Introduction

Abnormal bladder function is common after spinal cord injury (SCI), even among those with substantial motor recovery [1, 2]. A recent systematic review concluded that bladder/bowel function is one of the top three priorities for functional recovery after SCI [3]. There are practical and psychosocial reasons for this. For example, people living with SCI have bladder dysfunction requiring a median of 4 extra hours of time per week, and abnormal bladder function has been shown to have the second highest impact on social activities even years after the injury [4, 5]. In terms of related medical complications, urinary tract infections [6, 7] and urinary incontinence [8, 9] are common bladder-related complications after SCI.

Bladder management after SCI generally involves either clean intermittent catheters (CIC), indwelling catheters, or spontaneously voiding (which often includes reflexive voiding, abdominal Credé pressure, and in some cases condom catheters); a small number of people have a surgical procedure to create a urinary diversion [10]. Catheters are common after SCI and they have been shown to have a negative impact on quality of life (QOL) [8, 11], and while there has been a lot of research examining medical complications associated with different forms of bladder management, there has been limited work examining the psychological and social impacts of bladder management after SCI [12,13,14]. Limitations of the prior literature on this topic include reduced generalisability due to the inclusions of different etiology’s of bladder dysfunction into a single study, incomplete assessment of the interplay between psychosocial and medical factors associated with bladder management, and lack of a representative sampling of genders and functional status.

Our objective was to gain a better understanding of the relevant psychosocial aspects of bladder management and urinary catheters among a community-dwelling sampling of people living with a SCI.

Methods

This was a multicentre, prospective, qualitative research study conducted at three tertiary referral centres (Western University, University of Utah, and Carolina’s Rehabilitation Centre). Two members of our research team have a SCI, and participated in the study design and analysis. Ethics approval (REB #111045) was granted at each institution, and all participants provided voluntary consent to participate. We used the guidelines for qualitative research for our reporting (Appendix 1) [15].

Approach

Qualitative methods were used given their ability to describe and interpret complex, inter-related psychosocial parameters in a way that is not possible with mathematic approaches [16]. We used a semi-structured, open ended interview technique either in an individual setting or in a small group setting (3–5 participants) to allow participants to describe relevant issues related to psychosocial aspects of bladder management. These questions were created by the research team, (which included team members with SCI). Pre-interview instructions informed participants they were being audiotaped, the purpose of the research, and asked them to describe their feelings, thoughts and experiences related to their bladder management, and reassured them that there were no right or wrong answers. Interviews or small group sessions were done in private, non-clinical spaces. Interview questions that were used to start the conservation are listed in Table 1, and the participants were allowed to freely move between topics or examples as they wished. People were able to raise topics that were relevant to them and may not have been considered by the research team. Prompts such as “tell me more” or “can you provide some examples” were used to continue the interview.

Table 1 Open-ended prompts for interviews.
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Interviews were carried out by different research staff at each of the three institutions between June and September 2018. Interviews were led by research personnel who received didactic training on qualitative research techniques, and all participated in a common training and orientation session prior to the start of the interviews to ensure consistency in basic methodology. None of the interviewers had a clinical or personal relationship with the participants. Once the open-ended questions were complete, participants were asked to review some additional material and comment on their impressions of the concepts and connotations that the questions brought to mind. These materials included a card deck containing various emotions, and pictures and descriptions of different ways of managing bladder function after SCI. Participants were asked to describe their experiences with those emotions or bladder management methods in relation to their psychosocial priorities. We piloted this approach in two people with SCI and asked for feedback throughout the interview process; some minor modifications to the approach were made in response to their feedback. Interviews and focus groups lasted ~1–2 h.

Participants

We used purposive sampling to select adults who had suffered a traumatic or non-traumatic SCI at least 6 months prior. Recruitment was done face-to-face, or over the telephone. We wanted to ensure there was adequate representation from both men and women, and those with tetraplegia and paraplegia. We excluded people who could not communicate in English, and those with a non-SCI related neurologic disease (such as spina bifida or multiple sclerosis). We identified people from the tertiary neuro-urology practises of the three participating clinicians. Our intended sample size was ~30 participants (in keeping with expert recommendations for qualitative study [17]), and this number was confirmed during the study by determining when saturation of concepts occurred (meaning that additional information was fitting into or duplicating our existing data). Demographic information (such as age, gender, education, level and completeness of SCI, etiology of SCI, and prior methods of bladder management) was gathered from participants to ensure we had a representative sample. Participants were provided with a $100 honorarium for their time.

Analysis

An interpretative phenomenological approach was used, and data analysis was done throughout the data collection process to assess for saturation. This methodology allowed us to subjectively understand the collected data by classifying, coding and understanding underlying patterns. All interviews were audio recorded and transcribed verbatim. Transcripts were imported into NVivo (version 16, QSR International) and two people read and reread the transcripts, and then independently coded domains and illustrative quotes using the NVivo software. Relevant psychosocial coding domains were defined using the transcripts, and then refined as necessary throughout the study (Appendix 2). We used prior work in the area of psychosocial issues after SCI to help inform our interpretation; many of the themes we identified have been identified in people after SCI [18]. The domains were continually reviewed by comparing the illustrative quotes with those of other domains and evaluating them with the research team. The same material in the transcript could be coded into multiple domains if it was felt to represent more than one psychosocial domain. Two additional coding systems were developed to identify references to specific bladder management techniques (indwelling catheter or CIC), and specific medical issues related to bladder management (infections, incontinence, and bladder medications). We conducted a debrief session with four study participants at the end of the analysis to review and confirm our findings, and to ensure they appeared credible. Demographics are summarised as medians, and interquartile ranges (IQR). To maximise the robustness of our analysis we included the following behaviours in our analysis: data credibility were addressed by conducting the analysis over several months, having a group of participants review our findings, and including people with SCI in our research team. The generalisability of our results can be assessed from the demographic details and assessment of our study process was maximised by adhering to reporting standards. The reliability of our data were maintained by verbatim transcription and two coders.

Results

Of the 40 people approached, 34 participated in the study (Table 2). Most were male (21/34, 62%), and most had a traumatic etiology (29/34, 85%); the median age was 49 (IQR 40–62) years. Median duration of SCI was 20 years, (IQR 9–31) and there was good representation of varying SCI lesions. There were 7 female participants with tetraplegia, 6 females with paraplegia, 12 males with tetraplegia, and 9 males with paraplegia. Most used intermittent catheters (23/34, 67%), and a smaller number used indwelling catheters (6/34, 18%); several people used combinations of bladder management methods.

Table 2 Characteristics of people with SCI involved in the study.
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Using our interpretive approach, the dominant psychosocial domains were anxiety, loss of control, embarrassment, confidence, and independence/planning (Appendix 1); the dominant medical themes were infections, incontinence, and use of bladder medications. We examined the word frequencies and their context by examining the adjacent-text of words relevant to our psychosocial domains (examples in Appendixes 3, 4). We identified some common expressions of setbacks (such as frustration, problems, isolation, anxiety, concern, depression, and embarrassment), as well as successes (control, independence, confidence, family) throughout the discussions. A sample of relevant interview quotes representing the psychosocial domains are listed in Appendix 5.

Anxiety

The root cause of anxiety was summarised by one participant: “You are just very, very vulnerable and it’s scary to be that vulnerable” (A8). Bladder-related anxiety was felt on two main fronts: medical and psychosocial. Participants worried about UTIs, and were made more anxious by not knowing when they might occur or how severe they might be. Participants worried about risks from improper catheterisation and about reactions to medications. Anxiety was also felt around visits to the emergency room or need for surgeries. On the psychosocial front, participants felt helpless in situations where incontinence occurred; participants specifically highlighted embarrassment from the smell and/or sight of urine, and the lack of bathroom availability. Anxiety was often associated with public places that had poor wheelchair access to washrooms, especially public events and airplanes, but participants also felt anxiety in more private settings with friends. Uncertainty about the future caused anxiety, whether specific worries about having to switch to a suprapubic catheter, or more general worries such as “I have worries about what the future looks like for my bladder and whether or not I’ll be able to maintain this [current bladder management] for much longer” (A1). Participant anxiety was also heightened by the lack of sensation due to their SCI, because they could not feel when a dangerous or embarrassing situation was developing. The degree and frequency of anxiety varied amongst participants. For some, anxiety was connected only to specific situations. For others, anxiety was always present: “I can never not think about my bladder…it’s frustrating cause I have to think about it constantly, its constantly in the back of my head” (A1). Anxiety sometimes lessened over time as routines were established, but not always.

Loss of control

The most common topics discussed in relation to loss of control related to the obvious unpredictability of bladder function after SCI. While most people enjoyed complete control over this prior to the SCI, the randomness and evolving bladder function was described as a factor that was always simmering under the surface; one participant stated “I think the bladder’s always controlled me and I think that the bladder controls everybody with SCI. You live by the bladder” (C14). This sentiment cut across many of the identified domains. Some people emphasised the things that they did have control of, such as fluid intake and catheterisations, to contrast the uncontrollable; others highlighted how medications or surgeries helped them regain control. Unexpected technical trouble with intermittent or indwelling catheters were also commonly cited causes of loss of control.

Embarrassment

This domain demonstrated overlap with other domains such as loss of control and anxiety, however it had some distinctive characteristics. Embarrassment was often reported in the context of inadvertent exposure of their catheter or incontinence episodes to others. This was often considered a direct extension of their private bodily functions, for example one person stated: “I started off with a large leg bag, and well it was too big. It would hang out your shorts leg for everyone to see and to me that was almost the same as somebody seeing my penis” (C12). Incontinence in public was the most often cited cause of embarrassment, however, most participants reported a decrease in sensitivity to this over time: “you get used to it and then every once and a while you will think about it again” (B5). Many people referenced the consequences of incontinence in the context of normal societal expectations of incontinence: “your grandson is not around and you’re the only one that needs a diaper change” (A7). A smaller proportion of people reported coming to terms with embarrassment around bladder function: “I gotta go pee so [the catheter is] just something that comes out of me now so that part I’ve just made part of me instead of it being an embarrassment” (A2). Some people had adapted to these situations, and as one participant stated “it’s gonna be embarrassing and you just gotta suck it up and that’s about all I can do, accept it” (C11). For others, this seemed to take over their lives: “I think that the biggest thing about being wet and having any kind of medical device showing was a direct factor to my self-esteem; if my self-esteem and confidence wasn’t there then I’m not leaving the house” (C12).

Confidence

Many participants talked about various ways their confidence with their bladder function had improved over time. In some cases, this was due to the addition of medications, intravesical botulinum toxin, or surgical interventions. People using indwelling catheters often referenced improved confidence as one of the benefits of using an indwelling catheter: “the confidence I have with the Foley outweighs the self-consciousness about the bag” (C5). Some CIC users contrasted this concept by reporting their confidence was negatively impacted by bladder management. For example, many had problems accessing washroom facilities outside of their own home: “when I’m around people that I don’t know or in a setting where I’m at someone’s house I am not confident I can get in their bathroom” (C8).

Independence/planning

The focus of most participants involved bladder management changes that they felt had a positive impact on their independence. Most of the time this related to the use of intravesical botulinum toxin in CIC users, or using a suprapubic catheter after struggling with CIC or incontinence for a period of time. People were often proud of the workarounds or skills they acquired in order to become more independent. Planning and lack of independence were often highlighted when a person had to travel. Several people described the steps they took to prepare for this, including the essential supplies they needed: “I carry a little pack with me now that has a change of clothes, undies, wipes, a pair leggings and it’s all discreetly packed down here-it’s ready to go” (C14). Fluid intake and scheduled bladder management were also frequently cited examples of the bladder related activities that required specific planning: “I can’t go about what I would consider a normal activity without having to take extra steps in order [to get] through the day” (A7).

Intersection of psychosocial attributes and medical complications and bladder management

The overlap between the primary psychosocial domains and the secondary coding matrix of bladder complications was examined to show how psychosocial domains intersected with different bladder-related complications (Fig. 1). It is important to note that not all participants endorsed each of the domains. The intersection between the primary psychosocial domains and the two different catheter-based methods of bladder management is shown in Table 3. Indwelling catheters were generally identified as improving a person’s independence, however they were also associated with social stigma and fear. CIC was associated with improved confidence in some people, however this often coexisted with negative feelings due to the time required to carry it out and the associated loss of independence and need for planning. We also evaluated the coding matrices based on gender. Incontinence tended to be associated with anxiety in women, whereas in men it was associated with embarrassment. Both men and women reported similar anxiety around urinary infections.

Fig. 1: Intersection of psychosocial domains and bladder complications.
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The graph below shows the number of participants that expressed one of the psychosocial domains in relation to one of three different bladder-related complications: incontinence, urinary infections, or use of bladder medications. There were a high number of participants who expressed embarrassment in relation to incontinence, and a high number who expressed loss of control or anxiety in relation to urinary infections.

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Table 3 Psychosocial aspects of the two most common catheter-based bladder management strategies.
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Discussion

There is considerable complexity and profound variability in the psychosocial challenges and priorities for people after SCI [18]. We identified several general topics directly related to bladder management. Some of these interconnected across different psychosocial domains, such as ability to access public facilities for bladder management, reduced independence and spontaneity for travelling, and medical complications such as incontinence and urinary infections. The psychosocial domains of anxiety, loss of control, and embarrassment all contained references to the negative aspects of incontinence, and many participants provided examples of how their bladder management strategy has failed them and resulted in a negative impact on their QOL. While many participants reported accepting these changes over time, some also described the continued struggle and impact that these changes had on their day to day life. Likely some of this variability is explained by a complex interplay among various psychological factors, and adaptative coping mechanisms [19]. In general, the confidence domain represented the positive contrast of the anxiety and embarrassment domains.

In general, our results are consistent with prior qualitative studies that have examined bladder management, albeit in the context of more diverse patient populations. Among people using CIC, common themes that impact psychosocial function include a lack of appropriate public facilities (one of the most common barriers), difficulties performing CIC because of spasticity or poor hand function, the time required for positioning and setup for CIC, and the cost of the supplies [20, 21]. Medical complications which have been described in the context of CIC are urinary tract infections, bleeding, difficulty passing the catheter, the unpredictable requirement for catheterisation, and the risk of incontinence between catheterisations [20]. A large group of people with SCI from Turkey who used CIC reported that their initial fears included being dependent on catheters for the rest of their life, embarrassment and the risk of inadvertent self-harm (through infections, bleeding or pain) [22]. Two studies conducted in-depth interviews with people with a SCI who were using CIC and identified domains of anxiety, self-image, normalisation, independence and control [23, 24]. These domains were prominent in our study as well, with self-image and normalisation represented in the context of control and confidence.

In previous studies, the perceived benefits of an indwelling catheter from a patient perspective include preventing urinary incontinence, simplifying life, and improving independence [25, 26]; this is quite similar to what we found. Limitations of indwelling catheters that have been reported in the literature include “making adjustments” (such as types of clothing which allow concealment, how to manage the catheter at nighttime, and problem solving day-to-day inconveniences), “managing away from home” (how to drain the bag in public washrooms, how to know when it is full), and adjusting to social interactions and intimacy with the indwelling catheter [27]. Patients report alternating between good days (when the catheter fades into the background and becomes “a part of them”), and bad days (when they are confronted with the perceived stigma, shame, and loss of dignity of a urinary bag, or they are frustrated by catheter complications) [25, 26].

Our work can help physicians empathise, support and trouble-shoot bladder management problems through a psychosocial lens. Counselling people with SCI about the often difficult to interpret signs and symptoms of a urinary tract infection may help mitigate anxiety. Aggressive treatment of urinary incontinence may help address the associated  feelings of embarrassment and loss of control, and may result in improvements in confidence and independence. When reviewing options for bladder management, shared decision making is generally recognised as an important paradigm in medicine that places the person with SCI in the position of primary decision maker [28]. Healthcare professionals should be cognisant of the different aspects of bladder management from both a medical and psychosocial perspective, and consider both of these perspectives when engaging in discussions around bladder management. Psychosocial desires, such as increased independence, may explain the paradoxical migration over time of people with SCI from CIC to indwelling catheters, despite the negative medical risks associated with their use [29,30,31,32]. Using the lived experiences and perceptions of the people who participated in this study may improve the physician-patient dialogue and empower the person with SCI to make a more informed bladder management decision. In addition, the involvement of mental health experts in the adjustment to a new way of bladder management after SCI may be helpful. Programs that help reinforce management strategies for bladder dysfunction after SCI may also be helpful, however the adherence and utilisation over time may be limited [33].

Limitations of our research include the fact that qualitative data interpretation is inherently subjective, and it is possible to come up with different yet equally valid interpretations of our results. There may be a self-selection bias for participants, and those who were recruited may not represent the general SCI community. Our participants came from North America, which has unique cultural and socioeconomic factors which may not be generalisable to all countries. While we sought to minimise the risk of researcher bias with the inclusion of people living with SCI, it is possible that there were unrecognised biases that impacted the interpretation of the data.

Future directions of this work include exploring these different psychosocial aspects of bladder management in a large group of people living with SCI. We will correlate these findings with various demographics, injury characteristics, personality traits, and bladder management methods using a conjoint analysis experiment.

Conclusions

Bladder management has a considerable and multifaceted interaction with several psychosocial domains after SCI. Anxiety, loss of control, and embarrassment are impacted by urinary tract infections, incontinence, and the visibility of urinary devices. Independence and planning, and confidence are often positively impacted by urologic medications, procedures and surgery. Bladder management with an indwelling catheter is often reported to improve independence, while CIC users report planning, accessibility and time requirements as common limitations. These issues must be weighed against the increased medical complications associated with indwelling catheters. The healthcare provider’s understanding of psychosocial issues regarding bladder management should be part of the shared decision-making process for people living with SCI.