Scandinavian Journal of Urology. 2015; 49: 162–168
ORIGINAL ARTICLE
A qualitative study exploring male cancer patients’ experiences with percutaneous nephrostomy
LENE HYLDGAARD BIGUM1, MARLÈNE ELISABETH SPIELMANN2, GITTE JUHL3 & ANNLISE RASMUSSEN1 1 3
Department of Urology, Herlev Hospital, Denmark, 2Danish Cancer Society, Copenhagen, Denmark, and Department of Palliative Medicine, Frederikssund Hospital, Denmark
Abstract Objective. Obstructive uropathy due to advanced cancer can be efficiently treated with a percutaneous nephrostomy. The treatment is associated with complications and frequent readmissions. How the patients’ quality of life is affected by a nephrostomy remains uncertain. The aim of this study was to describe how a nephrostomy is perceived by patients and its effects on their everyday lives. Material and methods. Semi-structured interviews were conducted in the patients’ home using a mind map. The inclusion criteria were locally advanced or metastatic urological cancer treated with a nephrostomy for a minimum of 1 month. All interviews were audio recorded, transcribed and analysed using a grounded theory approach. Ten male patients were interviewed, eight with prostate cancer and two with bladder cancer. Results. Treatment with nephrostomy influenced the physical activity level and restricted normal social activities. Readmissions had a negative influence on mood. However, the patients who experienced symptom improvement were thankful for having had the nephrostomy, despite the inconveniences. Communicating about the hazards and benefits helped patients to adjust their expectations of a nephrostomy. Conclusions. The study describes how nephrostomy is a burdensome intervention accompanied by a plethora of complex physical and psychosocial issues. Having a nephrostomy on a palliative indication has extensive implications for the patients, which should not be neglected or underestimated. Individual assessment of each patient, together with excellent communication regarding the procedure and outcome, is essential. Most patients had frequent contact with the healthcare system and additional support could be offered by a palliative care service.
Key Words: cancer, hydronephrosis, malignant ureter obstruction, nephrostomy, qualitative research, urinary diversion
Introduction Obstructive uropathy due to advanced cancer can be efficiently treated with a percutaneous nephrostomy tube (PNT) [1]. Cancer patients increasingly undergo radiological examinations, which sometimes reveal asymptomatic hydronephrosis. The clinical question is whether the patient will benefit from a urinary diversion with either a PNT or a double-J (JJ) stent [2]. In the authors’ clinical setting, nephrostomy is often a second choice, in cases where internal stenting is not feasible or technically possible [3]. As a doctor, you can inform your patients about complications [4-6] and readmission rates [6], but what about the impact on quality of
life? One single study assessed the quality of life before and after insertion of a PNT, and no statistical differences were identified [7]. Does this mean that quality of life is not affected when living with a PNT? The aim of this study was to describe how a PNT is perceived by patients with urological cancer and the implications of the PNT on their everyday life. Material and methods Design and inclusion criteria The study applied qualitative methods making use of semi-structured, face-to-face interviews in the
Correspondence: L. H. Bigum, Department of Urology, Herlev Hospital, Herlev Ringvej 75, DK-2730 Herlev, Denmark. E-mail: [email protected]
(Received 5 November 2013; revised 29 May 2014; accepted 12 June 2014) ISSN 2168-1805 print/ISSN 2168-1813 online 2014 Informa Healthcare DOI: 10.3109/21681805.2014.938694
Patient perspectives on nephrostomy patients’ homes using a mind map [8]. To be included in the study, patients had to have locally advanced or metastatic urological cancer and at least one PNT for a minimum of 1 month, as well as being cognitively well preserved and living at home. Sampling and recruitment All patients at the Department of Urology at Herlev Hospital who were eligible for the study during the period August to November 2012 were contacted. Patients were identified from booking lists from the Department of Radiology. Information from the patient records was used only to identify whether the patients were eligible for the study. Seventeen patients were identified. Sampling was not done purposively, because the aim was for the patients to reflect the actual patient population in the department. Patients were recruited by telephone. The patients received a written layperson’s description before they committed to the study. Four patients did not want to participate, mainly because of poor general health. Thirteen patients made appointments for an interview. Two patients were hospitalized and died and one patient had the PNT removed. Thus, 10 patients were interviewed and included in this study. Ethical considerations The study did not need approval from the local ethics committee according to Danish regulations, because it was based on interviews and no intervention was made [9]. However, if the study had been conducted in another country approval may have been required. Patients were informed about the study in writing and orally, and they accepted participation orally. The ethical principles of the Helsinki Declaration were all enforced [10]. Interviewing patients could potentially open discussions that made the patients feel sad and depressed [11]. Using the mind map it was possible for the patients to decide the agenda and navigate around the themes.
anthropology and palliative medicine. The interviews were conducted using a mind map, which is a piece of paper with a question in the middle and four different themes (Figure 1). The mind map was designed to make the patient talk spontaneously about the physical, emotional, practical and social consequences of living with a PNT. Each interview started with a briefing regarding the study, the interviewer and the mind map. Five patients had their spouse participating in the interview. Then, the digital voice recorder was turned on and the patient could freely choose to talk about his experiences. When the interview had finished, the recorder was turned off and a debriefing was done to cover any sensitive issues. Notes were taken during the closing of the interview. The average duration of the recordings was 35 min (range 10–53 min).
Participants All patients in the study were males aged 64–82 years (median 73.5 years). Eight were married, one was divorced and one was widowed. None of the patients currently worked. Eight patients had prostate cancer and two had bladder cancer. Three patients were receiving chemotherapy and three had previously received chemotherapy. One patient had a solitary kidney and four patients had a solitary functioning kidney. The median average duration of the PNT was 4.5 months (range 2.3–49.6 months) and the mean average duration was 15.0 months (SD 17.5). Table I shows an overview of all the medical devices needed by the patients. This patient group had a high frequency of use of other types of catheter. Patients with a colostomy explicitly mentioned practical problems when also having a PNT; therefore, a colostomy was included in Table I.
Changes of the body
Mood and thoughts
Data collection The interviews were performed in the patients’ homes, because the study was dealing with the patients’ everyday lives . Meeting the patients in their natural surroundings offered an opportunity for limited participant observation [12]. Another reason for interviewing the patients in their homes was to avoid the traditional doctor/patient relationship, which might have restricted the patients’ accounts. The interviews were all conducted by the same person, a specialist in urology with a background in medical
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What are your experiences with the nephrostomy tube?
Care of the catheter
Social life
Figure 1. Mind map – interview guide.
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Data analysis
Results
The analytical level was about finding contexts and condensing the patient perspectives using a grounded theory approach [13]. After each interview the recorded sound file was transcribed. When the 10 scheduled interviews had been carried out, both the transcribed interviews and the notes were read. The authors decided to proceed with further analysis when they assessed that saturation of the data had been reached. The interviewer carried out the initial handwritten coding using the themes from the mind map. For each interview a report was made with key points. During this process new analytical themes emerged [14]. Two of the authors reviewed the transcribed interviews together with a description of each theme. In this process four new themes were identified and agreed upon. The themes from the mind map were preserved; however, regarding the theme “Changes of the body”, the patients all described changes in their physical activity level and not changes in their perception of the body.
The results are presented in the following themes: News of a percutaneous nephrostomy tube; Temporary versus permanent nephrostomy; Lack of follow-up; Malfunction and infections; Care of a percutaneous nephrostomy tube; Physical activity: new limitations; Social life; and Mood and thoughts. News of a percutaneous nephrostomy tube I became sad; I would rather be without it. I didn’t really understand what it was until afterwards. It was the beginning of the end. The more they repair me the better. The patients reacted in various ways to the news of a PNT. Only one patient reacted positively to the news; he had been a patient at the Department of Urology for 23 years and felt that his life had been saved several times. The news of a PNT was often preceded by some bad news regarding the progression of the cancer or deterioration of renal function. The PNT was often presented as a temporary solution until internal stenting was carried out. Most patients did not understand the treatment until it became a reality. This fact supports the importance of checking the patients’ understanding of given information before proceeding with an intervention.
Reflexivity The role of the interviewer in a qualitative study may influence the data collection and the analytical process. The common role of the interviewer is more as an outsider and not an active part of the group being studied. Since the interviewer was a urologist studying thisparticular topic,the patients could easilyperceive the interviewer as an expert on their disease. In an attempt to reveal the patients’ own interpretations, the interviewer did not correct patients’ statements or explain medical rationalities [15]. The interviewer encouraged the patientstocomeforward withgoodandbad experiences, including criticism of medical services, while emphasizing the confidentiality of the study.
Temporary versus permanent nephrostomy In the beginning I didn’t think that my nephrostomy should be permanent. I believed that it was just a temporary measure until a JJ stent was put in. Then stenting failed both ways – and the doctor came and said to me, that now the
Table I. Overview of the patients’ use of medical devices. Patient
Unilateral nephrostomy
1
X
2
X
3
X
4
X
5
X
6
X
7
X
8
X
9
Bilateral nephrostomy
Colostomy
X
Total
9
Subrapubic catheter
Male external catheter
Diaper
Appliance(s) per patient
X
2
X
2
X
2 1 X
X
2
X
3 X
X X
10
Bladder catheter
2
X
3
X
3
X 1
3
5
2 1
1
1
Patient perspectives on nephrostomy nephrostomy was permanent. I got angry and sad. Why didn’t they say that from the start, that it might be a permanent solution? If I had known that, then I think I would have let that kidney die. The patients in this study wanted to know the time perspectives and the worst case scenario of having a PNT before they accepted the procedure. Lack of follow-up I had to seek information about the tube myself. It annoys me when things are initiated without informing about it and then nobody follows up. I had to remind the department several times that my tube was due to be changed. The feeling of lack of follow-up from the hospital regarding change of catheter, change of connections, supplies of bags and dressings and instructions for home care nurses made the patients feel personally responsible for the correct care of the PNT. The feeling of “being forgotten” by the hospital resulted in a lack of confidence and insecurity for the patients. Malfunction and infections In the following statements patients describe malfunction of the PNT and infections. Several other patients had similar problems. In one year I had been to the emergency room 10 times because the tube stopped working. Each time I became really ill, because I only have one kidney. I had been hospitalized for 10 weeks due to endocarditis and was on IV antibiotics for six weeks. The infection probably came from the nephrostomy. Frequent acute readmissions made planning of everyday life difficult. The patients often had to cancel appointments owing to readmissions. Recovery after readmission, especially after urosepsis, took days to weeks. The changing of a PNT, either every third month or when it was malfunctioning, was a feared situation for patients because of discomfort, pain and previous failed procedures. The risk of malfunction and infection enhanced the patients’ awareness of early signs of upcoming problems (change in output, colour of output, smell of output and skin alterations under the dressing). Care of the percutaneous nephrostomy tube Management of the tube(s) and the urine collecting bag (s) was time consuming. Patients with multiple catheters and/or a colostomy experienced entanglements and hygiene problems. Changing the dressing
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required time and planning and was a potentially painful event. Two patients had their spouse change the dressing. Eight patients had a home care nurse coming once or twice weekly to change the dressing. Patients quickly evaluated the home care nurses’ ability and experience in taking care of a nephrostomy. The patients spent a lot of time explaining to the nurses what and how things should be done. Patients were uncertain as to who should guide them: home care nurses, or doctors or nurses from departments of urology, radiology or oncology. Patients lacked a coordinating place for seeking advice, help and supplies. Physical activity: new limitations Earlier there would just be a leaf lying on my lawn – then I would be running out to pick it up. Now, I’m just sitting here and can’t do a thing. Having a PNT caused some limitations to everyday life and leisure time. Three patients enjoyed swimming and hot water training and had to give up these activities. Running and cycling were also described as activities that patients no longer felt comfortable doing. Gardening, involving kneeling or sweeping, was avoided, owing to discomfort sitting on the urine bag(s) and fear of displacement of the PNT during vigorous movements. Sleeping problems were frequently described, and the patients had various explanations, including inability to relax, discomfort, troublesome thoughts and worries, and not being able to lie in their favourite position. However, the cancer itself had also caused limitations for some patients. Patients were inhibited by the fear of displacing the PNT during physical activity and having to go to the hospital for a replacement. Social life Several patients felt restricted in carrying out their normal social activities, and mentioned leakage and smell problems as reasons. I several times have experienced the urine bag disconnecting. I always have a pair of clean pants and underwear with me when I’m outside my home. I can’t smell anything myself. But I am worried that someone else can smell something. Travelling was almost impossible because of a lack of insurance coverage and the risk of deterioration in patients’ general health status. I have travelled a lot – but I want to travel more. But my wife is more sceptical; she doesn’t want me to be in a hospital abroad. She doesn’t think I have the strength to travel right now.
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The patients had individual strategies for involving relatives. Two patients described their own approach, varying from telling everything to being more restricted. I tell my family everything that’s going on with me. That’s the way I like it, because it prevents rumours. I also tell them when I’m feeling bad. They sometimes say to me: “Are you hospitalized again, you old fool (laughing)?” Everybody knows what’s happening to me. They understand if we have to cancel an appointment. It is no problem that they know about my situation. But I tell you, I prefer that we don’t talk about it. Then things run more smoothly. The different approaches to social life were related more to the patients’ different understanding of their illness than to the actual implications of the PNT.
The study provides new insight of how a PNT is an intervention of fundamental importance in patients’ lives. Using a qualitative method made it possible to collect the narratives of patients, which are not normally accounted for in a hospital setting, because time, trust and confidentiality are required to unfold the patients’ emotions and experiences. The patients carefully evaluated the pros and cons of the PNT. The essential question is whether the patient’s life or kidney has been saved. If the patient’s life has been saved, the PNT becomes a sign of hope and rescue, and even with complications the PNT is perceived as a success. In contrast, patients not directly benefiting from the PNT think that all their misery and despair is due to the PNT.
Mood and thoughts
Limitations of the study
The mood is very good. Luckily I have a bit of a grim humorous approach to things. I think that my situation is shitty. But I have decided to get through this. Some patients used humour in a very active way, to express worries, strong opinions, criticism and frustrations. Patients’ moods were ambivalent; on the one side sad, scared and worried, and on the other filled with hope and joy. I try to keep the sprit up for myself and my family, which I think is good. Sometimes I think it’s a bit too hard. I have to make sure that my wife and children don’t get sadder. Patients’ moods were related to the behaviour and attitudes of their close relatives. The patients sometimes believed that they had to be brave and think positively so as not to make themselves and their relatives sad. It is important for patients to be recognized and confirmed in their approach to their illness. Encouraging comments from healthcare staff about how well the patients were handling the situation were important. Interviewer: How did it influence your mood being hospitalized for 10 weeks? Patient: It affected my mood a lot. It was like being in prison. You just couldn’t see the bars. You just wait and wait. I have never cried or anything liked that. But you start crying because it is psychologically very tough. Being hospitalized had a negative impact on the patients’ mood. Two patients experienced fellow patients dying in the bed next to them. Two patients experienced being isolated because of multidrug-resistant bacteria; this also strongly influenced their mood in a negative way.
This study was conducted on middle-aged to old males. The patients used a lot of other catheters, as summed up in Table I. It is difficult to differentiate between the implications of each catheter, because patients tend to sum up the consequences of all the catheters. Thematic saturation was reached after 10 interviews; however, sex and intimacy were not mentioned in any of the interviews. A special characteristic of the patient group was that eight out of 10 were receiving castration therapy. The study lacks important data on sexual life and had no female participants. The results deal with a broad spectrum of practical obstacles, communicative barriers and emotional afflictions, which can vary from patient to patient. Making generalizations from qualitative research can be challenging because the study was conducted in a specific cultural and medical context [16]. The weaknesses of this study are that the patients were interviewed once and only one method was applied. Furthermore, the patients had either prostate or bladder cancer, with makes it difficult to generalize to other patient groups with different activity levels, sex and work life, symptoms and prognosis. However, the study describes the patients’ perspectives and the implications of the interventions, which enforces the importance of dialogue between patients and clinicians to achieve a balanced approach to the indications for a PNT.
Discussion
Clinical considerations For patients to tolerate living with a PNT on a palliative indication, it is important that they experience some clinical benefits. When patients experience improvements it helps them to understand the reason
Patient perspectives on nephrostomy for the intervention and accept the daily inconveniences. Benefits could be improvement of pain or uraemic symptoms, drainage of pyonephrosis or improved renal function making chemotherapy possible. When evaluating this type of patient, the indication must be clear so that the clinician can evaluate the potential benefits [17]. An alternative urinary diversion such as a JJ stent should be considered in all patients. The discussion concerning PNT versus JJ stents is ongoing. A recent study measuring quality of life three times, after a PNT, JJ stent or internal–external nephroureteral stent placement, showed no significant differences, but the group with a PNT required more frequent tube changes [18]. The present patients described tube changes – scheduled or acutely – as a feared situation owing to discomfort, pain and insecurity. Adequate information about tube changes, together with pain medication and tranquilizers, is an appropriate strategy. Individual assessment is necessary, and excellent communication among the clinical team, the patient and their relatives is important to ensure understanding of the purpose of treatment and outcome. It would be an advantage to narrow down the indications to include patients with symptomatic obstructive uropathy and/or improvement of renal function before promising chemotherapy. Asymptomatic patients with preserved renal function should not routinely be offered a PNT because they are unlikely to benefit from the intervention. New perspectives Patients with advanced cancer and nephrostomy may struggle with complex symptoms and deterioration of their general health. The results show that these patients have a compromised ability to carry out normal physical and social activities, with negative influences on their emotional health. Most patients fulfil the World Health Organization definition of needing palliative care [19], and referral to a palliative care service could provide additional support for these patients. Conclusions Treatment with a PNT in the context of advanced malignancy brings and is accompanied by a plethora of complex physical and psychosocial issues for the patient to deal with. Patients have to make extensive adjustments to live with a PNT. However, patients who experience benefits from having a PNT, such as pain relief, optimized renal function for chemotherapy or avoiding renal failure, are more likely to adapt to
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their new living conditions. Clinical practice could be improved by carefully assessing each patient and ensuring their understanding of the procedure and outcome. Even with excellent communication and thorough information regarding life with a nephrostomy, the implications can be extensive for some patients, and should not be neglected or underestimated by healthcare staff. For additional support, referral to palliative care services should be considered. Acknowledgements We thank Ann Kingsbury Smith and Curtis C. Smith for final language revision of the manuscript. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
References [1] Nariculam J, Murphy DG, Jenner C, Sellars N, Gwyther S, Gordon SG, et al. Nephrostomy insertion for patients with bilateral ureteric obstruction caused by prostate cancer. Br J Radiol 2009;82:571–6. [2] Misra S, Coker C, Richensberg J. Percutaneous nephrostomy for ureteric obstruction due to advanced pelvic malignancy: have we got the balance right? Int Urol Nephrol 2013;45: 627–32. [3] Kraemer PC, Borre M. [Relief of upper urinary tract obstruction in patients with cancer of the prostate]. Ugeskr læger 2009;171:873–6; In Danish. [4] Shekarriz B Shekarriz H, Upadhyay J, Banerjee M, Becker H, Pontes JE, et al. Outcome of palliative urinary diversion in treatment of advanced malignancies. Cancer 1999;85:998– 1003. [5] Radecka E, Magnusson A. Complications associated with percutaneous nephrostomies. A retrospective study. Acta Radiol 2004;45:184–8. [6] Wong LM, Cleeve LK, Milner AD, Pitman AG. Malignant ureteral obstruction: outcomes after intervention. Have things changed? J Urol 2007;178:178–83. [7] Aravantinos E, Anagnostou T, Karatzas AD, Papakonstantinou W, Samarinas M, Melekos MD. Percutaneous nephrostomy in patients with tumors of advanced stage: treatment dilemmas and impact on clinical course and quality of life. J Endourol 2007;21:1297–302. [8] Steiner K. InterView. En introduktion til det kvalitative forskningsinterview. Copenhagen: Hans Reitzel; 2006. p 41–6; In Danish. [9] Central Videnskabsetiske komité. Vejledning nr. 9154 af 5. maj 2011 om anmeldelse m.v. af et biomedicinsk forskningsprojekt til det videnskabsetiske komitésystem [Internet]. Copenhagen; updated 2011. cited 9 October 2011 Available from http://cvk.sum.dk/forskere/~/media/Files/cvk/forskere/ vejledning/Vejledning050511.ashx; In Danish. [10] World Medical Association. Declaration of Helsinki – Ethical principles for medical research involving human subjects
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L. H. Bigum et al. [Internet]. Geneva: WMA; 1964. updated October 2008 cited 9 September 2013 Available from http://www.wma. net/en/30publications/10policies/b3/index.html. Reid J. Conducting qualitative research with advanced cancer patients and their families: ethical considerations. Int J Palliat Nurs 2009;15:30–3. Rubow C. Samtalen: interviewet som deltagerobservation. In Hastrup K, editor. Ind i verden – en grundbog i antropologisk metode. Copenhagen: Hans Reitzel; 2003. p 227–42; In Danish. Ellis D. Modelling the information-seeking patterns of academic researchers: a grounded theory approach. Libr Q 1993;4:469–86. Pope C, Ziebland S, Mays N. Qualitative research in health care. Analyzing qualitative data. BMJ 2000;320:114–16.
[15] Bubgly AF, Thomas C, Brown J, Reeve J, Payne S. Developing narrative research in supportive and palliative care: the focus on illness narratives. Palliat Med 2008;22:653–8. [16] Payne G, Williams M. Generalization in qualitative research. Sociology 2005;39:295–314. [17] Kinn AC, Ohlsén H. Percutaneous nephrostomy – a retrospective study focused on palliative indications. APMIS Suppl 2003;109:66–70. [18] Monsky WL, Molloy C, Jin B, Nolan T, Fernando D, Loh S, et al. Quality-of-life assessment after palliative interventions to manage malignant ureteral obstruction. Cardiovasc Intervent Radiol 2013;36:1355–63. [19] World Health Organization. WHO definition of palliative care [Internet]. Geneva: WHO; 2014. cited 4 January 2014 Available from http://www.who.int/cancer/palliative/definition/en/.
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ORIGINAL ARTICLE
A qualitative study exploring male cancer patients’ experiences with percutaneous nephrostomy
LENE HYLDGAARD BIGUM1, MARLÈNE ELISABETH SPIELMANN2, GITTE JUHL3 & ANNLISE RASMUSSEN1 1 3
Department of Urology, Herlev Hospital, Denmark, 2Danish Cancer Society, Copenhagen, Denmark, and Department of Palliative Medicine, Frederikssund Hospital, Denmark
Abstract Objective. Obstructive uropathy due to advanced cancer can be efficiently treated with a percutaneous nephrostomy. The treatment is associated with complications and frequent readmissions. How the patients’ quality of life is affected by a nephrostomy remains uncertain. The aim of this study was to describe how a nephrostomy is perceived by patients and its effects on their everyday lives. Material and methods. Semi-structured interviews were conducted in the patients’ home using a mind map. The inclusion criteria were locally advanced or metastatic urological cancer treated with a nephrostomy for a minimum of 1 month. All interviews were audio recorded, transcribed and analysed using a grounded theory approach. Ten male patients were interviewed, eight with prostate cancer and two with bladder cancer. Results. Treatment with nephrostomy influenced the physical activity level and restricted normal social activities. Readmissions had a negative influence on mood. However, the patients who experienced symptom improvement were thankful for having had the nephrostomy, despite the inconveniences. Communicating about the hazards and benefits helped patients to adjust their expectations of a nephrostomy. Conclusions. The study describes how nephrostomy is a burdensome intervention accompanied by a plethora of complex physical and psychosocial issues. Having a nephrostomy on a palliative indication has extensive implications for the patients, which should not be neglected or underestimated. Individual assessment of each patient, together with excellent communication regarding the procedure and outcome, is essential. Most patients had frequent contact with the healthcare system and additional support could be offered by a palliative care service.
Key Words: cancer, hydronephrosis, malignant ureter obstruction, nephrostomy, qualitative research, urinary diversion
Introduction Obstructive uropathy due to advanced cancer can be efficiently treated with a percutaneous nephrostomy tube (PNT) [1]. Cancer patients increasingly undergo radiological examinations, which sometimes reveal asymptomatic hydronephrosis. The clinical question is whether the patient will benefit from a urinary diversion with either a PNT or a double-J (JJ) stent [2]. In the authors’ clinical setting, nephrostomy is often a second choice, in cases where internal stenting is not feasible or technically possible [3]. As a doctor, you can inform your patients about complications [4-6] and readmission rates [6], but what about the impact on quality of
life? One single study assessed the quality of life before and after insertion of a PNT, and no statistical differences were identified [7]. Does this mean that quality of life is not affected when living with a PNT? The aim of this study was to describe how a PNT is perceived by patients with urological cancer and the implications of the PNT on their everyday life. Material and methods Design and inclusion criteria The study applied qualitative methods making use of semi-structured, face-to-face interviews in the
Correspondence: L. H. Bigum, Department of Urology, Herlev Hospital, Herlev Ringvej 75, DK-2730 Herlev, Denmark. E-mail: [email protected]
(Received 5 November 2013; revised 29 May 2014; accepted 12 June 2014) ISSN 2168-1805 print/ISSN 2168-1813 online 2014 Informa Healthcare DOI: 10.3109/21681805.2014.938694
Patient perspectives on nephrostomy patients’ homes using a mind map [8]. To be included in the study, patients had to have locally advanced or metastatic urological cancer and at least one PNT for a minimum of 1 month, as well as being cognitively well preserved and living at home. Sampling and recruitment All patients at the Department of Urology at Herlev Hospital who were eligible for the study during the period August to November 2012 were contacted. Patients were identified from booking lists from the Department of Radiology. Information from the patient records was used only to identify whether the patients were eligible for the study. Seventeen patients were identified. Sampling was not done purposively, because the aim was for the patients to reflect the actual patient population in the department. Patients were recruited by telephone. The patients received a written layperson’s description before they committed to the study. Four patients did not want to participate, mainly because of poor general health. Thirteen patients made appointments for an interview. Two patients were hospitalized and died and one patient had the PNT removed. Thus, 10 patients were interviewed and included in this study. Ethical considerations The study did not need approval from the local ethics committee according to Danish regulations, because it was based on interviews and no intervention was made [9]. However, if the study had been conducted in another country approval may have been required. Patients were informed about the study in writing and orally, and they accepted participation orally. The ethical principles of the Helsinki Declaration were all enforced [10]. Interviewing patients could potentially open discussions that made the patients feel sad and depressed [11]. Using the mind map it was possible for the patients to decide the agenda and navigate around the themes.
anthropology and palliative medicine. The interviews were conducted using a mind map, which is a piece of paper with a question in the middle and four different themes (Figure 1). The mind map was designed to make the patient talk spontaneously about the physical, emotional, practical and social consequences of living with a PNT. Each interview started with a briefing regarding the study, the interviewer and the mind map. Five patients had their spouse participating in the interview. Then, the digital voice recorder was turned on and the patient could freely choose to talk about his experiences. When the interview had finished, the recorder was turned off and a debriefing was done to cover any sensitive issues. Notes were taken during the closing of the interview. The average duration of the recordings was 35 min (range 10–53 min).
Participants All patients in the study were males aged 64–82 years (median 73.5 years). Eight were married, one was divorced and one was widowed. None of the patients currently worked. Eight patients had prostate cancer and two had bladder cancer. Three patients were receiving chemotherapy and three had previously received chemotherapy. One patient had a solitary kidney and four patients had a solitary functioning kidney. The median average duration of the PNT was 4.5 months (range 2.3–49.6 months) and the mean average duration was 15.0 months (SD 17.5). Table I shows an overview of all the medical devices needed by the patients. This patient group had a high frequency of use of other types of catheter. Patients with a colostomy explicitly mentioned practical problems when also having a PNT; therefore, a colostomy was included in Table I.
Changes of the body
Mood and thoughts
Data collection The interviews were performed in the patients’ homes, because the study was dealing with the patients’ everyday lives . Meeting the patients in their natural surroundings offered an opportunity for limited participant observation [12]. Another reason for interviewing the patients in their homes was to avoid the traditional doctor/patient relationship, which might have restricted the patients’ accounts. The interviews were all conducted by the same person, a specialist in urology with a background in medical
163
What are your experiences with the nephrostomy tube?
Care of the catheter
Social life
Figure 1. Mind map – interview guide.
164
L. H. Bigum et al.
Data analysis
Results
The analytical level was about finding contexts and condensing the patient perspectives using a grounded theory approach [13]. After each interview the recorded sound file was transcribed. When the 10 scheduled interviews had been carried out, both the transcribed interviews and the notes were read. The authors decided to proceed with further analysis when they assessed that saturation of the data had been reached. The interviewer carried out the initial handwritten coding using the themes from the mind map. For each interview a report was made with key points. During this process new analytical themes emerged [14]. Two of the authors reviewed the transcribed interviews together with a description of each theme. In this process four new themes were identified and agreed upon. The themes from the mind map were preserved; however, regarding the theme “Changes of the body”, the patients all described changes in their physical activity level and not changes in their perception of the body.
The results are presented in the following themes: News of a percutaneous nephrostomy tube; Temporary versus permanent nephrostomy; Lack of follow-up; Malfunction and infections; Care of a percutaneous nephrostomy tube; Physical activity: new limitations; Social life; and Mood and thoughts. News of a percutaneous nephrostomy tube I became sad; I would rather be without it. I didn’t really understand what it was until afterwards. It was the beginning of the end. The more they repair me the better. The patients reacted in various ways to the news of a PNT. Only one patient reacted positively to the news; he had been a patient at the Department of Urology for 23 years and felt that his life had been saved several times. The news of a PNT was often preceded by some bad news regarding the progression of the cancer or deterioration of renal function. The PNT was often presented as a temporary solution until internal stenting was carried out. Most patients did not understand the treatment until it became a reality. This fact supports the importance of checking the patients’ understanding of given information before proceeding with an intervention.
Reflexivity The role of the interviewer in a qualitative study may influence the data collection and the analytical process. The common role of the interviewer is more as an outsider and not an active part of the group being studied. Since the interviewer was a urologist studying thisparticular topic,the patients could easilyperceive the interviewer as an expert on their disease. In an attempt to reveal the patients’ own interpretations, the interviewer did not correct patients’ statements or explain medical rationalities [15]. The interviewer encouraged the patientstocomeforward withgoodandbad experiences, including criticism of medical services, while emphasizing the confidentiality of the study.
Temporary versus permanent nephrostomy In the beginning I didn’t think that my nephrostomy should be permanent. I believed that it was just a temporary measure until a JJ stent was put in. Then stenting failed both ways – and the doctor came and said to me, that now the
Table I. Overview of the patients’ use of medical devices. Patient
Unilateral nephrostomy
1
X
2
X
3
X
4
X
5
X
6
X
7
X
8
X
9
Bilateral nephrostomy
Colostomy
X
Total
9
Subrapubic catheter
Male external catheter
Diaper
Appliance(s) per patient
X
2
X
2
X
2 1 X
X
2
X
3 X
X X
10
Bladder catheter
2
X
3
X
3
X 1
3
5
2 1
1
1
Patient perspectives on nephrostomy nephrostomy was permanent. I got angry and sad. Why didn’t they say that from the start, that it might be a permanent solution? If I had known that, then I think I would have let that kidney die. The patients in this study wanted to know the time perspectives and the worst case scenario of having a PNT before they accepted the procedure. Lack of follow-up I had to seek information about the tube myself. It annoys me when things are initiated without informing about it and then nobody follows up. I had to remind the department several times that my tube was due to be changed. The feeling of lack of follow-up from the hospital regarding change of catheter, change of connections, supplies of bags and dressings and instructions for home care nurses made the patients feel personally responsible for the correct care of the PNT. The feeling of “being forgotten” by the hospital resulted in a lack of confidence and insecurity for the patients. Malfunction and infections In the following statements patients describe malfunction of the PNT and infections. Several other patients had similar problems. In one year I had been to the emergency room 10 times because the tube stopped working. Each time I became really ill, because I only have one kidney. I had been hospitalized for 10 weeks due to endocarditis and was on IV antibiotics for six weeks. The infection probably came from the nephrostomy. Frequent acute readmissions made planning of everyday life difficult. The patients often had to cancel appointments owing to readmissions. Recovery after readmission, especially after urosepsis, took days to weeks. The changing of a PNT, either every third month or when it was malfunctioning, was a feared situation for patients because of discomfort, pain and previous failed procedures. The risk of malfunction and infection enhanced the patients’ awareness of early signs of upcoming problems (change in output, colour of output, smell of output and skin alterations under the dressing). Care of the percutaneous nephrostomy tube Management of the tube(s) and the urine collecting bag (s) was time consuming. Patients with multiple catheters and/or a colostomy experienced entanglements and hygiene problems. Changing the dressing
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required time and planning and was a potentially painful event. Two patients had their spouse change the dressing. Eight patients had a home care nurse coming once or twice weekly to change the dressing. Patients quickly evaluated the home care nurses’ ability and experience in taking care of a nephrostomy. The patients spent a lot of time explaining to the nurses what and how things should be done. Patients were uncertain as to who should guide them: home care nurses, or doctors or nurses from departments of urology, radiology or oncology. Patients lacked a coordinating place for seeking advice, help and supplies. Physical activity: new limitations Earlier there would just be a leaf lying on my lawn – then I would be running out to pick it up. Now, I’m just sitting here and can’t do a thing. Having a PNT caused some limitations to everyday life and leisure time. Three patients enjoyed swimming and hot water training and had to give up these activities. Running and cycling were also described as activities that patients no longer felt comfortable doing. Gardening, involving kneeling or sweeping, was avoided, owing to discomfort sitting on the urine bag(s) and fear of displacement of the PNT during vigorous movements. Sleeping problems were frequently described, and the patients had various explanations, including inability to relax, discomfort, troublesome thoughts and worries, and not being able to lie in their favourite position. However, the cancer itself had also caused limitations for some patients. Patients were inhibited by the fear of displacing the PNT during physical activity and having to go to the hospital for a replacement. Social life Several patients felt restricted in carrying out their normal social activities, and mentioned leakage and smell problems as reasons. I several times have experienced the urine bag disconnecting. I always have a pair of clean pants and underwear with me when I’m outside my home. I can’t smell anything myself. But I am worried that someone else can smell something. Travelling was almost impossible because of a lack of insurance coverage and the risk of deterioration in patients’ general health status. I have travelled a lot – but I want to travel more. But my wife is more sceptical; she doesn’t want me to be in a hospital abroad. She doesn’t think I have the strength to travel right now.
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The patients had individual strategies for involving relatives. Two patients described their own approach, varying from telling everything to being more restricted. I tell my family everything that’s going on with me. That’s the way I like it, because it prevents rumours. I also tell them when I’m feeling bad. They sometimes say to me: “Are you hospitalized again, you old fool (laughing)?” Everybody knows what’s happening to me. They understand if we have to cancel an appointment. It is no problem that they know about my situation. But I tell you, I prefer that we don’t talk about it. Then things run more smoothly. The different approaches to social life were related more to the patients’ different understanding of their illness than to the actual implications of the PNT.
The study provides new insight of how a PNT is an intervention of fundamental importance in patients’ lives. Using a qualitative method made it possible to collect the narratives of patients, which are not normally accounted for in a hospital setting, because time, trust and confidentiality are required to unfold the patients’ emotions and experiences. The patients carefully evaluated the pros and cons of the PNT. The essential question is whether the patient’s life or kidney has been saved. If the patient’s life has been saved, the PNT becomes a sign of hope and rescue, and even with complications the PNT is perceived as a success. In contrast, patients not directly benefiting from the PNT think that all their misery and despair is due to the PNT.
Mood and thoughts
Limitations of the study
The mood is very good. Luckily I have a bit of a grim humorous approach to things. I think that my situation is shitty. But I have decided to get through this. Some patients used humour in a very active way, to express worries, strong opinions, criticism and frustrations. Patients’ moods were ambivalent; on the one side sad, scared and worried, and on the other filled with hope and joy. I try to keep the sprit up for myself and my family, which I think is good. Sometimes I think it’s a bit too hard. I have to make sure that my wife and children don’t get sadder. Patients’ moods were related to the behaviour and attitudes of their close relatives. The patients sometimes believed that they had to be brave and think positively so as not to make themselves and their relatives sad. It is important for patients to be recognized and confirmed in their approach to their illness. Encouraging comments from healthcare staff about how well the patients were handling the situation were important. Interviewer: How did it influence your mood being hospitalized for 10 weeks? Patient: It affected my mood a lot. It was like being in prison. You just couldn’t see the bars. You just wait and wait. I have never cried or anything liked that. But you start crying because it is psychologically very tough. Being hospitalized had a negative impact on the patients’ mood. Two patients experienced fellow patients dying in the bed next to them. Two patients experienced being isolated because of multidrug-resistant bacteria; this also strongly influenced their mood in a negative way.
This study was conducted on middle-aged to old males. The patients used a lot of other catheters, as summed up in Table I. It is difficult to differentiate between the implications of each catheter, because patients tend to sum up the consequences of all the catheters. Thematic saturation was reached after 10 interviews; however, sex and intimacy were not mentioned in any of the interviews. A special characteristic of the patient group was that eight out of 10 were receiving castration therapy. The study lacks important data on sexual life and had no female participants. The results deal with a broad spectrum of practical obstacles, communicative barriers and emotional afflictions, which can vary from patient to patient. Making generalizations from qualitative research can be challenging because the study was conducted in a specific cultural and medical context [16]. The weaknesses of this study are that the patients were interviewed once and only one method was applied. Furthermore, the patients had either prostate or bladder cancer, with makes it difficult to generalize to other patient groups with different activity levels, sex and work life, symptoms and prognosis. However, the study describes the patients’ perspectives and the implications of the interventions, which enforces the importance of dialogue between patients and clinicians to achieve a balanced approach to the indications for a PNT.
Discussion
Clinical considerations For patients to tolerate living with a PNT on a palliative indication, it is important that they experience some clinical benefits. When patients experience improvements it helps them to understand the reason
Patient perspectives on nephrostomy for the intervention and accept the daily inconveniences. Benefits could be improvement of pain or uraemic symptoms, drainage of pyonephrosis or improved renal function making chemotherapy possible. When evaluating this type of patient, the indication must be clear so that the clinician can evaluate the potential benefits [17]. An alternative urinary diversion such as a JJ stent should be considered in all patients. The discussion concerning PNT versus JJ stents is ongoing. A recent study measuring quality of life three times, after a PNT, JJ stent or internal–external nephroureteral stent placement, showed no significant differences, but the group with a PNT required more frequent tube changes [18]. The present patients described tube changes – scheduled or acutely – as a feared situation owing to discomfort, pain and insecurity. Adequate information about tube changes, together with pain medication and tranquilizers, is an appropriate strategy. Individual assessment is necessary, and excellent communication among the clinical team, the patient and their relatives is important to ensure understanding of the purpose of treatment and outcome. It would be an advantage to narrow down the indications to include patients with symptomatic obstructive uropathy and/or improvement of renal function before promising chemotherapy. Asymptomatic patients with preserved renal function should not routinely be offered a PNT because they are unlikely to benefit from the intervention. New perspectives Patients with advanced cancer and nephrostomy may struggle with complex symptoms and deterioration of their general health. The results show that these patients have a compromised ability to carry out normal physical and social activities, with negative influences on their emotional health. Most patients fulfil the World Health Organization definition of needing palliative care [19], and referral to a palliative care service could provide additional support for these patients. Conclusions Treatment with a PNT in the context of advanced malignancy brings and is accompanied by a plethora of complex physical and psychosocial issues for the patient to deal with. Patients have to make extensive adjustments to live with a PNT. However, patients who experience benefits from having a PNT, such as pain relief, optimized renal function for chemotherapy or avoiding renal failure, are more likely to adapt to
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their new living conditions. Clinical practice could be improved by carefully assessing each patient and ensuring their understanding of the procedure and outcome. Even with excellent communication and thorough information regarding life with a nephrostomy, the implications can be extensive for some patients, and should not be neglected or underestimated by healthcare staff. For additional support, referral to palliative care services should be considered. Acknowledgements We thank Ann Kingsbury Smith and Curtis C. Smith for final language revision of the manuscript. Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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