* This study was originally conducted as part of a dissertation. The research, findings, and conclusions presented herein are derived from the author’s original academic work submitted in partial fulfillment of the requirements for the degree of PhD at Syracuse University in June of 2023. Some references to specific institutions, individuals, or events are based on the data and context available at the time of the original research. The original dissertation research study can be found here: https://surface.syr.edu/etd/1753/.
Introduction
The rates of cancer for people aged 50 and under continue to increase globally since 1990 (Zhao et al., 2023). Since the survivorship rates of this demographic are also increasing, there is a burgeoning concern for parent and child dynamics when a parent is diagnosed with cancer (Cui et al., 2024). Correspondingly, an estimated 2.85 million children were projected to be living with at least one parent diagnosed with cancer (Weaver et al., 2010). Estimates suggest that at least 3 million children in the United States are impacted by a parental cancer diagnosis within their family systems (Inhestern et al. 2021; Weaver 2010; Chernichky-Karcher, 2017). Despite the sizeable number of children impacted by this presumably life-changing situation, limited empirical data illuminate how cancer impacts the family as a unit and how to meet their distinct needs (Krattenmacher, et al., 2012; Osborn, 2007; Huizinga, 2005, Shah et al., 2017; Faulkner & Davey, 2002). Namely, one Australian study that interviewed health professionals about the psychosocial care provided to children during their parent’s cancer treatment further echoes those of previous reports of global population studies on the need to pay far more attention to the offspring living with parental cancer. It was reported that health professionals regarded the children of adult cancer patients as fairly non-existent and described them as “invisible” in their parent’s treatment process (Alexander et al., 2020).
Given the possible situational and developmental differences in how offspring and their parents manage their cancer diagnosis, there is a greater need to analyze the impact of cancer on a familial level. More specifically, how a parent’s cancer diagnosis may influence a child’s well-being is still not abundantly clear (Morris, et al., 2018). A recent literature review indicates that anywhere from 2.5% to 24% of minors who have a parent with cancer are impacted “with a substantial psychosocial burden” (Inhestern et al., 2021). Limited data exists about not only how mothers cope with their own cancer diagnosis, but how they adjust to parenting demands during this time as well. The data that is available points toward mothers feeling guilty about the additional stressors, challenges, and emotionality that their children contend with related to their diagnosis (Inhestern & Bergelt, 2018; Spiropoulos, et al., 2023). However, there is even less information about how mothers with cancer perceive their child’s adjustment to their cancer experience. Collecting data from mothers about their offspring would assist in mapping resiliency and coping strategies between parent and children in response to a parental cancer diagnosis (Alexander et al., 2019; Krattenmacher et al., 2012).
The origins of defining individual resiliency commonly involve the notion of a person having to “bounce back” from some form of adversity. However, more recent conceptualizations of resiliency further delineate this notion by clarifying that resilience involves an individual experiencing a positive outcome and/or strengthening themselves in the face of risk/adversity (Vella & Pai, 2019; Walsh, 2016). Similarly, the framework of family resiliency considers how different life events that occur to one person may impact a family system as a unit. The family resiliency framework builds upon developmental, ecological, as well as individual and familial stress and coping theories and models to provide a more systematic examination of how families respond to adverse experiences (Henry et al., 2015). The conceptualization of resilience and its application to cultivating an understanding of how families function collectively is critical for exploring the impact of several distressing life events, such as a parent’s cancer experience. This framework also emphasizes the importance of determining how some families can flourish and overcome hardships in the face of difficult challenges.
In consideration of lack of understanding of what children face during a mother’s cancer experience and the family resiliency framework, this pilot study attempts to answer the following research questions: How do mothers perceive their child(ren)’s stress around their cancer experience, how do mothers with cancer assess their child(ren)’s coping with their diagnosis and treatment, and how do mother’s view their child(ren)’s capacity to foster resilience to their mother’s cancer experience?
Methodology
Interviews were conducted with five mothers who have/had a cancer diagnosis at the time when their children were between the ages of 10-18-years-old while they were undergoing diagnosis and active treatment. Participants were recruited through convenience and snowball sampling. All mothers were sent a description of the study, the family’s role in it, and their rights to withdraw from the study. Electronic consent was provided to survey participants. Oral consent was provided to interview participants, and all chose to have a copy of the consent form emailed to them following the interview. The study received Institutional Review Board approval from Syracuse University (IRB #21-102).
The interviews occurred using the Zoom communications software, which also recorded the interviews (with the permission of the participants). The interviews took place in Spring 2023, were 48-57 minutes long, and lasted on average for approximately 52 minutes. All of the mothers interviewed were previously diagnosed with cancer and all were in remission at the time of the interview. Table 1 below provides additional details regarding the demographics and the abbreviations assigned to each of the research participants. The interviews were conducted in a semi-structured format. The participants were asked the same eight questions with the attempt to decrease bias. Some of the questions asked include the following: What parts of the cancer experience has seemed the most stressful/taxing to your child(ren) and why do you think that is? How do you think your children “deal with” or cope with those cancer related stressors? If you could go back in time and help reduce the stressors associated with the cancer diagnosis or help your children cope, would you do anything differently? The participants were also asked some follow-up questions to further clarify a response and/or request elaboration of an answer.
Table 1
Research Participant Abbreviations and Information
| Participant | Age at Diagnosis | Children’s Ages at Diagnosis | Type of Cancer |
| M1 | 48 | 13 and 18 | Breast Cancer |
| M2 | 41 | 10 and 12 | Breast Cancer |
| M3 | 41 | 11 | Breast Cancer |
| M4 | 41 | 11 and 13 | Ovarian Cancer |
| M5 | 40 | 10 and 12 | Breast Cancer |
The interviews were recorded and then transcribed verbatim. Afterwards, a thematic content analysis was conducted. The aim of using this approach was to identify common themes and patterns related to how mothers with cancer evaluated their children’s responses to their diagnoses in terms of resiliency and coping. The first step in the analysis was familiarization with the data by conducting several repeated readings of the transcripts to gain an overall understanding of the content. Afterward, an initial list of codes was developed using brief phrases that summarized the meaning of specific segments of the transcriptions. The codes were then grouped into broader categories based on their shared themes, and these categories were refined through a process of comparison and revision of the participant responses. Overarching themes were then identified that encapsulated the essence of the data and the ways in which the mothers perceived how their child(ren) navigated the stress of their cancer diagnosis. The analysis process was iterative in nature, with themes being refined and revised as more data were collected and analyzed. The final themes were then finalized and supported by illustrative quotes from the interviews.
Results
Some common themes that were derived from the interviews across the five mothers include compounding stressful circumstances, importance of social support for coping, and the mother’s intentional disclosure of information related to cancer. Although the mothers interviewed did not typically categorize their child’s coping skills into any specific categories, they did identify a variety of patterns of resilience and coping efforts of varying degrees of effectiveness.
Compounding of Stressful Circumstances
The mothers interviewed amply identified a breadth of perceived stressors experienced by their child(ren). Among the interviewees, there wasn’t necessarily a clear consensus about which parts of their cancer journey were most stressful for their child(ren). For some families, the initial “shock” of the diagnosis felt expressly overwhelming. Explicit mentions of the mother either losing their hair or “looking/feeling” particularly sick were reported as emotionally taxing to the child(ren). As an example, participant M4 explained,
M4: I’m an active person. Um, so to see their mom, like, sick and I, luckily, I wasn’t like throwing up, but I had no energy. Um, and then to lose my hair….that, that was hard to actually see it…on my youngest. Like, he wanted me to wear hats and stuff when I went out with him. Um, which is fine. Um, but I think that part’s been like, I’m the one who goes and plays basketball with him and throws the football and, I mean, my husband does too, but, like, I, I’m very active and I’m still trying to get that back. So it’s been, I think that was hard for them.
One participant also succinctly explained how she interpreted her child’s stress related to parental cancer:
M1: Um because what, what I think is really challenging about a cancer diagnosis is that you and the people around you, I don’t know, it’s, it’s hard to sort of figure out whether you’re supposed to be in fear or whether you’re supposed to be in hope.
This quote indicates that the stressful experiences for their children were largely intertwined with parental cancer issues and with other events happening in their lives, which elicited heightened negative feelings for them, such as fear or managing the unknown.
Similarly, the parents perceived that their children were already contending with several other stressors in their lives simultaneously. Although there was no singular part of the parental cancer experience that was identified as more or less stressful than others, there was evident agreement that the child’s stress associated with their cancer seemed to heighten the intensity surrounding preexisting stressors in their lives. All mothers interviewed specifically named previously existing circumstances that were already taxing to their child(ren) and seemed to require coping efforts, such as their family recently moving to a new town/school, bullying by peers, and/or complications related to the COVID-19 pandemic. The stress experience related to parental cancer was not necessarily problematic in and of itself but appeared to amplify ongoing stressors. As an example:
M4: So, you know, everyone has other circumstances going on, you know, all of these much personal uh personal journeys and it’s not even just the cancer that you’re…. you’re dealing with, you know, what your other life circumstances are… because the teenage years, the early teenage years and all that’s going on in their lives and the changes and uh so anyhow, it’s never easy.
This quote highlights how one mother viewed that the stress of the maternal cancer experience did not exclusively provide the children with something out of their capabilities to cope with. However, the accumulation of compiling stressors and the addition of needing to cope with various facets from living with a parent with cancer then exceeded their coping abilities because they were already being challenged by other issues. Relatedly, the interviewees also disclosed that underlying stressors that were present before the mother’s diagnosis seemed to manifest or intensify during their course of treatment.
M5: …I don’t know if it was because I was sick or if it was just, that’s just what he was gonna do, no matter what…we had behaviors before that and then escalated during and then it got even worse, you know, after I was done with treatment.
There were also compounding stressors that seemed to arise that were not particularly problematic prior to their diagnosis, but surfaced over the course of the mothers’ diagnoses and cancer treatments. In particular, the mothers frequently found that the behavioral issues reported from school officials were especially worrisome. At times, the mothers remarked that there were indications of behavioral changes or concerns for psychosocial functioning at home, but they felt as though those issues seen at home could be addressed effectively, either through therapeutic interventions or at a personal/familial level. It appeared more alarming to the mothers that the children were having escalating difficulty with school, especially when they had not expressed stress or difficulty managing school experiences prior to the parent’s cancer diagnosis. As participant M4 described,
M4: I mean, I think it was just, she began to have some challenges in school, um, about four or five months after my diagnosis and I could just see her distancing herself. Um, and I felt like at times that she was too bombarded with- “How is your mom?”
Importance of Social Support
The majority of interviewees spoke about how they orchestrated additional family time as a coping skill for both themselves and their children at a familial level. The conception of what constituted “providing support” and spending time as a family varied between participants. Some mentioned that they “bonded” with their children by “giving them roles” in the cancer experience such as requesting prayers from them before bedtime, assisting with medication management, or having them shave their heads before receiving chemotherapy treatment. Others stated that because their family was having this “shared experience”, they were conscientious to participate with their children, even if that meant just maintaining routines or attending family vacations that their children were looking forward to- even if the parent wasn’t feeling well, which they believed was well received by their children. One participant, M2, believed that her child would cope better if she felt like she was included along in the cancer journey with her mother.
M2: My kids were not old enough to go with me to treatment because you had to be 16…I think that was the minimum to accompany somebody to treatment. But I brought home the little drip bags that I got the chemo through with all the wires and everything and I showed it to them. I was like, this is what’s happening for me when I go to treatment. So they could picture it. You know, I sit in this chair and they put the medicine in these bags and it drips through these lines into my port. And um they were kind of like ew, but I wanted them to be able to have a concrete picture because again, if the mind…the mind is going to go places, is going to imagine things. So I tried to give them actual tangible information to fill their imagination instead of um them making stuff up.
However, mothers also talked about how they had to “test out” the implementation of different support strategies until they found something that seemed to be “helping” their child(ren) that were also mutually beneficial to their relationship. For example, participant M2 discussed the difficulties of finding a balance between supporting each other on a familial level, and also allowing for her child’s independence:
M2: She said to her dad at one point, I keep hurting mom’s feelings. And so it was a wake up call for me to like it’s a delicate dance, right? I’m managing so much of my own stuff. That’s not a weight I want to put on her…..at the same time…she does need to be aware that um I’m going through something major, you know, and I need her help with it and want connection with her.
Therefore, although social support from family members could be an excellent adaptation of a coping resource, there is also much discretion that could occur from employment of that strategy at both the individual and familial levels.
The use of “social support” as a principal mechanism to build resiliency that was related to the parental cancer diagnosis for children was highly prevalent throughout the interviews. Mothers discussed various other tactics involving engagement in “outlets” such as recreational and diversional activities with sports, pets, and music. These outlets seemed to coincide with both the child’s interests and with the parent’s efforts to maintain “normal” daily routines as much as possible. As mentioned previously, the interviewees noted that the children occasionally experienced difficulties connecting with others about their parent’s cancer experience. The mothers subsequently observed that their children seemed to increase resiliency when they had social support in a more “relatable” atmosphere. Engaging in social support that included relatedness of the cancer experience looked different to different families. Some of the families explained that they and their children relied heavily on spirituality/faith or their spiritual/faith communities, while others emphasized other methods of tangible support such as help with coordinating rides and meals.
Interviewees further speculated that whereas spending time/sharing information with peers would have normally been considered a coping skill readily employed by their children to their typical stressors, their peers were not able to provide the same type of support that they commonly would have been able to do prior to their parent’s cancer experience. As participant M2 stated,
M2: Um, they didn’t have any peers that had experienced a parent’s cancer … So, unlike COVID, where everybody was kind of going through it together, and so was something they couldn’t necessarily, like, they didn’t have a social support network that they could relate to about it both because social networks had been so disrupted. But then also because it’s just a unique experience, especially for kids as young as they are.
As such, participants who described experiences where their children were able to connect with other youth sharing similar experiences was paramount to their resilience. One child returned from attending a weeklong session of summer camp for youth facing parental cancer in which his mother described,
M3: …I’ll never forget I was driving somewhere and he was like mom, I learned how to laugh again. Like, and I just remember being like, oh…and he said so it’s like I learned how to have fun. I um…so they’re going back like every year now. That was probably one of the best decisions because it’s not focused on cancer. But, you know, you’re with people that have gone through it. And so everyone’s in the same boat, like trying to find joy and get rid of their stress and anxiety and just be kids.
These experiences, along with support groups, were frequently cited as very effective resiliency-building tools for their children.
Additionally, mothers brought up the use of various therapeutic interventions for resiliency and coping methods with mixed feelings. Some parents believed that therapy was very helpful for their child, some believed they hadn’t found a therapist that connected well with their child individually, they tried attending therapy virtually (either for convenience or due to COVID) to no avail, or their child refused to attend. Some revealed that their children were already seeing a mental health professional prior to their cancer diagnosis, and although they hoped that therapy was “generally helpful” to them, they did not know if it was specifically impactful for helping with parental cancer, managing other stressors, or even at all. Overall, the children in these families ostensibly could depend on their family members to provide relatable social support throughout various stages throughout the course of their parent’s cancer.
Intentional Disclosure of Information Related to Cancer
There was also a consensus among the interview participants that their children would be able to cope more “effectively” with the parent’s diagnosis and treatment based on their intentional and careful delivery of information about the cancer prognosis and course. It was commonly affirmed by participants that they didn’t want to “impose” their negative feelings, such as fear or their anxieties about the cancer experience “onto” their children. In essence, the parents were careful and deliberate when providing them information related to the cancer. All participants unanimously agreed that at no point they thought about “hiding” the diagnosis or treatment from their children. Participant M5 stated:
M5: I think the best thing you can do is be honest with them um…be open because if you try to hide things and you know … it’s just it makes them more concerned. Um, it makes them worry more.
Participants also emphasized that they were “selective” with the information that they shared based on what they thought was appropriate depending on age and developmental level.
M2: And so I was also careful with the information I shared not to overshare and give them more than they were asking for, but to see what questions they had after I shared kind of the basic outline…so disclosing things that are appropriate and that the kids can understand on the spectrum from, you know, total transparency to total secrecy. Neither end of that spectrum I think is healthy but choosing based on knowing your kids like what they can hear. Like I didn’t tell them what the oncologist had told me, which was…I asked if I, you know what if I don’t wanna do treatment. What if I just want to live the remaining days that I have with a good quality of life and then not just not do all the things, how long would I have? And she said less than a year and I said, oh….sign me up for the treatment. That’s a little sooner than I’m, um, prepared to leave this earth.
The participants further elaborated that besides not wanting to hide their diagnosis from their children, the mothers believed they were simply too “perceptive”. They strongly believed that their children were very attuned to what was going on with them individually and as a family unit, they would know when something was “off”. Participant M3 recounted how she was simultaneously being treated for cellulitis before telling her children about being tested for cancer, when her son had already hinted at knowing something more serious was happening,
M3: Um, but my older one is a very, very perceptive little boy and he could tell by the mood that something was wrong. And that night he asked my husband, like, can you die from cellulitis? Because he could tell something was very wrong.
Besides not wanting to “gatekeep” information from their children, all participants were firmly decided that due to the “perceptiveness” of their children, they felt as though they would have only hindered their coping abilities by “withholding” of their cancer status.
Discussion
With increasing rates of cancer and survivorship in adults 50 years and younger across the world, greater emphasis is placed on understanding the stress, coping, and resiliency of children living with a parent diagnosed with cancer. Perhaps one of the interview participants of the current study stated it best when she said,
I think, you know, when you’re a kid, your parents have such a powerful role in your life, they seem invincible, they seem immortal, they seem all knowing.
And I think part of the shock for her was just like, what, you know, my mom is not invincible, immortal, whatever those unconscious conceptions are that she had.
And then of course, just the, the shock of like, that’s a really serious diagnosis.
One of the more surprising subthemes that emerged from the interviews was related to issues that arose in the areas of academics and school, mainly with mother-daughter dyads. Almost all participants in the interviews specified emerging school related issues, though perhaps more intensely with daughters than with sons. The existing research is limited concerning the impact of parental cancer on children’s performance and behaviors in school. One study did not find associations between living with parental cancer and school-related issues in children and another even reported improved performance in school (Jeppesen et al., 2016; Inhestern et al., 2021), but other studies have reported that children felt like they had limited support and communication available at school (Hauken et al., 2018; Ainuddin et al., 2012). Hauken et al. (2018) surmised that there is a relationship between children with higher anxiety living through parental cancer and increased school-related issues. It would be beneficial to conduct further investigations on school-home communication and peer relationships of children throughout parental cancer. A related area of inquiry could involve expanding upon the noteworthy but limited previous interventional work regarding preparedness for school officials regarding communicating with and helping their students with distresses surrounding parental cancer (Fasciano et al., 2007).
This pilot study was instrumental in demonstrating how mothers with cancer expressed the importance of coping and resilience in terms of children having access to peers and support where they feel like they can communicate their thoughts and feelings, without burdening others with them. During interviews, some mothers felt that their children actively benefited from peer and other social opportunities where they could spend time with others sharing similar experiences to living with a parent with cancer, but not necessarily with the intended goals of the program/intervention to be therapeutic in nature. This notion is also congruent with past literature on mental health interventions for children coping with parental cancer where they were concerned about increased therapeutic interventions becoming burdensome and/or stigmatizing (Romer et al., 2007). At the same time, it would be exceptionally beneficial to have continued elaboration on how interventions should be tailored to increase adaptive coping skills and resilience for managing parental cancer. Very recent interventional research was started to explore this notion by demonstrating emphasis on communication between parents with cancer and their children (Hauken & Farbrot, 2022). The use of interventional programming specifically to enhance coping skills is a fairly regular practice among people who have undergone life-threatening conditions themselves but would also appear to be beneficial to those who are both managing living with a family member undergoing serious illness and testing out a number of different coping strategies that they could carry with them through adulthood (Morris et al., 2020). This type of programming could also be instrumental for resiliency as participant M1 elegantly described, “…even though it’s like 1,000% bad you know, there’s, there were some good things that came out of it.”
Limitations
Despite the fact that this study provided a rich narrative about the experiences of mothers with cancer and their children, there are several limitations. On the methodological front, the sample size is rather small, as this was a pilot study. The participants were also relatively homogeneous, and largely recruited through convenience sampling. Moreover, the sample was also subjected to influences by an overwhelming majority of WEIRD (western, educated, industrialized, rich and democratic) participants. The lack of diversity in the sociodemographic characteristics of the sample (most identified as White, biological mothers) in both the quantitative and qualitative portions of the study, prevents generalizability of the findings to other cultural/ethnic groups.
The interview participants also astutely distinguished, at times, that their children appeared to have stress from a variety of sources (including for some COVID-19). Ergo, it is subsequently difficult to pinpoint exactly when stress, associated coping skills, and resiliency-building were parental cancer related and which were associated with other stressful events and experiences. The interviews were also based on parental reports of their children’s experiences. Some disagreement is found throughout empirical literature on whether parental reports provide “accurate” depictions of their children’s perceptions. Recent research indicates that there is usually some discordance between parents and their children’s reporting behaviors, primarily within dimensions of family functioning (De Los Reyes et al., 2019).
Conclusion
As cancer persists as a serious threat to health in the United States and throughout the world, there is an ever-growing need to discern more about how a parent’s cancer impacts their offspring. Besides the concerns for increasing “early onset” cancer rates, additional attention seems warranted on meeting the increasing demands of mothers diagnosed with cancer, particularly with the child-parent relationship. Since feelings of guilt are often associated with mothers with cancer, giving increased attention to the strategies and resources that build coping and resiliency for children at various developmental levels and at the familial level, may be profoundly critical to mitigating that guilt.
The concerns previously expressed denote the need for additional support and interventions to address the psychosocial ramifications associated with familial cancer.
There is seemingly further need for increased exploration into interventional programming for children who are managing parental cancer in regards to interventions consisting of opportunities to socially connect with others that are experiencing similar stressors, which may be therapeutic in nature, but are not designed specifically to achieve therapeutic goals related to parental cancer, and also assist children in communication of their stress experiences of parental cancer to peers, school officials, and other people that they interact with on a regular basis. These same interventions that are potentially assisting the children could also allow mothers to provide resources in a manner that allows them to feel like they are meeting their parenting demands amidst the numerous challenges associated with the cancer diagnosis.
The results of this study also validate prioritization of research that delineate factors impacting individual and familial level resiliency. The connection between coping skills and resiliency in children is mutually reinforcing. Although mothers can recognize that their children can comprehend the risks and consequences of a parent receiving a cancer diagnosis, that doesn’t signify an ability to be able to effectively contend with that information at an individual or familial level. As a result, the adaptation and abilities to engage in coping methods when a family’s situation is the source of the stressor would support critical demand of facilitating enhanced awareness surrounding coping and resiliency development from a multi-level approach.
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