The development of ureteric stents to relieve ureteric obstruction secondary to renal stones, renal masses or congenital abnormalities revolutionised urological interventions in the late 1960s (Finney, 1982). Ureteric stents, also referred to as ‘JJ’ stents or ‘double J’ stents, can have a negative impact on patient's lives, causing symptoms such as frequency, dysuria, nocturia, decreased libido, infection and depression (Joshi et al, 2002; Bosio et al, 2017). This phenomenon has been studied since 1967 when the long-term indwelling ureteral splint inserted cystoscopically was described by PD Zimskind (Zimskind et al, 1967). Shalaby et al (2013) noted that symptoms in patients with ureteral stents are inevitable and approximately 80% of patients with ureteral stents report adverse symptoms, which can vary in intensity. Numerous studies concurred with Shalaby et al (2013) on the benefit of alpha blockers and antimuscarinics for relief of ureteric stent-related symptoms (Dellis et al, 2014; Abdelaal et al, 2016; Hekal, 2016). The European Association of Urology urolithiasis guidelines advocate the use of alpha blockers in ureteric stent symptom management (Türk et al, 2019). Despite these recommendations patients with ureteric stents continue to experience quality of life issues while living with stents.
Aim of study
This study aimed to elicit understanding of the lived experience of having a ureteric stent and as a consequence improve health professionals' knowledge of this phenomenon. The key objective of the study was to illuminate from the emic perspective (ie from within the participant group) the challenges and supports experienced by participants who experienced ureteric stents.
Methods
The research design used was hermeneutic interpretive phenomenology, underpinned by Heidegger interpretive phenomenology. Phenomenology is a term encompassing both a philosophical ideology and approach to research methodology that focuses on the meaning and understanding in context of a phenomenon (Kafle, 2011). Heidegger (1962) reflected that human existence is being in the world and reveals itself in our consciousness. This reflects the philosophical concept that human beings are part of the world in which they exist, and as such are inseparable from the world in which they exist (Heidegger, 1962). Phenomenological research involves exploration, description and interpretation of the life world as the participants experience it (Miles et al, 2015). Phenomenologists believe that understanding and knowledge are rooted in everyday life and subjective meaning can be discovered through life experiences. Van Manen's framework gave structure to this human science research, hence his six steps were used to give guidance: turning to the phenomenon, investigating the phenomenon as we experience it, reflecting on the exposed themes, describing the phenomenon through writing and rewriting, maintaining a strong pedagogical relation and balancing the research context (van Manen, 1997).
Sample
This study used purposive sampling and participants were selected based on their experience of the phenomena. Participants were invited to participate via poster advertisement
Data collection
The research was undertaken between February and April 2017. The selection criteria included those over the age of 18 years who had a ureteric stent placed during treatment for renal or ureteric stones. Ten participants were recruited, two women and eight men, and the mean age of participants was 43 years. The time the stents had been in place ranged from 6 weeks to 5 months.
Interviews were scheduled at the convenience of the participants. An interview guide was used consisting of a choice of three core questions with a list of prompts that could assist the researcher in probing the lived experience of living with a ureteric stent (Table 1). No new data were noted after participant 7. However, a further three participants were enrolled to ensure data saturation was achieved.
| Core questions | Prompts |
|---|---|
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Data analysis
Thematic analysis was undertaken encompassing an holistic, line-by-line reading of transcripts, paying particular attention to the meaning embedded in the text (van Manen, 2017). Continuous reflection of the transcripts involved line-by-line analysis to extract the participants' experience and meaning of the phenomena from the text and not that of the researcher's experience (Box 1). The analysis and writing phase was guided by van Manen's framework (1997), which contains the four fundamental existential themes of human lived experience: lived space, lived time, lived body and lived human relations (Table 2).
| Existential theme | Description |
|---|---|
| Spatiality (lived space) | This reflects the space in which the participant moves or finds themselves at home. This comfortable space is altered if an individual goes into an uncomfortable space, which results in the person being uncomfortable |
| Corporeality (lived body) | This reflects the body and that the body does not always reflect to the outside world what is going on inside. It reflects being bodily in the world. This physical presence can reveal or conceal aspects about a person |
| Temporality (lived time) | This reflects subjective time versus actual time. Hopes and expectations give perspective to the life to come. However, this can be lost when there is desperation and despair |
| Relationality (lived human relations) | These are relationships that we maintain and encounter during this time frame, be they personal, professional or momentary. When a person relates to others he or she develops an impression of what that person is like, which can be affirmed or altered in interaction with them |
Using these four fundamental existential headings as guidance, five themes emerged during the analysis phase that reflected the participant's experience of living with ureteric stents. A reflective diary was maintained during the study, which enhanced and enlightened the analysis phase as it contained reflective notes made during the interview phase.
Ethical consideration
Ethical approval was granted by the ethics committee at University College Hospital Galway in December 2016.
Findings
Five themes were identified during data analysis and were representative of the stories as narrated by the participants during the interview process. They are: ‘disruption to activities of daily life’, ‘burden on my physical body’, ‘burden on my mind’, ‘influence of time’ and ‘influence of others’ (Figure 1).
These themes as depicted by the participants and identified during the data analysis phase are representative of the lived experience of participants having a ureteric stent.
Lived space (spatiality): disruption to activities of daily life
Disruption to daily life affects all aspects of the participant's daily routine and how they function within their lived world. Participants also indicated challenges to daily activities that are an integral part of their daily routines such as walking the dog, going to the gym, cycling, swimming, meeting friends for coffee, shopping and doing household duties—these were all curtailed while the ureteric stent was in place. Participants revealed varying degrees of modification and adaption to daily routines while they had the ureteric stent in place. Participant 3 initially had difficulty going out shopping due to urinary urgency. He found that unless he knew where the nearest toilets were, outings and trips would not be conceivable. He found that after 1 month he was able to adjust his lifestyle to the urinary urgency and started going out again:
‘When I was going shopping or going somewhere, I would need to know where the nearest toilet is … the urgency was big, could not hold it longer than a minute. If I feel I had to go to the toilet it had to be done now, not in 20 minutes. That was the biggest issue in the first month and then I got used to it and could work around it.’
Participant 7 loved walking his dogs with his wife, which he stated was vital since retirement to maintain a healthy lifestyle. However, he recalled that this daily activity was not possible with the ureteric stent:
‘I like to go for walks with my wife and dogs but I had to stop when the stent was in. The pain when I walked fast was intense, even when I slowed down I had pain. Having to pass water every half hour made me stop too.’
The disruption to family life had varying intensity among participants, from disruption to family breaks to inability to enjoy family time as depicted by participant 3, who reflected on his ‘nightmare holiday’:
‘The only thing that was affected was my holidays … I had to go on holidays in January and I regret going … On the flight the discomfort was very big because I was inside the plane and the flight was very long as well. It was a nightmare basically … discomfort from the prostate area was unreal, I couldn't sit on the seat properly … No-one told me it would be like this.’
This disruption to activities of daily living can be directly attributed to the effect the ureteric stent had on the participant's body. The physical ureteric stent symptoms as reflected on the lived body (corporeality) also had an effect on the participant's psychological wellbeing.
Lived body (corporality): burden on my physical body
The lived body (corporality) had two themes that were reflected by all participants, they were ‘burden on my physical body’, which includes an effect on sexuality, and ‘burden on my mind’.
The universal physical symptoms associated with ureteric stents were that of urgency, frequency and nocturia. Occasional incontinence episodes were voiced by some participants as a direct consequence of a sudden urge to pass urine. Bladder pain and pain passing urine due to the ureteric stent was described by participants with varying symptoms and severity expressed. Participant 1 recounted her experience of passing urine when she had the ureteric stent:
‘It was like an electric shock ripping through my body every time I passed water and I couldn't hold urine for a second. The leakage of urine caused huge embarrassment if I didn't make the toilet on time. You were always conscious that you had to be nearby the toilet.’
This ‘electric shock’ sensation was experienced every time she passed urine. These symptoms were frustrating for participants as they were associated with a vital daily activity that one cannot avoid, that of passing urine. When these symptoms began varied from immediately after the ureteric stent was inserted to 1 month before removal was scheduled. Some participants found that the stent settled 2 weeks after insertion; this was associated with the start of medication such as an antimuscarinic agent or alpha blockers. All participants found that they were counselled regarding the effect of antimuscarinics and alpha blockers, which resulted in them tolerating the medication. Participants who had begun taking these medications midway through stent placement questioned why they were not prescribed earlier as they relieved their symptoms.
‘Why these medications are not started earlier when symptoms are known and they know they can help is a bit frustrating, they gave great relief to my symptoms and I could be me again’.
Sexuality and the effect that ureteric stents had on sexual intercourse varied among all participants, some participants stated that the voiding symptoms were so severe that they did not attempt sexual intercourse due to fear of potential pain. Some participants had tried sexual intercourse and found it too painful to continue. However, they said that once the ureteric stent was removed, sexual function returned to normal. Participant 3 recollected the effect of medication on his sexuality and how counselling had assisted him to accept this side effect during this time:
‘My sex life was a bit affected. It was not comfortable enough, especially after ejaculation, there was discomfort coming in from the prostate area … It lasts for about an hour after, so I just gave up sex for the time being when I had the stent inserted … There was medicine prescribed, it worked well, the only down side was there was no ejaculation after sex.’
The physical symptoms of frequency, urgency, pain passing urine, and pain during sexual intercourse were directly affiliated with the ureteric stent. The effect these symptoms had on participants psychological wellbeing varied during their experience of living with the ureteric stent.
Lived body (corporality): burden on my mind
Participants reminisced that at the time the ureteric stent was inserted they did not realise the effect that the stent would have on them and that they did not recollect being counselled regarding this. Participant 10 recalled when the ureteric stent was inserted to relieve ureteric stone pain but he could not remember having been informed of the effects that the ureteric stent would have on him:
‘The effects of the stent may have been said; however, the pain of the stone had been [the] priority at that time … the stent would resolve that pain. I do not recall [being] told.’
Emotions such as ‘fear’, ‘shock’, ’degrading’ and ‘embarrassing’ were voiced by participants when they talked about their experience of living with a ureteric stent and the symptoms it caused.
‘It was so degrading, embarrassing … to me my dignity was gone. I felt lousy, terrible, they were all worried here because I was disintegrating, fading from the face of the earth. I was grinding down, it ground me down to a low ebb altogether.’
Participants stated that they did not receive written information regarding the ureteric stent advice and management of symptoms. They believed this would have been beneficial.
‘The pain caused shock and awe to me … It would be great if there was advice on how to manage the pain for patients. Giving patient information sheets would be of help … Being told it is normal helps. The fear of the unknown is worse than the fear of the known.’
All participants recalled the benefit of access to a specialist nurse and that, once they accessed this service, advice and support was available. However, participants noted that only one specialist nurse was available and there was no cover when she was off. Participant 4, who was a nurse, was shocked and humbled by the effect the stent had on him:
‘I was guilty for not supporting my partner more when she had a stent. Before I would have said that all will be grand and that the stone will be removed in another hospital with minimal effect on your life, I am now more empathetic, I understand where they are coming from.’
Time and the influences of time were observed particularly in relation to the stent symptoms. Time is an overarching theme that crosses through all themes, the time spent doing daily activities, time managing physical and psychological symptoms of the ureteric stent and time conversing with others.
Lived time (temporality): influence of time
The main theme for lived time (temporality) is the influence of time. Participants alluded to time when they discussed the impact that living with ureteric stents had on their lives. All participants voiced annoyance and frustration at time spent waiting for beds, time waiting for theatre space and time waiting for interventions.
‘After 12 days at home in severe pain I felt my only recourse was to come to A&E [accident and emergency department], which only added to the A&E crisis when all I needed was a day ward bed to remove my stent.’
Participant 8 had spent a week in another hospital waiting for a bed in the specialised centre and then waited another 3 days before surgical intervention was facilitated due to bed availability and theatre space. He theorised what he perceived as the solution to the issues that he encountered:
‘All they need is more beds, more staff and more theatre space and my stay in hospital would have been shorter, freeing up beds for other patients. Seems simple to me … The staff were excellent and gave me excellent care.’
Participants recalled that staff on the wards had no time to give psychological support and education to patients with ureteric stents due to staff shortages and the acuity of cases on the ward.
‘Nurses do not have time to give this support as their time is precious, looking after all the patients that they have to. Psychological support requires time.’
The duration of the stents varied from 6 weeks to 5 months depending on stone treatment and stent removal service, which were in turn dependent on bed availability in the relevant area. Participants said that over time their recollection of events faded, a concept that they thought would be inconceivable, such was the burden of the ureteric stent on their lives at that time.
‘To be honest I have forgotten it. At the time I thought it was so bad as I would never forget it and now I am finding it hard to recall it. When it was gone I had such relief that I have forgotten it all.’
This fading recollection resulted in participants stating that they would have a ureteric stent in the future if medically required. It reflects the concept that the impact of the ureteric stent fades over time and that participants rationalise the need for the ureteric stent when they reflect back on this time period. Interaction with others was paramount for the participants when they had the ureteric stent in place. Participants recalled that interaction and communication with fellow patients, health professionals and the general public influenced them during this period.
Lived human relations (relationality): influence of others
The main relationality theme that was reflected was the effect the ureteric stent had on relationships, that is, relationships with health professionals, family and friends.
All participants expressed the fundamental importance of communication skills and staff interaction with patients during treatment.
‘From cleaner to consultant a simple ‘hello’ means a lot. You know when someone says ‘hello, lovely to meet you’ or asks ‘what's your name?’, it makes a difference. All nurses have badges, which is great as you know their names.’
Participants said that they found staff polite, informative and helpful; however, written information would have been beneficial and would have prevented them from consulting other sources, which caused more confusion. Participant 7 recalled being counselled by the consultant about the effects of the ureteric stent:
‘He told me after the procedure, now you have a stent in and he said, some people can bear the stent for the 3 weeks and some people cannot bear the stent. I couldn't imagine what he was talking about when I got the first stent … By God, when I got in the second one I knew exactly what he was talking about.’
Participants recommended that more information regarding care and management of ureteric stent symptoms, particularly written, should be given; they noted that workload and lack of staff were factors preventing staff giving psychological support and educational advice at times. As van Manen (1997) stated these four existential elements can be differentiated but not separated, they form an intricate unity called our lived world.
Discussion
Urological nurses promote and advocate holistic nursing care. However, urological nurses must understand the impact that ureteric stents have on patients' lives and the effect these stents can produce in what is a relatively short period of time. Van Manen's four fundamental existential themes of human experience—that is, lived space, lived time, and lived body and lived human relations—can be used to guide urological nurses as they strive to care for patients with ureteric stents. Urological nurses can take the lead in advocating for the needs of patients with ureteric stents, ensuring that the impact of the ureteric stent is minimised.
Lived space (spatiality)
All participants expressed that there had been disruption to activities of daily living, which took various forms: disruption to family life, to work life and to social life. This correlated with work by Bosio et al (2013) who stated that 39% of patients surveyed voiced difficulty doing light activities, with 27% stating that they could not do heavy physical work and 45% stating that they had to reduce working hours. Disruption to family life was mentioned by all participants, even simple activities such as walking the dog, going for a walk or family shopping trips, were impossible with the ureteric stent in place. Urological nurses can educate patients regarding management of stent symptoms and how to limit the impact on activities of daily living such as family activity, work life and social life. This will enable patients with ureteric stents to continue to participate in activities of daily living or limit them as necessary to ensure comfort for the duration of the ureteric stent.
Lived body
The disruption to family, work and daily activities was all due to the physical symptoms inflicted on the body by the ureteric stent. Joshi et al (2001) defined stent symptoms as being a combination of various symptoms: storage symptoms (frequency, urgency, and nocturia), bladder pain, haematuria, voiding symptoms (poor flow, feeling of incomplete emptying) and incontinence. These symptoms singularly have an impact on participant's quality of life; however, the impact is intensified when more than one symptom is experienced. Urological nurses can counsel patients regarding potential ureteric stent symptoms and how to manage them conservatively through alteration to diet or use of pharmacological agents. Numerous quantitative studies recommend alpha blockers and antimuscarinic agents to reduce the voiding symptoms caused by ureteric stents (Lamb et al, 2011; Shalaby et al, 2013; Dellis et al, 2014; Abdelaal et al, 2016; Hekal, 2016). The European Association of Urology urolithiasis guidelines (Türk et al, 2019) advise that alpha blockers reduce morbidity associated with ureteric stents; however, patient counselling is paramount due to side effects such as retrograde ejaculation and postural hypotension. Lamb et al (2011) advocated a multicentre study to validate the management of ureteric stent symptoms, including the role of pharmacological agents. Participants reflected on the effect having a ureteric stent had on their sexual function, some participants voiced that they did not attempt sexual intercourse when they had the ureteric stent due to the voiding symptoms they experienced. Numerous quantitative studies (Irani et al, 1999; Dellis et al, 2014; Abdelaal et al, 2016) have used the Ureteral Stent Symptom Questionnaire developed and validated by Joshi et al (2003) to quantify the burden of ureteric stents and part of this questionnaire examines sexual function. Bosio et al (2013) noted that 45% of patients who had an active sex life prior to stenting stopped having sexual intercourse due to stent symptoms, with 39% stating that they experienced pain during intercourse.
Joshi et al (2001) validated a patient booklet on ureteric stents following a qualitative/quantitative study of patients with ureteric stents; they noted that 80% of patients wanted verbal and written instruction regarding their stent and that illustrations were beneficial. They also observed that patients want to be informed regarding adverse effects of ureteric stents and how to manage them. Patient concordance is essential to ureteric stent management and this is only achieved when both health professionals and patients have open discussions regarding ureteric stent symptom management. Participant 3, a nurse by profession, was amazed by his lack of understanding as to the effect of the stent until he was exposed to it himself; he now finds that he has more empathy and understanding; however, he feels that more written information could be available.
Lived time
Participants reflected on the effect that time had on their stent and their stent symptoms. Participants recollected that the stent was no problem at first and that over time the symptoms developed. Participants voiced concern that bed shortages, staff shortages and theatre closures affected their treatment plan and resulted in participants having to attend A&E for treatment such was the severity of the pain as they awaited removal of their ureteric stent. Nevo et al (2017) suggested that waiting times and limited resources should be taken into account when planning treatment pathways. Bosio et al (2013) remarked that 65% of patients said they would not be willing to have a ureteric stent again due to the negative impact of the stent on their general health, work and sexual function. Participants interviewed during this study rationalised the necessity of the ureteric stent, and linked the ureteric stent with the conservation of health. This could clarify why participants in this study would consent to ureteric stent placement in the future despite the negative impact on their lives.
Lived human relations (relationality)
Communication is the cornerstone of health care, it is essential for delivery of efficient, effective, high-quality care and to enhance positive patient experiences (Wolderslund et al, 2017). Facilitating informed consent requires relevant information adhering to best practice and open discussion of the condition. It is this essential component of health care that can be influenced by external factors such as staff shortages and limited resources to provide efficient, effective services. Participants voiced frustration at the lack of availability of services, lack of beds and lack of staff during their treatments. Staff attempted to explain the rationale for treatment delays; however, participants felt that this delay in care increased the burden on beds. Delbanco and Gerteis (2018) believed that relationships between health professionals and patients can be more troubled if feedback is not facilitated, and that individualised patient care incorporated into daily routine and continuity of care are essential to the delivery of excellent care. Patient education regarding ureteric stent symptoms and the temporary status of ureteric stents is essential for patient satisfaction regarding delivery of care (Nakada and Patel, 2018).
Limitations
The data were collected in a single urology unit. Participants who volunteered to participate were mainly male; this reflects the predominantly male population presenting with ureteric colic requiring ureteric stents as part of treatment within the catchment area. This study reflects the adverse effects of ureteric stents and not asymptomatic ureteric stents, as no asymptomatic patients enrolled as participants.
Conclusion
The findings of this study noted the impact that ureteric stents have on the quality of life and functional status of participants causing distress and anxiety. Urological nurses can positively impact the care of the patient with a ureteric stent by following these recommendations using the four existential life worlds to guide their actions. Patients need to be educated regarding the care of ureteric stents and how to manage stent symptoms via conservative or pharmacological management. Urological nurses and all health professionals need to acknowledge the impact ureteric stents have on patients and provide an empathetic, patient-centred pathway of care that provides effective efficient access to timely treatment and removal of symptomatic ureteric stents. However, in the context of organisational financial constraints this can be a challenge for health professionals. The development of patient information packs regarding ureteric stents containing advice and contact details for relevant health professionals will enhance the patient's treatment journey. Further study is envisaged following integration of this proposed pathway of care within the first author's urology unit to assess the impact that an integrated care pathway has on the patient experience of living with a ureteric stent. This study would also capture the percentage of patients with ureteric stent symptoms, as all patients necessitating ureteric stents within a specified time period would be captured.