importance of creating a greater understanding within the healthcare system of what it actually means for a person to be prescribed bed rest for an extended period. This conclusion was drawn from stories describing how long‐term restrictions in the form of bed rest led to dramatic consequences for psychosocial health both in terms of involuntary isolation and depression [22]. Cullum et al. explained this further by highlighting how current treatment models primarily focussed on healing and therefore failed to also address needs based on ‘living with’ long‐term wounds [23].

Many aspects of patient experience described in studies on prevention and conservative treatment are transferable to surgical treatment. However, they do not provide answers to the role of surgery from a patient perspective, or how patients undergoing reconstructive surgery experience the care they have received. Nor do they answer the question of what aspects of surgical care need to be developed to reduce the number of recurrent wounds after surgery [6, 24].

The aim of the study was to explore the lived experience of patients with ischial, sacral and trochanteric pressure injuries and their way through reconstructive surgery treatment and care.

3. Methods

3.1. Design

Narrative method, as described by Riessman [25, 26], was used. Data were collected through individual interviews that were transcribed and then analysed structurally and thematically.

3.2. Theoretical Framework

Narrative method exists within the constructionist paradigm, with a relativists' view of the world and subjectivists' view on knowledge [27]. At the basis of the method is the idea that people's understanding of their lives and their surroundings is best communicated through the construction and reconstruction of stories. People are thus active co‐creators of reality whose meaning is formulated through social interaction and the use of language [28]. Knowledge is thus something that each individual person constructs and builds up in interaction with the outside world [27]. The need for stories seems to emerge and be especially strong when we are exposed to interruptions in our usual pattern of life [29, 30, 31] something to which a pressure injury can lead.

What distinguishes a story from other types of texts is that it has a beginning, a middle and an end. Sandelowski [32] describes narrative in more general terms as people's attempts to investigate and explain life, while Riessman's definition, which is the one used in this study, defines a narrative as a specific conversation organised around important events in a world created by the narrator, representing a series of events and their associated meaning [25].

3.3. Study Setting and Recruitment

Patients who had undergone flap surgery for ischial, sacral, and trochanteric pressure injuries at the Department of Hand‐and Plastic Surgery and Burns in Linköping Sweden from January 2020 to December 2023 were invited to participate in the study. Patients who underwent surgery from January 2020 until August 2021 were contacted by letter retrospectively, while patients who underwent surgery from September 2021 onwards received both an oral and written invitation to participate in connection with the current treatment occasion. All invitations and all contact with informants were carried out by the first author.

The department where the study was conducted is part of a tertiary hospital serving 1.5 million inhabitants for referral of patients who require reconstructive surgery for pressure injuries. All respondents have undergone surgery and associated care based on the departments pressure injury reconstruction care programme, which has been the same for the last 10 years. The care programme essentially involves 10 days of inpatient care followed by 1 month of prescribed bed rest at home or in a community setting, followed by 1 month of a strictly time‐limited sitting schedule.

The inclusion criteria were adulthood (18 years and older) and a sufficient command of the language to give written consent and hold a conversation. Figure 1 shows selection of the informants.

FIGURE 1.

Selection of the informants. Patients who underwent surgery from January 2020 to December 2023 were contacted and offered participation.

3.4. Data Collection

To make people want to talk about important events in their lives, it is important to create a favourable environment for the interview [26]. To achieve this, all respondents were asked to choose the place where they wanted the interview to take place. All respondents chose their own home.

Data were collected by the first author, through individual, unstructured, interactive in‐depth interviews. The interviewer's role was to open up the topic by verbally clarifying the purpose of the study and asking the respondent to tell their story in a way that was meaningful to them. The grand tour question [33] presented to the respondents was “I would like to ask you to tell me about your pressure injuries, what it's like to live with pressure injuries and your experience of going through reconstructive surgery.”

The interviews largely took the form of a conversation in which the respondent talked about their experiences while the interviewer asked for examples, clarifications, or for the respondent to elaborate on their thoughts.

The interviews were recorded on a dictaphone and then transcribed verbatim by the first author. The average length of the interviews was 78 min (43–110 min). At the end of each interview, the respondents were encouraged to contact the interviewer again if there was anything they wanted to clarify or if there were more things they wanted to share.

3.5. Data Analysis

The common denominator of narrative analysis is a focus on what are the three components of a story; content, structure, or form [31]. It is also possible and, in some respects, desirable, to use several different analysis models to better capture what is important in a story [29, 34]. In this study we used two different methods of analysis; structural and thematic.

Structural analysis aims to study how a story is structured which, according to Riessman, can provide clues to its inherent meaning [25]. The structural analysis began by searching for narrative segments based on Riessman's definition of what characterises a story. This was done by listening to each individual interview and reading each transcription both once and several times. A new transcription based on identified narrative segments took shape, to which the first and third authors then individually applied linguistic categories. ‘Complicated actions’ described situations as respondents perceived them, while ‘evaluation’ revealed the meaning they attributed to them (Table S1). The encodings were then compared to arrive at a common position on how each story could be understood from its linguistic perspective.

The thematic analysis started with a return to the transcribed text. The focus of analysis was now on the content of the stories. Passages that were interpreted as important for the stories as a whole were marked in the text and specific extracts or quotes that could summarise these passages were written down on sticky notes. The notes, with each respondent assigned a different colour, were then placed on a wall and moved around according to their content, eventually creating three common themes (Figure 2). This part of the analysis was carried out by the first author, while the third author's role here was to ask for clarification on interpretations, thus deepening the thinking behind the analysis and give rise to the subthemes. The interpretations were also compared with the outcome of the systematic categorisation from the structural analysis.

FIGURE 2.

The thematic analysis. Extracts and quotations from the transcribed narratives were put on sticky notes. Each respondent was assigned a different colour. The notes were placed on a wall and moved around according to their content, creating three common themes.

Quotations from the respondents' own stories have been used to contribute to a more vivid and multifaceted text, they have also been used to illustrate the interpretations made by the authors [35].

3.6. Ethical Considerations

The study was approved by the Swedish Ethical Review Authority (2021–03613). Written and oral information about study participation was provided to the respondents and written informed consent was obtained before the interviews took place.

4. Results

The results of the study are based on five stories told by five different informants with a spinal cord injury, four men and one woman, who have in common that they have all undergone reconstructive flap surgery for pressure injuries located over sacrum, tuber ischii or trochanter major. The mean age was 64 years with a range of 47–82 years. For two of the informants, this was their first flap surgery for pressure injuries and thus also the first encounter with specialised care, for one informant this was the second operation, while two had undergone flap surgery on four or more occasions.

The main findings of the results were: The wound—that changes life. Time—it's my life passing by and Surgery—a fast track back to life.

4.1. The Wound—That Changes Life

The appearance of a pressure injury is described in the narratives as something unexpected and dramatic, suddenly it was just there. The stories testify to how the wound started somewhere inside the body and then erupted. One story described how one day the partner simply said, “You have a hole in your back” (interview 1), while in other stories there was a more detailed description of how it had happened and been experienced.

It popped up one day when I was in the shower, you know, and I looked at the floor and called the nurse and said that if you don't come and do something right now, I'm going to die in two minutes, something back there just flapped and burst open and there was blood all over the floor (interview 3).

That the appearance of a pressure injury did not behave like a normal wound confused the informants and although they considered themselves well informed and knowledgeable, this was something new, they did not know it could happen like this.

I mean, if this had been a wound that had started from the outside, it would have been a completely different matter, I didn't understand that a wound could grow from the inside, I didn't understand that, that this pressure, that it didn't open up until the wound was sort of outside, because I mean, if I've had a chafing wound or something like that then the wound sort of starts from the outside, and what you see is what it is (interview 1).

The fact that the wound is on the back of the body is described as an aggravating factor. The possibility for the informants to inspect the skin themselves is perceived as limited, making them dependent on the eyes of others. One respondent who has no one to rely on recalls how he started using a mirror to inspect his wound himself. The wound seen in the mirror had occurred 6 years earlier and the informant went on to tell a story describing what he saw in the mirror and how it made him feel.

When I saw how much fluid was coming, I got scared and it smelled bad and I got worried and with every month that passed, it just became more and more (interview 4).

These kinds of feelings of discomfort and fear evoked by the image of the wound were experiences that recurred throughout the stories and which the respondents recounted with great emotional involvement.

I didn't think there could be such wounds, you get scared (…) such holes, you're terrified (interview 3).

Mine was brutal, mine was really fucking bad, to put it blandly that is, the whole damn butt cheek was almost green, black marshland‐like, it wasn't nice then and it had gone very far by the time I consulted the hospital for it (interview 2).

4.1.1. Who to Blame

Stories that sought to explain why a specific pressure injury had occurred described both internal and external causes. Internal causes referred to the individual and were expressed by the informants blaming themselves for the occurrence of the ulcer. “It's really my fault because it's me sitting and that's what caused it” (interview 3) or as another respondent put it.

It must have been that I've been sitting too much, from early morning to late evening, every day, every day, every day. I've never rested or laid down or anything, I've worked quite a lot, you know, so that's been my problem, I haven't taken care of my body (interview 5).

External causes, on the other hand, were related to interventions that the informants had been advised to do and whose initial aim was to prevent injuries but which, with hindsight, had led to the opposite effect and instead contributed to the development of a pressure ulcer.

I've managed, I've been in a wheelchair for 36 years and I have had no pressure injury tendencies in all these years, but then I managed to lose a few kilos and was advised to switch to a tempura mattress, which I later learned that I shouldn't have done (interview 1).

A difference between the two explanatory models can be discerned, where those with recurrent injuries tend to increasingly blame themselves (compared with those who experience pressure injury for the first time).

The stories point to knowledge as an almost crucial aspect of avoiding pressure injuries. All informants describe a good level of knowledge at present, but it is clear from the stories that the acquisition of this knowledge has been very different. This is partly dependent on when in time the spinal cord injury occurred, which itself led to a life tied to a wheelchair and a life‐long risk of pressure injuries; but it also depends on where the subsequent care was provided. Knowledge was in a majority of the stories described as something that developed over time, through experience. “I have learned from previous mistakes” (interview 3).

One of the “mistakes” around which the story unfolds is a flight.

I sat on that flight (…) it was probably 9 h, sat there and couldn't get out of the seat, you know, and I had four pressure sores, you know, when I took my pants off. Ignorance…I bought myself a new pair of jeans for that trip, you know (interview 3).

Pressure relief is something that the informants ranked as the most important preventive strategy to avoid pressure injuries. However, the importance of what it means to “change one's position” was described as previously misunderstood. The recommendations only felt possible to follow when the concept of “pressure relief”, and how to achieve it, was clearly explained/demonstrated to them.

When people hear about changing their sitting posture, I can only look at myself, but I thought ´how the hell can I do that, I'm sitting the way I'm sitting,’ but small changes, like moving a centimetre here or there, were apparently what they meant—and that's enough (interview 2).

4.2. Time—it's My Life Passing by

The fact that the period of pressure injuries and enforced restrictions lasted for a long time for the informants is something that plays an important role in their stories. “I was on sick leave for 455 days” (interview 2). For others the period of having to live with pressure injuries returns again and again “I usually say, see you in a year, because then it usually happens again” (interview 3).

Most often, the time is described as a long stretch of wait interrupted by routinely dressing changes which the respondents perceived as futile.

It felt like they were doing the same dressing changes, over and over again, and expecting it to suddenly get better (interview 2).

Respondents' experiences of lack of positive results led to stories of a life that had been put on hold and where access to surgery was now seen as the only possible option to speed up healing and return to a normal life. This time aspect and the ability of surgery to shorten the process was also confirmed by the referring doctor.

The doctor said; you have to try to come to terms with the fact that this is your life now, and if you don't get an operation, it will be a seven‐to‐nine‐month healing time before this have healed so you can sit again (interview 1).

The return to a normal life and routine, as it was before the wound occurred, is described as correlating with the time it took for the pressure injury to heal. In the cases where the healing process was long, the forced bedrest resulted in a general deterioration of physical condition which continued to affect the possibility of autonomy for a long time.

I'm still not in good shape, physically, and I don't know how long it will take (…) Basically, the fact that I got into this is clearly because there was so much bed rest, forced bed rest, it was thousands of hours (interview 2).

4.2.1. Experiences of a “Non‐Life”

The stories describe the experience of living with pressure injuries as a non‐life, as a mere existence characterised by worries, lost relationships, lack of impressions and boring schedules.

You don't live with pressure injuries, you exist (…) you can't do anything, it's just a lot of pressure relief, a lot of healing, you don't have a life, you only have a being, you have an existence (interview 2).

And no matter what they did, thoughts of the wound were always there, and the uncertainty of what would happen in the future created anxiety.

It's not life, I constantly think about the wound when I sit, I have to relieve pressure all the time and when I lie in bed, all the time my thoughts are only on the wound, how will it be, what will happen in the future, it is a dark life (interview 4).

The restrictions that were considered necessary for the wound to heal severely limited the informants' ability to continue working and to participate in social activities. Stories testify to experiences of exclusion and loneliness and how social media and phone calls can hardly be considered a substitute for face‐to‐face social interaction.

Yes, it has been hard, everything has been a disaster. I haven't been able to go out in my nice car, I haven't gone boating. I haven't been out with friends. I've been lying in a bloody bed (interview 5).

The experience of living with a pressure injury is described as life changing; you will never be the same again afterwards and there is always a brooding concern for getting new wounds. This worry manifests itself in phrases like ‘live now’, ‘now I have to be careful with myself’, and ‘it's been a difficult time having those wounds—now I have to think and be careful not to get new ones’. The related experiences have developed into motivators for personal routines and preventative strategies to ensure it will not happen again. For those who have experienced several wounds, the attitude that meticulous self‐care can prevent new injuries, has declined somewhat, giving way to a sense of hopelessness.

You thought it would be fine, you believe that every time (…) but you know, when you've been around for a long time, you know (…), of course it's not so damn positive when (the partner) says; damn, now you've got something again, the beginning of something, that's not so damn positive, you turn all cold, think not again (interview 3).

4.2.2. The Loss of Autonomy

To maintain autonomy in the context of pressure injuries is described in the stories as difficult. The two aggravating factors highlighted in the narratives that are considered to be the greatest threats to autonomy are restrictions and participation. The restrictions affect autonomy by limiting the respondents' ability to handle everyday situations in the way they are used to. But it also consists of the physical wound that oozes, smells, or requires frequent dressing changes.

I got help because, since I had the pressure wound there, I didn't dare to skip to the toilet by myself. I had to ask someone to help me with my legs (interview 1).

Participation, on the other hand, or rather lack of participation stems in the narratives from a care where the information about what is happening and what is going to happen is perceived as insufficient. The stories describe uncertainty about how the care process is progressing, how long they plan to try to heal the wound conservatively, whether or not the promised referrals have been sent for assessment at a specialist clinic and how long the waiting times are for access to this specialist care. But it is also about a care that is perceived as not being able to invite or utilise the respondents' own experience and resources. Where the only task they feel they are assigned is to lie still in bed and heal.

So the problem is, you know, when they think they can fix it and then six months go by and they send a referral and then it takes six months before the hospital reacts, you know, then it was a year straight away. The patient lies there, do you realise how bad I felt then, for a year, I just lay there without being told anything (interview 5).

That a preserved experience of being an autonomous person is of particular importance among the informants is understood from their accounts of the original accident. The accident that led to a life in a wheelchair and a lifelong risk of pressure injuries. What the stories describe is that independence has not always been a natural part of the informants' lives, but rather something that they have had to fight hard to achieve. When the pressure injury occurs, however, everything is turned upside down again and the respondents are forced to accept that they are once again dependent on the help from others.

4.3. Surgery—A Fast Track Back to Life

Being given access to surgery is described as a turning point in the stories. This is where the despair turns away and is replaced by hope. And although not all surgeries are successful, and although the stories tell of complications and re‐operations, respondents maintain their trust in the highly specialised care and their view of surgery as the fastest track back to life.

Before you find out that there is going to be an operation, well, you are on a quagmire, you don't feel well, you don't know what is going to happen. Once you get in touch with the specialised care, you immediately feel calmer, you know that you will soon get a receipt, the wound will heal, because it can heal quickly as long as you have access to surgery (interview 5).

The stories describe how thoughts of the life that awaits, after the wound has healed, is what motivates and helps the informants through the tough time they still consider the operation to be.

You never look forward to an operation, but compared to having a pressure ulcer, of course you look forward to it (interview 2).

Informants with previous knowledge and experience of surgery and postoperative care for pressure injuries describe how these previous experiences both deterred and motivated them to seek care. The deterrent effect was that they knew what going through surgery meant in terms of further restrictions on their lives. The motivational effect, on the other hand, was that if they just endured the aftermath of the surgery, they knew that the time with the wound would be over.

…and thank God, or whatever people say, I had pressure sores in 2015 so I kind of knew how awful it could be, or would be (laughter), and I'm extremely grateful for having that pressure sore actually, because if this had been my first big pressure ulcer, I wonder if I would have coped, in that case I probably wouldn't have had the mindset needed (interview 2).

4.3.1. A Patient or a Person

The stories show how difficult the informants find it to remain a multifaceted person—a human being—when they are hospitalised. How the transformation to becoming their diagnosis was both immediate and imperceptible.

You become less of a person when you are hospitalised, especially when you have been hospitalised as much as I have over the years (interview 2).

The stories further reveal a disappointment in not being seen from a holistic perspective. The spinal cord injury, which for the informants is both personally and physiologically related to the pressure injury, is not perceived as relevant from the perspective of the healthcare system. Instead, a lack of understanding of this connection by the profession is described, which is further interpreted as a lack of knowledge of what a spinal cord injury actually means.

They don't understand how my body works. They think I'm an ordinary person, but I'm not because I don't feel anything, I don't know what's going on (interview 5).

Several examples are given of situations where informants feel that they are not listened to and, as a result, do not feel fully understood. These include attempts to communicate symptoms that deviate from the norm, but also attempts to communicate personal experiences in terms of wound healing. It is also about aspects that, from their perspective, are necessary for normal life to function, such as getting help with exercise to maintain necessary strength.

They don't have the person, they have the disease as their priority. That's how it is. I feel like that all the time. Nobody, nobody cares about how I feel. How do you feel when you have this wound? No, nobody asks me that (interview 5).

The experiences of not being seen, heard, or understood led to stories where informants positioned themselves as passive recipients of care rather than active co‐creators.

I didn't actually make that decision, I just got that information (Interview 1).

4.3.2. Good Care Conveys Hope

What distinguished stories of good care from stories of bad care was mainly the feeling of being heard, seen, and treated with respect: how one was addressed. Respondents' stories of good care are descriptions of situations where they were seen as people and not just as patients.

There were a lot of people who said; ‘if you get bored you have the alarm button there, call me and I can come in and chat for a while’, and it's worth everything, and there were a couple of guys playing in a band and we sat and talked about music and stuff, and it made everything much better (interview 2).

The stories also describe the profession's ability to convey hope as an important aspect of good care. After living for a long time with negative or worrying news about the wound's prognosis, meeting a specialist who sees the possibilities and potential of reconstructive surgery is described as a great relief.

Then I was lucky enough to get an appointment (for assessment of the ulcer) and see the surgeon who thought my wound had the potential to be operated on (interview 1).

An encouraging attitude from the staff was seen as so important that it was described in the stories as influencing the entire care period.

It helps when they [the staff] say you will get stronger and you will get better, and I think this actually helped me get stronger (interview 4).

Something that was mentioned in the stories as important for the feeling of trust was that the staff had previous experience: that they had been involved with patients with pressure injuries before. The stories about recurrent wounds also emphasised the importance of accessibility.

It felt safe that you could always call, even if you just wanted to ask for advice, and we [the patient and his spouse] were never turned down or anything like that, instead it's always been, ‘it's better you come here so we can have a look’. I have to say—and I have said that to them several times too—that is amazing (interview 3).

4.3.3. If My Participation Is Desirable, I Must Be Informed

The stories describe two different types of information related to surgery. One type of information relates to the actual framework of the treatment process and this was perceived as clear and concise.

I was very clearly informed about everything about these days (…) exactly how long I would be lying in the clinitron bed (…) how long I would be at bed rest when I got back home, and I was given an exact sitting schedule (…) so the routines were clear to me all along (interview 1).

However, this type of information tended to diminish as respondents suffered recurrent injuries, which was interpreted as the profession assuming that the process itself was already familiar to them.

There was no information, no, there was no information at all, he just said we can operate on this (interview 5).

The second type of information related to situations that could occur during the treatment process itself and was therefore unique to each individual respondent. The personal information was described in the narratives as much more sparse, leading respondents to feel that they lacked the necessary knowledge to participate in decision‐making processes and instead felt they had to rely on the professional judgement of the staff.

Well, I didn't know a damn thing about what needed to be done, so they had to take care of it (interview 2).

The respondent continued the story by describing a situation in which the lack of information made it impossible to participate in decision‐making and the consequences of this. What was involved in this case was a urinary catheter that had been inserted during surgery and then left in place for so long that the urethra was damaged.

They sometimes asked if I wanted it removed, and stuff like that, and I said that it's fine to leave it, or okay, or something like that (…) the only thing that went through my head was; how the hell am I going to pee then, there was like no other options (…) they didn't warn me at all about what could happen if it was left in, for too long, so all of a sudden the urethra had ruptured and then I had to insert a suprapubic (…) that was unforgivable behaviour, because it really made things difficult for me (interview 2).

The lack of personalised information was also shown in the narratives to have an impact on aftercare, with respondents making their own decisions about individualising the care programme when they felt it was necessary.

I guess I found out, on my own, that there can't be any danger in sitting a little longer, especially not after a few weeks (…) depending on where the wound is located (interview 3).

5. Discussion

The aim of this study was to explore the lived experience of people with ischial, sacral and trochanteric pressure injuries and their way through reconstructive surgery treatment and care. Using narrative methodology, stories were collected from five informants, all of whom had personal experiences of undergoing reconstructive flap surgery for pressure injuries. The stories were then analysed structurally and thematically, leading to three main themes: The wound—that changes life. Time—it's my life passing by and Surgery—a fast track back to life.

What distinguishes this study from other studies examining patient stories about pressure injuries is its focus on the role of reconstructive surgery. Previous studies aimed at exploring the experience of living with pressure injuries have touched on the area. Gourlan et al. quoted one respondent who had undergone surgery and who said that this was not a good moment to experience. However, the main aim of this study was to explore perceptions and beliefs about pressure injuries in people with SCI in general and not specifically the experience of surgery [22]. In a study by Soegaard et al. respondents seek access to surgery to avoid life‐threatening infections and prolonged healing processes. However, they find that access to this type of treatment is hindered by both incompetence and the reluctance of health professionals to refer patients to a more specialised level of care [36].

In this study, the encounter with specialised care was a clear turning point in the stories. What distinguished this encounter, from other healthcare contacts that the informants storied about, was the ability to convey hope. To convey a belief that the time with the wound will end and that life, as it was before the pressure injury appeared, will return. This turning point thus highlights the importance of the information aspect of care. Because it is not the operation itself that gives respondents hope, although it can of course be a contributing factor. What gives them hope, according to the stories, is instead the encounter with a healthcare system that offers possible and concrete solutions. A care where the general information is perceived as very factual and where there is a clear timeframe. This view of hope as something that is influenced by the degree to which information are offered is consistent with Snyder's assumption that the cognitive component that is most important for the experience of hope is the ability to set goals [37]. Goals, according to Snyder, can be either specific or vague with the consequence that vague goals are less likely to lead to hopeful thinking. This finding on the importance of information to create motivation and belief in patients is something that Ledger et al. also conclude from the aim of achieving adherence to preventive interventions [18].

However, the results show similar difficulties for both specialised care and primary care in maintaining good information and communication over a longer period of care. One explanation for this may be the lack of person‐centredness that the stories reveal permeate the entire care period. According to the Fundamentals of Care formulated by Kitson and others [38], the possibility of effective care is mainly about creating good individual‐based relationships between professionals and patients. An individualised care is also something that the clinical guidelines for preventing and treating pressure injuries advocate [9]. Why person‐centredness is so difficult to achieve in the case of pressure injuries is difficult to understand, as it has been shown to work well in other areas. Soegaard et al. provide a possible explanation, which is that patients with pressure injuries are bounced around between several different therapists where they meet many different people whose skills and knowledge are highly variable [36]. The lack of personalised and situational information after surgery led to physical injuries that could have been avoided, as in one example where the urethra burst. It also led to informants themselves feeling the need to make personalised adjustments to post‐operative restrictions to comply with them in daily life.

Another finding linked to the lack of person‐centredness in surgical care is the informants' description of how they were reduced to the diagnosis they had come there to treat. This was particularly difficult when it came to the spinal cord injury, as it had a strong connection to the pressure injury from both a physical and a mental perspective for the informants. Pressure injuries are seen by people with SCI mainly as a ‘secondary health condition’ [39]. Returning to hospital can therefore be particularly difficult for them as it may evoke negative feelings related to the trauma they spent a long time in hospital recovering from [22]. Taken together, these experiences of not being seen and heard as a whole person may underlie the largely passive role respondents take in participating and making decisions about their own care. This since personalised knowledge exchange is an important factor for active participation in one's own care, which further affects experiences of feeling safe or ignored [40].

Time is an essential aspect of this study. The most important function attributed to surgery is that it allows to shorten the time it takes for the pressure injury to heal. This finding differs from previous studies in that surgery is attributed a temporal endpoint that conservative treatment is perceived to be lacking. Time is also what governs life, since the strictly timed restrictions on depressurisation play a crucial role in its content. Informants describe the experience of having a pressure injury as living a non‐life, as just existing. The meaning of this non‐life is described in terms of not belonging, not fulfilling a function, not being able to participate, which creates an involuntary isolation. Ljung et al. measured quality of life over time using the EQ‐5D instrument and saw a more than twofold improvement in quality of life 3 years after surgery compared to before [41]. Roussou et al. stated that based on the dimensions used to measure quality of life, the prevalence of pressure injuries primarily affects the emotional dimension [42]. Surgical treatment is therefore also described as life‐saving in the sense that it contributes to a transition from mere existence to a full life. This life‐saving perspective is also described by Pilusa et al. who conclude that surgery can be perceived as a necessity from a life‐saving perspective by people who live with the fear that they will die from their pressure injury [39].

The results suggest that people with recurrent wounds who return to surgery experience a reduction in care. This is based on what the stories reveal about how information and education tend to be reduced both at the preoperative consultation and at admission to the ward. However, the stories show that recurring wounds actually represent an increased need for care, based on how this affects the informants' confidence in both themselves and in their own body's, but also from how the informants tend to put blame upon themselves. McCranie et al. recommend that risk factors should be investigated even more carefully when it comes to surgery for recurrent wounds, to better understand the reason for the recurrence. But also to be able to choose the right surgical method and optimise postoperative care [43]. One way to do this is suggested by Fogelberg et al. to examine habits, partly to make them visible to the individual, but also to be able to achieve a change when this is considered necessary [44].

5.1. Strengths and Limitations of the Work

The stories were both rich in content and in depth, which is a prerequisite for a meaningful result. The fact that the first author had previous experience of both the interview process and the analytical methods is a strength here. The two different methods of analysis complement each other, the structural analysis was a valuable tool for sorting the material and highlighting situations for the thematic analysis to further explore and synthesise. Together they contributed to interpretations that stayed close to the respondents' transcribed stories. Nevertheless, a story is not a direct representation of reality, so the results of this study cannot and should not claim to convey the truth. Instead, they can provide a deeper knowledge into how it can be experienced to live with a pressure injury in need of reconstructive surgery.

There are currently no clear guidelines regarding sample size when using narrative methodology. However, as Riessman [26] puts it, the method is not suitable for studies involving large numbers of nameless and faceless people, as it is both slow and conscientious. Studies with one, three or five informants are exemplified by some experts in the field. The aim is to collect and present a rich material, not to be able to generalise the results [28]. However, limitations regarding the sample include the fact that all respondents underwent surgical treatment at the same clinic, as well as an uneven gender distribution, which made interpretations related to gender impossible.

Stories are told in a context and it can be seen as a limitation that the interviewer, in her clinical work, represents parts of the care that the study intended to investigate. It can also be seen as a strength as the environment described by the respondents was also familiar to the interviewer, which facilitated the conversation. However, there were no healthcare contacts between the interviewer and the respondents regarding the care event that prompted inclusion in the study.

6. Conclusion

The aim of this study was to explore the lived experience of patients with pressure injury and their way through reconstructive surgery.

Access to surgery is described by people living with ischial, sacral and trochanteric pressure injuries as an important factor, mainly because it can help reduce the time it takes for the wound to heal. However, the care provided in the context of surgery needs to be individualised, so that patients feel seen, heard and involved, as the opposite risks leading to feelings of alienation and hopelessness. Setting specific, time‐bound goals around treatment interventions is one way for healthcare providers to avoid the feeling of hopelessness that slow‐healing wounds can lead to.

Ethics Statement

The study was preceded by the Swedish Ethical Review Authority (2021–03613).

Consent

Written and oral information about study participation was provided to the respondents and written informed consent was obtained before the interviews took place.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1.

Data Availability Statement

Authors agree to make data and materials supporting the results or analyses presented in their paper available upon reasonable request.