Keywords

1 Introduction

Lumbar spinal stenosis is one of the most common reasons for lumbar surgery in older people over the age of 65 (Kovacs et al. 2011; Deer et al. 2019). Ravindra et al. found that the incidence of degenerative lumbar disease worldwide is estimated at 266 million (3.63%) individuals per year, with the highest incidences found in Europe (5.7%) (Ravindra et al. 2018). The diagnosis is one of the most common among spinal disorders and increases with age, with little difference in prevalence between sexes (Deer et al. 2019).

Lumbar spinal stenosis defines a narrowing of the spinal canal, leading to compression of the nerves and vessels in the spinal cord (Hermansen et al. 2017). It is caused by degenerative changes and causes clinical symptoms such as pain in the lower back, numbness, pain in the feet, especially when walking, and neurogenic claudication. The condition can also result in a reduced level of functioning due to pain. Little or moderate pain often leads to conservative treatment, and the assessment of the potential benefit of the operation should exceed any risk from surgical treatment (Nerland et al. 2015).

Nurses play an important role in providing care before, during, and after surgery. Knowledge about patients’ lived experiences is important so that nurses can provide individually adapted information in the course of disease (Hébert et al. 2020). Nurses often meet patients at the outpatient clinic prior to operation. Preoperative instructions may affect patients` outcome of treatment and benefit own health (Carmona and Pleasant 2018). In an orthopaedic ward, nurses play an important role in providing nursing and treatment. The nurse is the team coordinator and will collaborate interdisciplinary and transdisciplinary with team members who will cover all the patients’ needs, including all health services. It is crucial that patients receive sufficient information before surgery to maintain realistic expectations of treatment outcome and to strengthen their ability to master further rehabilitation after surgery (van der Horst et al. 2019). It is essential to improve patients` health skills to promote and provide good health and well-being (Sørensen et al. 2012, 2021; Gibney et al. 2020) and decent work for all which is central to economic and social progress and societal well-being (Di Ruggiero et al. 2015).

2 Background

Patients with symptoms of lumbar spinal stenosis experience back pain and articulating pain. In some cases, it can be difficult to make a specific diagnosis for this group of patients. The diagnosis is often based on the clinical symptoms with the corresponding findings of radiological investigations (Jensen et al. 2020). Many patients with lumbar spinal stenosis are offered surgical treatment. Posterior decompression is a collective term for multiple posterior decompression techniques used to relieve nerve compression in the spinal canal. These different techniques are used to create better conditions for the nerve structures of the spinal cord. This is created by removing deposits and surrounding tissues (Hermansen et al. 2017).

A survey conducted in the United States showed that surgical treatment of lumbar spinal stenosis led to a significant improvement compared with conservative treatment. Improvements in terms of pain and function were reported, and patients were more satisfied with their progression after surgery (Weinstein et al. 2010). Surgical treatment of lumbar spinal stenosis has also been reported to be superior to conservative treatment in terms of physical improvement. Patients with clinical symptoms of neurogenic claudication before treatment report remarkable improvement after treatment (Kovacs et al. 2011). Corresponding studies also show positive results considering both lower back pain and foot pain (Weinstein et al. 2010; Ikuta et al. 2016).

Several qualitative studies have explored patient experiences without surgical treatment for lumbar spinal stenosis (Weinstein et al. 2010; Ikuta et al. 2016). The results showed that the effects of medical care and exercise treatment were generally temporary (Bove et al. 2018). A recent longitudinal study showed that patients who exercised regularly before surgery had significantly less pain in the lower extremities after surgical treatment (Hébert et al. 2020).

A lack of health literacy is found among certain groups in society. Older people, people with low education and low social status have noticeably poorer health literacy before undergoing orthopaedic surgery (Sørensen et al. 2015). Lower health literacy is a significant factor associated with increased use of healthcare services and costs (Haun et al. 2015). Realistic information about surgery treatment and postsurgical expectations can lead to better mental preparation before surgery and improved sense of control (Conradsen et al. 2016).

Recent data from the Norwegian population show that 20% had difficulty considering what kind of health service they need. The patients were unsure if the health service would cover their needs and felt uncertainty in deciding which healthcare services they should choose (IS-2959 2021). Qualitative research on patient experiences following lumbar spinal stenosis and surgical treatment is scarce.

Our objective in this study was to achieve a deeper understanding of the patient’s experiences in the clinical pathway. The aim was to explore patients’ lived experiences with lumbar spinal stenosis and surgical treatment. The research question was: How do the patients experience lumbar spinal stenosis and surgery in the clinical pathway? Knowledge about this is important to create health-literate patients and organizations.

3 Design and Methods

A qualitative research design with a phenomenological approach was chosen as the most appropriate method to gain knowledge of the lived experiences of the patients (Polit and Beck 2017). In-depth interviews were used to collect data. The four-step method established by Amadeo Giorgi was applied (Polit and Beck 2017). The study adhered to the COREQ 32-item checklist for qualitative studies.

3.1 Participants

Purposive sampling was conducted (Polit and Beck 2017). Patients who had undergone surgery for lumbar spinal stenosis were selected. They had not benefitted from conservative treatment and had undergone a posterior decompression of the affected level of the spine. Exclusion criteria were patients with cognitive impairment and other criteria that could have an impact on outcome, reoperations, fixations, and disc hernia surgery.

Eleven participants were drawn consecutively from the Health Agency’s register between 16 May 2017 and 31 October 2017. The participants had undergone surgery for the first time, comprising only decompression. One patient withdrew from the study due to inconvenience and another was excluded due to exclusion criteria. After nine interviews, the information was repetitive and redundant, and we considered the data saturated (Polit and Beck 2017). Four women and five men aged 61–79 years participated in the study (Table 8.1).

Table 8.1 Participants’ characteristics
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3.2 Data Collection

Participants were recruited by phone by a contact person who was not involved in the study. Patients were recruited 3 months after they had undergone decompression surgery. Individual in-depth interviews were used for data collection. The first author conducted the interviews. At the start of each interview, written informed consent was obtained. The interviews were audio-recorded and took place in the participant’s home or in the hospital 3–9 months after surgery. The interviews lasted between 60 and 90 min. Interviews were transcribed immediately after each interview. Data were collected until each theme was abundant and copious and was intended to be repetitive and redundant (Richards and Morse 2012). An open-ended interview guide was developed (Polit and Beck 2017) (Table 8.2).

Table 8.2 Interview guide
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3.3 Ethical Considerations

The study was carried out according to the principles of the Declaration of Helsinki (2013) and was approved by the Regional Committee for Medical and Health Research Ethics (2017/2372 REK: Central Norway) participants were told that participation was voluntary and that their anonymity would be protected. They were also informed that they could withdraw from the study at any time. Informed consent to participate and consent to publish was obtained in writing prior to the start of the study. The collected data were stored according to the Regional Committee for Medical and Health Research Ethics requirement for storage of sensitive research material. Patients are vulnerable to surgical procedures, and it is important to prepare them for any emotional reactions (Polit and Beck 2017).

3.4 Data Analysis

The analysis started immediately after the first interview and followed Amadeo Giorgi’s four-step method (Giorgi et al. 1985). The first step was to read all the interviews to get a sense of the entire survey. The first author then identified and coded the units of meaning related to the experiences before and after treatment. The second step was to transform the raw data into individual phenomenological descriptions (Giorgi 2009). Individual descriptions were organized under related themes with the same meaning content (Giorgi et al. 1985). The third step was to search for the underlying meaning in the meaningful units through a reflective and analytical process (Giorgi 2009). Finally, we summed up the significance of each experience, summarized the hierarchically arranged knowledge, and formed stories that could be retold to describe the essence of the phenomenon studied (Giorgi et al. 1985). Analyses were conducted in collaboration with the co-authors.

3.4.1 Rigour

The researchers described the methodological decision explicitly and carefully to the patients to enhance trustworthiness. The first author, in collaboration with the second author, performed the analysis. The analysis was thoroughly discussed with co-authors who did not have the same proximity to the research field. The various stages of the analysis were carefully documented to achieve transparency in the research process (Polit and Beck 2017). To validate this process, three of the authors read the transcripts, and the findings were discussed with all authors.

4 Findings

Four women and five men described their experiences with lumbar spinal stenosis and surgical treatment in the clinical pathway. Four themes were identified: (a) like a red-hot iron rod towards the hip, (b) stopping meaningful activities, (c) rapid recovery from pain, and (d) having a fresh start.

4.1 Like a Red-Hot Iron Rod

Patients said that they had been in pain for many years. The pain was strong and constant and was described as “a glowing iron rod towards the hip” (Informant 1). Patients had experienced severe pain in both legs for 2–3 years before accepting surgical treatment. “The pain went especially over the hips, down the thighs when you touched them, but there was pain in the legs too” (Informant 6). One patient explained: “I had the feeling of something tight around the hip and most of the time I could not go very far in fear that my foot would fail” (Informant 8). Mostly, they had experienced pain during activity. The pain was located in the lower back and in one or both of the lower extremities.

Those who had experienced back pain felt a soothing effect when they sat or bent forward. Several of the respondents reported that they had experienced palsy in one or both lower limbs. They described it with words such as “tingling, pricking, and numbness”. One patient described the experience as: “I felt like a knife stabbing my bottom, thighs, and sometimes I felt it somewhat all the way down to my ankles” (Informant 3). Another described the experience as: “I felt as the foot had withered away; it was living its own life” (Informant 7). Most experienced palsy in the bottom and thighs, some all the way down to their toes. This condition led to experiences such as instability: the foot would then give way and increased the tendency to falls.

4.2 Refraining from Meaningful Activities

The patients shared their experiences about personal consequences, such as reduced daily activities, less social participation, and the feeling of isolation. They described how living with constant pain had led to a reduced functional capacity and limited their daily life. One of the symptoms communicated was that the foot started to shake. A sense of stiffness and pain was described when starting any activity. This led to walking and taking small steps in fear that the foot would give way. Several had experienced occasional failure of one of the lower extremities. The patients described the functional limitations they had to face in daily life. Pain limited their ability to carry out daily activities; “it was not easy at any time, I asked my wife to help with things I could normally do by myself” (Informant 5). The patients felt compromised due to their dependence on the family to overcome daily tasks and activities. They felt a loss of identity and struggled with their self-confidence.

The patients said that they used crutches and were even supported by available fixtures at home while performing daily activities. They felt isolated; “for almost a year I couldn’t do anything” (Informant 4). They were prevented from participating in recreational and family activities. One of the patients said that he could not drive his car. It was also difficult to walk. “I could only walk short distances before the pain started” (Informant 1). The patients described a walking distance of 200–300 meters, while for some it was even more limited.

The patients expressed that life before the operation was bad. They said that days were shortened due to poor sleep quality. Poor sleep quality often led to their early withdrawal from social activities. Some of the patients felt depressed due to the extensive limitations they experienced in their daily lives. Patients expressed how important their own motivation and willpower had been to overcome daily challenges. They experienced a loss of freedom. “I was mostly at home” (Informant 4). Patients explained that the limitations of daily life were the reason for choosing surgical treatment; “I felt useless and helpless” (Informant 3).

The patients said that prior to the operation, they had received useful information about the clinical pathway from health personnel during a day visit to the hospital. They had received information from the nurse, the orthopaedic, the physiotherapist, and the anaesthetic doctor. Some of the patients felt that they received a bit too much information in just 1 day.

4.3 Rapid Recovery from Pain

After surgery, the patients experienced rapid recovery from pain. They described an immediate change after treatment and some even experienced no pain even before leaving the hospital. “As soon as I woke up and was able to stand on my feet, I realized that I could not feel any pain. I cried, it felt fantastic, it was like being re-born” (Informant 4). The patients’ narratives about surgical treatment were accompanied by smiles and gratitude. Some patients described gradual improvement. One of them declared that after 2 months he felt “free of pain” (Informant 1). However, another said that he could still feel pain. Most patients who had experienced paralysis and weakness of the lower extremities before the operation noticed a feeling of improvement immediately after surgical treatment. This was always the first improvement experienced and mentioned after surgery. Shortly after surgery, some respondents still experienced palsy in their toes, albeit to a much lesser extent.

After surgery, most patients described the situation as having improved. Among patients who had experienced an improvement in function, most could perform daily tasks and gradually resume leisure activities. A patient reported that after a year of isolation, he could go fishing daily, he shone during the conversation, and showed great pleasure in his new life situation. He described pain after surgery as “it is completely gone” (Informant 4). Another patient spoke about improvement as “after the operation I was free of pain,” and after returning home, she reported “I am gardening and doing exactly what I want” (Informant 5). However, one of the patients reported that walking steps was still a challenge, because the muscles were still weakened due to prolonged immobility. Some experiences after surgery were also described as a less positive outcome. The experiences were described by a small improvement and with some uncertainty about the final results of treatment. “It’s mostly like only when I sat down that I couldn’t feel the stabbing pain” (Informant 10). During the conversation, the same patient revealed that there may have been other conditions that could influence the persistent pain in the legs after surgery, “yes, there were tight veins” (Informant 10). Pain after surgery was also described by “back pain and pain in the hips still feel the same as before surgery” (Informant 6).

4.4 A Fresh Start

After surgery, patients experienced rapid recovery, and improvement was spoken of in terms of “like getting a fresh start” (Informant 8). This quote illustrates how many patients experienced their situation after treatment. They experienced life as good compared to what it had been in recent years; “I can now walk several miles” (Informant 1). The patients said that although they had high expectations for the outcome of the surgery, they had not realized that the outcome would be so successful; “the expectations are absolutely fulfilled” (Informant 5). Patients spoke of the remarkable and strong contrast as they described their quality of life before and after surgical treatment. The new possibility to participate in family life and work: “now I work 100%, there is nothing to stop me” (Informant 3).

The patients said that they would have preferred to have received treatment at an earlier stage of the disease. Some patients said they had been depressed due to pain and loss of function “I felt depressed before the operation you might say” (Informant 3), and they described the experience of feeling isolated from society and family life; “I mostly stayed inside the house” (Informant 4); “had it not been for the painkillers I would not have been able to get out of bed” (Informant 4). Some patients had been offered surgery earlier during the course of the disease and regretted that they had declined the offer; “as I said, I made the mistake of postponing the operation” (Informant 1). The patients revealed that if they had anticipated the consequences of postponing the operation, they would have chosen to receive surgery treatment at an earlier stage.

The patients expressed that they had experienced a lack of information about the possible positive outcome of surgery earlier in the pathway. They conveyed that an earlier operation in the clinical pathway might have prevented long-lasting pain and suffering related to the disease.

5 Discussion

Phenomenological analysis provided information on the patients’ lived experiences with lumbar spinal stenosis and surgical treatment in the clinical pathway. The analysis revealed that the patients had experienced strong and constant pain before surgery. The severe pain had prevented them from participating in family and social life. They expressed a feeling of loss of identity. After treatment, patients experienced rapid relief from pain and regained family, social, and working life. The patients described the experience of a fresh start. The study provides valuable knowledge that can contribute to reaching sustainability goals regarding health and well-being and productive employment.

In the present study, the patients revealed that they had experienced strong and constant pain that had marked their lives before surgery. This is in accordance with previous research. A qualitative study by Van der Horst et al. found that some patients reported preoperative pain as unbearable and had not been able to work for a long period. Patients with lumbar spinal stenosis experience prolonged pain in the back and numbness and pain in the lower extremities (van der Horst et al. 2019). Our study highlights the consequences for patients such as loss of identity and the inability to participate in meaningful activities. The pain had prevented them from maintaining their family and social life. They experienced a loss of identity and were unable to preserve their family role. The experience of being dependent on relatives in daily life could threaten their independence and integrity.

The present study shows that patients with lumbar spinal stenosis experienced a reduced functional level and a significant loss of functional capacity. Earlier research supports this finding. Pahl et al. (2006) revealed that lumbar spine disorders in general have a severe negative impact on patient physical health and that lumbar spinal stenosis leads to a reduced functional level with consequences such as absence from work and social participation (van der Horst et al. 2019). Our study shows that the loss of functional capacity of the patient had significant consequences for simple daily tasks and led to isolation and depression.

The study showed that some of the patients experienced depression due to their difficult situations and felt compromised. This is consistent with earlier research (Nerland et al. 2015). Earlier studies have found that people living with constant pain and a reduced level of function are significantly more prone to struggle with anxiety and depression. Holmes et al. reported that depression in patients with chronic pain is associated with decreased function, poorer treatment outcome, and major healthcare costs. Our study supports this finding. The experiences of the patients of depression and isolation had brought consequences such as poor self-image and loss of freedom. Successful treatment of depression will reduce pain and improve function and quality of life for patients with chronic pain (Holmes et al. 2013).

After surgery, patients experienced an improvement in their quality of life. They talked about regaining their independence and being able to participate in family and social life again. Both the level of function and the pain are factors that influence the quality of life of patients (Katz 2002; Rustøen 2001). Previous research supports the results of this study by confirming the experience of patients of improved functions after treatment (Nerland et al. 2015; Hermansen et al. 2017). In the present study, the patients expressed rapid recovery of pain and functional level after surgery. They described how their progress created new optimism.

Earlier research shows that surgical treatment for patients with lumbar spinal stenosis is not always associated with a significantly better clinical outcome (van der Horst et al. 2019). A study by Hebert et al. highlights several potential predictors that have an impact on the outcome. They found that preoperative therapies and regular exercise were an important predictor of clinical outcomes (Hébert et al. 2020). Conradsen et al. highlight the importance of supporting patients with sufficient information before surgery to promote patients’ ability to master their treatment decisions. Today, patients have access to a lot of information about their disease. Despite the amount of information, the interpretation of the information greatly depends on the reader’s ability to fully understand its content and act on it. Health literacy is an important aspect of empowerment, which enables patients to make the best choices for their health (Conradsen et al. 2016). Health literacy consists of finding, understanding, accessing, applying, appraising, and using information about health to ensure one’s own health (Sørensen et al. 2012, 2021). Recent data from the Norwegian population show that 20% had difficulty considering what kind of health service they need if the health service will cover their needs and to decide which healthcare services they should choose (IS-2959 2021).

Some patients said that they had experienced major consequences of the disease before treatment. Pain is associated with high costs for the healthcare system and society. Surgery treatment should be considered as an option earlier in the pathway when considering patients’ treatment offers for this disease (Katz 2002; Holmes et al. 2013). The current study highlights the importance of patients having the necessary knowledge in the course of the disease to enable them to make knowledge-based decisions when considering treatment options for their disease. Navigating complex healthcare systems might be a major challenge when choosing different treatment options. Healthcare providers should be trained in a person-centred approach to meet individuals’ needs. Health literacy sensitivity should be a quality criteria for health management and health professionals (Kickbush et al. 2013). This requires a focus in professional education and health personnel who are trained to communicate more effectively to meet the needs of patients with limited health literacy (Sørensen et al. 2012).

Our study revealed that most patients had experienced relief from pain and an increase in function after surgery. They expressed the importance of regaining their family role and being part of society. There was also a desire to receive surgical treatment earlier in the course of the disease. It is important that this knowledge be distributed to other patients so that they have the opportunity to make informed decisions before receiving treatment. Health personnel, together with their health trust, should undertake the responsibility to provide this knowledge. Social support and information from healthcare providers with good communication skills may lead patients to receive treatment for their disorders earlier in the disease (Bove et al. 2018). More qualitative research is needed to obtain wider knowledge about patients’ experiences of various types of back surgery.

5.1 Strength and Limitations

A limited number of patients participated in the study; however, rich and detailed data were obtained. The results are likely to be transferable to other patients with a similar diagnosis, surgical treatment, and healthcare options (Polit and Beck 2017). Participants were recruited by staff not related to the study. Two of the interviews were conducted in the hospital, but the setting did not influence the willingness to share experiences. The verbatim transcription of the collected data was done by the first author immediately after each interview. The transcription was performed with great accuracy. The researcher’s decisions are carefully documented to achieve transparency in the research process (Polit and Beck 2017). Two of the authors had professional positions close to the topic being studied. It was, therefore important to discuss the analysis with the co-authors who did not have the same proximity to the research field (Polit and Beck 2017).

6 Conclusion

The study has provided new knowledge about the patient’s experiences of lumbar spinal stenosis and surgical treatment. The study showed that the patients had major pain ahead of surgery that stopped them from participating in meaningful activities. After surgery, patients experienced rapid recovery from pain and a feeling of a fresh start.

Advanced knowledge of patients` experiences is important when supervising patients to promote good health and well-being (SDG 3). This knowledge should be a theme in nursing and medical education as health personnel are responsible for supervising these patients in enhancing good health and well-being (SDG4).

It is important to strengthen a patient’s personal health literacy to support the patient’s decision-making process when considering treatment options and thus empower the patients in the clinical pathway. Health-literate patients are able to make sustainable and good choices for their own health (Gibney et al. 2020). Health literacy is equally important at an organizational level. Organizational health literacy is how organizations support individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.