Urinary tract infections and urinary bladder health experiences of persons with spinal cord injury in a Canadian province: A mixed methods study showcasing infection prevention as health inequity case

Abstract

Context/Objective

Urinary tract infections (UTIs) are one of the most frequent secondary complications among people with spinal cord injury (SCI). The prevention and management of UTIs is prioritized by stakeholders across Canada. The purpose of this study was to gain an in-depth understanding of the urinary bladder (bladder) management experiences of people with SCI in Alberta communities, especially how UTIs are experienced and managed.

Design

Convergent mixed methods parallel databases variant.

Setting

Communities across Alberta, Canada.

Participants

39 survey participants and 19 interview participants, all with SCI.

Methods

One-on-one phone semi-structured interviews analyzed using thematic analysis. Quantitative surveys included demographic, multichoice, and Likert Scale questions analyzed using descriptive analysis. Both methods explored people with SCI’s experiences with bladder management and UTIs. Qualitative and quantitative results were integrated through a comparison joint display table and meta-inferences.

Outcome Measures

Qualitative themes and descriptive statistics further integrated as mixed core-statements.

Results

Bladder routine is central to daily life and maintaining bladder health, avoiding UTIs, is the priority. Several health inequities are related to (1) financial barriers dictating how bladder is managed, (2) low perceived support for appropriate bladder management, (3) low healthcare access to appropriate UTI management and (4) low providers’ capacity to support bladder management and build trust with persons with SCI.

Conclusion

Action is required to address identified health inequities, including improvement of financial support, like appropriate catheter coverage, decrease barriers to access appropriate care and improvement of providers’ capacity to address SCI bladder care.

Introduction

Urinary tract infections (UTIs) are one of the most frequent secondary complications among people with spinal cord injuries (SCI) (1). UTIs negatively impact health, participation in and quality of life, and are associated with increased emergency department visits, longer hospital stays, sepsis and its adverse impact on UTI frequency and neuro-recovery (1, 2). Urinary bladder (bladder) health and the prevention and management of UTIs are the top two priorities among SCI stakeholders in Canadian contexts (3). Although qualitative studies investigating bladder and UTI experiences among people with SCI are limited (4, 5), findings describe important psychological (4–7) and social impacts of bladder management in this population (4, 5, 8). Daily bladder routines have been described as time-consuming (4, 7) and public washrooms are often physically inaccessible, making bladder management challenging (8, 9).

The SCI Rehabilitation Care High Performance Indicators (SCI-High) team, based in Ontario Canada, identified the importance of standards of care to prevent and treat UTIs (10). They proposed quality indicators to monitor the management of UTIs among people with SCI in inpatient rehabilitation and community settings, and this study used the definition of UTI from the SCI-High team (10). Two structural indicators are applied in the community (i.e. number of patients with a consistent healthcare provider and number of patients with a healthcare provider able to follow up urinalysis and urine culture results within 48–72 h). Nevertheless, there is no guidance on how to implement these indicators at community-level in the Alberta context, where there are specific challenges to monitor and follow-up patients with SCI.

In Alberta, a provincial group developed a SCI UTI Diagnosis Algorithm aiming to prevent UTI episodes and avoid unnecessary antibiotic prescription, mostly in hospital settings. It is unknown how this algorithm could help to improve bladder health for people with SCI living in the community. A peer group of people with SCI in Alberta are resolved to improve the bladder care and health of people with SCI in this province and approached the investigators of this study to promote more attention to this important issue. Through a series of conversations, we collectively identified that the first step to support the bladder health of community dwellers with SCI in Alberta was to understand their experience of bladder and UTI management.

The purpose of this study was then to gain an in-depth understanding of the bladder management and UTI experiences of people living with SCI across Alberta, intentionally exploring the quality indicators proposed by the SCI-High group, acknowledging the particularities of the social and health systems in Alberta. Our ultimate intention was to support further clinical and policy level actions that improve SCI bladder health in Alberta.

Materials and methods

Study design

We conducted a mixed methods study with the intention to obtain a thorough understanding of how bladder management and UTIs are experienced by some community dwellers with SCI in Alberta. This mixed methods study was guided by the following research questions:

1. How do Albertans with SCI manage their bladder routines, and how does their bladder routine impact their lives?

2. How do Albertans with SCI experience the identification and management of urinary tract infections?

3. How do Albertans with SCI experience health service utilization and navigation for bladder health needs, including urinary tract infections?

To answer these questions, we implemented a convergent mixed design with a parallel-databases variant, implying that qualitative (QUAL) and quantitative (QUAN) data collection and analysis occurred concurrently and separately (11) (see Fig. 1). Integration of QUAL and QUAN results occurred during the overall interpretation, so comparisons could be made, and a more holistic understanding of bladder and UTI experiences could be constructed. This design was chosen to enrich our understanding of bladder experiences through “enhancement and illumination of results from one method through comparison of results from the other method” (12).

Figure 1.

Study design – convergent mixed design with parallel-databases variant.

This study was designed within a social constructionist paradigm as described by Andrews (13). Situating the study within social constructionism supported the research team’s reflexive process into our previous experiences, understandings, and beliefs. We positioned ourselves as active members in the knowledge construction of SCI bladder management in Alberta. We utilized the checklist proposed by Creswell and Plano Clark (12) to ensure a complete and transparent report of the mixed methods work completed.

Participants

Ethics

All participants provided informed consent to participate in this project. This study received approval from the Human Research Ethics Boards (HREB) at the University of Alberta and University of Calgary (Ethics ID: Pro00108479, pSite-21-0014).

Eligibility criteria

English-speaking people with SCI lived experience and living in a community across Alberta.

Recruitment

Recruitment for one-on-one interviews was via word-of-mouth and social media posts from two community organizations that support people with SCI in the province (i.e. “Spinal Cord Injury Alberta” [SCI-AB] and “Wheels of Change”). An electronic survey was distributed across social media platforms by these organizations.

Interviews (QUAL)

An interview guide was developed through a participatory approach involving a diverse group of stakeholders, including people with SCI, Physiatrists, an Occupational Therapist, SCI Nurse Clinicians, and a research assistant. Together, the group defined questions to address the phenomenon of interest in a series of meetings. These questions were not formally tested. The interview guide was developed to investigate participants’ lived experiences with bladder management, including questions that explore the content of the SCI-High community quality indicators for UTI detection and management (see Appendix 1, Table 1). Interested individuals filled out an online intake survey, providing their name and contact information. The research assistant collected this information and contacted each person by phone, supplying those who were interested with a consent form by email and completing the consent process by phone. Interviews were conducted from January to February 2022 by a research assistant – who has experience conducting semi-structured interviews – over the phone and were audio-recorded. Interviews were transcribed using transcription services and uploaded to Dedoose mixed methods analysis software.

The three researchers involved in interview analysis were the research assistant (JB, who has a Bachelor's degree in Health Sciences with Honors and with qualitative research experience) and the two Principal Investigators (ALS, who is a Physiatrist with a PhD and qualitative research experience, and RC, who is a Physiatrist with qualitative research experience). JB reviewed a subset of randomly selected transcripts and developed a preliminary codebook. Then, ALS and JB applied this preliminary codebook to two transcripts and defined the final codebook, which was applied to all transcripts.

Transcripts were analyzed using thematic analysis as developed and described by Braun and Clarke (14, 15). Each code was reviewed by JB and summary statements were developed along with counter statements. Summary statements were then created and grouped to form broad statements describing groupings and relationships between groups. A preliminary thematic map was then designed to visualize relationships among summary statements. Connections between ideas were represented with arrows and articulated to identify the symbolized connections. Preliminary themes were then formed and refined. Lastly, final themes were identified and depicted in a final thematic map (see Appendix 2, Fig. 1).

Transcripts and coded excerpts were reviewed iteratively, and investigator triangulation occurred between JB, ALS, and RC on a weekly basis. Reflexivity (16) as a practice occurred throughout data collection and analysis in discussions among team members, positioning ourselves in our academic and clinical backgrounds and interrogating the interaction between our experiences, beliefs, and understandings and our results’ interpretations.

Surveys (QUAN)

Development

We collaboratively designed a survey with health providers and SCI community members to collect socio-demographic data including, age, sex, type of injury, level of injury, completeness of injury, occupation, employment status, level of education and geographical location. We included questions to measure specific UTI-related outcomes in the community setting. These outcomes included adapted items that represented the essential components of the community SCI-High UTI quality indicators developed by Craven et al. (10). We also included questions to explore aspects of bladder management, bladder infection prevalence, prevention, and management (see Appendix 1, Table 2). Besides the items to assess age, time since injury and the frequency of laboratory ordering and follow up for UTI diagnosis, all of which are ordinal in nature, all items were nominal; therefore, we decided that no formal reliability assessment was necessary before implementing the survey. The validity of the contents of the survey was confirmed by the diverse group of experts involved in the design of the survey.

Implementation

The survey was created using REDCAP licensed to the University of Alberta. The link to the survey was sent to a convenient sampling of individuals living with SCI in Alberta. This link was distributed by “SCI-AB” and “Wheels of Change” organizations, via e-mail. The survey was anonymous and informed-written consent was required before being able to complete the survey.

Analysis

Descriptive analyses were conducted to estimate means and standard deviations for continuous variables and frequencies for dichotomous and ordinal variables. Inferential analysis to compare groups was conducted using Chi-square tests, considering a probability value of 0.05 to determine statistical significance, for variables for which we had more than 5 cases per category.

Mixed methods analysis

Mixed methods analysis began by creating a joint display table to compare the QUAL themes with QUAN results. Five columns made up the table, including Theme Name, QUAL Findings, including key supporting statements and quotes, QUAN Findings, Meta-inferences, and Mixed Core-Statements. In weekly analysis meetings, our team discussed how QUAN and QUAL results were confirmed, disconfirmed, or enhanced by one another, constructing meta-inferences. Once all meta-inferences were determined, the team reviewed their meaning and constructed “core-statements”, which reflected novel understanding on bladder management and UTI experiences.

Results

Participant characteristics from both the interviews and surveys are shown in Table 1. Following is a general description of the study’s participants. Next we present the core statements constructed in our mixed analysis. The sequence of how these statements were constructed from QUAL and QUAN results (i.e. mixed analysis) is exemplified in a joint display table (see Table 2).

Table 1.

Participant demographics.

Interview Participants N = 19
Age
18–29 years	2 (11%)
30–39 years	5 (26%)
40–49 years	5 (26%)
50–59 years	1 (5%)
60+ years	6 (32%)
Sex
Female	6 (32%)
Male	13 (68%)
Other	0 (0%)
Time since injury
<1 year	0 (0%)
1–5 years	5 (26%)
5–10 years	3 (16%)
≥10 years	11 (58%)
Population Setting (size)
<50,000	4 (20%)
50,000–99,999	2 (11%)
100,000–1,000,000	2 (11%)
>1,000,000	11 (58%)
Level of Injury
Paraplegia	12 (63%)
Tetraplegia	6 (32%)
Unsure/Unknown	1 (5%)
Survey Participants N = 39
Age (missing = 2)
18–29 years	7 (19%)
30–39 years	10 (27%)
40–49 years	7 (19%)
50–59 years	7 (19%)
60+ years	6 (16%)
Sex (missing = 3)
Female	16 (43%)
Male	20 (57%)
Other	0 (0%)
Time since injury (missing = 2)
<1 year	2 (5%)
1–5 years	10 (27%)
5–10 years	9 (24%)
≥10 years	16 (43%)
Population Setting (size) (missing = 4)
<50,000	5 (14%)
50,000–99,999	2 (6%)
100,000–1,000,000	3 (9%)
>1,000,000	25 (71%)
Level of Injury (missing = 2)
Paraplegia	19 (51%)
Tetraplegia	17 (46%)
Unsure/Unknown	1 (3%)

Table 2.

Joint display of qualitative, quantitative, and mixed methods meta-inferences of functional domains.

Theme (qualitative)	Qualitative findings (See Appendix 3, Table 1 for quotes)	Quantitative results	Mixed methods meta-inferences	Mixed Core Statements
Bladder routine is central to daily life	Catheterization of any kind was more impactful than independent voiding, and intermittent catheters were related to more examples of stringent, organized, and controlling routine. Bladder routines were described as time- and energy-intensive, and financially burdensome. The time of day, place, people participants were with, and activities they were doing all factor into people’s bladder routine. Water consumption was one consideration for many people that was modified (to exert more control over their bladder routine) to meet people’s needs.	59% of respondents used intermittent catheterization. (n = 39, missing = 0) 92.3% use some product – indwelling, intermittent, condom catheter, incontinence product (n = 39, missing = 0)	Considering the experiences described in our qualitative findings that depict bladder as a central part of people’s day-to-day life and knowing that most survey respondents used IC (59%) and an even larger majority used some type of catheterization (92%), we can infer that the quant data expands our core concept. We have the specific lived experiences from a smaller number of interview participants, but knowing that the majority of our survey participants also use catheters amplifies the number of catheter-users with SCI across our province, among whom bladder is likely central to their daily life. What is to be central in one person's life includes: an important impact on people's life produced by burden over time, space (situation), energy expenditure, finances and fluid consumption behavior.	Bladder routine is central to daily life of most catheter-users
Bladder management is the priority	Participants prioritize maintaining good bladder health and integrity, to prevent the devastating impacts of UTIs and support bladder control in daily life.	94% of respondents experienced one UTI after discharge from hospital (n = 31, missing = 8)	Participants describe the serious impacts of UTIs to their daily lives, which provided context for their prioritization of managing their bladder health and preventing infections. Survey data supports our understanding that UTIs are a widespread and severe problem among people with SCI.	Avoiding UTIs is a central priority when implementing bladder management strategies.
Financial barriers dictate bladder management options	Access to bladder supplies – particularly catheters – is related to the circumstances of people’s injury. People who cannot afford to purchase enough catheters to use each one once reuse catheters. Reusing catheters was perceived to increase risk of UTIs by participants, and single-use hydrophilic catheters were perceived to reduce the risk of UTIs by users.	39% of IC users reused catheters (n = 39, missing = 0) 78% of people who reused catheters did so because of financial constraints (n = 9, missing = 0) 5% of respondents used hydrophilic catheters (n = 39, missing = 0)	Our quantitative data expand what we heard in interviews, that bladder supplies are costly and if people cannot afford to supplement the number of catheters that they receive coverage for by purchasing more, they are forced to reuse catheters. A small minority of survey respondents identified using hydrophilic catheters. This finding is somewhat divergent from our interview participants, as many individuals using IC identified using hydrophilic catheters at the time of the interview. This divergent finding could be due to two factors: (1) our respondent populations are highly heterogeneous, and we recruited many more people who use hydrophilic catheters in the interviews than the surveys (i.e. recruitment bias) survey respondents were unfamiliar with the options for that question and unfamiliar with the term hydrophilic catheter (therefore we may be underestimating the proportion of survey respondents using hydrophilics). Or the survey reflects the number of participants using hydrophilic catheters, which would expand on narratives in the interviews that hydrophilics are financially inaccessible for people with current public funding structures.	Financial barriers dictate bladder management options
Unrepresentative Priorities	People with SCI prioritize maintaining bladder health and preventing UTIs Government priorities are perceived to be downstream, focused on treating UTIs rather than prevention. People with SCI describe government-funded services as ineffective in meeting bladder needs. The limited supply of funded, plastic catheters is perceived to endanger people’s health by increasing their risk of UTIs - particularly those who reuse catheters but an increased risk for everyone who uses non-lubricated, plastic catheters.	5% of respondents used hydrophilic catheters (n = 39, missing = 0) 39% of IC users reused catheters (n = 39, missing = 0)	The survey data showing that a small minority of people reported using hydrophilic catheters and a much larger proportion of participants reusing catheters amplifies the calls from our interview participants for single-use catheters to be financially accessible to people with SCI who catheterize. The survey data triangulates what was heard in the interviews, by providing evidence that more than just our interview participants are experiencing the need to reuse catheters.	Low support to do appropriate bladder management. Maybe this concept is more about the quality indicators and lack of vision about overall bladder management and then grounds on psychosocial factors rather than only biomedical factors. This is a justification to take a SDH lens. Perceived low support for appropriate bladder supplies.
Spaces and services related to bladder management are often inaccessible	Medical services for UTI treatment represent barriers including inequitable triaging of patients: Another barrier is the physical inaccessibility of medical spaces: Another barrier is the lack of a streamlined process of receiving treatment for a UTI, from urine collection to obtaining an antibiotic:	46.42% of respondents did not have healthcare provider follow-up regarding urine culture within 72 h. (n = 39, missing = 0) 23% of respondents accessed emergency departments or walk-in clinics when they suspected a UTI. With new analysis this is 15% (n = 6) utilizing ED for UTI care. (n = 39, missing = 0)	The qualitative finding that medical services represent barriers for UTI treatment is confirmed/expanded by our understanding that nearly half of survey respondents lacked reasonable or appropriate health care for UTI diagnosis (per SCI-High QI) even though most of the survey responders had a health care provider. Additionally, the survey data showing nearly one fourth of respondents presented to walk-ins and emergency departments for UTI treatment confirms what we heard in interviews that when someone does not have access to a consistent and ongoing part of the medical system (a family doctor), they turn to accessing treatment through a more temporary service (walk in or emergency department). There are multiple forms of inaccessibility present in the medical system, that people with SCI navigate to gain diagnosis and treatment of UTIs. Barriers include gaps in the coordination of services (between labs, docs, pharmacies), lacking standards of care (such as 72hr follow-up), and physical inaccessibility of medical spaces. People with SCI make decisions to reduce the impact of these barriers, such as presenting at walk ins or emergency departments to receive timely care and improve their physical access to the services (vs going to multiple locations).	Low access to appropriate UTI management within primary/specialized care.
Healthcare providers	Encountering family physicians who may not have experience or a depth of knowledge about SCI-related health needs, participants described educating family doctors and other providers about their needs and how to address their needs in an appropriate manner. Healthcare services and providers can empower patients by being receptive to their self-advocacy but can also mitigate the need for patients to advocate for themselves by being an advocate on their behalf; listening to what people with lived experience need and working with them to reduce barriers to the necessary care.	46% of respondents did not have healthcare provider follow-up regarding urine culture within 72 h. (n = 28, missing = 11) 15% of respondents accessed emergency departments or walk-in clinics when they suspected a UTI. (n = 39, missing = 0)	The survey data represent experiences of below-standard care (according to the quality indicators from the Consortium project). Considering these gaps/breakdowns in service, our qualitative data expand our understanding of the statistical representations we see from the surveys. Although interview participants did note a need for self-advocacy in the medical system and the need to educate healthcare providers about their needs, some participants had experiences of successfully working through those challenges and obtaining appropriate and effective care from providers with whom they had developed relationships of trust and reciprocity. Therefore, the qualitative data can be used as a response or an enhancement of the quantitative data here.	Importance of building capacity and trust between people with SCI and providers for UTI management and control. Maybe broaden to bladder management. Frame around indicators to then comment that priorities are off in these indicators.

Participant overview

Of 21 individuals who expressed interest, 19 participated in the semi-structured interviews. Surveys were completed by 39 participants out of 45 people who were invited through the community organizations who collaborated in this project (response rate = 86%).

Core statement 1: bladder routine is central to daily life of most catheter-users

Bladder management was described as central to daily life by interview participants as bladder routines mediate nearly every aspect of their daily lives. Bladder routines have important impacts on time, spaces, situations, energy expenditure, finances, and fluid consumption behaviors, which result in social, financial, physical, and emotional ramifications as described in QUAL results (Appendix 3 – Table 1, Theme 1). Most participants (59%) used intermittent catheterization (IC) and most respondents (92%) used some type of catheterization (Appendix 3, Table 2). These QUAN results provide perspective on the magnitude of the challenging and persistent bladder experiences among people with SCI in Alberta. Catheterizing, particularly IC, becomes central to daily life for people with SCI and is common in the SCI population studied.

Core statement 2: avoiding UTIs and maintaining bladder health are priorities when implementing bladder management strategies

QUAL results underlined the serious impacts of UTIs on daily life (Appendix 3 – Table 1, Theme 2), which provided context for prioritization in managing bladder health and infection prevention. QUAN results supported the notion that UTIs are a widespread and a severe problem among people with SCI (Appendix 3, Table 2). A main reason why bladder management is central for a person's life is to prevent the devastating impacts of having a UTI taking control of their lives. The operationalization of how to prevent UTIs is highly linked with the previous concept on the centrality of bladder routine to persons’ lives.

Core statement 3: financial barriers dictate bladder management options

QUAN results showed that more than one-third of participants reported reusing intermittent catheters and the majority of those who reused did so due to financial constraints as they were required to pay for their catheters (Appendix 3, Table 2). QUAL results gave perspective to these findings by describing how reusing catheters and the circumstances leading to reusing them have physical and psychosocial consequences (Appendix 3 – Table 1, Theme 3).

A small minority of survey respondents (5%) identified using hydrophilic catheters (Appendix 3, Table 2). This finding somewhat disconfirms QUAL results, as many of the participants in the interviews (58%) reported using hydrophilic catheters. This divergence could be due to three factors: (1) the QUAL and QUAN participants were highly heterogeneous, and more hydrophilic-catheter users were recruited for the interviews, implying a “recruitment bias”, wherein people who use hydrophilic catheters were more likely to be interested in participating in interviews; (2) survey respondents were unfamiliar with the term “hydrophilic catheter”, which indicates an influence of the level of health literacy and engagement that participants’ may not have access to in their bladder management, meaning the proportion of survey respondents who used hydrophilic catheters could have been underestimated; (3) the QUAN results accurately reflect the number of participants using hydrophilic catheters in Alberta, which confirm QUAL findings that hydrophilic catheters are financially inaccessible for people relying on public funding support.

Core statement 4: perceived low financial public support for appropriate bladder management

QUAN results showed there is a small minority (5%) of people using hydrophilic catheters and a much larger proportion of people reusing catheters (39%) (Appendix 3, Table 2), amplifying QUAL results that call for single-use catheters to be financially accessible to people with SCI in Alberta. These findings confirm a health inequity that participants perceived – that current public funding for catheters is inadequate in meeting their bladder management needs (Appendix 3 – Table 1, Theme 4). Consequently, we identified a gap to access appropriate catheter supplies accompanied by a perception that public funding support is insufficient.

Core statement 5: low access to appropriate UTI care

Considering the SCI-High quality indicators (10) that represent standards of healthcare for UTI diagnosis in community, QUAN results showed that nearly half of respondents lacked healthcare provider follow-up with urine culture results within 72 h, despite most reported having a primary healthcare provider (Appendix 3, Table 2). This confirmed and expanded the QUAL results showing that medical services present barriers to good bladder care and UTI treatment, as participants described poor access to both medical services and spaces, creating challenges for receiving timely and appropriate UTI treatment (Appendix 3 – Table 1, Theme 5).

Additionally, QUAN results showed nearly one in four respondents presented to walk-in clinics and emergency departments for UTI treatment, despite most reported having a primary healthcare provider (Appendix 3, Table 2). This confirmed QUAL results describing that people use temporary health services if they do not have adequate access to consistent care by a family doctor, physiatrist, or urologist. QUAL results also expanded our understanding of this situation, wherein interview participants who described having a regular healthcare provider, identified difficulties booking appointments, developing trust and open relationships that led them to use emergency services, and finding the process of traveling between doctors’ offices, laboratory services, and pharmacies to be burdensome.

There were multiple forms of inaccessibility identified in the QUAL results, clearly representing health inequities in UTI management for this population. Barriers identified included (1) gaps in the coordination of service between doctors, labs, and pharmacies, (2) lacking standards of care, such as inadequate follow-up for urine cultures, and (3) physically inaccessible spaces for care. Consequently, many participants with SCI made decisions such as accessing walk-in clinics and emergency departments to address these barriers.

Core statement 6: capacity- and trust-building in patient-provider relationship for bladder management

QUAN results demonstrated below-standard care according to the SCI-High quality indicators, as a nearly half of participants missed follow-up with their urine cultures within 72 h, and a relatively low proportion of respondents sought care from their family doctor or nurse practitioner (46%), despite having reported a family doctor or nurse practitioner (94%) (Appendix 3, Table 2).

Moreover, QUAL results suggested a need for self-advocacy in the medical system and to educate healthcare providers about SCI bladder needs (Appendix 3 – Table 1, Theme 6). Some participants described successfully working through challenges in obtaining appropriate care for suspected UTIs, by developing relationships of trust, open communication, and reciprocity with their primary care providers (Appendix 3 – Table 1, Theme 6).

Discussion

Our findings demonstrated that bladder routine is central to daily life, avoiding UTIs and maintaining bladder health are priorities for people with SCI, and financial barriers as well as perceived low financial support from public funding impact bladder management and create inequities in health outcomes for people with SCI. Additionally, limited access to appropriate UTI care and the need for capacity and trust-building with healthcare providers in bladder management represent barriers to health equity in this context. Our integrated findings provide an in-depth understanding of bladder and UTI experiences among people living with SCI in Alberta.

We found that in contrast to the biomedical priorities of healthcare services and the perceived funding priorities of government services that pay more for treatment of UTIs than for providing supplies to prevent bladder complications, interview participants prioritized maintaining their bladder health. This divergence is one of the most important findings of this study, as it depicts a disconnect in perspectives among SCI stakeholders. Despite our study seeking to understand treatment and health-seeking behaviors during active UTIs, many interview participants focused on describing their daily routines and the steps they take to prevent UTIs. The six core-statements constructed in this study allowed for a better understanding of the multifaceted nature of bladder management, which provides context for interrogating the identified health inequities entrenched by publicly funded services in regard to SCI bladder care in Alberta.

Our findings showed that the most frequent and prioritized health inequity described in participants’ narratives was related with the financial barriers to obtain appropriate bladder supplies. This demonstrates health inequities for accessing essential bladder supplies, healthcare services, and public spaces (e.g. bathrooms) against people with SCI. The public-funded service that covers catheters in Alberta should work with people with SCI to improve coverage for single-use, hydrophilic catheters as the benefits of using these catheters are supported by the literature (17, 18) and was clearly perceived as a priority in this study.

Bladder management can be burdensome for people with SCI in spaces outside their homes, due to physical inaccessibility. Public washrooms are often challenging to access or are perceived as unclean and posing a risk of UTI by participants. In response, participants changed their water intake, chose to complete bladder routines in their private vehicles in lieu of public washrooms, or altogether avoided certain public spaces which seriously restricts their participation in community life and has also been reported in the literature (8, 9). Healthcare spaces such as doctors’ offices or laboratory and pharmacy services were also described as challenging to navigate. The nuanced intersections of inaccessibility of services and spaces wherein those services are offered and accessed during active UTIs is a novel finding to the authors’ knowledge. Participants consider these factors when navigating services, sometimes forcing them to make decisions that are important for healthcare providers to understand.

Our findings suggest that bladder management realities in the community do not always conform to perceived “best” standards. Health behaviors, including actions that people with lived experience take to support their bladders and prevent UTIs, are important for healthcare providers to be aware of. Understanding people’s perceptions of and attitudes toward antibiotic treatment versus natural remedies and the various behaviors people have toward their bladder health may impact what clinical guidance is accepted by patients and what will be followed or disregarded. Therefore, it may be fruitful for healthcare providers to inquire with patients about their health behaviors and impressions of their bladder health, to gain a better understanding of people’s contexts and their beliefs about their bladder function and management. Our findings also highlight opportunities for further patient and provider education about both UTI prevention, including the use of hydrophilic and single-use catheters, hand hygiene, fluid intake, catheter volumes, natural remedies, and boiling catheters, UTI diagnosis, and the importance of preventing inappropriate antibiotic prescription (10).

Incorporating peer support programs was valued by many of our interview participants. However, this finding did not have correspondence with our QUAN results and therefore must be considered in this context. Nonetheless, it is important to mention that peer support was explicitly proposed as an answer to the challenges faced accessing medical care, as peers are trusted sources of practical knowledge and are often more accessible than healthcare providers. Additionally, peers offer valuable psychosocial support through relatable experiences that providers may not be able to provide. Peers help to destigmatize bladder experiences, problem-solve, and troubleshoot bladder management strategies. The value of inpatient peer support for people with SCI is recognized in the literature (19) and further research on this at the community level should be conducted.

Limitations

Twenty-eight percent (n = 11) of survey participants did not completely respond to all questions, which could have affected the precision of our descriptive estimates, including over or underestimation. Triangulating our QUAN and QUAL results might have mitigated the impact of this limitation as our main interpretations are coming from the synthesis of both types of research. Another limitation is that most of our interview and survey participants were living in larger urban centers across Alberta, producing a rural and remote site under-representation, which affects our findings generalizability to rural contexts. Considering known health inequities faced by rural dwellers, it is then possible that the health inequities identified could be more pronounced in rural Alberta. Additionally, it is difficult to generalize to other healthcare jurisdictions nationally and internationally as Alberta is a unique province with centralized health authority and particular public funding structures to support bladder management. However, our core-statements resonate with existing literature so key takeaways may be transferable to other contexts.

Future directions

Clinicians need to pay more attention to the bladder management of people with SCI in Albertan communities, strengthening the patient-provider trust and relationships to achieve better bladder health, including prevention of bladder complications like UTIs. There is also a need to implement systemic changes within Alberta’s healthcare system to improve access for people with SCI to appropriate UTI care in the community, following the SCI-High quality indicators. Further research should be conducted to assess the experiences of bladder management and UTI prevention/management of individuals with SCI living in remote and rural areas in Alberta. Finally, there is a need to create policy changes within Alberta to assure equitable access to supplies and spaces that favor successful bladder management, decreasing risk for bladder complications.

Conclusions

• People with SCI in Alberta have different priorities than the healthcare system and government-funded equipment services in terms of bladder health. Understanding the role and impact of bladder management in people’s lives highlights their desire to prevent UTIs and maintain healthy bladders, whereas the healthcare system and funded services were perceived to prioritize reactionary care for UTIs and bladder disease.

• Health inequities impact people with SCI’s everyday life, through low access and support for adequate bladder management.

• System-based action is required to work with people with SCI in addressing the identified health inequities.

Disclaimer statements

Funding This work was supported by the Praxis Spinal Cord Institute under Grant Praxis Spinal Cord Institute Implementation and Evaluation Quality Care Consortium [(Praxis SCI-IEQCC2) # G-2021-32] .

Conflicts of interest No potential conflict of interest was reported by the author(s).

Supplemental data

Supplemental data for this article can be accessed online at https://doi.org/10.1080/10790268.2023.2287253.