Moral distress in pediatric complex care coordinators: a reflexive thematic analysis

Abstract

Background

Moral distress can occur in situations where one wants to follow a desired course of action but experiences restraints from internal and external barriers. Unaddressed moral distress is associated with negative outcomes (e.g., burnout). Due to the nature of their work with medically and neurodevelopmentally complex children and their families, pediatrics complex care coordinators are at risk of experiencing moral distress. However, there is limited understanding of moral distress in this professional population. Study objectives were to: (1) understand how pediatric complex care coordinators at a tertiary pediatric hospital defined moral distress; (2) explore factors that influence and modulate moral distress in these care coordinators; and (3) explore the impacts of moral distress on care coordinators.

Methods

Semi-structured virtual interviews were conducted with twelve pediatric complex care coordinators from a pediatric tertiary care centre to explore experiences with moral distress. Interviews ranged from 25 to 60 min. Interview transcripts were examined by two researchers using inductive reflexive thematic analysis for each objective. The data were analyzed and coded and a 15-point checklist was utilized throughout each phase of the analysis process for consistency amongst coders.

Results

All participants reported experiencing moral distress using the seminal definition of moral distress. Care coordinators added additional context and depth to this definition. Factors influencing and modulating moral distress in care coordinators were identified: (1) restrictiveness of their scope and capacity; (2) individual experiences; (3) availability of coping mechanisms; (4) the nature of their interactions; and (5) resolution. Four themes on the impact of moral distress were also identified: (1) changes in perspective; (2) impacts on well-being; (3) need for internal and external change; and (4) influence on interpersonal relationships.

Conclusion

An expanded definition of moral distress was co-created with care coordinators and identified factors that influenced moral distress and impacts of moral distress. This work is an important first step to developing a better understanding of moral distress in care coordinators and could inform future interventions to address moral distress in this population.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12887-026-07421-1.

Introduction

Advances in medical technology have increased survival rates for children born prematurely, and those with congenital abnormalities and chronic illnesses [1, 2]. As a result, the prevalence of children with medical complexity (CMC) has increased substantially [1, 2]. CMC are characterized by their chronic conditions, high service needs, functional limitations, and high health care use [1]. Due to their high needs and medical fragility, CMC are at risk for fragmented care and substandard health-related outcomes [3–6]. Caregivers of CMC often experience difficulty connecting families to community supports because of service gaps and challenges navigating systems that provide supports [4, 7]. Fragmented care can result in adverse health care outcomes for CMC [7–9], increased caregiver stress [1, 10–12], and high health care utilization [8, 13, 14].

In response to fragmented care and its consequences, pediatric complex care coordination programs have emerged within healthcare systems to enhance integration and continuity of care for CMC. Pediatric complex care coordination aims to improve care for CMC by reducing care fragmentation, ensuring smooth transitions in care, and reducing inappropriate health service utilization [13, 15–19]. The care coordinator serves as a primary point of contact for families, works with health care providers in the care team, and assists families across systems (e.g., education, health) to address gaps in services and care [15, 17, 20, 21]. Many care coordination programs have shown improvements in metrics such as improved caregiver quality of life [22, 23], reductions in number of hospitalizations [24–28], length of hospital stays [23–28], hospital readmissions [15, 21, 28], and emergency department visits [15, 21, 23, 27, 29].

Despite the benefits that care coordination provides, care coordination programs often face significant implementation challenges. Many programs operate as pilot projects or rely on time-limited funding sources (e.g. grant funding) [17, 30, 31]. Limited funding and resources can result in program understaffing; care coordinators often have challenging caseloads that are difficult to manage within their time constraints [17, 20, 30, 31]. Challenging cases can also pose difficulties in comprehensively assessing families’ needs and addressing their concerns [20, 30–33]. Stringent eligibility criteria and long wait lists for services and supports are also common barriers CMC and their families face, which can limit care coordinators’ abilities to refer families to needed supports [4, 34, 35]. Structural inequities resulting in low socioeconomic status and subsequent limited access to basic services can further exacerbate health problems in CMC and their families [36–41]. However, addressing these inequities can be overwhelming, time consuming, and outside the care coordinator’s scope of practice, so inequities may continue to persist after helping families access limited supports [30, 31, 40, 41].

In navigating these systemic limitations, some care coordinators report bending rules or creating informal solutions to meet families’ needs [31]. However, working under such constraints can generate feelings of moral distress—a phenomenon originally described among nurses as arising “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action” [42]. Moral distress can stem from both internal factors (e.g., powerlessness, self-doubt) and external barriers (e.g., hierarchical decision-making, limited resources) [43, 44]. This distress is particularly pronounced in roles that require close, sustained relationships with families, such as care coordination [43, 44] and in contexts where surrogate decision-making is involved, as with pediatric populations [45, 46]. Elevated moral distress is associated with negative outcomes including burnout [49–51], job dissatisfaction and turnover [46, 52–55], emotional distress [45, 46, 52, 54, 57], physical symptoms [54], and potentially reduced quality of care [52, 58, 59]. Despite growing discourse on moral distress, conceptual ambiguity persists [60, 61], underscoring the need to explore how healthcare providers themselves understand and experience it [62].

Given the unique intersection of emotional labor, systemic barriers, and professional responsibility in the role of pediatric complex care coordinators, this group may be particularly susceptible to moral distress. Yet, to our knowledge, no prior studies have examined moral distress in this population. To address this gap, we conducted semi-structured interviews with pediatric complex care coordinators at a tertiary care center to explore the following questions:

1. How do pediatric complex care coordinators define moral distress?

2. What factors influence or modulate moral distress in their role?

3. How does moral distress impact their professional and personal well-being?

Methods

Ethics and consent

Ethics approval for this study was obtained from the Conjoint Health and Research Ethics Board of the University of Calgary, Calgary AB (REB21-0591). Written informed consent was provided by participants prior to participation, and oral informed consent was audio recorded from participants at the beginning of the interviews. All study protocols and procedures were conducted in compliance with the TriCouncil Policy Statement; Ethical Conduct for Research involving Humans.

Participant recruitment and inclusion criteria

Participants were pediatric complex care coordinators employed in tertiary care clinics at the Alberta Children’s Hospital (ACH) in Southern Alberta, Canada. Clinic managers were emailed a study invitation and asked to distribute this information to care coordinators. Interested individuals contacted the research team directly to participate. Inclusion criteria included self-identification as a pediatric complex care coordinator working in a tertiary clinic or program at ACH. Detailed demographic information was not collected from participants to preserve the anonymity of respondents given the small number of pediatric complex care coordinators at ACH.

Data collection

Semi-structured interviews were conducted individually on Zoom with care coordinators between November 2021 and May 2022. They were asked a series of questions from an interview guide developed with content experts in pediatric complex care coordination, moral distress, ethics, and qualitative research methods that was created for this study (Appendix A). The interview guide was first piloted with two care coordinators who were not participants in the study and the research team. It was then iteratively refined to ensure readability, ease of use, and flow for verbal interviews. Interviews ranged from 25 to 60 min in duration. All participants were interviewed by a research assistant who was trained in qualitative interviewing methodology. The research assistant did not have any pre-existing relationship with participants prior to the interviews. Interviews were audio recorded and recordings were kept confidential, and stored on a secure server only accessible to the study team. Transcripts were de-identified and assigned numeric codes, and participants were given one week post-interview to withdraw their data if desired.

Data analysis

A reflexive thematic analysis (RTA) approach, as outlined by Braun and Clarke, was employed to analyze the data [65–70, 72, 73]. A total of three RTAs were conducted, one for each research question, within a social constructivist paradigm. This framework situates meaning as co-constructed through interaction and prioritizes participants’ subjective experiences [71]. Both semantic (explicit) and latent (underlying) meanings were explored [72].

For the first research question, a deductive approach using RTA was undertaken to develop an expanded definition of moral distress. This entailed initial inductive (data-driven) coding and theme generation by both analysts, followed by deductive theme refinement based on Jameton’s (1984) seminal definition of moral distress to add any additional insights that arose from the analysis [42]. For the second and third research question, an inductive RTA was undertaken, as a data-driven analysis is preferable for concepts that have not been studied previously (i.e. experiences of moral distress in pediatric complex care coordinators, its impacts); this can produce unexpected insights surrounding moral distress that are specific to care coordinators [47–52]. For all three analyses, a social constructivist paradigm was used, which situates knowledge as socially constructed in interactions with others. This “rel(ies) as much as possible on the participants’ views of the situation,” (p. 24–25) [53] and aimed for the analysis to be representative of the care coordinators’ experiences. Data were analyzed with a semantic (explicit) and latent (implicit) focus on meaning [54].

This study used the six-phase RTA approach created and refined by Braun and Clarke [47–52, 54, 55]. Braun and Clarke noted that manual transcription enhances familiarity with the dataset, and as such, the first author manually transcribed the interviews [47, 49–51]. Both coders then familiarized themselves with the data by reading over the transcripts multiple times, and listening to audio recordings. Next, the coding phase was conducted independently by each coder on NVivo (Version 14) [50]. Codes were developed by tagging recurring concepts identified within the dataset relevant to the research question. These concepts were not predetermined [48–52, 55, 56]. Following two iterations of independent code refinement, both coders met to compare codes, and to iteratively refine a list of codes that were then finalized. Following this, initial themes were generated independently by each coder by clustering codes together, and a follow up meeting was used to co-create a list of themes [48–52]. Multiple iterations of theme review were undertaken with regular meetings between the coders and research team to gain alternative perspectives. This theme reviews entailed evaluating themes for internal homogeneity (i.e. if the codes fit under the theme [57]), and external heterogeneity (i.e. if the themes are distinct and answer the research question [57]), and evaluating themes against the entire dataset to ensure that the data was not misrepresented. Theme definitions were created to define the scope of the themes, and to ensure there was no overlap among themes.

Results

Care coordinator demographics

Twelve pediatric complex care coordinators were interviewed. Identified training backgrounds included registered nurse (RN), occupational therapist (OT), speech-language pathologist, and registered social worker (RSW).

Research question 1 (RQ1): How do pediatric complex care coordinators at Alberta Children’s Hospital define moral distress?

When asked to create a definition for moral distress, pediatric complex care coordinators defined it in alignment with Jameton’s (1984) seminal definition [42]. Care coordinators added further depth and context to this definition and the following expanded definition was created:

…when one knows the right thing to do, although one’s values may not align with the patient, family, care team and/or institution. Institutional constraints make it nearly impossible to pursue the right course of action, and one does not have the ability to change these constraints. This leads to feelings of helplessness, powerlessness, and frustration. Additionally, there is a risk that what one is doing may not be right, and could cause harm.

RQ 1 theme 1: Knowing the right thing to do

Most of the care coordinators agreed with this element, i.e., “knowing the right thing to do”, of the seminal definition when it was presented to them; they shared similar sentiments organically in their own definition of moral distress:

" …feeling that what I thought should happen, or would be the right thing to happen, doesn’t happen, and whether I can leave that aside and move along, or whether it keeps me up at night thinking about it.” (P3).

In particular, most care coordinators had a clear idea of what they believed was the right course of action. Many specifically referred to meeting the needs of families and supporting them as the right thing to do in their role. Further, some believed that the definition of what is “right” is open-ended and is dependent on different perspectives.

RQ1 theme 2: Alignment of values with the patient, family, care team and hospital

While agreeing with Jameton (1984) definition, personal values were also emphasized and incorporated in their definitions:

“Moral distress, for me, is about honouring the strong value system that I have, and that I operate by. And the distress comes when those values may not be present in certain situations, or there’s different values emphasized across any area, really, that I work.” (P1).

RQ1 theme 3: Institutional constraints make it nearly impossible to pursue the right course of action

Many care coordinators saw an inability to do what was “right” within their role as integral to their definitions of moral distress (i.e. moral constraint). This ties into the sense of responsibility to help families seen in RQ 1 theme 1 (e.g. to meet the needs of families and provide optimal care), but with the added inability to fulfill this responsibility:

“So it’s that internal frustration that you face, to know that you can make a bigger difference, but you’re restricted because of the challenges within the systems. It’s the systems that frustrate me more than the families, to be honest. That gives me moral distress.” (P2).

RQ1 theme 4: Inability to change these constraints, leading to helplessness, powerlessness and frustration

While many care coordinators reported facing institutional constraints, their distress was complicated by the idea that many constraints were perceived to be unchangeable. Many saw moral distress as inevitable within the institutional constraints and systemic barriers, or within their role specifically. Additionally, some identified these constraints were difficult to overcome, as they were larger than the institution:

“I guess it is institutional constraints, […] it may be more than that. Because I feel like obviously, funding is a huge barrier, but it’s also kind of societal. It’s kind of like, the way our whole society is structured. And it’s the way we don’t offer real, holistic, services to a lot of the marginalized populations that we serve, so everything is done in silos, […] and there’s a lot of intersecting factors that also contribute.” (P11).

This often resulted in frustration and helplessness, which were integral to their definitions. Frustration stemmed from an inability to achieve a desired outcome. Feelings of helplessness were often elicited with the frustration of the unchangeable constraints:

" I want to be able to make a difference. I want to be able to make a change. I want to be able to do more. I want to be able to influence what I know, so we can make a bigger systems impact, but we can’t. We’re stuck. […] We’re all kind of, stuck with “this is the way we have to do it. So the moral distress for me, is how do you handle knowing that this family is going to cycle in and out, and the next year, you can see where it’s all going to go, how all the systems are going to struggle, and you can’t impact that.” (P2).

RQ1 theme 5: Risk of causing more harm

Coordinators shared the experiences of the risk of causing more harm which encompasses situations otherwise described as a moral dilemma or moral uncertainty. While many care coordinators had a general idea of what was right, uncertainty about the specific course of action to pursue arose when navigating barriers, or situations where the right decision was unclear (e.g. complex situations such as child protective services). Inherent in this uncertainty were fears of making the “wrong decision,” and the risk that their action could worsen the circumstances of the family and child:

“You try to make the decision, the best as you can at that moment, but it might not always be right. And I think that’s what makes it hard, … there might not be a perfect answer. Sometimes it’s a lose-lose situation. It doesn’t really matter which way we go, […] it’s just going to lose. The battle you’re going to lose, you just try not to lose as horribly as possible. So you try to lose this battle in a less harmful way.” (P12).

Research question 2 (RQ2): What factors influence and modulate moral distress in pediatric complex care coordinators at the Alberta Children’s Hospital?

Five themes were identified from the care coordinators’ descriptions that relate to factors that influence and modulate moral distress (Fig. 1). Namely, limitations on the care coordinator’s role, individual perspectives, the availability of coping mechanisms, the nature of their interactions, and finding closure, all influenced experiences of moral distress.

Fig. 1.

Perspectives of Pediatric Complex Care Coordinators on Moral Distress. Five themes related to factors that influence and modulate moral distress and four themes related to impacts of moral distress were identified

RQ2 theme 1: Restrictions in scope and capacity

The complex living situations that many families faced with barriers related to the social determinants of health (housing, income security, food security, lack of social supports) made it difficult for care coordinators to help some families in ways they believed was ideal. Furthermore, the scope and limitations of some care coordinator’s capacities often left them unable to help with certain issues. These feelings were intensified by pressures from families in dire need:

“Periodically, mum will be, “I’m really struggling.” (sighs) I know you are, but I can’t get you another house.” (P7).

Constraints most often faced were lack of time to work with families and inability to access resources for families. Time limitations from workload constraints also impacted how much help care coordinators could provide. Many care coordinators were limited with how much time they had to build rapport and trust with families, especially for those in informal care coordinator roles (i.e., those doing care coordinator tasks in addition to their official role):

“There’s all of these big issues, and what you feel like you need, is time to really nurture a relationship with the family. But the way the system is structured, that’s not––I have a massive amount of other kids that I need to serve, and I’m not an official care coordinator, I’m just the one who fell into it.” (P11).

The time-limited nature of some interventions also complicated their roles:

“I think sometimes they think that, if you get care coordination for a year, that it will solve all the problems. Well, we don’t solve the child’s disability, we don’t solve the parents’ mental health problems, …––I have some families who, the parents have an intellectual disability, or have their own diagnoses, and so, I think we can improve things when we’re involved, but it’s hard to make improvements that will last when we’re not in that picture.” (P3).

The care coordinator’s awareness of the complexity of the family situation also dictated the intensity of moral distress experienced. While often acutely aware of the needs of the families they served and the service gaps, most care coordinators were still not always able to help to the extent they wanted to:

“People who do this kind of work have a good sense of what we want to see. But it’s hard, when you don’t have decision-making ability at the level of the organization.” (P11).

Silos, or disconnection across different areas of service (e.g. health care, education, community services) resulted in further difficulties, especially with information sharing when resources changed:

“You can know all the resources in the community, and say “Yeah, you can go here, here, and here.” Well, tomorrow it could change, you don’t know it’s changed, and all of a sudden you’ve referred a family to somewhere, and then everyone’s like, “Well, the family didn’t follow through.” (P2).

Taken together, the complexity of multiple, intersecting barriers made it difficult for care coordinators to reduce some of the challenges for CMC and their families:

“[…] you have a scenario like that, and then you have life in general, and all the social determinants of health that come into play, and then you have all of the gaps that are into play. And then you have parental mental health, you have siblings, you have sibling mental health, you have increased complexity if you have more than one professional, or specialist on the team, then that just opens it up. And then if you have school, and all of the different places, and it’s not the right school placement, English Language Learner, everything starts to come together and impact everything.” (P2).

RQ2 theme 2: Subjective and individual experiences

Care coordinators felt a strong desire to help families, and in turn, had difficulty accepting their own capacity limitations. Conversely, some care coordinators accepted their capacity limitations and this allowed them to not dwell on the outcome of these limitations:

“I guess I acknowledged that it’s not something that I can control, it’s out of my hands. You do what you can do. " (P4).

The level of concern that care coordinators experienced when seeing families suffer also strongly influenced the intensity of their moral distress. For most, the inability to remain optimistic about a situation increased their moral distress. Individual values also shaped experiences and actions following morally distressing situations, especially during value conflicts with families. The value conflicts and the subjective experience of moral distress is exemplified from juxtaposing perspectives from two care coordinators addressing end-of-life situations:

“I know they want to do everything for their kids, but sometimes, it’s like oh my gosh, what are we doing this for? And it’s at a cost of making them have longer lives, but maybe not as robust, and full. It could be more experiences, but a shorter life out, and they could go home, but a lot of these kids just spend so much time in hospital and it’s like, oh my gosh. Yes, you have the length of life, but you don’t have the quality of life.” (P5).

And another care coordinator shared a different perspective,

“And sometimes we do things at [XX] [Hospital] that maybe, other people would go, “Well, that doesn’t make sense, that’s just a waste of resources.” But you know, every life is a life.” (P9).

RQ2 theme 3: Effective and accessible support systems and coping mechanisms

All care coordinators discussed the importance of coping mechanisms, support systems, and opportunities to debrief when facing moral distress. Reflection was commonly used to process situations, and to understand their role and other perspectives. Important support networks included both at-work supports (e.g. co-workers, supervisors), and outside-of-work supports (e.g. friends, family). Some preferred talking to colleagues in similar roles as their own. A significant limitation some faced was time limitations due to their busy schedules, or from experiencing many morally distressing situations at once:

“Yeah, I think ultimately, it’s just the time, because the frequency [of morally distressing situations] was pretty high over the last eighteen months. So sometimes, there just wasn’t the time you needed to decompress. That’s probably the biggest struggle.” (P6).

Some indicated that they intended on accessing formal supports such as counselling or debriefing supports, but ultimately were not able to because of time constraints.

RQ2 theme 4: Intensity and valence of the interactions

Interactions of care coordinators and involved parties can impact their experience of moral distress. Building trust and working closely with families often meant that care coordinators were more likely to become emotionally involved. The added layer of emotional complex care needs meant they were more prone to experience intense moral distress when families’ needs were not met, and to experience positive emotions when their needs were met. Some also reported that the positive role of relationship building:

“I think there’s a couple of positives. It’s always an honour to be part of someone’s life in an intimate way like that. […]it is a privilege to help people in this way, and to be part of their journey, and to celebrate those times when they do gain some increase in function, or change in comfort.” (P7).

In other situations, a family’s mistrust of care coordinators, and their lack of relationship and rapport with care coordinators exacerbated participants’ feelings of moral distress. Emotionally complex situations (e.g. end of life care), or situations with a sense of urgency (e.g. declining circumstances) were intense and challenging for care coordinators. This was often exacerbated in cases where care coordinators worked with families over an extended period and a witnessed progressive decline in the family’s condition. Lastly, difficulties in communications, and silos when interacting with involved parties led to moral distress, especially when it impacted service delivery.

RQ2 theme 5: Resolving the situation

Resolution and/or improvement in situations often influenced the care coordinators’ feelings when reflecting on experiences. Those who had acceptance of the situation shared that they felt less moral distress compared to those with strong regrets:

“I mean, I know there’s always things you could do differently, like in hindsight. But in that instance, I felt like that client got the best patient care, and we did the best with what we could and what we had, and we made a big difference in that one.” (P10).

Conversely another care coordinator shared,

“I look back, they’re still quite distressing. I guess I always feel like I could have handled it better. So I tend to be quite critical of how I manage things.” (P6).

Some care coordinators felt the situation was resolved when the needs of the families were met using workarounds or “band-aid” solutions. These workarounds often took time and additional work and did not always address the root cause (e.g. systemic barriers). This resulted in care coordinators having to solve recurring problems (e.g. the barriers families face) related to lack of resources and supports for families:

“It feels like there’s roadblocks everywhere, and so it feels like you are forced to just, solve the problems anew, every single time, for every single case. And that’s where I’m at right now in my career, I guess, is just like, how do I keep doing my job, my full-time job, that is really, technically not care coordination [i.e., in roles that are not formal care coordinator roles], but so much of it is. How do I have time to fight for the changes that we want to see? So yeah, that’s what wears me out.” (P11).

Being able to see positive changes in a situation, and meeting the needs of families often resulted in decreased moral distress:

“[…] It’s, every little success, like every tiny success is something that builds you up again and makes you––it reels you back in, right when you’re like, “I don’t want to do this anymore, this is too hard.” And then you’re like, “Of course I want to do this. Look how happy the child is! Look, he’s going to school, right?”” (P11).

Research question 3 (RQ3): How does moral distress impact pediatric complex care coordinators at the Alberta Children’s Hospital?

Four themes were identified related to impacts of moral distress on care coordinators (Fig. 1). Impacts faced by care coordinators included changes to their worldviews and behaviours, negative impacts to their well-being, and impacts to their relationships in and out of their role.

RQ3 theme 1: Changes in perspectives

When unable to change their situations leading to feelings of moral distress, most care coordinators reframed and reflected on the situation, their role in the situation, and their values, which helped them to accept their limitations. Some care coordinators also invited external perspectives to better understand the situation:

“Getting different perspectives –– we’ve sat down with social work, my manager, another colleague of mine, and just talk about –– everybody brought a different perspective to the table. One of the social workers said, “Well, one of the things you can hope, is because he was raised with that faith, that hopefully the child believes in the decisions that the family is making,” and so that did give me some comfort, knowing that maybe he would be fine with that.” (P8).

However, at times, the situations caused care coordinators to feel resigned to dealing with the situation, and led them to blame systems:

" I believe he died because he was in the adult system. If he had been back at [tertiary pediatric hospital], he would probably still be alive. That’s my opinion.” (P9).

RQ3 theme 2: Negative impacts on well being

All care coordinators reported moral distress negatively impacted their emotional well-being, mental health, and physical health. Feelings of anxiety, emotional turmoil, guilt, frustration, and helplessness were emphasized when coordinators described feeling concerned for families. These emotions were often experienced with emotional reactions such as sadness or frustration, which at times were difficult to manage while performing tasks:

“Sometimes I just have to close my computer, and walk away, and I may have to chart it later, […] because you can’t have your feelings come across in your documentation. Because sometimes you just want to put in there, “What the heck is going on in this home?” And you can’t,” (P8).

Feelings of regret also persisted in cases where the situation did not feel resolved:

“. I think that, as a case coordinator, one of the biggest challenges, is, you never actually feel done, sometimes. Occasionally, when a family is completely set up, ready to go, and it’s successful. But when it’s not successful, or there’s bumps in the road, it feels like it lingers, and so then, you wonder if there’s more for you to do.” (P1).

These feelings of not being able to resolve issues for families often negatively impacted care coordinators’ self-esteem and self-confidence, with some reporting increased self-doubt. As a result, some second guessed their contributions, which negatively impacted their work and ability to help families:

“I definitely went through a period of being the care coordinator for the other families, where I was second guessing myself on everything (laughs). And, am I doing it right? Am I not doing it right? Am I putting myself at risk? And, totally had a lack of confidence, and second guessed every action that I was doing.” (P2).

Some situations were so distressing that some care coordinators reported needing to take time off to manage their mental health. These situations also often resulted in the manifestation of physical symptoms, including gastrointestinal symptoms, muscle tension, headaches, and sleep difficulties. As well, sleep disturbances were linked to an inability to stop thinking about morally distressing situations, further contributing to feeling emotionally drained and fatigued.

RQ3 theme 3: The need for internal or external change

Driven to reduce their conflicting feelings, care coordinators took actions to either address their moral distress in the current situation, or in future situations. Firstly, reducing moral distress in current situations involved reducing barriers or using coping mechanisms. For many, reducing barriers involved problem solving to identify “band-aid,” or temporary solutions, and piecing together different services that would meet families’ short term needs as no longer term supports were available.

“What we try and do, is we try to find what I call the bandaid solution. You try to bandage the solution, and then, now you got to come up with a long-term plan. We’re going to refer mom to, maybe a community group, maybe a church group, to start building those resources. So that if this happens again, we got something to fall back on. But we’re always the source that families always fall back on first. Yeah, before we come with a plan B.” (P12).

Care coordinators also tried to reduce moral distress in future situations. This included generating ideas, taking learnings into future situations, and setting emotional boundaries with families. This often meant that with experience, some were able to better handle these situations.

RQ3 theme 4:Influence on interpersonal relationships

At times, moral distress had a positive and negative impact on the relationships of care coordinators. All care coordinators leaned on the supportive relationships they had to cope with their moral distress. Many also noted improved relationships with colleagues and increased rapport with the families served. Moral distress also resulted in negative impacts to some care coordinators’ relationships outside of work as they felt emotionally labile, fatigued, and had less tolerance for situations with their own family members:

“Just overall fatigue, so after returning home, not really feeling the energy to do anything, which impacted family too, because I just didn’t have the reserves to then go home and have that level of energy I need for my family.” (P6).

Discussion

Pediatric care coordinators’ experiences aligned with and expanded upon Jameton’s (1984) definition [42] of moral distress, and also incorporated moral uncertainty and dilemmas, which are associated with newer theoretical developments in the field [58]. Whether these two concepts fall under the scope of moral distress is widely debated in the literature, with many researchers believing that a moral judgement is necessary to experience moral distress [42, 59–71]. The co-created definition provided by care coordinators reflects Fourie’s [60] broader conceptualization of moral distress as an “umbrella term that encompasses any distress with a moral component” [72], situating this phenomenon in care coordination contexts.

Care coordinators consistently identified immutable institutional constraints affecting their ability to serve marginalized populations facing multiple social determinants of health challenges (e.g., income level, immigrant status, housing accessibility, few external supports). This manifestation of what Sukhera et al. refer to as “structural distress” [73] arose from navigating overlapping systems-level barriers while attempting to meet family needs. Such structural distress reflects broader systemic inequities that extend beyond individual institutions or programs, creating a compounding effect where marginalization both increases service needs and impedes service delivery. The resulting additional work to overcome these barriers contributed to care coordinator fatigue, consistent with the findings among other health care providers [73, 74].

The limitations care coordinators faced closely paralleled those reported by hospital social workers [44, 75, 76], particularly regarding the inability to provide comprehensive support services that met the needs of the child and family. This experience was intensified by what researchers term the “double burden” of taking responsibility for decisions beyond their authority while remaining accountable to families for outcomes [77]. Resources and time significantly impacted coordinators’ ability to build rapport and trust with families, assist in treatment option exploration, and identify comprehensive needs [17, 20, 30, 31, 43, 75–79].

While building trust and rapport was essential for ensuring families received vital care information [16, 32, 35, 37, 80], maintaining appropriate boundaries proved challenging [43, 46, 58]. Morley et al.’s concept of empathy as a “dimmer switch,” offers a useful framework, suggesting the need to balance engagement with emotional self-protection (p. 1312) [58]. These researchers also recommend that professionals take additional breaks as needed in a morally distressing situation [58]. However, time limitations often prevented coordinators from implementing recommended coping strategies, highlighting the critical need for structural support in managing moral distress.

As a part of a multidisciplinary team, care coordinators worked with different values and priorities (e.g. parents, care team, healthcare and community supports); this led to high potential for navigating value conflict. This could be exacerbated by continuing to work with the patients or families in morally distressing situations, and having to create a care plan that the care coordinator did not think was ideal or unsafe, similar to other roles [43, 76]. Similarly to this study, other health care workers in the literature also noted that their different perspectives informed how they navigated morally distressing situations [81]. However, it is important that moral distress is not seen as a “failing or personal weakness,” [43] as this places blame onto the care coordinators, rather than the broader context of the limitations in their scope and capacity.

The care coordinators expanded definition of moral distress made specific reference to the emotions of helplessness [73, 82–85], powerlessness [73, 82–85], and frustration [44, 83, 86]. This differs from a broad reference to “psychological disequilibrium” [66] in other definitions, as care coordinators saw these emotions as integral to how they defined moral distress. In addition to feelings of frustration and helplessness, the emotions care coordinators felt when experiencing moral distress aligned strongly with the literature, including experiencing feelings of anger [86–89], sadness [86, 88, 89], guilt [88, 89], disappointment [86], and physical symptoms (e.g., sleep disturbances) [86]. The impacts to their well-being resulted in further negative impacts to some care coordinators’ ability to fulfil all their hours of work; notably, one care coordinator took a week off of work following severe moral distress. Mättari Van der Kuip et al. (2016) similarly found that social workers experiencing moral distress took more sick days off than those who did not [77]. However, unlike findings in other healthcare roles [83, 86, 90, 91], care coordinators maintained engagement with distressing situations rather than exhibiting avoidance behaviors, suggesting unique aspects of managing moral distress in this role.

Many care coordinators exhibited signs of burnout, characterized as “a prolonged response to chronic emotional and interpersonal stressors on the job” [92]. Some developed increasingly negative opinions about the systems involved in their morally distressing situations; their feelings aligned with the cynicism dimension in burnout, or “a negative, hostile, or an excessively detached response to the job, which often includes a loss of idealism” [92]. While this conceptually overlaps with moral distress [93–95], our findings suggest that moral distress may be a significant contributor to burnout rather than merely a correlate.

Despite these challenges, coordinators demonstrated remarkable resilience through positive reframing and reflection, effective strategies as noted by previous studies [81, 96, 97]. Their coping strategies naturally aligned with Rushton’s moral resilience model [98, 99]. Care coordinators also used methods of coping found in the literature, including critical self-reflection [81, 100], mindfulness [101, 102], compartmentalization [81, 90] and other general self-care activities [81, 86, 100]. The coordinators exhibited ‘buoyancy’ by grounding themselves in professional values and role boundaries, while developing self-regulation through their capacity to monitor and adjust emotional responses [98, 99]. Deschenes (2021) refers to how moral distress can lead to increased clarity, learnings, and that it “can make an individual more reflective about his or her own moral, spiritual and philosophical beliefs” [96]; responses by care coordinators in the present study support these positive impacts. This resilience, coupled with finding fulfillment in helping families, likely contributed to coordinators’ continued role commitment, contrasting with high turnover rates often associated with moral distress in other healthcare roles [103–105].

Our findings suggest several key implications for supporting care coordinators in their roles. The implementation of structured support systems emerges as a critical need, including the development of formal debriefing opportunities [106, 107] and interprofessional discussion forums, such as the Pediatric Ethics and Communication Excellence (PEACE) rounds [107, 108]. Additionally, protected time for accessing support services appears essential for effective coping with moral distress.

Organizational changes are also warranted based on our findings. Healthcare institutions should recognize and address the impacts of structural distress through dedicated time allocation for relationship building and enhanced support for accessing coping interventions. Professional development opportunities focused on boundary setting, resilience strategy development, and skills for navigating system constraints could further support care coordinators in managing moral distress effectively.

Limitations

While this study provides valuable insights, several limitations warrant consideration. Firstly, the broad definition of care coordinator roles used in recruitment, while allowing for rich data collection, limited our ability to draw role-specific conclusions. Secondly, while we chose Jameton’s (1984) definition of moral distress for its widespread use, other frameworks might offer additional insights. We addressed this limitation by incorporating care coordinators’ own definitions in our analysis. Thirdly, we collected data from one hospital in Southern Alberta which might limit a broader understanding of this experience. Fourthly, demographic information was not collected to protect participant anonymity given the small population of care coordinators, potentially limiting our understanding of demographic influences on moral distress experiences. As well, no demographics on the types of patient populations was shared in this manuscript, which could inform implications. Finally, our sampling method combining purposeful and convenience sampling may have introduced selection bias [109, 110].

Conclusion

This study marks an important first step in understanding moral distress among pediatric complex care coordinators, revealing both common themes in moral distress literature and unique aspects specific to care coordination roles. While coordinators demonstrated remarkable resilience and role commitment, their experiences highlight the need for systematic support structures and organizational changes to sustain this vital service. Future research should explore interventions to address structural distress and enhance moral resilience in this critical healthcare role.

Abbreviations

ACH

Alberta Children’s Hospital

CMC

Children with Medical Complexity

FFS

Fee For Service Model

OT

Occupational Therapist

RN

Registered Nurse

RSW

Registered Social Worker

RTA

Reflexive Thematic Analysis

Authors’ contributions

All authors conceptualized the present study. S.K. and B.G. recruited participants and created the interview guide. S.K. conducted the interviews. S.C. planned and carried out the data analysis, under the supervision of S.M. and D.D. S.H. analyzed data for the first three stages of data analysis, and assisted with interpretation of findings with S.M. S.C drafted the initial version of the manuscript. All authors reviewed and edited the manuscript. S.M. finalized the manuscript for submission.

Funding

Declaration.

Funding was received from Alberta Innovates and Hotchkiss Brain Institute. No industry supports were provided.

Data availability

The datasets presented in this article are not readily available because of participant confidentiality, participant privacy, and the study’s ethics approval. Inquires about the dataset should be directed to the corresponding author.

Declarations

Ethics approval and consent to participate

for this study was obtained from the Conjoint Health and Research Ethics Board of the University of Calgary (REB21-0591) on July 21, 2021.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.