INTRODUCTION
Intermittent catheterization (IC) is the regular insertion of a catheter into the bladder via the urethra to achieve bladder emptying; it is frequently recommended for individuals with neurogenic bladder dysfunction associated with spinal cord injury, multiple sclerosis, myelodysplasia, and neurological disorders, as well as for individuals with idiopathic and non-neurogenic bladder dysfunction.1–5 Intermittent catheterization can also be used to maintain patency after urethral dilation.5 In most cases, IC is performed at recommended intervals, usually 4 to 6 times a day, to mimic normal bladder emptying.3,5,6 Clinical evaluation of the success of an IC program may be judged based on proper technique when performing catheterization and adherence to the prescribed frequency of catheterization. Lack of adherence to either (or both) of these elements may increase the risk of IC-associated complications such as pain, urinary trauma, or urinary tract infection (UTI).7
Individuals managed by IC may have comorbid conditions such as impaired motor skills that influence their ability to successfully adhere to an IC regimen.3,5 Acceptance also influences IC adherence. Some reports indicate that a large proportion of individuals may not accept IC; for example, Afsar and colleagues8 found that only 58% of individuals who learned IC continued to perform the procedure at follow-up, which ranged from 5 to 84 months (mean: 53.9 ± 27.7 months). Difficulty adhering to catheterization schedule has been reported in other studies.7–12 Even if IC has been accepted, adherence can be negatively affected by such factors as the frequency of complications with IC and practical barriers such as inadequate public toilet facilities, catheter size, ease of handling, portability, and comfort.8–12
Current guidelines recommend that individuals be offered a choice among different types of IC products.13,14 A systematic review and meta-analysis from the National Institute for Health and Care Excellence (NICE) sought to determine the most effective and cost-effective type of catheter for patients performing IC in the community. It reported that individual preference is among the drivers of cost-effectiveness for IC products.15 It also recommended that individuals be offered a choice among IC products, reasoning that someone who has participated in the selection of and is satisfied with the features of his or her IC system is more likely to achieve successful catheterization and adhere to the recommended frequency.10 These individuals are also less likely to experience IC-associated complications, resulting in adaptation of less desirable forms of bladder drainage such as long-term indwelling catheterization.
Several published reports of individuals' experience with IC have found that, although catheterization as a skill can be learned,9,10,16 features and characteristics of IC products facilitate or impair adherence. Specific features include a prelubricated design; hydrophilic substrate; touch or no-touch handling; material flexibility; and catheter diameter, length, tip design, and size.10,11,17–19
Despite these reports, we searched the literature and found a paucity of research exploring individuals' decision making regarding IC and reasons behind their preferences for one feature versus another. This descriptive, qualitative study explored individuals' lived experiences of IC, including perceived needs, barriers, and facilitators to successful use of IC products. Our objectives were to explore individuals' thoughts regarding their experiences of using IC, to better understand their perspectives on the utility and/or acceptability of IC products with different characteristics and features, and to identify barriers and facilitators to the successful integration of IC in daily life.
METHODS
We chose a descriptive, qualitative study because of its ability to explore individuals' thoughts regarding their experiences of using IC products and present findings using participants' own words. A semistructured interview guide was developed based on a review of existing literature and clinical experience of the research team. The interview guide solicited information about participants' reasons for using IC and details of IC products they currently use and have used. We collected data regarding reasons for discontinuing IC along with problems and/or challenges encountered with IC products. We also explored severity and frequency of UTI- and IC-related experiences that have influenced relationships with friends and family, mood and emotions, employment, activities, and other facets of life quality. Prior to initiation of activities, the research protocol was reviewed by institutional review board (IRB)/ethics authorities in each country where data were collected. The research was either given an IRB/ethics waiver or processed through IRB/ethics approval per country and local requirements. All participants provided written consent to release their (de-identified) personal details in the context of this research.
Data were collected from 2016 to 2017. We recruited a purposive sample of adults (aged ≥18 years) from 5 countries (United States, United Kingdom, Germany, France, and the Netherlands). The primary approach to recruitment was through Hollister's proprietary customer databases and clinician recruitment in each participating country. Local country Hollister staff approached clinicians and asked if they would identify potential patients to participate in the initial screening interviews where their interest in participating in the interviews was assessed and, if agreed, provided consent to release their personal details to a third party organization. Subsequently, eligible and interested participants were contacted by a third party that conducted the initial screening interviews as well as the full qualitative interview with the participants over the telephone. Eligible participants had neurogenic bladder dysfunction, used IC as their primary method of bladder emptying, had used IC for at least 1 year, and, in that time, had used at least 2 different IC products. Individuals with severe comorbid conditions, substance abuse, or cognitive impairment likely to interfere with participation in an interview, or who were unable to read, speak, or understand their local language, were excluded.
One-on-one telephone interviews with each participant were conducted by a professional company with staff trained in qualitative interviewing and fluent in the participant's local language. Each interview lasted approximately 1 hour. Interviews were digitally recorded with the participant's permission; those conducted in French, German, and Dutch were subsequently transcribed verbatim into English for analysis.
Data Analysis
We used the ATLAS.ti qualitative analysis software (version 7.5.11; ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) for content analysis. A dictionary covering 239 concepts was developed based on the interview guide; coding rules were applied by 2 coders to the interview transcripts. Coders added new codes when appropriate based on patients verbatim. Coders and reviewers met to review coding and revised the coding dictionary, including adding/removing codes, renamed/merged codes as appropriate, and agreed on coding rules. Coders coded an additional 23 transcripts using agreed-upon coding rules and recoded the 2 initial transcripts. Concepts represented in the coded interviews were subsequently grouped into broader themes and subthemes. The relevance of each of these themes in relation to individuals' decision making regarding IC and reasons behind individuals' preferences for one feature versus another were described independently by 2 researchers. Researchers derived themes based on information from the transcribed interviews and triangulated selected themes with clinician experts in urology and previous published literature describing challenges, experiences, and health-related quality of life for IC users.9,10,16,18,20,21
RESULTS
The sample comprised 25 participants; 22 (88%) were male, and their mean age was 54 years (range, 29-89 years). The most common cause of neurogenic bladder dysfunction was spinal cord injury resulting in paraplegia or quadriplegia (n = 13; 52%). Other reasons for use of IC identified by participants were incontinence (n = 6; 24%), neurological condition (n = 2; 8.0%), paralysis of bladder and bowel (n = 2; 8%), bladder removal and replacement (n = 1; 4.0%), and unspecified (n = 1; 4.0%). Seven (28%) participants were working in paid employment, 1 (3.6%) worked as a volunteer, 3 (12.0%) were retired, 9 (36.0%) were not working, and 5 (20.0%) did not specify their working status. Intermittent catheterization products currently used by participants in this study were ready-to-use hydrophilic intermittent catheters with a protective tip and sleeve with or without an integrated collection bag. Previous catheters included ready-to-use hydrophilic intermittent catheters with or without a protective sleeve, not ready-to-use hydrophilic catheters without a protective sleeve but with “no-touch” access to the catheter, and ready-to-use gel-coated intermittent catheters with a protective tip and sleeve with an integrated collection bag.
Themes
Nine main themes supported by subthemes were identified. They were: initial fear, UTI, pain/discomfort, independence, choice, community, life quality, resilience, and acceptance.
Theme 1: Initial Fear
Several participants expressed a sense of fear, at least initially, around the process of IC. This was especially evident for one participant, who stated, “You think to yourself, oh, God, I've got to put that into me bladder, how am I going to do that?”
Theme 2: Urinary Tract Infection
The issue of infection was raised by all participants when asked to talk about their experiences with IC, and references to UTI or the risk of UTI were common. In addition to acknowledging the experiences of participants related to UTI, we also analyzed the descriptive words they used to express their experiences. As one participant noted, “With the bowel issues and it all just combined. I would say the infections for three years were constant. They were up, down, up, down, up, down. It really did make me unwell. It was horrible. I was constantly at the doctors with them. And yeah, just horrible.” Another stated, “It was fever, disorientation, pain, spasms in my legs, you know. It just irritated the whole of my body, and exhaustion. And I do have to watch my fatigue levels as it is, so when I get infections, they're really bad for me. So the less bladder infections I get, the better.” A third respondent indicated, “You have a fever of 40 degrees [centigrade], you have to go to the hospital, you receive antibiotics. For a year you just take antibiotics every day and if you then still get ill then you'll get another course for 14 days. And so you then have to try and not get a bladder infection. In the first year ... I had to go back to the hospital very often, I was very ill, had to be admitted again. I was admitted three, four times a year.
Avoiding UTI was identified as a subtheme. All 25 participants expressed concerns about infection, described measures they took to avoid infection, and articulated some of the practical difficulties they encountered while trying to do so. As one participant explained, “So, you know, but I've got to be very careful, I've got to make sure—I've got to make sure that everything is clean when I use the catheters, you know, so I don't get any infections or other things, you know.” Another indicated, “I could not cath hygienically with [IC product] because I had to hold the catheter in the back at a certain point and then you had 40 cm of catheter and you had to insert it without it rubbing the wrong way somewhere. That was a problem. It was often the problem of a urinary tract infection. That I pushed bacteria into the bladder.” A third respondent stated, “I do a lot of traveling. And when I'm out, um, at a job site, you know, there's a lot of times there's nowhere to wash your hands or even, you know, use a bathroom other than maybe a port-a-potty or something. So I needed something that was sanitary that I didn't have to worry about getting urinary tract infections. The [IC product] was perfect for that. I didn't have to touch it even if my hands weren't totally sanitary.” Access to a facility to perform catheterization was raised by more than 1 participant. Another told the interviewer, “A lot of times it—most of the places that I'm at are rural areas or I'm in the middle of nowhere. I mean, there are some—a lot of them that are in the city, but there are no facilities for washing, you know, to—other than maybe using some hand sanitizer, whatever I might have with me.”
Reducing the frequency and severity of UTI also emerged as a subtheme of UTI. Participants' recollections of their past, unpleasant experiences with UTI figured prominently in their desire to prevent such infections in the future. One participant stated, “I [used to have] about 3 or 4 infections a year. Headaches, chills, an uncomfortable feeling ... it's hard to explain. I have no problems with bladder infections or anything since I've been using [IC product].” Another indicated, “It's been a good year and a half since I've had an infection. So I think [IC product] is doing a good job about that anyway.” Another participant explained the benefits of a particular product feature stating, “It has had a sleeve around it from the very beginning so that you no longer [have] the mess. With the urinary tract infections. They have decreased dramatically. And that's how I learned about the [IC product].”
Theme 3: Avoiding Discomfort, Trauma, and Pain During IC
When asked about complications related to current and previous IC product use, participants indicated that catheter design features exerted a major influence in their comfort and perceived risk of trauma. Catheter flexibility, diameter, material, size, lubrication, and hygienic properties were the characteristics most commonly mentioned by participants. For example, one respondent stated, “I found [IC product] very, quite stiff, so there was often some blood, a little bit of blood on, a bit of force to get them into the urethra. It wasn't always. That's what made me change [to a different kind of catheter], in fact.” Another participant indicated, “The [catheter] was quite a bit more in diameter, it was a harder plastic ... I actually caused myself pain using that, uh, I didn't like—um, the [catheter] I could actually feel, uh, discomfort, a pinch, you know ... it didn't work so well either.” Two participants commented on the process of catheter insertion and the risk of trauma with insertion. One noted, “I got to where just depending on how my anatomy was, my body just turned—sometimes it would go in and sometimes it wouldn't. It felt like I was causing damage to my—to my internals.” Another commented, “The first one they gave me had two—uh, they—um, the piece that enters—of the catheter, uh, which ended up leaving me bloodied.” In contrast to these experiences, one respondent stated, “[IC product] are ridiculously easy, plus they're transportable, and there's no problems with them, there's no bleeds, no cuts, and I've had no infections with them, you're not touching them. I'm not transferring any germs.” We identified ease of catheter use as a subtheme. Generally, people who need to use IC products need to use them several times a day, every day, in a variety of settings. This practical fact of life was evident in all interviews. Participants, especially those with impaired dexterity or motor skills, reported benefitting from a catheter that can be easily gripped and manipulated. As one participant observed, “Well, there aren't handicap-accessible toilets everywhere so that I can cath [catheterize] myself everywhere. I have to occasionally empty my bladder and it can be quite.... You have to keep an eye out for where you ... where a handicapped toilet is where you can cath yourself....” Another participant described the benefits of ready-to-use catheters in daily life activities, “I didn't want to go into work and, um, have to lubricate a catheter, you know, with my hands because there are times where, you know, some of the things that I work with that you can't just drop things and start, uh, lubricating.” Eliminating touch contamination was another feature described to facilitate clean catheterization: “[IC product] handling is simply great for a quadriplegic, because the entire thing is wrapped up and can be touched everywhere. And that was basically the reason for me as a quad ... that I could insert the catheter in a sterile way.”
Theme 4: Independence
Maintaining autonomy while on an IC program emerged as a valued benefit among respondents, including the subtheme of privacy. As one participant noted, “You know what, I've been in the [wheelchair] 26 years and, um, I wish I had come across [IC product] 26 years ago because what it's enabled me to do is, um, give me more independence.” Another respondent stated, “Well, the biggest difference with [IC product] is really the freedom. Now I'm the contact person for the spinal cord injury association. And then it was strange that if I had to be away one day, I had to make sure that I had a nurse with me to catheterize me. Now, nine out of ten times I can do it myself. That's a whole lot of freedom.”
Independence underscores the impact that IC products exerted on the individual's sense of privacy. Therefore, we identified privacy as a subtheme of independence due to statements regarding the importance of keeping other people unaware of their condition as well as discretion when carrying products in public settings. As one participant observed, “The [IC product] has made me feel positive because I can feel somewhat safer because I know that I have a catheter with me, because it's a compact catheter that doesn't stand out.” Another participant commented, “I have always needed larger bags and these aren't that noticeable. I can also stick it in the pocket of my jacket somehow. No one sees it.” Maintaining privacy also supports the individual to perform activities unhindered by their condition. As one participant who told the interviewer, “It's kind of like when I went up to Kilimanjaro last year I, you know, having that there was great. It's just an amazing product that you can easily take with you and dispose of and use and not worry and not feel embarrassed because you can still do it discreetly.
Theme 5: Choice
When asked about their process of selecting an IC product, about two-thirds of participants said they initially relied on a recommendation from their health care provider. Nevertheless, many participants reported switching IC products after proactively seeking alternatives to better meet their needs and/or because health care providers or other members of the IC community had made them aware of alternatives. As one participant reported, “I'm lucky that I had a decent nurse that said, ‘Look, let's try this out,’ and arranged products for me to try.” Another stated, “I went to a national wheelchair vet games and was given one as—or I signed up to get a free sample because I was always having problems cathing [catheterizing], so I was always looking for different options.” Others sought out information from individuals involved with sales on IC products. One participant shared, “I knew these people at the [trade show]. I went to see what was new [and] they explained it to me. They gave me five or six samples, I tried them and then I called them to give me the reference. Then I went to see a doctor and the doctor prescribed me these catheters.” Another sought out information from a manufacturer of IC products, “In response to a trial package that I requested [from the manufacturer] and because I also found information about [manufacturer] in certain journals and that did appeal to me, as well as positive notices on the fellow-sufferers' forum about [IC] products.”
Theme 6: Community
This theme focuses on the community among IC users and the openness that motivated multiple participants to share information intended to benefit others. This theme is related to theme 5 (choice); community provides a framework for seeking information from others when making choices about IC-related products. One participant described the desire to share beneficial knowledge with others; “When someone has something, then they know it and then he tells others, ‘Try it out.’ That's just how it is.” Another stated, “I recommend [IC product] because I am around quadriplegics a lot because of the sports and in my opinion, it is a perfect or almost perfect catheter for a quad.” Others described situations where knowledge was shared with friends or acquaintances. A participant stated, “[A] friend who was already catheterizing herself was worried and actually found that the catheters she was using were hurting her during catheterization and were just too rigid and so, well, I told her to try the ones I was using and apparently that stuck so she switched.” A second participant reported, “I've been able to pass on my enthusiasm [for IC product] because I play wheelchair basketball, I'm a coach—some of my players started using it because of the same situation, you know. And one of my friends, he was prone to more infections than myself and he hasn't had any. It's been brilliant.”
Theme 7: Life Quality
Intermittent catheterization is a practical tool; it exists to satisfy a physiological imperative to empty the bladder. While recognizing this imperative, participants shared that IC contributes to the respondent's ability to live life on her or his own terms. In this way, participants extended performing IC as more than an end in itself. Rather, it was defined as a means to an end, as defined by the individual using it. As one of the participants described their situation, “I used to do a lot of adaptive skiing. But my bladder was bad to do that. And so, it did impact a lot of things, a lot. Like I can—it's just nice normal things I can—you know, me and my best friend can go away for the night now and go to a spa. Just like I said like when we used to do it when my bladder was bad, you know if you're there having massages and I had the horrible incontinence pads on and I just couldn't relax.” Another described IC as a means to remain free from restrictions on meaningful activities, “If I need to go, I'll go, use it, and, you know, there's no real issue with it. It doesn't restrict me from doing anything. I haven't been restricted. I do anything that I would normally do, you know. I go out to dinner. I've been to concerts. I've traveled and it's very convenient.” A third participant also linked IC as a means to preserving sexual intimacy, “I would say [an] advantage of [IC product] is being able to have a sex life, definitely. Definitely.”
Theme 8: Resilience
For many participants, the successful navigation of life's challenges was a point of pride. Participants noted that despite having physical limitations, IC enabled them to enjoy life and not feel like a victim of their circumstance. In fact, some described their lives filled with activities and experiences that many, including those with full physical abilities, would never encounter or attempt. One participant described a rich and rewarding life when he told the interviewer, “I've been in a wheelchair, yeah, 26 years of my life at the moment which is—which is, um, yeah, it's pretty awesome because I wouldn't change it because I've done so much in my life anyway. I work full-time ... and I climb mountains, I go through obstacle courses, I get covered in mud, um, I do marathons and, uh, play basketball. So there.” Other participants commented on how they continue to have busy lives with full-time employment, family, and hobbies. One participant stated, “I had a car accident and since then I have been paraplegic with a neurogenic bladder disorder. I am self-employed. I also ... have a side job as a wheelchair rugby trainer and am therefore almost always on the go.” Another noted, “I am divorced, have a seven-year-old son and right now I am working full-time. In addition to my work, I sometimes go bicycling, swimming, walking and I am an active crew member of a hot air balloon team, with which I frequently participate.”
Theme 9: Acceptance
The final theme, acceptance, reflects participants' experiences with accepting IC as a part of their lives. As one participant described it, “In terms of me being able to go forward, it had to be done and—and the catheters had to be worked in there. So even though I know that it was a lifelong change, I knew it was a lifelong change for the better.” Another stated, “I'm just a nut in a wheelchair that does all these wonderful things and I love it and it's great and this [IC] product gives me the added—the added benefit of doing it ... without worrying about my personal care. A third respondent described acceptance as: “The fact that you have the impression of being calmer and that it's easier, I would say yes. It's a certain lightness of life.”
DISCUSSION
The aim of this descriptive, qualitative study was to explore individuals' experiences of IC, including perceived needs, barriers, and facilitators to successful use of IC products. Data analysis led to identification of 9 main themes: initial fear, UTI, pain/discomfort, independence, choice, community, life quality, resilience, and acceptance. All of these themes echo those described previously in published literature.9,10,16,18,20,21
For instance, work by Logan and colleagues18 and Van Achterberg and associates9 reported that success with IC is moderated by a number of facilitating or hindering factors, among them are fear, privacy, dignity, self-efficacy, and social interaction. Some participants in a study by Wilde and colleagues10 referred to IC as “a part of them.” Participants in a study by Bradley16 initially expressed apprehension (fear) about learning to perform IC, but they also described milestones in their experiences enabling them to “come to terms” with the procedure, allowing it to become a way of life. Notably, too, all of the dominant themes identified in our study are consistent with the explanatory theory of quality-of-life impacts for individuals using IC proposed by Shaw and colleagues.21 Based on their findings, Shaw's group proposed a model that incorporated multiple factors influencing an IC user's health-related quality of life. We hypothesize that actions taken to avoid and/or minimize the risk and severity of UTIs might be correlated to an IC user's ability to choose products that are easy to use and provide a level of independence leading to a positive life outlook and acceptance of their situation.
STRENGTHS AND LIMITATIONS
While the sample of this qualitative study was small, we interviewed individuals from 5 countries providing diversity in culture. Nevertheless, we acknowledge that taboos and stigmatizing attitudes toward excretion may be different in other countries and cultures and recommend additional research in this area. Our sample comprised community-dwelling individuals who had used IC for at least 1 year; we did not interview institutionalized individuals, those just beginning IC, or persons who started and abandoned IC. Because most of the participants in our study were male, our findings likely underrepresent sex-related issues relevant to IC. In addition, the generalizability and practical implications of these findings should be tested quantitatively.
CONCLUSIONS
Available evidence suggests that initial resistance to IC is common, practical challenges must be overcome, and some individuals require ongoing support to help them adapt to IC in their daily lives.20 In contrast, we found one study that suggests that IC is not a burden from patients' perspectives.22 Findings from our study suggest that IC is perceived as a burden by some, but not all, individuals who use it. We believe the challenge and opportunity for researchers and clinicians are to learn more about factors that enhance or hinder successful adaption to an IC program and to create interventions that enable individuals to integrate IC into the rhythm of their daily lives.
ACKNOWLEDGMENT
The authors acknowledge Gary Inglese, MBA, RN, for his instrumental contributions to the study design and intellectual contributions to the completion of the study and the manuscript. The authors also acknowledge the invaluable support of Nancy Neil, of Worldwide Clinical Trials, who provided professional medical writing and received remuneration for services.
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