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J Hosp Palliat Nurs. Author manuscript; available in PMC 2023 Oct 11.
Published in final edited form as:
J Hosp Palliat Nurs. 2023 Oct 1; 25(5): 255–262.
Published online 2023 Jun 10. doi:10.1097/NJH.0000000000000956
PMCID: PMC10565875
NIHMSID: NIHMS1933782
PMID: 37302803
A Phenomenological Study
Cinzia Caparso, PhD, BSN, RN, postdoctoral fellow, Emma Noble, BSN, RN, PhD student, MaryAnne McCoy, PhD, RN, ACNS, ACNP-BC, assistant professor, April Vallerand, PhD, RN, FAAN, College of Nursing Alumni endowed professor, and Ramona Benkert, PhD, ANP-BC, FAANP, associate dean for academic, clinical affairs, professor
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The publisher's final edited version of this article is available at J Hosp Palliat Nurs
Abstract
Parents with advanced cancer and their dependent children experience high psychological distress, decreased quality of life, and decreased family functioning due to cancer-related concerns. Dying concerns are defined as fluctuating thoughts or feelings that are conscious or unconscious about an anticipated and approaching death that is attributed to a palliative/terminal diagnosis. This study used Gadamer's phenomenological approach to gain a shared understanding of the perspectives of the parents with advanced cancer about dying concerns, family life before and after advanced cancer diagnosis, and family resources to manage the crisis of advanced cancer for the coparent. The sample consisted of 4 patients from a Midwestern cancer hospital. Data were collected through 2 virtual semistructured interviews and were qualitatively analyzed using the hermeneutic rule and the theoretical concepts from McCubbin and McCubbin's Family Resiliency Model. Four major themes emerged: “Uncertainty in End-of-Life Decisions,” “Effectless Communication,” “Parental Skepticism,” and “Psychological Well-being.” The results showed that parents with advanced cancer have concerns for their coparent outside their parental role. Understanding dying concerns from all family members may increase nurse-initiated communication to improve family outcomes.
Keywords: family, neoplasm metastasis, nursing research
Dying concerns are defined as fluctuating thoughts or feelings that are conscious or unconscious about an anticipated and approaching death that is attributed to a palliative/terminal diagnosis and may be experienced by the patient or his/her family members.1-3 When a patient has advanced cancer and is a parent to dependents (PWAC), the patient's concerns are increased, thereby impacting the patient's quality of life, psychological well-being, and perceived family functioning.1,4,5 Yet, the literature on the approaching death of PWAC has often been limited to the term “parental concerns,”6-10 rather than the broader concept of dying concerns. Plus, the extant literature has mainly focused on concerns related to the PWAC's children, with limited focus on the concerns for the coparent.1
A validated scale that measures parenting concerns in patients with mixed-stage cancers who have dependents is the Parenting Concerns Questionnaire.5 It measures concerns on a Likert scale about the practical and emotional impact of their illness on the children and concerns about their coparent.7 Patients with advanced cancer and parents to dependents scored their concerns for their coparent including the emotional impact of cancer, coparent coping, and quality of parenting as high,4,6-8 but limited research has been conducted to identify, qualitatively, the specific concerns for the coparent from the PWACs' perceptions. The aim of this hermeneutic study was to gain a shared understanding of the perspectives of the PWAC about the dying concerns and the factors that may mediate these concerns with a focus on the impact of advanced cancer for the coparent.
METHODS
Design
This qualitative study applied Gadamer's11 approach to hermeneutic phenomenology, which posits that human experiences in the past impact their conception of the current experiences and realities. Fleming and colleagues12(p117) have outlined key steps to reach a “shared understanding” in a study using Gadamer's11 hermeneutic design, which was followed for this study. The team consisted of the principal investigator (PI, C.C.), a research assistant (E.N.) and 3 experts; one is a cancer and qualitative researcher (A.V.), one on the theoretical basis of McCubbin and McCubbin,13 and a clinic-based and nurse researcher (R.B.).
Study Participants and Setting
The target population included PWAC (stage III or IV) with at least 1 child 18 years or younger who could also identify a coparent, which was defined by the PWAC as an individual most involved in the patient's illness who would care for the dependent children until they were of legal age.14 Additional inclusion criteria were a score of less than 3 on the Eastern Cooperative Oncology Group Performance Status (ECOG-PS) tool and English speaking. Purposive sampling was used for recruitment. The ECOG-PS was used to assess the patient's functional ability (eg, care for themselves, daily activity, and physical activity) in cancer patients.15 Exclusion criteria were PWACs with severe psychological distress noted by chart review, scored higher than a 3 on the ECOG-PS, could not identify a coparent, or scored less than 4 on the Mini-Cog test if diagnosed with central nervous system cancer or brain metastasis. The target sample size was 10 participants, but because of difficulties related to the COVID-19 (coronavirus disease 2019) pandemic, the final sample consisted of 4 PWACs (Table).
TABLE
Participant Demographic Characteristics (N = 4)
| Mean age (range), y | 44 (40-47) | No. of children living in household | 1, n = 1 2, n = 2 3, n = 1 |
| Cancer type and stage | Breast cancer Stage III, n = 1 Stage IV, n = 3 | Mean age of children (range), y | 7.8 (3-17) |
| ECOG-PS score | Interview 1 1, n = 4 Interview 2 1, n = 3 | Race | White, n = 3 African American, n = 1 |
| Relationship status | Married, n = 4 | Education | Some college, n = 1 Completing an associate degree, n = 1 Completing a bachelor's degree, n = 1 Completing a master's degree, n = 1 |
| Identified coparent | Marital spouse, n = 4 | Income | $35 000-45 000, n = 1 $75 000-85 000, n = 3 |
| Mean of years being together (range) | 13 (7-20) | Religion | None, n = 1 Christianity, n = 3 |
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Abbreviation: ECOG-PS, Eastern Cooperative Oncology Group Performance Status.
Recruitment occurred at a cancer hospital and outpatient facility in the Midwestern United States. The recruitment process mainly occurred online because of the sensitive nature of the study and COVID-19 outpatient restrictions. Eligible participants were first approached by their oncologist about the study and then contacted via phone or email by the primary author, if interest was shown.
Ethical Considerations
The study was approved by the cancer hospital's Protocol Review and Monitoring Committee for cancer-related research (December 2020) and the university's institutional review board (January 2021). All participants were informed of the research purpose and procedures, and informed consent was attained via Qualtrics (Silver Lake and CPP Investments, Seattle, Washington), a secure survey system, from participants who agreed to participate in the study.
Data Collection
Data were collected between January 2021 and October 2021. Participants were reevaluated with the ECOG-PS before all interview sessions. Eligible participants were emailed the sociodemographic questionnaire via Qualtrics, which was done before interview 1.
All interviews were audio and video recorded using the online video-conferencing platform, Zoom (Zoom Video Communication, INC., San Jose, California). The interview guide was developed through a literature review,1 2 authors' previous pilot study experience,16 and use of the conceptual definitions from McCubbin and McCubbin's13 theory of Family Resiliency: pileup of stressors, existing family type, and sense of coherence.13 The model assumes that families are managing not only stressors related to cancer, but also stressors of family life13; thus, a dying concern such as “Will the coparent be able to raise the children?” is beyond the assumed stress of cancer and is unique to this group.
Participants had the option to stop the interview at any time and pass on any questions. In addition, if participants showed signs of emotional distress (eg, uncontrollable crying or depressive statements) or physical distress (eg, pain, fatigue, or nausea), the interview would stop, and the appropriate referrals were made to their primary care provider or oncologist.
In interview 1, the participants were asked general questions about their cancer diagnosis, feelings toward the diagnosis, and subsequent happenings because of it. The PI also asked follow-up questions after answers were given. Participants were given the opportunity to relay any additional concerns to the PI at the end of the interview. Interview 1 ranged between 38 and 60 minutes (mean, 49 [SD, 10.2] minutes).
One to 2 weeks after the first interview, participants were sent a summary statement for review. The summary statement allowed the participants to confirm their experiences. One to 2 weeks after, interview 2 was scheduled. Interview 2 allowed the participants to provide feedback on their experiences and for the PI to ask additional clarifying questions. Interview 2 ranged between 10 and 50 minutes (mean, 23 [SD, 23] minutes).
Data Analysis
Demographic data were analyzed using descriptive statistics with SPSS 26 (IBM Corp, Armonk, New York). Interview data were managed by NVivo 12 (QRS International, Denver, CO). Five steps of Fleming and colleagues'12 research methods were followed in compliance with Gadamer's11 approach, which are outlined in the following sections.
Immersion
Interviews were checked for accuracy by listening to the original recordings. Interviews were read repeatedly (C.C. and E.N.) to immerse researchers in the raw data. This led to an understanding of the whole text, which influenced understandings of other areas of the text. The text was met with our preunderstanding. The team's commitment to the scoping review1 (C.C. and R.B.), pilot study16 (C.C. and R.B.), identification of a family theory13 (C.C. and M.M.), and reflections on personal and professional practice (C.C., E.N., and A.V.) allowed a deep level of preunderstanding.
Understanding
The 3 concepts from McCubbin and McCubbin's13 theory: pileup of stressors, family type, and sense of coherence, which were concept codes, were applied to the data. Five potential family types in families with a PWAC: (1) equipped and optimistic, (2) equipped and pragmatic, (3) discouraged and struggling, (4) apprehensive and passive, and (5) discouraged and conflicted, were also applied to the data.17
Abstraction
Under each concept code, 2 coders (C.C. and E.N.) developed open codes to represent participants' ideas (their horizon). The coders met to discuss the open codes. Open codes were grouped together into clusters, and each cluster was labeled based on the meaning. Regular discussions were conducted between the 2 coders to develop potential subthemes based on the aims of the study and the researchers' preunderstanding. The subthemes represent the researchers' horizon.
Synthesis and Theme Development
The final codebook was applied to the text. A relationship was noted when applying the concept codes and the subthemes. Moving back and forth between the literature, the assumptions and propositions of the theory, and the earlier pilot data, similarities and differences were identified. In this process, themes were informed by and sequentially enriched the researchers' preknowledge. Completion of this step allowed for interpretations on the concerns for coparents to evolve.
Illumination and Illustration of Phenomena
The researchers linked the literature to the developed themes and subthemes. These steps allowed the research team to analyze the quality of the stories and ensure the outcomes of the stories echoed participants' experiences and voices.
Our preknowledge changed though data collection and interpretation. The researchers (C.C. and E.N.) met and examined these changes to engage the hermeneutic circle process.12
RESULTS
The data are presented by the 3 main concepts from the model and the themes that were developed under each theoretical concept.
Pileup of Stressors: Dying Concerns
Dying concerns were identified as the PWACs' subjective definition about advanced cancer and the demands it places on them plus the capabilities of the coparent to manage the advanced cancer at end of life.13 The analysis revealed 4 themes, which were labeled “Uncertainty in End-of-Life Decisions,” “Effectless Communication,” “Parental Skepticism” and “Psychological Well-being”
Uncertainty in End-of-Life Decisions
Patients with advanced cancer and parents to dependents expressed concern about the coparent's ability to make end-of-life decisions for them if it became necessary. Two participants reported this concern, with one participant wanting a family friend to act as a durable power of attorney over her coparent, because of the potential burden it could cause him, and one doubted her coparent's ability to make end-of-life decisions for her.
I just think that he's got a lot on his plate. And he puts too much on himself, and just even recently, I can see how it takes a toll on him. I see him getting emotional lately… the weight of it all is affecting him…
I'm going to have to depend on him to take care of me? … And I'm not confident that he's going to make the proper decisions. … I'm really screwed [weak laugh].
Effectless Communication
Two PWACs reported communication concerns with their coparent, explaining that they had tried to have conversations about their advanced cancer but felt that their concerns were not being heard. In addition, PWACs reported not having conversations at all due to fear of the coparent's reactions:
I thought maybe it would change. Maybe this [communication] would change now with this diagnosis and that we could talk about things, and he'd be more open to figuring things out or listening. But no, it's still the same. Nothing's really changed… It's just me… That I'm just here by myself. Living it…
…We try not to talk about it [the cancer] a lot, not focus on that… We haven't talked too much in depth as far as when I am gone. So, if it's something that he doesn't necessarily want to talk with me about or he doesn't want to upset me or something to that case, then he has other people to talk to, too.
Parental Skepticism
Patients with advanced cancer and parents to dependents reported concern for their coparent's ability to function as a single parent in the event of the PWAC's death. All participants reported this concern:
[If] something happens to me… [health care providers] take a greater part in the care of our children… I don't see you [her husband] being able to do it all by yourself.
How would he take care of everything and handle everything when I'm not here? Because he barely does any of that now when I'm here.
[Reflecting on coparent raising daughter] I realized that there is zero chance that I want my husband to do that with her when she gets older on his own. Because I don't think he will know how…
…if I'm not here, how he will… deal with doing everything on his own. …But that's my biggest concern, is my husband has a busy job, and how do you balance that if you're the only parent? [crying]
Psychological Well-being
Patients with advanced cancer and parents to dependents expressed that a concern for the psychological well-being of their coparent if they die was depression. All participants reported this theme.
You know, if something happens to me, I don't want it to be like the straw that broke [the camel's back].
I think he might fold like, can't handle it, go into this deep depression…
I can remember saying to her [a cousin] that it's time to start focusing on him…
…feeling the impact of the loss. And me not being around emotionally. I think that will be challenging, but—I think he will be able to deal with it. But I do worry about it.
Existing Family Type: Family Life Before and After Advanced Cancer
Existing family type is defined as a set of characteristics expressed by the PWAC that describes family system functioning.13 Of the 5 potential family types as reported by Park and collegues,17 the sample fell into only 2: Equipped and Pragmatic or Discouraged and Conflict.
Equipped and Pragmatic
Two of the PWACs in this family type express fears about the trajectory of their disease, the impact it had on their parental role, and that their advanced cancer caused psychological distress to their children, but reported successful family adaptation.17 These 2 participants had immense support from their extended family during this time. Even though they expressed concerns, it was mitigated by the fact that their extended family supported them to keep a sense of normalcy in the household, not only for the children, but also for the coparent as well.
I couldn't do anything for myself. And I had 2 small children, I had a newborn and my mom, somebody was constantly here all day long taking care of my children. It was really nice for him to feel very supported, for him to have my mom and my sister come over.
…when I'm not here, I know that they [extended family] will still be in place [tearful] and that they will still support my husband. [sniffles] So, it gives me some relief to know that he will have people to help him.
Discouraged and Conflict
The other 2 PWACs in this family type expressed disappointment in their views of family management plus functional limitations related to the disease. They had accepted their impending death and expressed concern about their family's future.17 They reported frustration in family management related to the disease. The participants both accepted their impending death, but they felt their family did not understand the path of their disease, which led them to express concern about the family's future.
What he expects out of me is a little much for what I'm actually able to [do]. …that's why I think that he doesn't understand it, because he's like, ‘No. You, you should be able to do that…’ And I'm like, ‘Yeah, that sounds like something I should be able to do, but really not so much.’ So, just like his expectations are little higher than I'm able to match sometimes.
Nobody's talking about anything. Everybody acts like everything's normal around here… I just try to play along too, I guess. But I don't want to be the one to burst everybody's bubble or get them all depressed… And like I keep saying and I said to everybody at one point, like, this is the best it's going to get. That's all that I just keep thinking, like, for how long is this going to be?
Sense of Coherence: Family Resources
Sense of coherence is defined as a family who has persistent thoughts of feeling confident that their life and family within the crisis are comprehensible, manageable, and meaningful.13 All 3 themes were expressed in some way by the participants.
Comprehensible
Comprehensibility is the PWACs' feeling that the environment around them is anticipated and reasonable.13 Understanding the disease process was the main theme in which the participants had a sense of comprehensibility. Two of the participants reported how their providers communicated with them about their disease process, which gave them a sense of understanding. One participant also reported staying up to date on the newest treatment for advanced breast cancer helped.
I've done webinars… like breast cancer workshops or conventions… where there's doctors there reporting out on the newest things that are happening or on this or that, like treatments and, just different things. Just being knowledgeable about things is how it helped me move on.
I have great doctors who are very good at communicating with me. We talked about a lot of things, my mental health, and those kinds of things. Just overall health and how it all affects everything.
Manageable
Manageability is a feeling the PWAC has that resources to meet the demands that advanced cancer causes.13 Participants reported that family support, community support, and religion were the main resources they utilized to manage the crisis of cancer.
Family Support
Family support was a major factor in managing the demands that the advanced cancer placed on the family. The 2 participants in the Equipped and Pragmatic family type reported increased family support, which helped them manage the demands that cancer placed on their family.
I can't imagine if I didn't have someone [extended family] to talk to. It is a lot to go through and to be able to have somebody to give that outlet to or even sometimes just sit here and not talk and just know that I have someone that's supporting me is very helpful.
Community Support
Community support was another way in which the PWACs felt they could manage their diagnosis. Three participants reported the use of online and in-person support groups to cope with their advanced cancer diagnosis. One participant reported the use of a community resource to assist with the financial burden that cancer care can have on a family.
I have people to ask questions to, like support groups or Facebook groups…
…we had help from Angels of Hope. They helped with our children. I mean, they helped with us, too. But it was mostly our children, like to give our children a Christmas. They help with our mortgage, which took a lot off of my husband.
I've been in a couple of support groups… so being able to talk to people that are going through the same thing is, I think, helpful.
Religion
Religion was an area of manageability that was reported by 2 participants.
Religion and just being close and finding the peace with being with the Lord and just having that feeling of security of knowing that I'm taken care of on all ends first.
I know when we focus on that [their religion], that's why I know everything is OK. Like despite us going through this.
Meaningful
Meaningfulness is the PWACs' feelings that the advanced cancer placed challenges in their family life but was worthy of investment of time and engagement to the family.16 Based on the family type, meaningfulness differed. Two of the participants in the Discouraged and Conflict family type did not report any meaningful changes in their family because of the cancer diagnosis.
I thought the meaning was that instead of all the bickering and arguing between my 2 daughters and the one the older daughter with me that maybe this [the cancer diagnosis] would stop all of that and everybody would get along. Life is precious, and you don't know how much time you have and just spend it getting along and having fun and doing things together, but that's not happening.
In contrast, the 2 participants in the Equipped and Pragmatic family type did report a change. One participant reported how even though the cancer had been hard on her family life it brought her and her coparent closer together to cope with the cancer diagnosis.
I've been very… lucky, and I'm very thankful that as hard as it has been, it hasn't really changed our relationship. We are really committed to working together and doing whatever we need to do to get through it.
DISCUSSION
Applying Gadamer's11 approach to phenomenology and being guided by the Family Resiliency Model allowed for a shared understanding to occur between the participants and the researchers about dying concerns for the coparent from the PWAC's perspective. Each concept from the model had subconcepts. Pileup of stressors, the main concept of interest, led to the 4 main dying concern themes expressed by the PWAC for their coparent: “Uncertainty in End-of-Life Decisions,” “Effectless Communication,” “Parental Skepticism,” and “Psychological Well-being.”
“Uncertainty in End-of-Life Decisions” theme was the PWAC expression of concern that if they could no longer make medical decisions for themselves, they were apprehensive that their coparent may not make the right decisions for them. The PWACs also expressed concern that having to make end-of-life decisions for them may be emotionally distressing for the coparent. Several studies support that the parental status of being a PWAC with dependents impacts their end-of-life decisions, which also increases their worries and concerns.4,18,19 However, this study acknowledged the PWACs' concern about the uncertainty in their coparent's abilities to make end-of-life decisions for them.
Research on communication in families with a PWAC focuses on communicating with their dependent children about the cancer.4,5,10,16 This study acknowledges the communication difficulties about the advanced cancer between patient and the coparent, specifically focused on end-of-life concerns.
Coparent relationships may also be a factor for the “Effectless Communication” theme, besides just parental status of the PWAC. The theme developed in the current study is 2-fold: (1) the PWACs are reporting having open communication about their concerns related to the advanced cancer, with no effect or response noted in the coparent from the perception of the PWAC; and (2) the PWACs are not engaging in conversations about their concerns because of the fear of the coparent's potential reactions.
Although this theme is like previous research,16 this concept is slightly different. This theme suggests that PWACs are trying to engage their coparent in conversations about their advanced disease trajectory, but the PWACs perceive that their coparents are not listening. Still, PWACs expressed wanting to have these conversations with their coparent but did not because of the fear of the coparent's reactions. A study conducted by Schiena and colleagues20 examined the experience and support needs of 12 PWACs and their coparents who cared for the dependent children while one parent is receiving cancer treatment. The study revealed the coparent was hiding his/her emotional distress to protect the PWAC from added emotional concern. The findings from Schiena and colleagues'20 study and the current study suggest that the PWAC may perceive the coparent as not wanting to listen, whereas the coparent's lack of communication may be a protective method to shield the PWAC from increased psychological distress. Therefore, this theme is one that needs further research from a dyadic perspective.
The coparents' parental skepticism in the event of the PWAC death was a concern. Inhestern and Bergelt's21 study found parents with any-stage cancer expressed concern about parenting efficacy for their coparent because of the change in family roles and responsibility, but parents with advanced cancer expressed increased fears, which correlates with this theme. In addition, all participants in the current study were mothers, which is consistent with previous research in this population.4,6,7,9,10,18 Sex of the PWAC may impact this theme based on sex roles in the household and the sex of the children. Similar themes were noticed in Caparso and colleagues'16 pilot study, where mothers expressed the “My Weakest Link” and “If I'm Not There, Where Do They Go?” in relation to the coparent (male). These findings are concerning because Park and colleagues'22 study of 203 participants (a majority were women) found the overall Parenting Concerns Questionnaire score was related to the PWAC's depression (P < .001) and anxiety (P < .001) scores. In the same study, women were more likely to report highest concerns on the coparent concerns subscale.22 Therefore, parental skepticism may be influenced by the sex of the PWAC, which poses potential psychological burdens on the female PWAC.
“Psychological Well-being” correlates to previous research in families with PWAC, with anxiety and depression being the most common disorders experienced in the family.10,22,23 The main concerns reported by participants were that the coparent would suffer from depression after the PWAC died and it would detrimentally impact the family unit. A recent study by Park and colleagues supports this finding.24 The sample included 845 bereaved adults with minor children, 312 of which experienced death related to cancer, supporting that 19.3% met the definition for prolonged grief disorder and 838 participants' depression scores corresponded to mild depression.24 In addition, 73% of adults had increased worry about their parenting self-efficacy on a daily basis.24
Ultimately, although the researchers gained an understanding of dying concerns, these concerns could not be analyzed on their own. Family cancer researchers agree that family type, structure, and hope will impact the desired outcomes of a research project.25,26 Existing family type and the concept of sense of coherence (eg, hope) were found to impact the PWACs' concerns for their coparent in this research study. Developing an understanding of which family type the participant identified with helped to provide a lens about the family life before and after the cancer diagnosis to assist in identifying the PWACs' dying concerns for their coparent. The existing family types described by previous research17 were also found in the qualitative data, specifically Equipped and Pragmatic and Discouraged and Conflicted. The impact of existing family types on the 4 dying concern themes was noted.
Families who were in the Discouraged and Conflicted family type expressed the theme of “Uncertainty in End-of-Life Decisions.” What may have impacted this theme was the PWACs' view of their family functioning, having dependent children in the home, and the PWACs' concerns for the coparenting abilities and psychological well-being of the coparent. Although families' members have reported uncertainty in end-of-life decisions for a family member,27 this is the first finding about the patient's concerns that the family will not be able to make the decisions for them. This theme would need further investigation to identify additional factors that may impact this theme. Participants who were in the Equipped and Pragmatic family type did not report this concern.
“Effectless Communication” was also impacted by the Discouraged and Conflicted family type. Patients with advanced cancer and parents to dependents viewed their family as unaware of their cancer trajectory, which may impact the way communication occurs in the family unit. Patients with advanced cancer and parents to dependents in this family type reported how they wanted to communicate with their coparent, but they felt unheard. In contrast, the Equipped and Pragmatic family type had reported this concern but reported how additional family support would be available to the coparent to assist in communication concerns. A limitation to this study was the identification of the existing family type, as only the PWACs' perspective of the impact of their cancer on family functioning was addressed. Future research needs to understand that communication is a dyadic process, and for better communication outcomes between the dyad, a perspective of the opposite party needs to be examined.
All participants reported “Parental Skepticism”; however, the severity reported from the participants varied based on family type. Equipped and Pragmatic family types expressed this concern but felt their coparent would receive family support to assist in childcare. In contrast, the Discouraged and Conflict family types felt the need to identify someone who could assist the coparent in child-rearing before they died or to take it upon themselves to impart all their parenting before they died. Existing family types did not impact “Psychological Well-being.”
“Effectless Communication” and “Parental Skepticism” were impacted by family type, and this family type may ultimately impact interventions. Park and colleagues17 found in their sample of 42 participants that Equipped and Pragmatic family types may need only brief familial support, whereas the Discouraged and Conflicted family types need lengthier interventions. With the findings from Park and colleagues'17 study and the current study, future research can develop interventions to support different family types.
The remaining concept of sense of coherence seems to impact the dying concern themes. When the PWAC had family support and perceived successful family adaptation, which is the sense of coherence, dying concerns were present, but the PWAC did not dwell on them. The PWACs described that their family would be taken care of when they died. In contrast, in the PWAC who had limited family support and perceived decreased family adaptation, dying concerns were more prevalent and more concerning to them. These PWACs turned to the community and their religion for support because their family dynamics did not include an adequate sense of coherence.
CONCLUSION
Dying concerns for the coparent from the PWACs' perspective require a multifactorial perspective. Gadamer's11 philosophy ensured that the PWACs' perspective could be viewed from multiple lenses. This study found existing family type and a sense of coherence to be factors that impacted the PWACs' views of their dying concerns for their coparent. Two of the 4 themes were supported by existing research; however, the themes “Uncertainty in End-of-Life Decisions” and “Effectless Communication” are new areas to explore.
This study had 5 limitations. First, identifying and recruiting PWAC were challenging because of provider's paternalism and institutional barriers from the pandemic. Second, the sample size was small. Third, the sample consisted of married women in whom the concerns for the coparents were related to the marital husband. Fourth, a lack of diversity in the race/ethnicity of the sample was an issue. Also, a lack of diversity related to sexual orientation with the coparent was also a limitation. Limitations 2 through 5 limit the generalizability of the findings.
Future investigators will need to target diversity in the sample regarding sex, race/ethnicity, and sexual orientation. Patients with advanced cancer and parents to dependents are patients, parents, and coparents, and when the clinical lens is limited to concerns about their role as a patient, researchers may miss other aspects of their life roles requiring different interventions.
Acknowledgments
The authors thank the physicians at the oncology hospital for helping them obtain permission from the hospital to conduct this study and for support in identifying and recruiting this population. They also thank all the participants.
This study was funded by Wayne State University Graduate School Dissertation Support Award and Blue Cross Blue Shield of Michigan Dissertation Award (grant #2021010063). C.C. received research support from the National Cancer Institute institutional training grant (T32-CA-236621). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health or the National Cancer Institute.
Footnotes
The authors have no conflicts of interest to disclose.
Contributor Information
Cinzia Caparso, University of Michigan, Ann Arbor.
Emma Noble, Wayne State University, Detroit, Michigan.
MaryAnne McCoy, Wayne State University, Detroit, Michigan.
April Vallerand, Wayne State University, Detroit, Michigan.
Ramona Benkert, Wayne State University, Detroit, Michigan.
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