Emotional Impact, Burnout, and Isolation among Primary Family Caregivers of Children with Medical Complexity

Abstract

Introduction:

Children with medical complexity (CMC) often have substantial healthcare needs, are medically fragile, and experience functional limitations. Caregiving for these children can be extremely stressful. We sought to understand the emotional impacts of caregiving and burnout among caregivers of CMC to provide insight into areas where providers who work with children and their families can intervene.

Methods:

Twenty primary caregivers of CMC participated in qualitative interviews. Qualitative data were analyzed using Interpretive Phenomenological Analysis. Emergent themes were identified and categorized into superordinate themes.

Results:

Caregivers of CMC described the ‘emotional impact of caregiving’ including hospitalizations are emotionally demanding, child in pain is distressing, fearing child would not come home from the hospital, an awareness that child may die, anticipatory anxiety about future medical events, and traumatic memories of past medical events. Caregivers conveyed themes of ‘caregiver burnout’, indicating that stress is constant, a need for constant vigilance, caregiving is emotionally and physically exhausting, self-care is limited, feelings of helplessness, and difficulty self-regulating emotions. Caregivers revealed ‘caregiver isolation’, including others don’t understand daily struggles, child’s medical situation is unique, the limited community and emotional support, social reactions to child’s needs, and comparing child to other children makes limitations stand out.

Discussion:

Findings provide insight into the lived experience across primary caregivers of CMC. Identifying these experiences enables providers who work with children and their families to effectively intervene, including prevention tactics, screening, and/or intervention. These healthcare providers play an important role in promoting optimal care and outcomes for these caregivers and in turn better outcomes for their children.

Children with medical complexity (CMC) are characterized by chronic conditions often associated with medical fragility, severe functional impairments, need for assistive devices and other medical technology, family service needs, and high healthcare utilization (Cohen, 2011). This population has been the subject of expanding literature over the last 10 to 15 years, evidenced by a wide range of systematic and scoping reviews on topics such as preventing hospitalizations (Coller et al., 2018) or emergency department visits (Pulcini et al., 2021), population health outcomes (Barnert et al., 2019), costs (Sidra et al., 2022), transition from the hospital to home (Breneol et al., 2017), and caregiver stress interventions (Bradshaw et al., 2019; Edelstein et al., 2017).

Caregiver stress has understandably been the subject of research across disciplines given the significant time and efforts a caregiver must commit to raising and caring for a CMC. Caregivers undertake responsibilities at home to support their child’s daily living needs which may include use of feeding tubes, pumps, tracheostomy tubes and ventilators, and other medical devices (Berry et al., 2013); troubleshooting device malfunctions and adapting technology to the living space are additional challenges for caregivers of CMC (Barton et al., 2021). Additionally, caregivers of CMC must ensure their child attends medical and therapy appointments and may also require in-home services (Berry et al., 2013). These practical roles can increase the risk for stress and burnout for caregivers (Peckham et al., 2014). Stress and worsened psychosocial wellbeing can also be influenced by the emotional demands of caring for CMC, such as facing uncertainty and anxiety about their child’s health or functioning (Nygård & Clancy, 2018), and barriers to employment (Mandic et al., 2017). Allshouse et al. (2018) authored an article from the perspective of parents of CMC and spoke to the systemic factors: a fragmented healthcare system, inadequate health insurance, and barriers to accessing needed services. Ultimately, the demands and burden placed on caregivers of CMC can result in downstream negative consequences for the CMC if a caregiver’s stress impedes their ability to provide the best care (Nygård & Clancy, 2018).

This chronic stress among parents of CMC is related to caregiver burnout, which can be defined as a “prolonged response to chronic and overwhelming parental stress” (Mikolajczak & Roskam, 2018). Research within parenting in general has described burnout as an intense exhaustion which can be associated with emotional distancing from the child, escape ideation, neglect, and parental violence (Mikolajczak et al., 2019). While terminology varies on how caregiving experiences are described for caregivers of CMC, qualitative studies have explored both hardships (e.g., Hirt et al., 2023; Koch et al., 2021; Tager et al., 2024) and coping or resilience factors (e.g., Krieg et al., 2023; Tager et al., 2025; Teicher et al., 2022). Across these studies, identified difficulties faced by caregivers of CMC included multiple roles of caregiving, insufficient respite care, financial costs and barriers, mental health, unmet needs, stress with hospitalizations, and increased stress during the pandemic. Identified coping or resilience factors included prioritizing the child’s needs, support from others, positive outlook, and trust in their child’s interdisciplinary team.

In a scoping review from Edelstein et al. (2016), interventions to support caregiver stress included care coordination, respite care, peer and emotional support, telehealth, insurance and employment benefits, and health related supports. The authors note that themes encompassed “streamlining services” and “reducing the burden of care”, and that interventions provided positive outcomes. Heterogeneity of study design, interventions, measures, and outcomes of the included studies creates difficulty in determining the best fit for a specific program, and room for individualization to unique family needs was suggested (Edelstein et al., 2016).

Despite the growing body of literature demonstrating challenges and supports, there is still a dearth of knowledge about how these substantial challenges and limited supports contribute to burnout. Burnout models in other caregiver populations have been conceptualized to better understand the occurrence of caregiver stress and its implications on the individual based on primary and secondary stressors, the individual’s appraisal, and subsequent psychosocial, behavioral, and physiological outcomes (Gérain & Zech, 2019; Sorenson et al., 2006). However, contextual factors including psychological and social determinants not centered in these models also frame caregiver experiences and should be considered to better comprehend the unique experiences and impact of caregiving for CMC.

It is important to note, as well, that many caregivers experience meaning-making (Tager et al., 2025) and post-traumatic growth (Negri-Schwartz et al., 2024). In order to further promote these positive processes and target population-specific distress, a nuanced understanding of this distress is required, and thus this study has important implications for future research and clinical directions. Therefore, the present study sought to understand the emotional impacts of caregiving and burnout among caregivers of CMC. As such, in addition to contributing to the literature on caregiving burnout specifically (Mikolajczak & Roskam, 2018), it also sought to provide insight into areas where pediatric providers can intervene.

Methods

Participants

Participants were recruited from a large pediatric hospital in the midwestern United States and were served by the Complex Care Program (CCP). The CCP is an optional care coordination service that provides care planning, communication support between medical teams and families, and medical co-management in both inpatient and outpatient settings. To opt into the CCP, patients must meet the following eligibility: 1) chronic medical conditions involving 3 or more organ systems and requiring the care of 3 or more medical specialists, 2) at least one unplanned hospital stay totaling at least 5 inpatient days or at least 10 specialty clinic visits over the past year, and 3) unmet care coordination needs.

Study participants were caregivers of CMC who had been a part of the CCP for at least one year, were at least 18 years or older, served as the primary caregiver to the patient in the CCP, and spoke English. Twenty participants completed the study and were recruited through purposive sampling. The study was introduced during clinic visits and 35 families expressed interest. Of these, 2 families declined to participate after being contacted and 13 families were not able to be reached after 1–2 attempts of contact. After 20 interviews were completed, the research team discontinued contacting interested families based on qualitative research guidelines (Smith et al., 2009). Participants were primarily non-Hispanic/Latinx (N=18), White (N=17), and married (age, M=39.05, SD=7 years). See Table 1 for demographic data and characteristics of all participants and their CMC.

Table 1.

Participant and CMC Demographic Information

Participant Demographics
Variables	n (%) / M (SD) [Range]
Gender and Relationship to CMC
Female - Mother	19 (95%)
Male - Father	1 (5%)
Race
White	17 (85%)
Black or African American	1 (5%)
Another race or prefer not to answer	2 (10%)
Ethnicity
Not Hispanic/Latinx origin	18 (80%)
Hispanic/Latinx origin	1 (5%)
No response	1 (5%)
Marital Status
Married	13 (65%)
Single, never married	5 (25%)
Divorced	2 (10%)
Highest Education Completed
High school	9 (45%)
College	7 (35%)
Associate degree	4 (20%)
Parent Age (years)	39.05 (7.0) [27–52]
Characteristics of Participant’s CMC
Gender
Female	11 (55%)
Male	9 (45%)
Length of time served by CCP
1–2 years	2 (10%)
3–5 years	9 (45%)
6+ years	9 (45%)
Caregivers besides participant
Participant’s spouse/partner/coparent	16 (80%)
Siblings or half-siblings	1 (5%)
Other family members	4 (20%)
Babysitter, nanny	1 (5%)
Home nursing staff	1 (5%)
Other caregivers	2 (10%)
Child Age (years)	8.2 (4) [2–19]

Procedures

The current paper was part of a larger qualitative project, which was approved by the Institutional Review Board (IRB #21.148) and assessed stress and coping among primary caregivers of CMC served by the CCP. Study recruitment and interviewing took place in April-May of 2021. A study coordinator systematically reviewed the medical records of patients scheduled for appointments at the CCP’s clinic to ascertain eligibility. Practitioners introduced the study to eligible families during clinic visits. Participants were informed that their decision to participate or not would not impact their child’s care. Practitioners obtained verbal consent from interested caregivers for the storage of their first name and phone number in a secure REDCap server.

One primary caregiver of CMC from each household was invited to participate to ensure recruitment of individuals with a broad range of parenting experiences. Researchers contacted interested families within a week of the CCP appointment and informed consent and demographic information were obtained from participants. Interviews were conducted by graduate student researchers either by video-call or by phone, based on participant preference. Participants were compensated $50 upon study completion. Interview recordings were transcribed verbatim, and transcripts were de-identified.

Materials

An interview guide was developed by researchers with expertise in pediatric psychology, pediatric medicine (Complex Care, Palliative Care, and Critical Care), social work, and qualitative methods. The CCP’s Family Leadership Committee, a small group of parent volunteers whose children are served by the program, reviewed the interview guide. The interview guide was tested during a cognitive interview with a volunteer parent of a child served by the CCP. The research team then made subsequent revisions of the interview guide for length and content. See Tager et al. (2024) for a complete list of questions on the interview guide.

Positionality Statement

Regarding positionality of the researchers, the research team included clinicians and researchers ranging from trainee (graduate school) to advanced career level and had expertise in qualitative methods, pediatric psychology, social work, nursing, and pediatric medicine. Researchers had differing levels of familiarity and involvement with CMC including, family members of CMC, clinical engagement with CMC, and familiarity with pertinent CMC literature, but little or no contact with CMC. All research team members shared the assumption that caregiving CMC is inherently stressful.

Analyses

Demographic data were analyzed descriptively, and qualitative data were analyzed using Interpretive Phenomenological Analysis (IPA; Smith et al., 2009). This methodological approach was used to specifically highlight the unique experiences of caregivers of CMC. IPA was completed by three graduate student researchers who also conducted the interviews and were supervised by two pediatric psychologists with expertise in qualitative methods. Themes were not quantified or coded by frequency given that IPA methodology focuses on the individuals’ lived experiences. IPA steps included coding by reading and re-reading individual transcripts, describing segments of text in each transcript, identifying emergent themes in each transcript, and then across all data, and finally abstracting or subsuming emergent themes to create superordinate themes. To ensure data quality and rigor the following steps were taken: 1) all graduate students had experience with interviewing and qualitative coding, 2) the pilot interview transcript was used for coders to practice the IPA process, 3) two team members reviewed each of the coded transcripts, 4) weekly meetings occurred to review results at each level of categorization, and 5) written and verbal personal reflections were included to identify possible biases throughout coding. Lastly, to ensure that theme terminology and content resonated with and were perceived as accurate by caregivers of CMC, superordinate and emergent themes were presented to the CCP Family Leadership Committee for review. The current paper characterizes three superordinate themes which include Emotional Impact of Caregiving, Caregiver Burnout, and Caregiving is Isolating. Notably, the superordinate themes overall describe the impact of caregiving, subsequently emergent themes may fit into more than one superordinate theme (i.e., emergent themes in burnout may overlap with emergent themes in emotional impact) but were placed in one for IPA coding purposes based on qualitative context.

Results

Results are organized by three superordinate themes and their emergent themes (subthemes) in italics. An overview of each of the superordinate and emergent themes are displayed in Table 2. Results indicate family caregivers of CMC experience an increased emotional impact from caregiving, caregiver burnout, and isolation.

Table 2.

Superordinate and Emergent Themes

Emotional Impact of Caregiving

Hospitalizations are emotionally demanding

Child in pain is distressing

Fear child would not come home from hospital

Awareness that child may die

Traumatic memories of past medical events

Anticipatory anxiety about future medical events

Caregiver Burnout

Stress is constant

Need for constant vigilance

Caregiving is emotionally and physically exhausting

Self-care is limited

Feelings of helplessness

Parent has difficulty self-regulating emotions

Caregiving is Isolating

Others don’t understand daily struggles

Child’s medical situation is unique

Limited community and emotional support

Social reactions to child’s needs

Comparing child to other children makes limitations stand out

Emotional Impact of Caregiving

Caregivers of CMC discussed a number of emotional impacts of caregiving:

Hospitalizations are emotionally demanding.

Many caregivers of CMC expressed the physical and mental toll hospitalizations have on caregivers and their families, with one participant exclaiming, “But those [hospitalizations] are just so hard on our family. It’s just on us emotionally, mentally, and exhaustion-wise, it’s just so much.” One participant indicated that the uncertainty of everything makes hospitalizations emotionally demanding:

The hospital is really hard because you never know what’s going to happen when she’s sick enough to be in the hospital. And even when she’s not in the hospital, every day it’s like, is today going to be the day that something really, really bad happens?

Further they described heightened emotions regarding hospitalizations stating, “It’s just a more acute level of stress.”

Child in pain is distressing.

Several caregivers expressed a sense of anguish as seeing their child in pain is distressing. Many CMC require intensive medical intervention or surgeries, which is inherently stressful for caregivers to witness. This was expressed by one participant stating, “it’s agonizing to see your child constantly have to go through things.” One caregiver described the distress she experienced:

It was terrifying, and he was in so much pain after his leg surgery… he’s miserable and I don’t know what to do… and I remember crying to my husband that night saying I hope that this is going to be worth it for him and this is going to help as much as they think it’s going to. Because if it doesn’t, then I just put him through all of this for nothing.

This sense of helplessness was further expressed by another caregiver:

It’s really hard as a parent to watch your child be in pain and not be able to do anything about it… it’s hard to watch your child struggle because you just wish you could take that away from them, and you know that you can’t, and I think that’s the worst part of it is knowing that you don’t have the option of taking that pain from them because, unfortunately, sometimes it’s necessary.

Fearing their child would not come home from the hospital.

This emotional impact of caregiving CMC was described by two caregivers stating, “we didn’t know how long we were going to be there. We didn’t know if he was going to be able to leave… it was just a very, very scary experience” and “it’s been a rollercoaster… we’ve had our times where we didn’t think we’d be leaving the hospital with her.”

Awareness that their child may die.

Half of all participants described the emotional impact from the awareness that their child may die. For example, one participant indicated, “we know her life expectancy is shortened, and so, of course, that’s always something that’s scary and worrisome,” and another stating, “I get anxiety thinking about losing him.” Having this awareness as a parent significantly impacts one’s mental health and well-being as described by one caregiver, “I have been diagnosed with depression and anxiety back when [child] was about a year old… I was suicidal for a while [...] if she was going to die, why do I wanna be here?”

Anticipatory anxiety about future medical events.

Given the unpredictable nature associated with many conditions CMC have, participants described anticipatory anxiety as a constant with one participant stating, “you always worry about things that can go wrong, because everything that can go wrong has gone wrong with [child],” further saying, “I’m always thinking about things that can go wrong, it’s on the back of my mind.” Another caregiver suggested that anticipatory anxiety is still present even if they have had a few good years, “I feel like it’s always kind of lurking in the distance, you know, in the background. It’s always kind of like, ‘Don’t get too comfortable like this.”‘

Traumatic memories of past medical events.

Caregivers often described traumatic memories of their child’s past medical events. For example, one caregiver described when their child got sick again and the impact it had, “when [child] had meningitis, it brought back old feelings from the beginning. It was very scary. I always end up calling my mom… I’m bawling my eyes out… I think those were the hardest for my emotions.” Another caregiver also described recalling traumatic memories: “I replay that every time she’s sick, I replay that incident over again. Every time she’s sick, I get that scared. I always wonder if this is it, is she not gonna be able to make it out of that?”

Caregiver Burnout

Caregivers also conveyed themes of Caregiver Burnout, which overall characterizes the physical, emotional, and mental exhaustion caused by the stress of caring for CMC over time:

Stress is constant.

Caregivers described constant stress no matter what, “it’s not so much the 1 event, it’s the 100 small events between the 10 big events that you have.” Further, repeated medical events are stressful, “do it again, and again, and again, and again, and again. And then keep doing it for 13 years. It’s like you get kicked in the face every day.” One caregiver described the biggest challenge that they face regarding their child’s medical conditions was stress, “it’s about chronic stress, but stress is huge… it’s always there. It’s there because she’s sick or something’s happening or she needs more attention. So, I think the stress that you carry probably is one of the biggest challenges.”

Need for constant vigilance.

One caregiver stated needing to “sleep with one eye open” and another explained needing to constantly watch their child, “It doesn’t matter what age the child was… I have to be watching and hovering and stuff like that.” Caregivers described a need to be always hyper aware to ensure their child’s well-being:

I have to be on constant high alert. Like, constantly. I have to be reading her, looking to see if something’s setting her off, anticipating her needs. Just mentally keeping track of her needs. When did she use the bathroom last, how many ounces of water has she had? What medication are we due for now? Like, you know, all that stuff too. I have to watch her around people, I have to coach people, I have to remove her from situations.

Caregiving is emotionally and physically exhausting.

Perhaps given this need for constant vigilance, many caregivers expressed that caregiving is emotionally and physically exhausting. For example, participants described being “chronically exhausted” and stated, “emotionally, we’re just always tired. Tired, tired, always overwhelmed and exhausted,” as well as “I don’t have much energy to do anything else. I just don’t have it in me anymore,” and “her needs take so much more of my energy and you know, mental space, and emotions, all of it.” Caregiving CMC was described as “emotionally draining and physically draining,” “overwhelming at times,” and that “it’s hard to be everything to one person” given the energy it takes to be a caregiver. One participant described their days as, “Some days you feel like you get kicked in the chin, and some days you feel like you get kicked in the chin five times.”

Self-care is limited.

Caregivers indicated limited self-care likely due to the significant time demands, energy needed, and constant vigilance. Caregivers expressed their needs usually came last and there is no time to take care of themselves. For example, one participant stated, “I am the last one that I think about, so it can be a little difficult to force myself to recharge,” and another said, “I don’t believe I recharge.” One caregiver described the constant worries and anticipation of needs makes self-care difficult, “you can push yourself off real quick and not take care of yourself, which typically doesn’t end well long term.”

Feelings of helplessness.

Many participants described helplessness typically when unable to anticipate their child’s needs, understand what is wrong, not knowing what to do, or during medical events or procedures. One caregiver expressed helplessness regarding being unsure what to do for their child, “sometimes the feeling, like the helpless feeling is because you don’t know how to help her or what to do for her kind of thing.” Similarly, another caregiver stated, “it was really hard for me. I feel like my world is ending. I guess you can say those are the hard ones, not knowing what was wrong with him.” One caregiver stated how difficult it was during medical events and procedures, “that was hard, watching your child be intubated. That was hard, hearing that if we don’t do this, this could be it.”

Difficulty self-regulating emotions.

Caregivers described difficulty with regulating emotions likely contributing to caregiver burnout. Participants described not knowing “how to cope… I guess I don’t,” as well as stating: Sometimes I start shutting down. Like, mentally shutting down. Just feel like I’m in a daze of…like it’s hard to accomplish things. I just feel very continually very stretched very thin… there’s really not an end in sight…I just blackout and just keep going.

Caregiving is Isolating

Results indicated that caregiving is isolating amongst other family members, other parents, peers, and the community:

Others don’t understand daily struggles.

One participant stated a reason for feeling isolated stating, “There’s nobody there. Because you know what? Nobody freaking understands what you’re going through unless they’ve gone through it. They don’t know.” Similarly, another caregiver described how much work went into caregiving:

It is nearly impossible for someone who’s not in our situation to recognize the amount of intervention and the amount of time beyond just caring for [child]. But then there’s also dealing with insurance and making appointments and dealing with any kind of support or services or programs or therapies… I think it’s maybe the sheer volume of caregiving that I don’t think anybody would recognize unless they’re in our shoes.

Child’s medical situation is unique.

Many caregivers described how unique and rare their child’s medical condition was, indicating it is hard to meet other families with similar conditions for support. For example, one caregiver stated, “I don’t know any families that… with a baby with my daughter’s exact condition,” and another said, “he has such a rare thing that is not very common. So, we don’t have a lot to go by… we just know another case through the internet, and they live in [city].”

Limited community and emotional support.

Further contributing to isolation, caregivers described the difficulty of finding a community that is similar enough to their child, “I feel like we don’t fit into the autism community…and I feel like we don’t fit into the cerebral palsy community because we have all these other things, and it’s hard to find that sweet spot with people.” Other caregivers expressed limiting social interactions or losing peer relationships. For example, one caregiver stated, “I don’t really have any friends,” and another expressed:

I’ve actually lost a few friends after I had [child]. I mean, it’s one thing when you have a child that is healthy and can go out and do these things with you. It’s another when you have a child that has a strict regimen they have to follow, has medications they have to get at certain times, has a ton of appointments.

Further, one participant disclosed their limited emotional support from peers was due to how draining it is to explain their difficulties, “I had multiple friends tell me that I keep things private, like, that I’m going through with her. And it’s honestly because I don’t have the emotional energy to explain it.” Additionally, one caregiver expressed a lack of community support from others reaching out to assess their needs, “there’s very few people in your life, including your family, that are gonna say, “Hey, do you need any help? Do you need anything? Can I help you with anything?”

Social reactions to child’s needs.

Caregiver isolation was also described as a result of social reactions to their child. For example, one caregiver described limiting social interactions due to judgement from others about their child:

I don’t socialize with my neighbors… when it comes to [child], I got maybe a little bit of an unhealthy fear of judgment. Not of me, of her. I worry about how people will treat her or what they’ll think of her and judge her when I’m right there... the stares, the looks because she’s different… I have specific support people in my family, outside of them I don’t really do too much with reaching out and connecting with people.

Another caregiver limited interactions with others to be protective of their child:

I don’t have people around me that would be annoyed by him… If they literally got upset because I wouldn’t be able to go to this place or to dinner or on a date or something because of [child], then I don’t need that person. Because he’s a child, and he is a special needs child, and he is my child, and if you’re gonna be mad or upset about that, then I don’t need that around my family.

Comparing their child to other children makes limitations stand out.

Caregivers expressed that comparing their children to others further contributed to isolation. For example, one caregiver described not being able to do activities with friends that have healthy children:

I have some friends with children that have no medical problems, and they can go out and about and do anything, everything they want, like, nighttime, let’s say, versus I can’t do that with [child] ‘cause he has lines and other stuff I got to take care of.

Another caregiver described the difference between her family and other families at a caregiver retreat she attended highlighting feelings of isolation even with members of a similar community:

I just felt kind of like an outsider a little bit just because I couldn’t relate to a lot of the stuff they were talking about and the challenges that they have… over time it’s kind of like you hear people complaining about things that are pretty minor compared to what we deal with.

Discussion

The present qualitative study sought to understand the emotional impacts of caregiving and burnout among caregivers of CMC to provide insight into areas where providers can intervene. Findings indicate the presence of substantial emotional challenges as part of the caregiving role, including traumatic distress, challenges regulating emotions, and the lack of opportunities for social support. Many of these findings echo those previously documented in qualitative studies, including those outlining the immense responsibility of caregiving for CMC (e.g., Woodgate et al., 2015; Nygård & Clancy, 2018), but this study adds detail to the scientific understanding of burnout for this caregiver population.

Compared with parents of healthy children, those parenting children with chronic medical conditions are at higher risk of clinical levels of burnout (Lindstrom et al., 2010). Parent burnout levels have been associated with severity of child illness and several health impairments in families of children who receive stem cell transplants (Lindahl Norberg et al., 2014), but limited research has explored burnout among families of CMC. Considering the medical fragility associated with CMC and previous research demonstrating that these caregivers experience among the highest distress of any other pediatric parent population (Verma et al., 2020), it follows that parent caregivers of CMC may be at particularly high risk of burnout. The present study illustrates the multifactorial nature of this distress by exploring the construct of caregiving burnout (Mikolajczak & Roskam, 2018; Mikolajczak et al., 2019) as it relates to this population. Findings suggest that burnout in this population may be caused and maintained by caregiver emotional distress, the need for constant vigilance, and social isolation. Anxious and depressive symptoms and poor social support are associated with parental burnout in other populations (Ren et al., 2024), but current findings suggest the need for constant vigilance as a potential additional contributor to parental caregiver burnout. Constant vigilance may be indicative of prolonged exposure to stress, which can lead to prolonged trauma responses (Dewan et al., 2023; Mikolajczak & Roskam, 2018; Mikolajczak et al., 2019). The long-term and chronic medical trajectories of CMC, in the context of a system which fails to provide adequate respite care to families (Sobotka et al., 2019), likely serve to exacerbate these challenges, causing parents and caregivers to be unable to take breaks or practice sufficient self-care. Without adequate resources for managing their own well-being, participants in the current study lacked opportunities to effectively manage their emotional distress and interrupt the factors maintaining their burnout.

Of note, this study explored the emotionally challenging aspects of caregiving for CMC. The authors recognize that caregiving for CMC can be extremely demanding, but that, like most parents, parents of CMC also adore and love their children intensely.

Limitations

There are some notable limitations to this study. First, these findings are from a single center and thus may not reflect the experiences of caregivers of CMC at other centers. The studied CCP was designed to offer both inpatient and outpatient services, with added missions of optimizing care transitions between different settings and preparing caregivers for potential matriculation from the CCP. Mantler et al. (2020) described care transitions as a known source of emotional distress to parents of CMC. As the CCP in our study explicitly attempts to smooth these transitions by its design, the emotional impact of care transitions may be greater at those CCPs that do not offer both care to inpatients and outpatients.

A second set of limitations relates to differences between caregivers of CMC who participated in the study and others who did not. To participate, a caregiver of CMC had to have enrolled in the CCP. Thus, our findings should not be assumed to reflect the experiences of caregivers of CMC who either never enrolled or exited the CCP early. Participants represented unique households, meaning that only one person’s perspective was captured from each household which may be another limitation. Findings among our participants reflect a group that is predominantly white/non-Hispanic, women, and English speaking. As demographic characteristics of eligible non-participants were not collected, it is also unknown the degree to which the study participants and non-participants may differ demographically. Further, the purposive sampling was based on the child’s demographics, which may not be the same as their caregiver. A final limitation was the intentional recruitment of English-speaking participants. Therefore, the findings of this study cannot be assumed to be that of non-English speaking caregivers.

Future Directions & Implications

Despite the limitations, there are important clinical implications of our findings directed towards providers who care for CMC including those who are not part of a CCP such as pediatricians, family health care providers, internists, and specialists who work with CMC. First, the described traumatic distress and lack of opportunity for social support are both opportunities for interventions to improve the well-being of this caregiver population. If a goal of healthcare is to preserve family units and avoid unnecessary hospitalizations, then caring for the caregivers of CMC should be a priority. Operationally, findings highlight the need for integrated systems of care that proactively address caregiver distress as part of routine care delivery for CMC. This could include embedding psychosocial screening tools into electronic medical records, incorporating caregiver mental health assessments into complex care clinic workflows, or establishing partnerships with community organizations to provide social and emotional support. This may also include prevention tactics (e.g., providing resources), screening to identify such experiences that may already be occurring, and/or intervention. The chronic traumatic nature of the CMC caregiver experience appears to impact mood and trauma responses in a way that may be consistent with mood disorders as well as post-traumatic stress symptomatology. Thus, screening and identifying such is recommended to effectively intervene (i.e., place referrals, consult psychology). Further, medical systems interventions are needed to provide support. As mental health resources and community building may be ways to mitigate burnout, then the medical system should be involved in its development.

Furthermore, the emotional toll and burnout experienced by caregivers of CMC may have important financial consequences for both families and healthcare systems. Caregivers often reduce work hours, leave employment, or forgo career advancement due to the demands of caregiving, leading to lost income and economic instability (Mandic et al., 2017). From a systems perspective, unaddressed caregiver burnout may result in increased utilization of emergency services or unplanned hospitalizations for the child, ultimately contributing to higher healthcare expenditures (Sidra et al., 2022). Preventive caregiver support, such as mental health resources, respite care, or caregiver stipends may reduce downstream costs and improve long-term health outcomes for both children and families.

Another important clinical implication is the need to optimize interactions with healthcare providers. Literature has identified both distrust of and loss of respect for healthcare providers amongst parents of children with special healthcare needs (Nygård & Clancy, 2018). Distrust of healthcare providers has been linked to healthcare avoidance (Spleen et al., 2014) and worsened self-reported health outcomes among adult patients (Armstrong et al., 2006). Knowing that parents of CMC are at risk for loss of respect and distrust, which may be aggravated by the stresses resulting from care for CMC, future work should focus on the role of distress, loss of respect, and distrust which may worsen the long-term outcomes of CMC. Additionally, providers may implement prevention and mitigation efforts through incorporating a trauma-informed care approach (Dewan et al., 2023). The National Child Traumatic Stress Network describes trauma-informed care as an approach to assess, identify, and respond to effects of traumatic stress on children and their families (The National Child Traumatic Stress Network). Providers should intentionally adopt and apply trauma-informed care approaches into their interactions with families.

Overall, caregivers demonstrated their lived experiences of the emotional impact, isolation, and burnout experienced in their day-to-day lives and over time caring for CMC. Providers who care for CMC are uniquely positioned to enact meaningful systems-level change through implementing humanism in care delivery (Houlihan et al., 2024), advocacy for improved access to respite care, and caregiver mental health supports. Further, there is a need for intervention development focused on mental health and caregiver wellbeing, in particular to building on the resilience and positive meaning-making demonstrated by caregivers of CMC. Such changes and intervention implementation may improve the quality of life and overall wellbeing of caregivers and in turn CMC themselves.