Experiences of institutional betrayal and courage in chronic disease care of young women: A qualitative study

Abstract

Noncommunicable diseases (NCDs) are highly prevalent. People living with NCDs require ongoing management, resulting in frequent interactions within healthcare institutions. These interactions can lead to institutional betrayal, which is when institutions harm or fail to prevent harm to individuals that depend on them for care. Institutional courage, contrastingly, promotes accountability and transparency to individuals. This study explored these experiences in people with NCDs. Eleven university students who had an NCD and identified as women were interviewed. Responses were analyzed using Braun and Clarkes thematic analysis. Six themes were identified: systemic invalidation of patient experience, falling through the cracks, emotional burden and institutional barriers, adverse medical experiences, bound by the system, and relational repair. These themes highlight the prevalence of institutional betrayal amongst people with NCDs; however, acts of institutional courage enhanced relationships and trust. These findings demonstrate the need for healthcare institutions to advance patient-centered care and promote accountability.

Keywords

chronic disease healthcare institutional betrayal institutional courage patient experiences

Introduction

The prevalence rate of chronic disease is increasing rapidly worldwide (Hacker, 2024). Chronic diseases or noncommunicable diseases (NCDs) are medical conditions that last for at least 1 year (Centers for Disease Control and Prevention, 2022) and place substantial burden on individuals and healthcare systems. In 2021, 43 million deaths were attributed to NCDs, accounting for 75% of non-pandemic related deaths (World Health Organization, 2024). Notably, 53.8% of adults aged 18–35 have one or more chronic conditions, with the most common being obesity and depression (Watson et al., 2022). As the prevalence of NCDs rises, subsequent strains are put onto healthcare systems, since costs related to management of NCDs account for majority of overall healthcare spending (Centers for Disease Control and Prevention, 2024).

Adequate self-management and preventative care can potentially help alleviate these strains (Centers for Disease Control and Prevention, 2024). Self-management involves active participation and involvement from the patient, which could involve lifestyle changes, medication adherence, and management of the consequences of their disease (Holmen et al., 2020). This concept is central to a wide variety of NCD care trajectories (Allegrante et al., 2019) and requires sustained collaboration among patients, healthcare professionals, and institutions. Patients are often expected to take an active role in their own health; however, this may challenge the role of healthcare professionals, causing strain on their relationship (Alm Andreassen, 2013). Patient-centered care, conceptualized as patients actively involved in their care decisions, amplifies the need for patients and providers to work collaboratively (Lusk and Fater, 2013).

Both provider-level and system-level barriers can undermine patient-centered care, and in turn, effect self-management. Individuals with NCDs may experience instances that lead to feelings of betrayal, or direct experiences of harm in healthcare. Betrayal trauma theory suggests that when harm or a breach of trust occurs within relationships or by individuals that they depended on, the negative effects of trauma are amplified (Freyd et al., 2005). Both psychological and physical impacts of trauma are exacerbated in people who are chronically ill and experience betrayal (Freyd et al., 2005). Taking the betrayal trauma lens into consideration, those with NCDs rely on healthcare institutions and often encounter the medical system due to the nature and chronicity of their conditions.

Relatedly, institutional betrayal occurs when an institution fails to prevent harm or adequately respond to harm experienced by an individual they serve (Smith and Freyd, 2014). Although institutional betrayal is often defined at a system-level, in the context of healthcare, it can also be experienced at a patient-provider level. This is demonstrated in a qualitative study exploring experiences of institutional betrayal and patient dissatisfaction that found that several types of betrayal occur within healthcare (Tamaian et al., 2017). Patients reported that they experienced betrayal at the provider level (e.g. lack of information, poor communication) and the system level (e.g. shortage of doctors, lack of accountability). These experiences of institutional betrayal evoked negative emotional reactions and cognitions (Tamaian et al., 2017). Another study found that people with NCDs endorsed more experiences of betrayal and adverse medical events compared to those without NCDs (De Roo et al., 2025). This study also found that institutional betrayal was associated with increased symptoms of post-traumatic stress and anxiety (De Roo et al., 2025).

Recent work has identified institutional betrayal as a key mechanism shaping patients trust in healthcare systems and expectations for future interactions. This construct has been examined in individuals with Ehlers–Danlos Syndrome using the Betrayal, Indicator, Trauma Symptoms, Trust, Expectations, and Needs (BITTEN; Lewis et al., 2019) framework (Langhinrichsen-Rohling et al., 2021). The BITTEN framework emphasizes how past negative healthcare experiences, particularly institutional betrayal, shape patients ongoing needs and perceptions of care. Findings from this work indicate that institutional betrayal is common in this population and is associated with negative expectations for future healthcare, diminished trust in providers, anger, and trauma-related mental health symptoms such as anxiety (Langhinrichsen-Rohling et al., 2021).

The BITTEN framework has also been applied to emerging adults, particularly college students, to better understand healthcare-related attitudes and behaviors during this critical developmental period (Selwyn et al., 2021). The emerging adulthood and college population are entering an important developmental stage where they have increased autonomy and responsibility over one’s health. For example, emerging adults with inflammatory bowel disease demonstrate difficulties with noncompliance and self-management of their condition as they move toward adulthood (Trivedi and Keefer, 2015). In addition, institutional betrayal in healthcare appears to be prevalent among college students, with approximately 62% endorsing at least one healthcare-related betrayal experience in a recent study (Gigler et al., 2022). Across multiple studies using the BITTEN framework, institutional betrayal in emerging adults has been consistently linked to reduced trust in healthcare providers, negative expectations for future healthcare encounters, and greater healthcare avoidance (Gigler et al., 2022; Rastegar and Langhinrichsen-Rohling, 2024; Selwyn et al., 2021). Together, this growing body of literature highlights institutional betrayal as a central process influencing how emerging adults perceive, engage with, and ultimately utilize healthcare services.

Patients have identified strategies that healthcare systems and providers can implement to lessen the impact of negative healthcare experiences. Simply acknowledging long wait times and providing clear communication can support mental wellbeing (Gagliardi et al., 2021). In addition, patient-centered and trauma-informed care have been recognized to improve relationships between patients and healthcare providers and institutions (Lusk and Fater, 2013). Relatedly, institutional courage has been proposed to reduce the harm caused by institutional betrayal (Smidt et al., 2023). Institutional courage refers to an institution’s effort to protect and support individuals who use its services. Institutional courage requires more than just compliance with existing rules and procedures. It involves bearing witness, taking accountability, promoting transparency, and engaging in critical self-reflection (Freyd, 2018). These actions are taken at a systemic and individual level to increase justice and equity in the institution (Brewer, 2023). As a relatively new concept, the physical and psychological impacts of institutional courage are not yet fully known. One study that explored institutional courage in the workplace reported that 76% of employees had experienced such actions from their employers (Smidt et al., 2023). However, one study found that institutional courage is less common among those with an NCD compared to those living without one (De Roo et al., 2025). No known studies thus far have qualitatively examined experiences of institutional courage in this population. ‌‌

The objective of the current study was to qualitatively explore experiences of institutional betrayal and institutional courage in healthcare among individuals with NCDs. Several studies have examined institutional betrayal within healthcare settings and college student samples, highlighting emerging adulthood as a developmental period marked by increasing reliance on healthcare institutions during this transitional period. However, qualitative research examining both institutional betrayal and institutional courage across a broader range of NCDs remains limited. The current study addresses this gap by exploring lived healthcare experiences among emerging adults living with NCDs within the Canadian healthcare system, with attention to both harmful and reparative institutional and provider actions.

Methods

Participants

Participants were recruited from undergraduate, introductory-level psychology courses. For participation in this study, they gained additional course credit (i.e. 1%) to their final grade. To be eligible, participants had to be: (1) over 18 years of age, (2) reside in Canada, and (3) living with a chronic disease. Ethics approval for this study was granted on June 20th, 2024, under study number 364. Before completing the in-person interviews, participants filled out an online survey asking about eligibility, what chronic disease(s) they have and how long they had been diagnosed, gender, racial background, highest level of education completed, and annual income. Participants were presented with the consent form prior to the interview and were given a paper-copy after the interview was completed.

The sample consisted of 11 participants who all identified as women. Participants reported a range of chronic diseases, and six participants had multiple chronic diseases. The average number of years that participants were living with a chronic disease was 6 (SD = 4.73). Although the sample consisted of mostly young adults, over half reported managing multiple conditions. The NCDs reported included inflammatory, autoimmune, gynecological, respiratory, mental health, and connective-tissue conditions. These diagnoses can be multi-system, chronic, episodic, and require frequent and long-term healthcare and specialist management. Participants presented with a wide range of diagnoses; however, the focus of our analysis was not to identify condition-specific treatments or symptoms. The focus of the current study was to analyze shared healthcare experiences to identify themes and patterns across NCDs. See a full description of demographic characteristics in Table 1.

Table 1.

Demographics.

Variables		M (SD)
Age in years		20.3 (2.53)
		N
Gender
Woman		11
Ethnicity
Black		2
Indigenous		2
South Asian		1
White		5
Other		1
Chronic diseases	Description	N
Asthma	Chronic inflammation of the airways	4
Psoriatic arthritis	Chronic inflammation of the joints	1
Rheumatoid arthritis	Autoimmune disorder causing inflammation of the joints	1
Grave’s disease	Autoimmune disorder affecting the thyroid glands	1
Bipolar disorder	Chronic mental health condition	1
Psoriasis	Autoimmune disorder affecting the skin	1
Arthritis	Chronic inflammation of the joints	2
Lupus	Autoimmune disorder affecting tissue and organs	1
Polycystic ovary syndrome	Chronic endocrine and metabolic disorder	2
Endometriosis	Chronic gynecologic condition affecting the endometrial tissue	2
POTS	Autonomic nervous system disorder impacting heart rate	1
Ankylosing spondylitis	Inflammation of the joints in the spine	1
Ehlers-Danlos syndrome	Genetic condition affecting connective tissue	1
Celiac disease	Autoimmune disorder affecting the digestive tract	1
Rhinitis and sinusitis	Chronic inflammation affecting the nose and sinus cavities	1
Multiple diagnoses		6
		M (SD)
Years since diagnosis		6 (4.73)

Note. N = 11.

Interviews

Eleven semi-structured interviews were conducted in English. These were done one-on-one and in-person by a single interviewer between September and November 2024. These interviews were audio recorded and transcribed. A semi-structured interview guide was developed that aimed to explore participants’ experiences of institutional betrayal and courage in healthcare, related to their chronic disease. This interview guide included open-ended prompts that asked about: (1) experiences that led to mistrust in healthcare institutions/providers, (2) how healthcare institutions/provides prevented and responded to situations that led to mistrust, (3) how healthcare institutions/providers can rebuild trust, (4) communication with their healthcare providers, (5) training of healthcare providers, (6) positive experiences with healthcare institutions/providers, and (7) barriers within the larger healthcare system (e.g. long wait times). Interview questions were informed by constructs from a questionnaire assessing institutional betrayal in healthcare (i.e. Institutional Betrayal Questionnaire – Health; Smith, 2017) and a questionnaire assessing institutional courage in the workplace (Institutional Courage Questionnaire – Individual; Smidt et al., 2023) to align with the study’s theoretical framework. These were adapted for people with chronic diseases in relation to their healthcare experiences. ‌ These interviews were not administered as structured questionnaires, rather they ensured our interview questions reflected themes related to institutional betrayal and courage. The guide was flexible and facilitated discussion, allowed participants to elaborate freely, introduce new topics, and share experiences.

Analysis

Thematic analysis involves identifying themes and patterns amongst data (Braun and Clarke, 2006). The interviews were analyzed using Braun and Clarke’s (2006) six-phase guide to thematic analysis. This type of analysis is an inductive, or “bottom-up” strategy to derive codes and themes directly from the data in contrast to a pre-existing theoretical framework or codebook. This method of analysis was appropriate for this topic, as the inductive and data-driven nature allows an understanding of the participants’ unique experience and context.

Two independent coders familiarized themselves with the data through reading and re-reading of each transcript while taking preliminary notes about initial ideas. Initial codes were then brainstormed independently across the dataset. Transcripts were coded line-by-line, and segments of text were labeled using descriptive codes to identify recurring patterns in the data.

Codes were then organized into potential broader themes. Related codes were grouped together that reflected underlying patterns, and data extracts were gathered for these themes. Then, themes were reviewed and refined through iterative comparison with the code extracts and the full dataset. The first author re-read the coded data and assessed their coherency within a theme and distinctiveness from other themes. Themes were defined and named through collaborative discussion between the two coders. Each theme was defined in relation to its central concept to ensure it represented the underlying data. Discrepancies in coding or theme interpretation were resolved through discussion and consensus. Finally, the data was organized and reported into each theme using extracts from interviews.

Results

Theme 1: Systemic invalidation of patient experience

Systemic invalidation of patient experience emerged as a central theme across nearly all participant interviews. Participants frequently described experiencing a pervasive sense of being disregarded and dismissed during their healthcare encounters, often expressing frustration that their concerns were not being heard or taken seriously. This theme is further broken down into subthemes encompassing various ways in which participants felt dismissed.

Overreliance on test results

Participants expressed concerns regarding an emphasis on test results, which resulted in their lived experiences not being taken into consideration. One participant captured this experience well:

I think sometimes they’re more looking at the textbook than the patients in front of them. Everyone’s lupus is very different. It’s the disease of many faces. People don’t really know what’s going on with lupus. But when I say I’m passing out and I feel like shit, just because my labs are showing that it’s a little bit lower than the textbook norm. You can’t just send me away and say it’s looking good.

This comment highlights a broader pattern identified in many interviews: healthcare providers’ overreliance on lab results and standardized tests at the expense of considering patients lived experiences. This is especially relevant when patients with complex diagnoses, such as lupus, feel as though their provider is not considering their experience. When participants felt their symptoms did not align well with standardized tests, they were often dismissed rather than further investigated, making lived experiences merely secondary to standardized testing. Participants’ knowledge and experiences of their own bodies were devalued and were generally considered unreliable narrators of their experience. This reflects institutional ideals that value clinical norms and generally lack consideration for individual experience. This led to repeated efforts to have their symptoms be taken seriously, often requiring multiple appointments before any action was taken:

I’ve had to go back to my family doctor multiple times for the same thing until he’ll do something about it. The only one that really listens is when I go to the Rheumatologist. Other than that, it takes a few times to be listened to.

Several participants described similar instances of needing to advocate for themselves or “push” to be taken seriously. This not only delayed diagnosis and treatment but added additional emotional strain to their illness.

Identity based invalidation

Another aspect of this theme was identity-based dismissal where participants described dismissal as being compounded with certain parts of their identity. These experiences suggest that dismissal was not random but consistent among social identities embedded within clinical-decision making. Participants described a frequent pattern of gender-related dismissal:

Especially for women, because we’re just dismissed- yeah. We’re just told we’re crazy, it’s frustrating.

For many participants who identified as women, their physical symptoms were often reframed as psychological or exaggerated, reinforcing the pervasive stereotype that women are overly emotional, anxious, or unreliable. This contributes to a pattern of women’s health concerns being pathologized and minimized and women feeling a sense of isolation and mistrust in the healthcare system.

In addition to gender, other identity-based biases, including weight and age, also shaped participants’ experiences of dismissal. Several individuals spoke about how their weight influenced the way that clinicians viewed their symptoms:

And then they’re like, have you tried losing weight? And I’m like, you don’t think I’ve tried that? You think I don’t know that I am fat?

This participant reported that their concerns were frequently attributed to their weight above all else. They felt as though their health issues were repeatedly overlooked, with weight frequently assumed to be the primary or sole cause, regardless of the actual nature of their symptoms.

Participants also felt dismissed due to their age:

So yeah, it was very hard to get diagnosed in the first place. I don’t know if it had to do with me being younger too, but they were like you’re too young to get that. Yeah, it’s really invalidating.

As a result, some felt reluctant to seek care, anticipating judgment before they ever sought help. These biases represent broader assumptions that are prevalent in healthcare, in addition to persistent power-imbalances between patients and providers.

Theme 2: Falling through the cracks

A second major theme that emerged was the lack of continuity in care, which often manifested in fragmented or poorly coordinated treatment approaches. Participants shared that their care providers were not considering their full medical history or the complexity of their conditions. One participant recounted frequent emergency room (ER) visits for the same issue:

Had they looked in my chart, they would have seen that this was not the first time I had been in the ER for this. I had actually been in seven times in the past year for these flare ups.

Rather than representing a single oversight in care, this experience exemplifies fragmented care where encounters are treated as isolated events instead of ongoing illness management. This leaves patients largely responsible for keeping track of their care and describing their experiences repeatedly, adding additional burden to managing their chronic disease.

Another participant described poor communication across different healthcare professionals and departments as being part of the issue:

I went to my Rheumatologist, and he prescribed me a medication. . . but it’s also a medication that can ruin your vision. When I went to my eye doctor, he said “this is way too high, your Rheumatologist needs to lower it. . .” They kept going back and forth. . . And it was also an issue with the pharmacy making the dosage too high. There was no communication between the two specialists. . . And I’m like, okay, listen, and then there’s no communication between them, and it’s just so frustrating. But yeah, so many little things that aren’t coordinated how they should be for the best care.

Some other issues that were raised during the interviews included problems with receiving referrals to specialists or feeling as though they were constantly being passed along from one provider to another. This was exemplified by one participant’s experience of finding a specialist to care for her and the burden of receiving a referral:

I decided to call around the city to see if there were any Rheumatologists that knew what Ehlers Danlos was. And I found one. So, then I went back to my doctor saying, this Rheumatologist knows what Ehlers Danlos is, and they will help. Can you send me a referral? And only then did he send the referral. I had to do the work for him.

Here, traditional roles are reversed and instead of physicians guiding patients through the healthcare system, the participant was expected to navigate it independently. While the use of referrals is typically to aid in management of NCDs, they acted as an additional barrier to care. This signals a breakdown in institutional responsibility and leads to further burden on the patient.

Theme 3: Emotional burden and institutional barriers

Several participants expressed strong emotions during their interviews, especially when they reflected on their own personal experiences in the healthcare system. These emotional responses were direct reactions to systemic and structural barriers to care. Across interviews, frustration, anxiety, and dread emerged when participants encountered delays in care, issues with referrals, and provider turnover. These emotions reflected a growing sense that their needs were not being prioritized, and that accessing care required persistent effort from the patient. One participant described her experience in trying to obtain a referral to a different Rheumatologist:

Why can’t they share that (test results) with another Rheumatologist that I feel more comfortable with. . . cause it’s like, it’s individual doctors that I don’t feel trust in, like my Rheumatologist. I feel frustrated with my family doctor that she’s not going to give me a recommendation, or what’s it called? Referral.

This participant described feeling “stuck” with their care provider that they did not feel comfortable with, contributing to feelings of helplessness and frustration over their own care needs. Frustration stemmed not only from symptoms, but from navigating systems that were inflexible or unhelpful.

Delays in care and provider shortage both increased participants’ physical discomfort and emotional burden. One participant expressed several negative emotions related to navigating these barriers:

By the time you see them (the doctor), it’s (the medical concern) probably either going to be gone or worse. That’s really frustrating. And then once we get the doctors there, they always move out. So, then you have to get used to another doctor and explain everything again. That can be definitely exhausting. I dread seeing a new doctor. It is so stressful for me.

Over time, these disruptions in care resulted in emotional fatigue and anticipatory stress regarding appointments.

Theme 4: Adverse medical experiences

Many participants described detailed experiences of adverse medical events and instances where inadequate or negligent care led to actual harm, leading to feelings of institutional betrayal. In most participant accounts, the adverse medical event itself led to distress; however, how the institution responded to or prevented this event was also crucial. For example, one participant spoke about misdiagnosis being a major issue in their ability to receive care:

Before I was diagnosed with my Ehlers Danlos, because I was only diagnosed two years ago, I’ve had several misdiagnoses because it is a rare condition, unless you know about it. You will think it’s everything but that condition. . . I was just constantly misdiagnosed or told, ‘Oh, you just have a sprain, oh, you just have this.’

Not only did several misdiagnoses affect the participants’ physical health, but this experience reflects poor communication from providers, resulting in further mistrust after a preventable adverse event.

Another critical issue raised was the overprescribing of medication as a short-term solution, often without considering long-term impacts or coordinating care with other specialists:

They’re (specialists) not communicating with each other. I ended up being overdosed for three years. I don’t know how much that affected my health. I don’t feel like I trust them enough anymore to help me.

This quote highlights not only the physical impact of adverse medical experiences, but also the lingering anxiety, sense of helplessness, and feelings of betrayal that it creates. This experience was more than a prescribing error, but a direct reflection of the risks created by poor communication between providers. The lack of acknowledgment and prevention of clinical errors also led to feeling of betrayal and loss of trust in providers.

Theme 5: Bound by the system

This leads to Theme 5, which describes the broader institutional issues participants discussed throughout the interviews. These institutional issues greatly compounded their challenges, creating environments where well-meaning healthcare professionals were limited in their ability to provide adequate treatment. For instance, participants described broader institutional issues like long wait times that made accessing timely care difficult:

I’ve been in the ER waiting for over 24 hours sometimes, just in the waiting room. I didn’t even get a bed. And then by the time I got a bed, it took another day to see the doctor, so that was already two days I was in emergency.

Long wait times were talked about by all participants attempting to access a variety of specialists. These wait times greatly impacted participants’ physical and emotional state and were not solely inconveniences. They greatly altered participants’ health trajectories and prolonged distress.

And it took so long to get into the Gynecologist. Like they said, it was like an 18 month wait. So, for 18 months, I was going through Costco boxes of tampons, just trying to live my damn life.

These wait times force patients to carry the burden of their care until they can be seen and attempt to manage ongoing symptoms in the meantime. Other issues mentioned by participants were shortages of doctors, issues with medication coverage, delays in insurance approval, and outdated care models. These institutional challenges described often interacted with all the other themes, aggravating their effects.

Theme 6: Relational repair

While much of the interviews revolved around negative experiences in the healthcare system, participants also described instances where they felt heard and respected. These experiences were often the result of medical professionals who approached the participants with transparency and treated them as part of the treatment and decision-making process. For instance, one participant described how open communication from their Dermatologist made them feel better informed:

She (Dermatologist) mentioned all the different ways that the medication can affect me, and all the ways that it would positively affect me too. I felt a lot more educated with my Dermatologist. She’s explaining the medication and things that I have to be careful about.

This quote demonstrates the importance of open communication in empowering patients to feel part of their treatment process. While many participants highlighted several institutional and provider-level grievances, most also identified at least one physician or specialist who provided supportive care throughout their experience. Participants often described these instances as salient and sharply contrasted experiences that they were used to:

I could tell that they cared about me and went over all my results and tests. It was nice to have someone care and set out everything for you.

Another positive theme that came through in the interviews was the importance of strong, supportive relationships between patients and their doctors. While these experiences weren’t always the norm, when they did happen, they made a lasting impact. What stood out in these interactions was that patients felt listened to, validated, and genuinely cared for:

He has been one of the only doctors that listens, and I think at that appointment I ended up crying because I never felt so validated.

This quote captures how powerful it can be when a provider simply takes the time to listen and show kindness. For many participants, moments like this felt rare, but deeply meaningful. Ultimately, this theme highlights that even small actions, like validating a patient’s concerns, can go a long way in improving patient-physician relationships and mitigating experiences of institutional betrayal.

Discussion

This study found that almost all interviewees who were living with a NCD experienced institutional betrayal from the healthcare system. Despite this, many participants highlighted areas in which providers displayed courage or provided upstanding care. There were several recommendations for ways in which institutions can act in alliance with institutional courage and repair harm inflicted by healthcare systems and from specific providers. Several participants’ experiences reflected institutional betrayal (Smith and Freyd, 2014). They described instances of dismissal, poor communication, fragmented care, especially in scenarios where providers and systems had a duty to support patients and prevent harm. Contrastingly, some participants illustrated care experiences that reflected aspects of institutional courage (Freyd, 2018). When healthcare systems displayed shared decision-making, transparency, or validating patients’ emotions and experiences, these actions helped repair trust and create a sense of safety. In the themes, there is a distinction between institution-level betrayal and patient-provider betrayal. Many participants described institution-level frustration, such as long-wait times or fragmented care, while simultaneously describing collaborative and supportive relationships with their care provider. This is particularly relevant in the context of Canada’s healthcare system, where services are public, creating specific systemic barriers to care.

The first theme describes instances where participants felt dismissed by their healthcare provider or by the healthcare system in general. Aligning with findings from the current study, McManimen et al. (2019) found that patients physical symptoms were minimized. This led to unsatisfactory treatment recommendations, such as mental health referrals or physical activity, which left patients feeling dismissed and stigmatized (McManimen et al., 2019). Feelings of dismissal were amplified when participants felt that they were dismissed due to their gender. This is a common finding across different NCDs (McManimen et al., 2019; Samulowitz et al., 2018). Similarly, racial and ethnic discrimination has been identified in chronic disease care (Doshi et al., 2017) and may contribute to greater healthcare avoidance, particularly when coupled with experiences of healthcare-related institutional betrayal (Rastegar et al., 2025). Together, these findings highlight the importance of recognizing the impact of discrimination and prior negative healthcare experiences and amplify the need for trauma-informed and patient-centered approaches to care.

The second theme highlights the difficulties participants had with receiving continuous and coordinated care. Continuity of care is essential in adequate management of chronic conditions. Receiving continuous care is associated with positive clinical outcomes and increased trust in providers, adherence, and satisfaction with care (Alsaad et al., 2024). Despite its importance, participants experienced care as episodic and disconnected. Our findings align with a patient-based framework for continuity of care in people with diabetes (Naithani et al., 2006), which conceptualizes continuity as longitudinal, relational, flexible, and coordinated care. In the current study, participants desired having more frequent contact and check-ups with their care provider, demonstrating a lack of longitudinal care. Even when relationships existed, communication was described as rushed or inadequate, suggesting poor relational continuity. Flexible continuity, or changing services when deemed necessary, was important to participants in this study, yet this need was not consistently met. Finally, poor coordination between providers disrupted continuity (Naithani et al., 2006). These gaps demonstrate how systemic fragmentation can place burden onto patients to coordinate care. In Canada, it has been recommended that people with NCDs have a specialized team of healthcare providers and easy access to specialized care (Nasmith et al., 2010); however, this is not reflected in participants experiences.

Participants commonly experienced strong emotional reactions to their healthcare experiences, as highlighted by theme three, “emotional burden and institutional barriers.” These structural barriers that result in frustration and anxiety have several consequences for disease management and healthcare outcomes. Higher levels of healthcare frustration in women with NCDs is associated with an increased need for help in managing their health (Smith et al., 2013). Both healthcare frustration and low perceived physician support has important implications for self-management of NCDs (Smith et al., 2013). Additionally, negative healthcare experiences that cause distress and frustration can lead to healthcare avoidance (Rastegar and Langhinrichsen-Rohling, 2024). Avoidance in NCD care has important implications for morbidity, mortality, and financial costs (Byrne, 2008). Contrastingly, positive healthcare experiences, including supportive patient-provider communication, are associated with improved clinical and healthcare quality outcomes (Navarro et al., 2021). These included better self-reported mental and physical health and fewer emergency visits and hospital stays (Dy et al., 2016; Navarro et al., 2021). From this perspective, supportive care consistent with trauma-informed care principles may not only improve patient experience but also enhance continuity, adherence, and cost effectiveness.

The fourth theme, “adverse medical experiences,” demonstrates the negative medical events that lead to adverse physical and psychological outcomes. While adverse medical events are distinct from institutional betrayal (Smith, 2017) and produce different psychological outcomes (De Roo et al., 2025), in the current study participants reported that the medical errors led to feelings of mistrust and psychological harm. In addition, participants felt that institutions and providers did little to retribute their mistakes. In line with the current study, patients often seek full disclosure after an adverse medical event, which includes an apology, a thorough explanation, and steps taken to prevent recurrence (Manser and Staender, 2005). Unfortunately, lack of training, fear of consequences, institutional expectations and culture, and discomfort create systematic barriers for physicians to disclose to their patients after harm (Manser and Staender, 2005).

The fifth theme describes institutional grievances that participants experienced. Every participant in this study was impacted negatively by long wait times in both obtaining an appointment and waiting at the appointment itself, which often led to the use of emergency services. This is a widespread issue in Canada across various chronic conditions (Leddin et al., 2008; Liddy et al., 2024). These wait times have consequences for patients’ quality of life including exacerbating physical complaints, feeling misunderstood by healthcare providers, frustration, and hopelessness (Liddy et al., 2024). Contrastingly, continuous treatment can improve patient satisfaction and quality of NCD care (Ofman et al., 2004). Additionally, patients often turn to other healthcare providers outside of their primary care and specialist provider to receive care (Liddy et al., 2024). This may have implications for patients’ level of trust and disengagement with healthcare systems; both consequences of institutional betrayal (Smith, 2017). Tamaian et al. (2017) found similar results. Time constraints and shortage of doctors were reported as systematic barriers to care. These barriers reflect the nature of how healthcare is provided in Canada, in that services are public and universal, causing unique challenges not perhaps relevant in private healthcare services. These obstacles in the healthcare system led participants to self-advocate for their care. This aligns with previous research showing that patients feel they must follow-up several times before receiving a referral (Liddy et al., 2024). Further obstacles may present if patients are not aware of the availability of specialists, do not have a family doctor to refer them, and cannot self-advocate (Mathias et al., 2018).

Theme six, “relational repair,” highlights positive experiences that participants had with their healthcare provider. Many participants valued when their provider was transparent about their treatment plan, which is essential for institutions to display courage (Freyd, 2018). Additionally, patients appreciated shared decision making with their provider. Research shows that this is an essential element to patient care of individuals with NCDs. Existing theoretical frameworks for shared decision making often focus on acute conditions (Charles et al., 1999); however, shared decision making for chronic conditions is often ongoing and imperative to clinical outcomes and disease management (Montori et al., 2006). It is important that people with NCDs are involved in decisions about their care, which involves establishing relationships with a holistic team of care providers, sharing information appropriately, reaching an informed decision, and implementing the decisions as a team (Montori et al., 2006). As echoed in this study’s results, communication is essential in supporting patient-centered care. In addition, adequate communication is associated with increased patient satisfaction (Náfrádi et al., 2018).

This theme also focused on direct interactions between patients and their care providers. These small, but meaningful acts demonstrate ways that providers can display courage. Relatedly, moral courage is an ethical value in medicine that encourages acts of courage. Both moral courage and institutional courage aim to act accordingly to ethical principles even when doing so requires additional effort and may go against the usual protocols (Shelp, 1984). The professional culture in medicine often presents challenges for providers to display moral courage, as demands for medical care hinders physicians’ ability to show compassionate engagement (Shanafelt et al., 2019). The results of this study reflect this. Participants reported several experiences of being invalidated by their provider and not feeling listened to. When physicians did take time to validate and listen to patients, these acts were seen as powerful acts of courage that challenge the frequent patterns of neglect and minimization that lead to institutional betrayal. While participants described positive experiences regarding provider-level courage (e.g. validating patients, active listening), fewer examples reflected courage at the institutional level. This has important implications for improving NCD care, in that provider-level behaviors should be addressed through training, supervision, and professional education (Patel and Wyse, 2026). “Relational repair” reflects the interactive nature of institutional-level betrayal and patient-provider betrayal. Positive and collaborative relationships seemed to buffer against institutional complaints, demonstrating that acts of compassion and understanding from providers may mitigate experiences of betrayal.

A strength of the current study is that it qualitatively assessed institutional courage in individuals with NCDs. This makes a unique contribution to the literature by exploring institutional courage in medical settings. The findings of this study also align with and expands on previous findings of institutional betrayal and dissatisfaction in the Canadian healthcare system (Tamaian et al., 2017). The nature of semi-structured interviews allows us to hear participants’ experiences in their own words, in addition to using inductive thematic analysis to ensure themes emerge directly from participant experience. Additionally, our sample was heterogeneous, in that it included participants with varying NCDs and several living with multiple NCDs. However, this also limits our findings from capturing specific illness-trajectories and experiences that differ across chronic disease diagnoses. Future research examining how these systemic barriers present within specific diagnoses would be valuable to further our understanding of this topic.

There are several notable limitations. First, our sample consisted exclusively of individuals who identified as women and attended university. University-based samples may introduce issues with generalizability, reliability, and validity (Peterson and Merunka, 2014). Future research should include more diverse samples to allow findings to be generalized to different demographic groups. Nevertheless, focusing on emerging adults provides insight into a developmental period characterized by new and increased responsibility in self-management of NCDs, which has been identified as particularly relevant in existing research. Second, all participants were drawn from a single geographic region, which may limit the applicability of the results to other regions or healthcare systems where experiences could differ. Third, participants’ accounts of their healthcare experiences were based on memory and recall. Since emotionally salient events are more likely to be remembered (Kensinger, 2004), positive or neutral experiences may have been underreported. This study also focused solely on the patient’s perspective. Incorporating the viewpoints of physicians or healthcare administrators in future research could provide a more comprehensive understanding of barriers to service provision. Finally, this study examined participants’ experiences at a single point in time, and future research may be interested in following participants who live with NCDs longitudinally. This will facilitate a better understanding of how institutional betrayal and courage impact trust in healthcare, mental health outcomes, engagement with healthcare, and clinical care outcomes.

Conclusion and implications

The current study confirms and expands on qualitative findings of institutional betrayal in healthcare among people with NCDs. While there were relatively less themes that reflected institutional courage in this study, participants identified positive aspects of their relationship with healthcare providers. Taken together, these findings have important implication for self-management for NCDs, which requires collaboration between patient and care providers (Lusk and Fater, 2013). They highlight the gap between idealized patient-centered and collaborative care, and patient experiences. Themes related to experiences of betrayal hindered patients’ ability to self-manage and show a lack of patient-centeredness in chronic disease care. In addition, participants highlighted experiences of identity-based discrimination, and this in turn increases institutional betrayal and mistrust (Rastegar et al., 2025). Through the BITTEN lens (Lewis et al., 2019), these experiences have the potential to lead to healthcare avoidance (Rastegar et al., 2025; Rastegar and Langhinrichsen-Rohling, 2024). Healthcare avoidance is associated with illness severity, increased mortality, and health disparities (Byrne, 2008), making it a significant public health concern, especially in younger adults with NCDs (Trivedi and Keefer, 2015). Participants in this study frequently highlighted the need for more integrative and patient-centered care for chronic disease management. Trauma-informed training for physicians may be important to improve communication and outcomes for patients. Nevertheless, this study’s findings demonstrate that small acts of compassion and validating patients can potentially mitigate negative experiences or feelings of betrayal in healthcare. Future research should explore the protective relationship of institutional courage within healthcare experiences. This study highlights that healthcare providers and institutions can perpetuate and cause harm to patients with NCDs, but that acts of institutional courage can rebuild trust, improve relationships, and potentially lead to better and more effective care for this population.

Footnotes

ORCID iD

Briana De Roo

Ethical considerations

Ethics approval for this study was granted by the University of Regina Ethics Review Board on June 20th, 2024, under study number 364.

Consent to participate

All participants provided informed consent prior to interviews. Participants provided consent for the study’s findings to be published.

Consent for publication

Consent for publication is not applicable to this article as it does not contain any identifiable data.

Author contributions

BD was responsible for study conceptualization, methodology, formal analysis, investigation, data curation, and writing. LU was responsible for formal analysis and writing. NG was responsible for conceptualization, methodology, review, editing, and supervision.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

The dataset generated and analyzed during the current study is not publicly available but is available from the corresponding author on reasonable request.*

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