Background

Childhood cancer has tremendous psychosocial impacts on caregivers, who must often assume responsibilities that are emotionally, physically, and psychologically demanding [1]. Caregivers are family members, friends, and others who most often help the cancer patient. For childhood cancer, caregivers include parent(s), grandparents, and legal guardians [2]. The complexity of caregiving is situated within the fluctuating levels of caregiver stress, including past and current mental and physical health experiences, family functioning, and marital distress [3].

Recently, researchers concluded that caregiver participation in shared decision-making is critical in mitigating the psychosocial impact of a childhood cancer diagnosis [4]. During the treatment phase, caregivers report waiting and longing for information and support that was not always forthcoming, resulting in reduced psychological well-being, described as “the hardest times we dealt with as a couple and a family” [5]. The treatment phase is described as an emotionally unstable situation for caregivers as their attention on caring for and protecting their child often means neglecting their own psychological needs [6]. It is only after curative treatment that many caregivers attempt to deal with the emotional trauma of childhood cancer [6].

Research suggests that caregivers who experience emotional support from attentive healthcare professionals during treatment may have more positive experiences with childhood cancer [7]. While the literature on caregiver well-being provides insight into their psychosocial needs, it does not provide a more nuanced understanding of the most difficult experiences from the caregiver perspective, which is necessary for successful implementation of caregiver support in the healthcare setting. Much of the qualitative research to date on the topic of caregiver mental health and childhood cancer has been done outside of the United States (US); thus, little is known about the experience of families living in the US, where mental healthcare is often not adequately covered by insurance [8] or is cost prohibitive [9].

In the US, patient guidelines highlight unique issues, identify available resources, and make evidence-based, supportive care recommendations [10] for patient management [11]. Apart from the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC), pediatric cancer guidelines do not include caregiver support. Furthermore, there is limited consensus in how these guidelines are applied across health systems [12]. While organizations draft guidelines to outline treatment recommendations based on existing evidence [13], the National Cancer Institute defines standards of care as treatment accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals [14]. Currently, there are no guidelines to support the implementation of standards of care for caregivers of children with cancer in the US [15]. Understanding caregivers lived experiences impacted by childhood cancer will provide valuable insight into the essential empirical guidance needed for psychosocial models of care to be effectively developed [16]. This study aims to better understand mental health supportive care needs and the impact of childhood cancer on caregiver mental health and quality of life.

Methods

Design

Using data from a comprehensive qualitative study examining family experiences with childhood cancer, we conducted a secondary thematic analysis of semi-structured interviews with caregivers of children who completed curative treatment. This inductive study design emphasizes narrative storytelling which provides caregivers an opportunity to highlight what matters most to them [17, 18]. We analyzed the mental health challenges experienced by caregivers during treatment and survivorship by highlighting especially stressful experiences that should be considered when designing and implementing caregiver support programs. A full description of the study’s methodology can be found in a previous publication [4].

Recruitment and data collection

A maximum variation sampling strategy was used to recruit study participants for interviews [17, 19, 20]. Any family member who participated in the child’s care was invited to participate. If the patient was 16 or older at the time of the interview, they were invited to participate. Families were eligible if they had a child diagnosed with cancer before the age of 15 and had completed curative treatment at least 1 year before their interview date.

Participants were recruited through a letter from an oncologist, outreach from a network of federally qualified health centers, community outreach, and national social media campaigns. All participants received additional information about the study by phone before scheduling their interview. Informed consent was obtained before the start of the interview. Participation was voluntary, and the Oregon Health & Science Institutional Review Board approved the study.

A semi-structured interview guide (Supplementary Material A) was developed based on information from a review of existing literature and consultation with an advisory group of clinicians, patient advocates, and caregivers of children who had experienced cancer. Interview questions focused on the process and perspectives of receiving the cancer diagnosis, experiences with treatment, information seeking, impact of cancer on the family, social support, and survivorship transitions. During the open-ended interviews in which participants were encouraged to focus on the issues most important to them, many brought up themes that were indicative of different types of trauma. In addition, interviewers asked about difficulties experienced during treatment as part of the a priori interview guide. Interview guide refinements were made as the study progressed and new themes were identified.

Interviews were conducted between August 2018 and January 2020 by two interviewers with doctoral-level training in qualitative methodology (EK, VC). Interviews were audio and video recorded in either the participant’s home, a location of their choosing, or remotely via a secure platform. If more than one family member was present, interviews were conducted simultaneously. At the beginning of each interview, the participant was invited to tell the story of their family’s cancer journey. Once the participant had provided their narrative, the interviewer probed topics that the participant(s) brought up and asked questions from the interview guide. Interviews lasted 90 min to 3 h. One fifty-dollar gift card was provided to each family for their participation.

Data analysis

With this secondary analysis, we explored themes that emerged after initial analysis [21], to determine the impact of pediatric cancer on caregiver mental health. Coherence was maintained between the first and secondary analyses by utilizing the original data collection [22]. A Data Use Agreement was established, data were deidentified, and all interview data were used in our analysis.

Using a grounded-theory approach [23], three doctoral-level qualitative methodology trained research team members (DB, VC, EK) independently dual-coded the transcripts using inductive thematic analysis [24]. Identified themes were deliberated among study team members using an iterative process until consensus was reached. An initial codebook was developed using preliminary themes and subthemes. Codebook refinements were made as new themes and subthemes were identified. NVivo V.12 (QSR) was used to organize data for analysis. The unit of analysis for this study was the child who had been diagnosed with cancer.

Results

Fifty-five participants (33 mothers, 15 fathers, one grandparent, and six cancer survivors) representing 39 unique childhood cancer cases were interviewed (Table 1). A wide range of cancer types are represented in this group, and most caregivers are white and female. The following analysis focuses on 38 unique cases in which caregivers were interviewed and includes 49 caregivers (33 mothers, 15 fathers, and one grandparent). The original study included one patient who was interviewed without a caregiver present and is therefore excluded from this secondary analysis.

Table 1 Patient demographics
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For this analysis, we take our cue from a mother who described her caregiving experiences as an “unexpected trauma” (#33). This informs our conceptual definition [25] of trauma and can be understood as a broad term encompassing caregiver experiences that include high emotional distress described as “difficult” (#10; father), “horrible” (#27; mother), or feelings of helplessness (#20; mother). This is supported by the operational definition of trauma, which is, in brief, “any disturbing experience that results in significant fear, helplessness, dissociation, confusion, or other disruptive feelings intense enough to have a long-lasting negative effect [26].”

Based on our analysis, we start with a presentation of firsthand expressions of caregiver trauma connected to their child’s appearance, quality of life, or behavior. Next, we outline three categorical experiences that shape trauma: witnessing or participating in procedures; forcing their child to take medications; and the inability to comfort their child during a time of need. We demonstrate how these experiences have lasting impacts on caregiver mental health. Amplifying caregiver voices highlights the contextual experiences of impaired mental health. Figure 1 provides representation of the themes and subthemes of our analysis and Table 2 presents the full range of exemplary quotes from caregivers focusing on the identified themes.

Fig. 1
figure 1

Summary of the themes and subthemes based on secondary analysis of caregiver interviews

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Table 2 Childhood cancer’s impact on caregiver mental health. Exemplary quotes from themes identified in our analysis
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Expressions of traumatic experiences

Caregivers recalled the most challenging experiences associated with their child’s cancer journey. The trajectory of trauma, and in some cases post-traumatic stress disorder, starts before the official diagnosis [4] and continues into survivorship. One caregiver (#38; mother) described her experience before the official diagnosis as “running from one place to the next with your child, who’s in agony. You know it’s an emergency, but you don’t know what’s happening…[w]e didn’t get…an official diagnosis for three days. It’s very frustrating, and it makes you feel very powerless as a parent because your number one job is to protect your child.” For another caregiver (#15; mother), her trauma emerged during treatment when she “would not leave the hospital room.” She added, “yes, I have really bad PTSD from it, from the whole experience, and everything like that.” These challenges spillover into survivorship, as explained by one caregiver (#09; father) that it “doesn’t go away, ever…I don’t think it will ever go away where you [can] just be like oh, remember that time where she had cancer back then?” Sharing the difficulty of their family’s cancer journey this caregiver (#09; father) shared “your heart’s broken and it can’t be unbroken.”

Many caregivers described specific triggering events connected to their child’s appearance, quality of life, or change in behavior. One caregiver (#21; mother) recalled her son changing from “a chubby, little happy two-year-old to this… gravely looking, sunken-cheek skeleton of my son;” no longer reflecting the child she knew. Another caregiver (#10; father) shared that “[d]uring the first two years of treatment, the only thing that I really noticed…he was just plunging deeper into this depression. He stopped caring about everything…most of the time he would just sit there crying, wanting to go home, because we were up [at the hospital] so much.” Caregivers also shared the challenges of dealing with new behaviors. One caregiver (#16; mother) described that their two-and-half year-old child was “throwing things, knocking over bookshelves…it was just rage. And that’s hard to deal with…as a parent.” Most caregivers say they wished there had been more help for these situations. These descriptions of triggering events are a gateway for understanding the mental health supportive care needs of caregivers.

Witnessing procedures

For some caregivers, the trauma of caring for a child with cancer stemmed from witnessing the administration of treatment at the hospital. One caregiver (#22; father) reflected on seeing his daughter lying in her room and the overwhelming “smell of death – that nasty dead smell when she was in the harsh treatment…[i]t was just like her whole room. I think we were sitting there going, is this right? We are poisoning our child.” Similarly, another caregiver (#35; father) recalls the first treatment when the nurse arrived “in a hazmat suit. I am thinking to myself; you are going to put that shit in my daughter’s veins? Are you kidding me?” The sheer shock of the procedures led caregivers to question treatment decisions.

In another case, a caregiver (#06; mother) recalls “day 13, just after she had had her [bone marrow] transplant. She’s bloated up to the 14.5 kilos. I wake up in the morning and they’ve got the (blow-by) on her face. She’s not doing well. I’m getting concerned. And I am like borderline about to lose myself. [A]s a mother you want to take that pain away. You want to take her place. But what are you going to do?” The caregiver explained that this was particularly difficult because her child is “suffering; [a]nd that was the hardest thing to see.” Another caregiver (#10; mother) described how her child had to endure a monthly spinal tap procedure and cried every time it was discussed and conducted. For the caregiver, this was “upsetting. I could hear the pain in his voice…[i]t was hard to watch [and] to know that there was nothing we could do about it and that it had to be done.”

Participating in procedures

In many cases, caregivers were also participants in their child’s procedures in the home and hospital. A caregiver (#23; mother) shares the traumatic memory of changing her daughters’ dressings every 3 days at home and how it “was a three-person job. We had various people in town that would come over for the tear-inducing trauma of changing out a sterile dressing…you have to hold her down and she can’t move…it doesn’t matter how much she’s screaming.” One caregiver (#26; mother) described their hospital-based experience of drawing blood “[a]nd soon as she had spiked a fever, we had to go to the hospital, we had to get a blood draw, which was what I was–it was her worst part… she could not grasp or understand, ‘[h]old still for five seconds.’ She didn’t know how to count…[t]here was a nurse to hold her arm, there was a nurse to do the draw, and there was me holding the rest of her body. I literally laid on her stomach and just held her down.” This participation turned this caregiver into the “bad guy,” altering her relationship with her child.

In some cases, caregivers questioned the aftereffects of the caregiver role in their child’s treatment. One caregiver (#27; mother) shared that the hardest thing was “the day they had to put a mask on [her son’s] face, to put him under anesthesia…he was so adamant that he didn’t want to go under that I had to…pin all his limbs down so he wouldn’t tussle. We have to do that work. But the place it puts us in emotionally and relationally with our child, it’s damaging. [W]hat’s the alternative? I don’t know if there is one.” Experiences such as these were not limited to assisting in the treatment, and in some cases, caregivers had to administer medication without provider participation.

Forcing medications

Caregivers describe their experience of administering their child’s medication and the added stress it caused. One caregiver (#01; mother) remembered telling her son, “‘Patient do it or Daddy do it.’ And this was all going to happen one, two, three, and here it comes because it just all had to happen that quick or else it would just make our lives miserable.” She added “[s]ome of those days were really hard…he would take his pills, or I would…shove them down his throat, and then turn around and catch hi[s] puke in buckets.” Some children had an adverse reaction when caregivers were too passive regarding their child’s medication. Another caregiver (#24; mother) recalled that her son ended up losing a lot of weight because “[a]t one point his nausea got so bad and we weren’t being aggressive enough with the Zofran because again, we had to hold him down to chew the pill or squirt it into his mouth.” She added that she had difficulty with the radiation-induced eye irritation medication; she had to “hold him down, open his eye, and give him eye drops three times a day for a couple of months.” In these instances, caregivers turn from nurturers and protectors to their child’s primary source of distress and pain.

Inability to comfort their child

Caregivers also experienced the inability to actively comfort their child during cancer treatment. One caregiving couple (#20; mother and father) recalled wanting to hold their 2-year-old daughter when she had numerous tubes in her body. The child’s first caregiver (mother) recounts the moment when “I start[ed] to pick her up because I just couldn’t stand it anymore and…[e]verybody’s like, no you can’t touch her yet…[j]ust that helpless feeling like, I can’t even hold my baby?” The child’s second caregiver adds, “Yeah. That was really terrible…you can’t just pick her up…that was really hard.” Another caregiver (#08; mother) explained, “the hardest thing…is because he was 16-months, nonverbal, and [t]here were times when he would just scream and cry all night and the only thing I could do was hold him.” This inability for caregivers to comfort their child led to feelings of helplessness.

The long-term impact of childhood cancer on caregiver mental health

Caregivers described the lingering impact of childhood cancer on their mental health. One caregiver (#07; mother) recalled that 3 years after her son’s treatment, she felt like “we didn’t even have an excuse then. I didn’t even want to be like ‘oh my son had cancer three years ago’…[a]nd it’s like I’m really depressed now.” Another caregiver (#01; mother), whose child was diagnosed over 9 years before her interview, was explicit that it was “the PTSD, whatever you want to call it. And I don’t know if that will diminish or if that will ever go away, especially now because new things always come up.” This uncertainty was reflected on by another caregiver (#03; father) and his “disappoint[ment] that nothing [for mental health] was offered. I don’t think anybody, any parent on the ward talked about it, getting mental health for their problems…[i]t changed everything. It never went back to normal again.”

Discussion

This in-depth look into the mental health challenges experienced by caregivers during treatment and survivorship highlights the especially stressful experiences that should be considered when designing and implementing caregiver support programs. The trajectory of trauma for caregivers of children with cancer is genuine and often long lasting. These distinct challenges are a gateway for understanding the mental health supportive care needs of caregivers and the events that trigger trauma. Survivorship does not mean a return to normal. For many caregivers, the impact of their childhood cancer experience continues long after treatment has ended.

Given the structure of our in-depth interviews in which participants were encouraged to tell their story, focusing on the issues most important to them, the identified themes reflect the experiences that stand out to caregivers as the most challenging and thus require support. Caregiver experiences with trauma connected to their child’s appearance, quality of life, or change in behavior left many wishing there had been more support for these situations. We found that caregivers must regularly transition between the role of nurturer and protector while simultaneously serving as part of the care team, which increases trauma for caregivers and the child. These traumatic events are experienced in varying degrees that necessitate mental health supportive care needs well into survivorship. In highlighting these events, we have identified key triggers of trauma.

For many caregivers, the challenging aspects of their child’s cancer treatment entailed witnessing and participating in procedures, forcing the child to comply with their cancer treatment, and the emotional toll of not being able to comfort their child. Witnessing procedures left caregivers feeling that there was nothing they could do about their child’s distress and pain. Participation in their child’s treatment was often something caregivers dreaded. Some felt guilty for having to hold their child down knowing the procedure was scary or painful or having to administer medications that were unpleasant. It left caregivers feeling helpless to comfort their child. This helplessness associated with witnessing and participating in care was described as “traumatizing times” and “hard to experience as a parent,” leading caregivers to question whether they were doing the right thing. These experiences were not limited to the hospital setting; for some caregivers, traumatic events occurred in the home, too, further blurring the boundary between roles. Actively participating in procedures, at home or in the hospital, puts caregivers in a difficult, and in some cases, impossible position with the potential to alter their relationship with their child. In some cases, participation in their child’s care led them to reflect on how their actions turned them from caregiver to “bad guy,” subsequently impacting a child/caregiver relationship centered on trust. These real-world experiences reveal the hidden and often overlooked nature of being the caregiver of a child with cancer.

The traumatic experiences of caring for a child with cancer can significantly impact caregiver mental health and caregiver/child relationships. Although the literature suggests that caregivers generally cope well [27], a recent longitudinal study reports that 28.7% of caregivers experience increased post-traumatic stress symptoms (PTSS) over time that necessitate targeted interventions [28]. Additional studies have outlined that caregivers experience clinically significant levels of anxiety, PTSS, poor health-related quality of life, or other mood symptoms [29,30,31,32,33] that may last well beyond the end of treatment [27]. Our real-world observations add to the literature by demonstrating the nature and extent of traumatic experiences. Furthermore, our data underscore that these traumatic experiences occur universally, across all cancer types, patient ages, types of residence (rural vs urban), and long after treatment has ended. Combined, these findings may help guide best practice for delivering accessible and effective integrated medical and mental healthcare.

Trauma’s pervasive nature is not limited to the hospital, and, in many cases, caregivers must continue to conduct a range of medical procedures of varying complexity in the home, further impacting caregiver burden. These findings are supported by existing literature on childhood cancer recognizing that caregivers are untrained to provide most medically related activities [1, 34]. Our findings are similar to that of other research which report that participating in medical procedures creates feelings of inadequacy and psychological trauma for the caregiver [35]. Furthermore, caregiver trauma is indelibly connected to the child and this idea is supported by the work of de Castro et al. [2], in which caregivers’ PTSS is partially mediated by the relationship between the children’s PTSS and caregivers’ quality of life.

Understanding caregivers’ traumatic experiences pre-diagnosis through survivorship can help establish and implement universal guidelines. In the US, guidelines focus on patient supportive care recommendations [10], and as stated above, with the exception of the PSCPCC, these guidelines do not include caregiver support. The PSCPCC recommends a standard of care (SOC) that includes early and ongoing assessments of caregivers’ mental health needs with facilitated access to appropriate interventions [36]. However, a national pediatric oncology social worker survey suggests that improvement in the systematic implementation of PSCPCC SOC into daily practice is needed [15]. Models of psychosocial support could provide consistency to SOC implementation for caregivers of children completing treatment [34, 37] and enhance the effective and equitable use of existing guidelines across health systems. Considering that caregivers’ PTSS mediates children’s PTSS [2], the fact that published pediatric cancer guidelines [10, 12] do not encompass caregiver support is a significant oversight.

Educating caregivers at diagnosis on the importance of accessing psychosocial services is key to addressing uncertainties. Such services must also be broadly implemented across health systems, be readily accessible, and convenient for caregivers to access. Considering the traumatic experiences associated with turning from protector to the perpetrator of their child’s primary source of distress and pain, psychosocial support from the onset of treatment is a vital aspect of caregiver support. An additional educational component should include caregiving resources during childhood cancer that allows caregivers to gain confidence in their treatment decisions and strategies for navigating changes in quality of life and behavioral challenges.

Clinical implications

Caregivers require guidance on the traumatizing aspects of pediatric oncology care to address feelings of helplessness and to mitigate the risk of damaging the caregiver–child relationship. This includes reconsidering asking a caregiver to hold down their child for a procedure. For such situations, providers and caregivers could instead collaboratively create a resource plan to inform the medical team of caregiver expectations and preferences for procedural participation. In addition, hiring trained mental health professionals is key to forming a comprehensive care team. As such, a model for mental healthcare would include education on available support resources, implementation of a resource plan, and trained support staff. Pediatric oncologists do not receive mental health training and do not have the capacity to fulfill this need. With additional support for caregivers and providers, the inherent trauma of childhood cancer may be reduced throughout the cancer journey.

Study limitations

Allowing study participants to share their experiences with cancer and highlighting what they believe to be the most important aspect of their experience reveals the traumatic impacts directly associated with their child’s cancer journey from pre-diagnosis to survival. However, our study has several limitations, including potential recall bias. In some cases, caregivers were not interviewed separately, which may have led some participants to hold back experiences that could have been upsetting to others who were present during the interview. Furthermore, the study population does not allow for subgroup analysis. Further research is needed to evaluate caregivers’ experiences from diverse subgroups to determine if there are other traumatic experiences than those reported here. Additional research is needed to understand how best to implement these recommendations to inform guidelines aimed at reducing the negative impacts on caregiver mental health and quality of life in relation to childhood cancer.

Conclusion

This secondary analysis of qualitative data fosters a more in-depth understanding of the long-term impact that traumatic experiences of childhood cancer have on caregivers. Findings reveal firsthand expressions of caregiver trauma connected to their child’s appearance, quality of life, or behavior. These expressions are expanded across three categorical experiences that shape trauma: having to witness or participate in procedures; forcing their child to take medications; and not being able to comfort their child during a time of need. Increasing awareness of these challenges and developing effective and innovative ways to provide support to caregivers is essential. The experiences reported across this qualitative study provide important insight on the necessary content for effectively designing and implementing caregiver support programs to reduce caregiver stress and burden.