Characterizing the need for childcare support for cancer patients through health care providers’ experiences: a qualitative study.

doi:10.21203/rs.3.rs-4707911/v1

Download PDF

Research Article

Characterizing the need for childcare support for cancer patients through health care providers’ experiences: a qualitative study.

https://doi.org/10.21203/rs.3.rs-4707911/v1

This work is licensed under a CC BY 4.0 License

You are reading this latest preprint version

Purpose

Approximately 1 in 5 newly diagnosed cancer patients are between the typical childrearing ages of 20 and 54. As such, a significant portion of cancer patients are also parents to young children (age < 18). This study aims to characterize the need for childcare support for cancer patients from the perspective of healthcare professionals providing care at a major Canadian cancer center.

Methods

Healthcare providers (HCP) were invited to partake in semi-structured telephone interviews, which were conducted using an interview guide. The interviews explored what specific benefits supportive childcare interventions could offer, as well as what might constitute optimal delivery. Interview transcript data was interpreted using thematic analysis.

Results

In total, 28 HCPs participated in interviews between April and May 2022. A wide range of providers were engaged, including physicians, nurses, and allied health professionals. Providers indicated that the introduction of supportive childcare services could have benefits including reduced stress for their patients, improved system efficiency and treatment compliance, and reduction of provider burnout.

Conclusion

These findings indicate that childcare issues are perceived by HCPs as a source of stress for cancer patients with children, and that benefits may be associated with the introduction of supportive childcare services. As such, cancer centers could consider the implementation of such services as a way of providing patient-centered care.

on-site childcare

parents with cancer

psychosocial support

healthcare provider perspective

Upwards of 14% of patients with cancer worldwide are also parents to children under the age of 18 [1]. This number may rise as the average age of childbearing increases, and as patients are diagnosed earlier and living with cancer for years [1–3]. Patients with children face significant psychosocial stress, often viewing themselves as parents first and as people with cancer second, which leads to role strain, exhaustion and burnout [4–6]. Guilt is common, with parents feeling unable to meet their children’s needs and feeling pressure to maintain normalcy despite changing circumstances [5, 7–11]. Parents with cancer worry that they may not live long enough to raise their children to adulthood, and even post-treatment, fear recurrence more than patients without children [12, 13].

In this light, the importance of adequate support for these patients becomes clear. The support needs of parents with cancer have previously been investigated, with parents describing increased psychosocial needs (e.g. counselling), and instrumental needs (e.g. childcare or household help) [14]. It is common for cancer centers to offer patient counselling services to address patients’ psychosocial needs, but much less common to offer logistical support for their instrumental needs, such as on-site childcare services. We previously conducted an environmental scan which found that across a sample of 57 comprehensive cancer centers in North America, only one center had on-site childcare available to patients [15]. This is not reflective of a lack of need, rather several studies suggest that the coordination of childcare with healthcare appointments is one of the most overwhelming responsibilities faced by parents with cancer [2, 12, 16]. The need for support is even greater in patients with low social supports, single parents, and patients with low health-care related quality of life [17]. This points to a gap in the supportive care that is offered to parents with cancer.

Although the childcare needs of patients have been previously explored from the patient perspective, the perspectives of healthcare providers (HCPs) have not been well described. Understanding the provider perspective is key in developing and implementing childcare solutions, as well as in optimizing HCPs’ wellness as they provide care and support for psychosocially complex patients. Thus, we interviewed HCPs to better explore their perspectives on this complex problem as well as on how this supportive care need may be best met.

1. Recruitment Strategy

This study purposefully sampled HCPs at a major Canadian cancer center to engage a wide range of individuals, including medical, surgical and radiation oncologists, general practitioners, psychiatrists, radiation therapists, registered nurses and social workers. Firstly, an email was sent to medical staff requesting voluntary participation in the study. In addition, department heads were asked to identify HCPs with broad experience to ensure that the feedback obtained was representative of the depth and breadth of specialties providing care at the center in question, who were also approached by email. There were no additional inclusion criteria. From these two sources, an initial list of participants was generated. Following this, a snowballing recruitment technique was used, with provider interviewed being asked to nominate other HCPs to participate in the study.

2. Ethics and Consent

Ethical approval for this project was obtained prior to study recruitment. At the time of recruitment, an email was sent to participants including information about the study and a consent form. Consent to participate was confirmed verbally at the beginning of each telephone interview, and it was made clear that withdrawal was acceptable at any time. No participants who were approached withdrew consent.

3. Data Collection

Data was collected between April and May of 2022 using telephone interviews. Interviews were conducted with a semi-structured interview guide, developed through collaboration with a multidisciplinary team including a patient partner (Table 1). This guide aimed to evaluate the demographics of interviewees and their personal assessment of patient-related and system-related impacts associated with the unmet childcare needs of patients receiving care. Interviews also explored what might constitute potential solutions. Interviews lasted between 15–45 minutes and were audio-recorded to facilitate transcript analysis.

4. Data Analysis

Following interviews, audio-recordings were transcribed verbatim. Using NVivo 10 software, transcripts were coded through the identification, analysis and interpretation of patterns of meaning within the data to make sense of commonly expressed feelings, sentiments and words. An initial set of codes was generated to organize data by KP. To ensure validity and reliability, secondary coding was independently undertaken by JL, who had not been involved in interview guide development. Following this, discussions were held to ensure coding consensus, and overarching themes were identified. These themes were then presented to PI, which allowed for feedback and for the generation of the final main themes. Participants were interviewed until recurrence was noted in the themes related to childcare needs of parents with cancer, after 28 interviews.

Table 1

Interview Guide
HCP Demographics Can you describe your role and the patients in your care?
Patients’ Current Childcare Strategies What childcare strategies do you perceive are being used by your patients with children during their cancer journey? Are you aware of any childcare supports available to patients in this position?
Identification Of Patients Needing Childcare Support Can you recall one or more of your patients who might have benefited from additional childcare support during their cancer treatments? Tell me about these patients. What characteristics might help to identify patients who might require extra supports?
Patient Impacts of Childcare Support If additional childcare supports could be provided to these patients, what personal impacts do you think that this would have? What effects might it have on these patients’ children?
System Effects of Childcare Support Do you think that introducing additional childcare supports for cancer patients could have any impact on systemic efficiency?
Provider and Care Effects of Childcare Support Have you ever had to conduct an appointment with a patient while their child was present in the room? If so, do you feel that this had any impact on the care you provided? Did this have any impact on you?
Barriers to Childcare Support Do you think that there are any barriers that exist to introducing additional childcare supports for cancer patients?
Future Visions If there were no barriers to establishing additional childcare supports for patients, what would the ideal support solution look like?

Characteristics of Healthcare Providers

A total of 28 HCPs (with years in practice ranging from 10 to 35 years, ages ranging from 40 to 65, and female and male providers interviewed) were interviewed: 5 medical oncologists, 2 surgical oncologists, 6 radiation oncologists, 2 psychiatrists, 1 radiologist, 2 general practitioners in oncology, 2 nurse practitioners, 4 registered nurses, 3 radiation therapists, and 1 social worker.

Key Themes

Key themes identified from the thematic analysis of interviews were as follows:

Effects of unmet childcare needs on patients
Effects of unmet childcare needs on children
Effects of unmet childcare needs on HCPs
Effects of unmet childcare needs on the system
Future visions for potential childcare solutions for patients.

These key themes are represented schematically in Figure 1.

Perceived Effects on Patients (Table 2)

1. Increased emotional stress

Providers frequently reported that they perceived unmet childcare needs led to increased emotional stress for patients. They spoke to the logistical stress associated with the coordination of healthcare appointments and childcare. Even where patients had supportive partners or others who could take on childminding responsibilities, HCPs noted that this created situations where patients had to attend appointments alone, as their supportive partners and friends were otherwise occupied with looking after patients’ children.

2. Financial Toxicity

Childcare needs were felt to contribute to financial toxicity for cancer patients, with some patients having to pay privately for additional childcare services, and other patients’ spouses needing to take time off work. Many HCPs noted that this might disproportionately affect already marginalized patient groups, including single parents, new immigrants, patients travelling from rural areas to access care, and patients with comorbid mental health concerns.

3. Effect on Medical Outcomes

Several HCPs questioned whether the impact of childcare burden could translate into poorer medical outcomes for patients. HCPs described patients having to cancel appointments and even foregoing treatment in some cases due to childcare emergencies. HCPs described a tension between attending appointments and the desire of patients to continue to provide support to their own children.

Table 2

Illustrative Quotes – Perceived Effects on Patients
Increased Emotional Stress	“Her biggest worry wasn't that she got diagnosed with cancer, but the fact that she doesn't have anyone to take care of her kids while she's getting treatment.” (P5)^a “…if you can at least promise that [a cancer patient’s] children are being looked after, and they can have a conversation with their doctor without distraction? That would be huge.” (P13)
Financial Toxicity	“So you know, if you also need to send your kid to more daycare, for instance, or you need to have a babysitter come over and watch them, or alternatively, your husband has to stop his work in order to, you know, take care of your kids or whatnot. And you've also stopped your work because you have cancer, you know, the financial toxicity starts to mount.” (P27)
Effects on Medical Outcomes	“I think it would have made things a lot easier for her because I don't even think that she [a patient] had the full course of treatment because of childcare issues.” (P14) “It doesn't matter how fancy your cancer treatment as if patients can't attend the appointments, then it doesn't make a lot of difference.” (P22)
a. P5 refers to HCP #5 (anonymized participant)

Perceived Effects on Children (Table 3)

1. Increased Stress for Children

Many HCPs described situations where patients brought their child to an oncology appointment for lack of a better solution. Many described bad news being broken to patients with their child in the room; others described children watching their parents undergo physical examinations or procedures. In general, children were exposed to potentially traumatic information and scenes as a direct result of insufficient childcare support for their parents.

2. Potential for Supporting Children

When asked about potential benefits of instating childcare supportive services, several HCPs felt that this could serve as a way to identify and support children who were struggling with their parents’ diagnosis and in need of additional supports. HCPs noted that while there were already some supportive programs for children in place at the cancer centre they worked at, such as art therapy, childcare support services may increase the uptake of these programs for those who might not otherwise access the service.

Table 3

Key Themes – Perceived Effects on Children
Increased Stress for Children	On breaking bad news to a patient with the child in the room: “I remember looking at the son and yeah, even dad, and so dad's eyes like are pretty welled up, you know. And then I looked at the son, and I just knew that, like, his life would change forever, for that moment, because his mom was trying to be so brave. And I don't know what that car ride looked like home, but I'm pretty sure, I'm pretty sure that they were all trying to put on their best face in front of me. And I don't think that that son will ever forget that moment. I'll never forget that moment, you know?” (P27) “I've had it a couple of times where I've been in the injection clinics, and the mom has to bring her kid. And usually they're like, under five, I would say, and the injections that we give in those clinics, they're quite large needles. And I feel like I don't know, like, the kids obviously don't want to see that.” (P24)
Potential for Supporting Children	“You know, depending on the age of the kids, like if they're maybe late elementary years, perhaps some of those kids are struggling emotionally, and so having childcare could give them an opportunity to meet with other children, who have parents with cancer too. And maybe perhaps in that childcare setting, perhaps they can start being involved in some of the programs that we have here, like, I think there's art therapy for kids and even perhaps reaching out to be able to be comfortable to speak with a counsellor.” (P27)

Perceived Effects on HCPs and on Care (Table 4)

1. Children in Healthcare Appointments: Distraction, Reduced Communication, and New Responsibilities for HCPs

HCPs described that the presence of children in healthcare appointments disrupted the patient-provider relationship by introducing a third set of needs: those of the child. This reduced effective communication in appointments, as patients would often not be able to speak freely in front of their children, often calling back after the appointment to ask further questions. HCPs, similarly, felt unsure about what language to use in front of patients’ children. Some oncologists recounted making rubber gloves into balloons to keep children occupied, while nurses and radiation therapists described sometimes watching children while their parents were undergoing treatment.

2. Emotional Distress for HCPs

Some HCPs described that the presence of children in healthcare appointments was distressing for them as well. Many interviewees had experienced breaking bad news to a patient in front of their child and described this as very upsetting. Some felt that it was more difficult to operate objectively and maintain emotional distance from patients with their children in the room, especially when HCPs had children themselves.

3. Benefits of Supportive Childcare Programming on Medical Care

HCPs described that introducing supportive childcare programming could help to create a more patient-centered and holistic approach to care. Some felt that this would help to remind HCPs of their patients’ responsibilities beyond cancer treatment, and to show patients that their cancer care team cared about them and their family, thus increasing patient trust in their HCPs and care center. Some suggested that patients might be more likely to attend ancillary appointments such as counselling or support groups if they had additional childcare supports in place. HCPs also described that having a visible on-site childcare center could improve morale for all patients and HCPs at the cancer center. Some HCPs suggested that an on-site childcare center could also serve as a backup option for staff childcare emergencies, which could have a direct positive impact on HCPs and an indirectly positive impact on their patients as a result.

Table 4

Key Themes – Perceived Effects on HCPs and on Care
Children in Healthcare Appointments	“I mean, I have tried to blow up, you know, rubber gloves to make roosters to entertain kids and, and all that kind of stuff, and you know it's distracting for me as well. I have to be very careful about the language I use.” (P17) An RN describes watching children during a parent’s appointment: “Most of the time she had daycare arranged, but sometimes, she would come with a kid to the clinic, so we already knew the kid. So we [the staff] would take turns and take care of the kid for 20 minutes, while the mom had the treatment. And it got to, to the point, that kid, the kid after that he wanted to play a little bit more, but we haven't got a toy box. We try to be as kid friendly as possible, right? We're not necessarily very successful in that. But the kids started to get with used to us, and trying to stay a little bit more, five more minutes! At the same time I knew that this is, in this moment, this is the most important thing for this patient.” (P6)
Reduced Communication in Healthcare Appointments	“I think that the patient is never as honest as you need them to be when the child is in the room. So they don't really tell you how they're actually doing. I think that they spend a lot of time sugar-coating their symptoms. They speak very vaguely, or they speak in euphemisms as they speak, you know, you can't have a legitimate, honest, forthright conversation when there's a child in the room. So you end up, you know, with compromised communication.” (P23) “As a physician, I think that we rely a lot on like, one of the most important tools in our toolkit is really that open, honest dialogue between the doctor and the patient and feeling like you're getting the truth and then you're speaking your truth. So if there's a barrier, if that barrier was a language barrier, that we try to overcome that by having an interpreter and things like that. But if you're if that barrier is the child that's standing between you and your patient it's very, that's very difficult, you don't have any idea that you can trust what's being said, and you yourself start choosing, I start choosing my words differently in front of a child - things that I would want to say to the patient, you know, I suddenly, I'm using different language, and I'm feeling that I really can't tell the whole truth either.” (P18) “Well, the patients try really hard to keep a stiff upper lip, you know, they try not to cry, and they try not to get, you know, get distressed and stuff. And it often leaves a lot unsaid. So after they've gone, you end up having to deal with a load of phone calls and saying, you know, this patient wants to talk again, she couldn't, couldn't talk to you, because the children being there. And then, so you have another 14 minutes on the telephone with them, which is not ideal at all, it might be much better if we could do it in person and let them cry.” (P11)
Emotional Distress for HCPs	“Right. Yeah, I mean, it's certainly more stressful and brings home how truly devastating what we're saying is. So that definitely creates an increased stress and distress for me as a provider, for sure. You know, one of the ways we manage to tell people bad, horrible things all the time is to create some distance. So it's not that it's not meaningful, but that you don't necessarily identify too carefully, too closely with the patient. And having a child there makes that much more difficult.” (P23) “I think it hit me - it's hard to explain it. I don't know. I think like I could feel her pain in a way, I could feel the pain as she was feeling. I basically was trying to do everything I can to make sure that she doesn't have to worry about her kids. You know, so she could focus on herself. It was a very, very painful day.” (P27)
Benefits of Supportive Childcare Programming on Care	“So it's sort of a good reminder for our organisation that we are often helping not just the patient but also a family. And that we care about the whole family. And hopefully, that would kind of resonate for the patients and the families too.” (P14) “I think it would speak to a sense that the cancer centre you know, cares about [the patient]. And I think that would be a psychological benefit. Sort of that sense of trust. I think for many people, the hardest thing about having cancer is loss of control. Right? Lots of people feel that even if ultimately, it's a terrible disease, that they're putting their life in the hands of someone else, that immense amount of trust that they're handing over. Right, and I think that if there was childcare, that would be this kind of subconscious foundation, building of that trust that hey, you know, they care enough about me that, you know, they've, they understand the impact on my life experience, and are right there trying to mitigate it. So I think it would be subconscious. But real.” (P3) “I think it'd be lovely for the parents or the grandparents to look out the window and see these lively, beautiful children running around, where even staff can hear the cheerful cheers of the kids playing, you know. I think it would lift spirits.” (P15)

Perceived Effects on the System (Table 5)

1. Increased Efficiency

HCPs described that introducing supportive childcare programming services for patients could improve efficiency by reducing appointment cancellations and rescheduling. Many described that at present, they would make specific scheduling requests for patients with children, creating added administrative burden which could be alleviated with the introduction of supportive services.

2. Hidden or Unclear Need for Childcare on a System Level

Many HCPs described that as appointment changes are handled by administrative staff, not HCPs, it was challenging for them to estimate the overall impact of childcare on missed appointments. Some felt that only a minority of patients would reschedule or miss appointments due to childcare needs, while others suggested that a larger proportion of patients would use the service. Some interviewees described situations where their patients were grandparents and also primary childminders. Some response variation was seen across HCPs dealing with different patient demographics, for example, one radiologist who conducted screening mammograms described that a significant proportion of their young female patients had unmet childcare needs.

Table 5

Key Themes – Perceived Effects on the System
Increased Efficiency	“I mean, being a parent myself, it doesn't take very much to happen with the kid before everything has to drop. […] There's no other option, like, your kid needs you. So I can easily see people missing appointments or being late for their appointments.” (P20) “I can see that a large number of my younger patients certainly even add into the notes initially, that they want to reschedule radiation appointments just because of childcare, and then if you kind of look through the numbers, you can see that they actually kind of rebook a number of times too. So yeah, so I think absolutely for compliance and like system efficiency. There, are there major gains to be given to that.” (P7)
Hidden or Unclear Need for Childcare on a System Level	“When I see patients, and thinking about who accompanies them - I don't ask how they've gotten there. So I have no doubt that there are things that I'm not hearing, where they have just made it happen.” (P12) On patients with less visible childcare needs: “I think there's there's this whole group of older patients too, that we don’t think about with childcare, right? Like, most likely their children are taking care of them. And then that group, the caregiver group, would need the help. I have one patient, you know, taking care of their older dad, metastatic lung cancer, but the kid has, you know, soccer practice, and you're trying to make an appointment for treatment but they can't make that work, because they're being pulled at both ends. And they're trying to support both people who need them. So you have the patients themselves, who may need the services. But then you also have to consider the whole family.” (P27) On grandparents taking on a childcare role: “I had a patient coming in for daily treatments. His role was to pick up the grandkid after school, right, because of their family or daughter's, you know, situation. He was the person that was being relied on for the kids pickup. Well, he was like, I need to leave this building at X amount of time to get back home, because no one else is going to pick up the kid. Right? You wouldn't have expected that because this is a male lung cancer patient in his like mid 60s.” (P26) On patients expressing their childcare needs to their HCPs: I suspect that often patients will mention to the physician, or these were the impediments to my, or to the difficulties into making my you know, 25 radiation appointments or something like that. But maybe they tend to focus their feedback on things that they think we can control. So they'll mention things like, you know, parking but maybe not childcare, likely because they don't think I could do anything about it. I do know that one of the concerns that parents often are talking about is feeling very tired. Feeling very, as though it's difficult to meet the needs of their kids. And so they might not explicitly say I'm lacking childcare, but more factors around that, that, that childcare could support.” (P28)

Future Visions (Table 6)

1. Location of Childcare: In House vs. On Site

Many HCPs described advantages to introducing on-site childcare support. This could provide an avenue by which children struggling with their parent’s diagnosis could be identified and supported by staff, and have access to peer support. Logistically, on-site childcare would allow for centralization and optimization of resources and staff. Several HCPs described that childcare might be especially beneficial for appointments with an inflexible schedule and of variable length, such as those for chemotherapy and radiation treatments. In these cases, it was felt that having an on-site childcare center would be superior to at-home support, as the latter might have scheduled dismissal times. However, an at-home model was felt to provide the unique benefit of a familiar environment for children. Further, this model could spare patients the challenge of having to pick children up directly after appointments if feeling unwell (i.e. after chemotherapy). At-home supports could potentially be corralled to help with childcare needs beyond babysitting, such as school pickups. In general, many described that a hybrid model would be ideal.

2. Cost of Childcare Services

There was no clear consensus regarding whether or not supportive childcare programming should be a paid service. Those in favour suggested that this could alleviate funding concerns and could help to ensure that patients would value the service and be motivated to keep appointments. However, other HCPs felt that charging for a childcare service would increase financial burden for patients, and could seem incongruous when compared to other free supportive services provided by the cancer center. Some did suggest a ‘pay as you are able’ system, but many also noted that this could create an uncomfortable situation for patients.

3. Barriers to Establishing Childcare Services

Barriers listed by interviewees to the introduction of supportive childcare services included a lack of physical space for on-site childcare as well as financing, staffing, legal and logistical barriers. Some HCPs described that one barrier could be the perception of staff that only a small proportion of patients would benefit from such a service.

Table 6

Key Themes – Future Visions
Location of Childcare: In House vs. On Site	“You know, depending on the age of the kids, like if they're maybe late elementary years, perhaps, you know, some, some of those kids are struggling emotionally, and so having childcare, you know, could give them an opportunity to meet with other children, who have parents with cancer too.” (P27) “I think in the patient's home would be a good option, because then the children will not have to be in an unfamiliar environment. And so that would be easier for them, to not have to be scared of a new place, and to not have to take time to warm up. Especially if they're younger. But then, I think with COVID, that might be kind of challenging, and additionally in some cultures, in certain populations, patients don't like people coming into their home. So having the option of having an on site, so like within the building, so that they don't have to walk a block or two blocks and walk back and add more time and logistics to to the appointment would be really good there. So I think it's a combination, that would be best? We just want to keep it as easy as possible.” (P24)
Cost of Childcare: Paid Service vs. Not	“I think in Canada, where we have a socialised healthcare system, it's kind of hard to charge people money. And I think we would be looking at a central part of, of a person's being, not just looking at the disease itself, but looking at, like the social situation in the patient. So, I would prefer that it wouldn't have a charge. Because we're looking out for the whole patient, not just the disease. And, I mean, but at the same time, real estate is very expensive. And sometimes you just have to be financially, somehow be able to sustain a service like this. If you're only relying on philanthropy, or volunteers, sometimes, I worry that even a great program can be shut down, because there's not enough support. And that would be a great loss for patients. It's a balance, I think.” (P23) “I mean, we would all say that even $5 a day might not be a problem. But you can imagine if you had come for 25 appointments times $5. For some patients, that would be a lot of money, and it may just make the difference between, I don't know, making rent or having having groceries in the fridge for a week. Definitely, you don't want it to be exclusionary.” (P19) On a pay as you go system: “And then it becomes also too, like, if you have a mode where some people are paying and some people aren't - it always also becomes a bit of a two tiered system, like are you one of the paid kids? Or aren't you one of the paid kids?” (P24)
Barriers to Establishing Childcare Services	“Oh, well, the reality is, we are so short staffed for everything. I mean, our clinical, our clinical need is so incredibly high, it would be very hard to earmark new funds for something like this, when clinically, we're just desperate and and our staff is burning out.” (P23) “And I suppose the last one that comes to mind is just like, risk for liability. You know, it's a big responsibility, taking care of kids. And so I'm not sure that a cancer centre would really want to take on that. They might view it as unacceptable risk. It's the risk that things go badly.” (P13)

Nearly a fifth of cancer patients worldwide are also parents to young children, and as the median age of parenting increases, this number has the potential to grow [1]. This qualitative study has explored the experiences of HCPs in providing cancer care to parents, and described consequences of unmet childcare needs for patients, children and HCPs alike. This study provided new insights into the healthcare provider perspective on patient childcare needs, and carries implications for the introduction of supportive interventions which could help to improve care for this patient population.

Some issues identified in this study have previously been described in the literature; for example, the increased emotional distress experienced by patients struggling with childcare. However, this study shed new light on some previously under-described consequences of unmet childcare needs of patients. For example, many physicians described having to conduct patient encounters with children present as a consequence of childcare emergencies for patients, and expressed worry that this impacted the quality of care they provided due to distraction and reduced effectiveness of communication. This worry is not unfounded: research into the communication behaviors of hospital workers has demonstrated that an interval of as few as 10 seconds between an intention and an interruption can result in a provider forgetting to carry out a task, and incident-monitoring studies have shown that approximately half of adverse events in the primary care clinic setting are related to poor communication [18, 19]. The potential for medical error is clear, suggesting that unmet childcare needs for patients are important to address from a patient safety standpoint.

Another new finding from this study was the emotional distress experienced by HCPs caring for patients struggling with childcare. Many interviewees had experienced breaking bad news to a patient in front of their child, describing this as “horrifying” and “painful”. Several expressed that the presence of a child in the room made it difficult to create emotional distance between themselves and their patients, impairing their ability to effectively cope with the emotional burden of their work. Vicarious traumatization is a phenomenon that has been previously studied in several healthcare provider populations, including oncology nurses and oncologists, and refers to the secondary trauma experienced due to empathetic engagement with trauma survivors, where cancer diagnosis is considered a traumatic event [20–22]. Vicarious traumatization is more likely where individuals’ regular coping mechanisms are disrupted, as in the situations where patients’ children were present for bad news conversations. Ultimately, increased rates of vicarious traumatization led to increased provider burnout, which has individual implications (increased rates of mental illness, substance abuse, and suicide) as well as systemic implications (fewer practicing HCPs, increased costs, and healthcare system strain) [22]. As such, addressing childcare needs could have significant downstream effects.

One area of significant response discrepancy among HCPs came about when interviewees were asked about what might constitute ideal support. There was no consensus as to whether childcare services should be associated with cost to the patient, as well as whether at home vs. on-site childcare supports would be superior. This is perhaps not surprising, as HCPs can only to some extent speculate on what would be most useful to their patients. A correlate study in our research group is focused on elucidating the patient perspective on this issue [23]. When asked about barriers, some suggested that the perception of staff that only a small portion of patients might benefit from such a service could be an important barrier to implementation of supports. Certainly, questioning around the system-level benefits of childcare revealed that most HCPs felt unsure of how many cancer patients were affected by this issue. When asked about what proportion of their patients struggled with childcare, most initially stated "a minority", but several then qualified this statement by referencing groups that are not traditionally thought of as primary childminders, such as grandparents, and acknowledged that likely some patients had invisible childcare needs they were not aware of. When asked about demographics that might particularly benefit from support, nearly unanimously, HCPs first listed "young women", implying that to some extent, the childcare needs of fathers and other non-mother caregivers are not top of mind. All of this provides interesting anecdotal evidence for the hidden need for childcare, and indicates that a key part of establishing a solution to the childcare problem will involve the careful delineation of patient need in future studies.

While further information is required to inform development of supports, raising awareness of this issue could benefit patients in the meantime. Many HCPs suggested that one benefit of an on-site childcare center is that this would act as a visual reminder to staff of the social context of their patients. In the same vein, many interviewees remarked that even the process of participating in the present study had given them food for thought, and suggested that in the future they might inquire more about their patients’ barriers to appointment compliance, or about how they could better support their patients in attending future appointments. In this way, the discussion of childcare needs among HCPs is shown to be valuable in and of itself, as it raises awareness of a phenomenon that affects both patients and HCPs, and ultimately has the potential to result in more holistic patient care.

The present study is not without limitations. No new codes were generated after interviewing 28 participants, but this is perhaps reflective of all participants’ working in the same large urban cancer center, who may as a result share commonalities in their experiences. Different conclusions might have been reached had the study population included HCPs across multiple centers of differing sizes and in diverse regions. However, arguably patients receiving care and living in a larger urban setting may have more access to childcare resources than their rural counterparts, and so perhaps this study’s conclusions regarding patients’ childcare challenges would only be reinforced more strongly with a broader subject group inclusive of HCPs working in smaller and more rural centers. Ideally, however, future studies should expand and diversify the subject group to obtain more generalizable results.

Introducing supports for cancer patients with children could reduce the emotional distress and financial toxicity that disproportionately affects this patient group. The present study has explored the experiences of HCPs in caring for patients who are parents through semi-structured interviews. Beyond describing the effects of unmet childcare needs on patients, this work newly illuminates the impacts on healthcare professionals, including the potential for medical error and provider trauma. The system-level impacts of childcare, as well as the extent of the childcare need in the cancer patient population, remain areas in which further investigation is needed, as to inform the development of supportive childcare interventions for patients.

Funding: The authors did not receive support from any organization for the submitted work.

Competing Interests: The authors have no relevant financial or non-financial interests to disclose.

Author contributions: All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by Katherine Preston and Jim Li. The first draft of the manuscript was written by Katherine Preston and all authors commented on previous versions of the manuscript. Supervision throughout was conducted by Paris-Ann Ingledew. All authors read and approved the final manuscript.

Ethics approval: This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the UBC BC Cancer Research Ethics Board (May 5 2021; H20-03984).

Consent to Participate: Informed consent was obtained from all individual participants included in the study.

Consent to Publish: The authors affirm that research participants provided informed consent for publication of quoted interview materials.

Availability of data and material: The datasets generated and analyzed during the current study are not publicly available due to confidentiality but are available from the corresponding author on reasonable request and pending ethics approval.

Code availability: Figure 1 was created using Microsoft Word.

Inhestern L, Bultmann JC, Johannsen LM, Beierlein V, Möller B, Romer G, Koch U, Bergelt C (2021) Estimates of Prevalence Rates of Cancer Patients With Children and Well-Being in Affected Children: A Systematic Review on Population-Based Findings. Frontiers in Psychiatry 12:765314. https://doi.org/10.3389/fpsyt.2021.765314
Rashi C, Wittman T, Tsimicalis A, Loiselle CG (2015) Balancing illness and parental demands: Coping with cancer while raising minor children. Oncology Nursing Forum, 42(4):337-344.
Semple CJ, McCance T (2010) Parents’ experience of cancer who have young children: A literature review. Cancer Nursing, 33(2): 110-118.
Campbell-Enns HJ, Woodgate RL (2012) Decision making for mothers with cancer: Maintaining the mother-child bond. European Journal of Oncology Nursing, 17(3): 261-268.
Duric VM, Butow PN, Sharpe L, Boyle F, Beith J, Wilcken NRC, Heritier S, Coates AS, Simes RJ, Stockler MR (2007) Psychosocial factors and patients’ preferences for adjuvant chemotherapy in early breast cancer. Psycho-oncology, 16(1): 48–59.
Nilsson ME, Maciejewski PK, Zhang B, Wright AA, Trice ED, Muriel AC, Friedlander RJ, Fasciano KM, Block SD, Prigerson HG (2009) Mental health, treatment preferences, advance care planning, location, and quality of death in advanced cancer patients with dependent children. Cancer, 115(2): 399–409.
Ernst J, Gotze H, Krauel K, Romer G, Bergelt C, Flechtner HH, Herzog W, Lehmkuhl U, Keller M, Brahler E, von Klitzing K (2013) Psychological distress in cancer patients with underage children: Gender-specific differences. Psycho-oncology, 22(4): 823-828.
Kim Y, Baker F, Spillers RL, Wellisch DK (2006) Psychological adjustment of cancer caregivers with multiple roles. Psycho-oncology, 15(9): 795-804. https://doi.org/10.1002/pon.1009
Fisher C, O’Connor M (2012) Motherhood in the context of living with breast cancer. Cancer Nursing, 35(2): 157-163. https://doi.org/10.1097/NCC.0b013e31821878a8
Coyne E, Borbasi S (2007) Holding it all together: Breast cancer and its impact on life for younger women. Contemporary Nurse, 23(2): 157-169. https://doi.org/10.5172/conu.2007.23.2.157
Moore CW, Rauch PK, Baer L, Pirl WF, Muriel AC (2015) Parenting changes in adults with cancer. Cancer, 121: 3551–7. https://doi.org/10.1002/cncr.29525
Cohen L, Schwartz N, Guth A, Kiss A, Warner E (2017) User survey of Nanny Angel Network, a free childcare service for mothers with cancer. Current Oncology, 24(4): 220-227. https://doi.org/10.3747/co.24.3638
Billhult A, Segesten K (2003) Strength of motherhood: Nonrecurrent breast cancer as experienced by mothers with dependent children. Scandinavian Journal of Caring Sciences, 17(2): 122-128. https://doi.org/10.1046/j.1471-6712.2003.00202.x
Inhestern L, Johannsen LM, Bergelt C (2021) Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs. Frontiers in Psychiatry, 12: 765327. https://doi.org/10.3389/fpsyt.2021.765327
Preston K, MacDonald M, Giuliani M, et al (2022) Mapping childcare support for patients at a sample of North American hospitals and cancer centers: an environmental scan. Supportive Care in Cancer, 30: 593–601. https://doi.org/10.1007/s00520-021-06460-x
Connell S, Patterson C, Newman B (2006) Issues and concerns of young Australian women with breast cancer. Supportive Care in Cancer, 14: 419–426. https://doi.org/10.1007/s00520-005-0003-8
Hammersen F, Pursche T, Fischer D, Katalinic A, Waldmann A (2021) Psychosocial and family-centered support among breast cancer patients with dependent children. Psycho-Oncology, 30: 361-368. https://doi.org/10.1002/pon.5585
Parker J, Coiera E (2000) Improving clinical communication: a view from psychology. Journal of the American Medical Informatics Association, 7(5): 453-461. https://doi.org/10.1136/jamia.2000.0070453
Bhasale AL, Miller GC, Reid SE, Britt HC (1998) Analysing potential harm in Australian general practice: an incident‐monitoring study. Medical Journal of Australia, 169(2): 73-76.
Gieseler F, Gaertner L, Thaden E, Theobald W (2018) Cancer Diagnosis: A Trauma for Patients and Doctors Alike. The Oncologist, 23(7): 752-754. https://doi.org/10.1634/theoncologist.2017-0478
Sinclair HAH, Hamill C (2007) Does vicarious traumatisation affect oncology nurses? A literature review. European Journal of Oncology Nursing, 11(4): 348-356. https://doi.org/10.1016/j.ejon.2007.02.007
Cass I, Duska LR, Blank SV, et al (2016) Stress and burnout among gynecologic oncologists: A society of gynecologic oncology evidence‐based review and recommendations. Obstetrics & Gynecology Survey, 71: 715–717.
Li ZHJ, MacDonald K, Preston K, Giuliani M, Leung B, Melosky B, Simmons C, Hamilton S, Tinker A, Ingledew PA (2023) Evaluating the childcare needs of cancer patients undergoing radiation therapy. Supportive Care in Cancer, 31(8): 463. https://doi.org/10.1007/s00520-023-07923-z

No competing interests reported.

Download PDF

Reviews received at journal
20 Aug, 2024
Reviewers agreed at journal
19 Aug, 2024
Reviewers invited by journal
16 Aug, 2024
Editor assigned by journal
16 Aug, 2024
Submission checks completed at journal
11 Jul, 2024
First submitted to journal
08 Jul, 2024

You are reading this latest preprint version

Characterizing the need for childcare support for cancer patients through health care providers’ experiences: a qualitative study.

Status:

Version 1

Abstract

Purpose

Methods

Results

Conclusion

Figures

Introduction

Methods

1. Recruitment Strategy

2. Ethics and Consent

3. Data Collection

4. Data Analysis

Results

Characteristics of Healthcare Providers

Key Themes

1. Increased emotional stress

2. Financial Toxicity

3. Effect on Medical Outcomes

1. Increased Stress for Children

2. Potential for Supporting Children

1. Children in Healthcare Appointments: Distraction, Reduced Communication, and New Responsibilities for HCPs

2. Emotional Distress for HCPs

3. Benefits of Supportive Childcare Programming on Medical Care

1. Increased Efficiency

2. Hidden or Unclear Need for Childcare on a System Level

1. Location of Childcare: In House vs. On Site

2. Cost of Childcare Services

3. Barriers to Establishing Childcare Services

Discussion

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1