Introduction
While 80% of all cancers in the United States are diagnosed in people 55 years old or older (American Cancer Society, 2019), half of the population who are in their childbearing years will die from their cancer (National Cancer Institute, 2016). There is no epidemiologic data on what percentage of this population has advanced cancer with a terminal diagnosis and who are living with dependent children (parents with advanced cancer, PWAC). About 14% has been reported, although this percentage involves cancer survivors and not parents with active advanced illness (Weaver et al., Reference Weaver, Rowland and Alfano2010). Individuals approaching death have concerns about their future and the future of their remaining family. Yet, the literature on approaching death of PWAC have often been limited to the term “parental concerns” (Muriel et al., Reference Muriel, Moore and Baer2012; Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016, Reference Park, Check and Song2017, Reference Park, Deal and Yopp2018) rather than the broader concept of dying concerns. Parental concerns are emotional concerns for the well-being and development of the child (Algarvio and Leal, Reference Algarvio and Leal2016). They focus on one role of the PWAC: being a parent. It does not capture the additional roles the PWAC may have, such as spouse or co-parent. Yet, when the literature is limited by a single role focus, our professional interventions may also be limited.
Dying concerns are fluctuating thoughts or feelings that are conscious or unconscious about an accepted and approaching death which stems from a palliative/terminal diagnosis by the person facing the terminal illness or by a family member coping with the impending death of a loved one (Dickstein, Reference Dickstein1972; Arndt et al., Reference Arndt, Routledge and Goldenberg2006; Kakuta et al., Reference Kakuta, Kakikawa and Chida2015). Dying concerns differ from generalized concerns when the perception changes from personal concerns to concerns for the well-being of another. For the ill patient, this occurs once they have acknowledged their impending death. For example, a financial concern is a generalized concern when the patient is troubled about paying for treatment. It becomes a dying concern when the patient accepts their terminal illness and becomes concerned about the future financial stability of their family once they die.
Dying concerns can only be identified in individuals who have accepted their impending death. An individual's readiness to discuss end-of-life issues are still being explored (Bell et al., Reference Bell, Smythe and Diver2016). Kubler-Ross's (Reference Kubler-Ross1969) seminal work states, acceptance of death may only happen once an individual proceeds through the stages of grief (e.g., denial, anger, bargaining, depression, and acceptance). However, Kubler-Ross asserts, “it is not in human nature to accept the finality of death without leaving a door open for some hope” (Kubler-Ross, Reference Kubler-Ross1969, p. 113); therefore, individuals can have acceptance of death while still being in other stages of grief. Grief is not linear but an active course that has fluctuations over time. Dying concerns are also proposed to fluctuate over time.
Dying concerns for advanced cancer patients may have similarities but also differences based on the age of the patient, the active roles they have in their daily lives, and the developmental stage of the family. For example, an elderly couple married for 35 years is likely to be financially stable and have adult children who can assist with caregiving; therefore, their concerns when faced with death may differ from a young couple who is just starting in married life, working on saving for the future, and have dependent children with ongoing and future financial demands.
Cancer research with young families has focused on parents diagnosed with early-stage cancer (Aamotsmo and Bugge, Reference Aamotsmo and Bugge2014; Zaider et al., Reference Zaider, Salley and Terry2015). Limited research has been conducted to identify the dying concerns of PWAC. The extant literature has focused on concerns of parenting with a terminal illness and the challenges the parents face, along with the impact of advanced cancer on the children. The research lacks a comprehensive definition of dying concerns which include concerns beyond the parental role such as their role as a co-parent and the effect on a spouse. Therefore, the aims of this scoping review are to (1) describe the research on the concept of dying concerns of PWAC, (2) examine how these dying concerns impact measurable outcomes, and (3) identify gaps in our knowledge of dying concerns in PWAC.
Methods
Literature search
The primary author (CC) reviewed seven databases: CINHAL, MEDLINE, PsychARTICLES, PsycINFO, Social Work Abstracts, Health Source: Nursing/Academic Edition, and Psychology and Behavioral Sciences Collection for English language articles. The following MESH terms were searched: parental concern(s), cancer, advanced cancer, metastatic cancer, terminal cancer, end-of-life cancer, and palliative cancer connected by the Boolean term AND. The term “dying concern(s)” was searched but only yielded articles with an elderly population. The term “parental concerns” was searched to identify research within a younger population. Parental concern will be used interchangeably throughout the rest of the paper to discuss dying concerns of PWAC. Retrieved articles were published between 2008 and 2018. Reference lists of included articles were reviewed to identify additional articles. PRISMA guidelines were utilized for this scoping review (Moher et al., Reference Moher, Shamseer and Clarke2015). The information flowchart is depicted in Figure 1.
Fig. 1. PRISMA information flowchart.
Study selection
The inclusion criteria were as follows: (1) samples were parents with advanced cancer (Stage III and IV); (2) measured or described parental or dying concerns; (3) peer-reviewed; and (4) published not more than 10 years ago. The exclusion criteria were as follows: (1) samples were dyads of spouse and/or caregiver, parent and children, and/or parents with adult children; (2) early-stage cancer; and (3) pediatric and/or adolescent cancers. Identified abstracts were organized in tables created by the first author.
Data extraction
See Tables 1 and 2 for the extracted data. Data extraction was completed by the first author and verified by the remaining authors. Differences of opinions were resolved through discussion.
Table 1. Extracted data from qualitative studies
CA, Cancer; MBC, Metastatic Breast Cancer; PA, Prostate Cancer; MM, Multiple Myeloma; MFH, Malignant Fibrous Histiocytoma.
a Mean age of children not collected.
Table 2. Extracted data from quantitative studies
N, Number of Patients; HADS, Anxiety and Depression Scale; QOL, Quality of Life; RAND-36, Health-Related QOL; CBCL, Child Behavior Checklist; YSR, Youth Self-Report; FAD, Family Assessment Device; MBC, Metastatic Breast Cancer; PCQ, Parenting Concerns Questionnaire; FACT-G, Functional Assessment of Cancer Therapy-General; SCID, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition Axis I Modules; PROMIS, NIH Patient-Reported Outcomes Measurement Information System; KPS, Karnofsky Performance Status Scale; ECOG, Eastern Cooperative Oncology Group; MOS, Medical Outcomes Study Social Support Survey.
a Mean age of children not collected.
Results
The literature search resulted in 1,526 articles. At the abstract level, 1,506 were excluded because they did not meet the aims of this scoping review. The remaining 18 articles were assessed for eligibility by reading the full text. Four were excluded: three articles included participants with early-stage cancer and one article was a commentary on previous research. Fourteen articles were used in the final summary.
Eight articles used quantitative methods (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Schmitt et al., Reference Schmitt, Piha and Helenius2008; Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009; Ernst et al., Reference Ernst, Götze and Krauel2012; Stinesen-Kollberg et al., Reference Stinesen-Kollberg, Thorsteinsdottir and Wilderäng2013; Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016, Reference Park, Deal and Yopp2018). Four articles were qualitative studies (Lewis et al., Reference Lewis, Willis and Yee2016; Check et al., Reference Check, Park and Reeder-Hayes2017; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017) and two used mixed methods designs (Muriel et al., Reference Muriel, Moore and Baer2012; Kuhne et al., Reference Kuhne, Krattenmacher and Bergelt2013). Quantitative methodological studies varied between cross-sectional, descriptive, and longitudinal. Cross-sectional designs were commonly utilized (n = 7). Qualitative methodologies were qualitative descriptive (n = 3) and social constructionists’ (n = 1) approaches.
Studies were limited to industrialized western countries. Six articles were conducted in Europe (n = 5) and Australia (n = 1), with the remaining conducted in the United States (n = 8). All used a single institution for data collection. Qualitative studies were mostly descriptive in design (n = 3) with the aim to describe the experiences of being PWAC. Sample sizes were small to moderate for the quantitative cross-sectional designs (n = 63 – 381), were exploratory in nature, and lacked comparison groups.
Limitations were noted in gender and race, cancer type, and the structure of the family unit. The samples consisted primarily of White, upper, middle-class participants (n = 8) who were mostly women (n = 7). 6 out of 14 studies did not collect data on race (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Schmitt et al., Reference Schmitt, Piha and Helenius2008; Ernst et al., Reference Ernst, Götze and Krauel2012; Kuhne et al., Reference Kuhne, Krattenmacher and Bergelt2013; Stinesen-Kollberg et al., Reference Stinesen-Kollberg, Thorsteinsdottir and Wilderäng2013; Lewis et al., Reference Lewis, Willis and Yee2016). One study focused solely on White fathers (Lundquist, Reference Lundquist2017). Majority of the studies consisted of participants who were married (n = 10) (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Schmitt et al., Reference Schmitt, Piha and Helenius2008; Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009; Ernst et al., Reference Ernst, Götze and Krauel2012; Muriel et al., Reference Muriel, Moore and Baer2012; Park et al., Reference Park, Deal and Check2016, Reference Park, Check and Song2017, Reference Park, Deal and Yopp2018; Check et al., Reference Check, Park and Reeder-Hayes2017; Lundquist, Reference Lundquist2017), with one study having more non-married participants (Moore et al., Reference Moore, Rauch and Baer2015). The remaining studies did not collect marital data.
Fathers had similar concerns as the mothers in the other studies, such as concerns for their children and co-parent and maintaining their role, but the latter two had differences (Lundquist, Reference Lundquist2017). Men's concern for their co-parent was on the financial strain that may present itself when they no longer can fulfill their provider role (Lundquist, Reference Lundquist2017); whereas, women are concerned about not being able to fulfill their caregiver role.
Since the samples consisted mostly of women, the co-parent was identified as a marital husband (n = 11). A co-parent may be the spouse of the individual, but it also may be a significant other, a grandparent, or other close family members (e.g., aunt, uncle, and cousin). As for the children in the family, 10 studies did not collect the mean age of the children, only stating the children were 18 years old or younger.
The samples consisted predominantly of breast cancer (n = 11). Cancer type determines the kind of treatment a person receives. Certain treatments are more extensive than others and may affect the functional status of the patient compared to other patients.
Concerns of PWAC
When a parent has a diagnosis of advanced cancer, the major concerns identified are concerns about their children, the co-parent, and personal concerns (i.e., social concerns, psychological well-being, the physical repercussions related to treatment, and spiritual concerns).
All studies included families with children 18 years old or younger with parents having a mean age of 44. Only five studies specified the mean age of the children in the family (μ = 11.6) (Schmitt et al., Reference Schmitt, Piha and Helenius2008; Park et al., Reference Park, Deal and Check2016, Reference Park, Check and Song2017, Reference Park, Deal and Yopp2018; Check et al., Reference Check, Park and Reeder-Hayes2017). Open communication about cancer with children was a major concept in quantitative studies for PWAC and was a prominent theme in the qualitative studies. Parents were expected to have difficult conversations about their diagnosis with their children while simultaneously addressing their children's fears that they may die (Muriel et al., Reference Muriel, Moore and Baer2012; Kuhne et al., Reference Kuhne, Krattenmacher and Bergelt2013; Park et al., Reference Park, Deal and Yopp2018). Participants reported these conversations as difficult because they were uncertain about the trajectory of their disease (Lundquist, Reference Lundquist2017). In some families, emotional distress was so high parents avoided discussing their illness at home, which was identified under the theme of “uncertainty for the future” (Lewis et al., Reference Lewis, Willis and Yee2016; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Uncertainty of time of death was the main factor impeding parents from having open communication with their children about their advanced cancer.
Child functioning and disruptions in normal developmental patterns were other major concerns for parents (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Park et al., Reference Park, Check and Song2017). When the PWAC's parental function decreased, specifically in roles and communication, two studies described parents’ perception that adolescent functioning decreased (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Schmitt et al., Reference Schmitt, Piha and Helenius2008). Furthermore, parents were concerned about their children's development after their death and how their lives will alter growing up without one of their parents (Park et al., Reference Park, Check and Song2017).
Participants were concerned about the emotional impact of the illness and the potential emotional distress on their children once they died (Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016, Reference Park, Check and Song2017). At the end of life, an increase in anxiety and depression in the parents may stem from the fear their children will interpret hospice care as a sign of their parents giving up (Check et al., Reference Check, Park and Reeder-Hayes2017). The child may think the parent can continue to fight, and they may view the parent's action as selfish. Parents want to ensure the family is happy (Lundquist, Reference Lundquist2017). Maintaining normalcy is common strategy parents used to cope with and address this concern (Park et al., Reference Park, Check and Song2017). However, as cancer becomes refractory to therapy, this protective strategy stops, and reality is introduced.
Besides the emotional impact and distress of cancer on the children, parents were concerned about how their children would cope with their death (Muriel et al., Reference Muriel, Moore and Baer2012; Park et al, Reference Park, Deal and Check2016; Lundquist, Reference Lundquist2017). Parents were concerned about the long-term mental health problems their child may develop after the death (Park et al., Reference Park, Check and Song2017).
Maintaining normalcy in the household to not change routines for their children was a concern of parents. Yet, routine changes shifted based on the ill parent's moods and physical limitations (Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Check and Song2017). Parents often tried to ensure treatment schedules and managing side effects were not factors that disrupted normal daily activities for their children (Park et al., Reference Park, Deal and Check2016, Reference Park, Check and Song2017).
The co-parent was mainly defined as the spouse of the ill parent; 11 out of 14 articles had PWAC who were married women diagnosed with breast cancer. Concerns for the co-parent can be divided into current parental responsibilities and post-death responsibilities.
Quality of parenting was a current parental concern noted when the ill parent's functional ability decreased leading them to no longer be able to perform their normal parental tasks; therefore, they became concerned about the co-parent's ability to undertake the practical and emotional tasks to support all family members (Muriel et al., Reference Muriel, Moore and Baer2012; Moore et al. Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Check and Song2017). Parental responsibilities, from the perspective of PWAC, were viewed as irreplaceable (Park et al., Reference Park, Check and Song2017). PWAC perceived that they (most as mothers) were the preferred caregiver for their children. Sometime in the cancer trajectory, patients needed additional practical and emotional support to continue in their treatments. When PWAC could no longer provide the practical and emotional support to their children, the children looked to the other parent to fill their needs. Yet, PWAC, overwhelmed by their own emotions, never fully accepted this change in roles.
A concern, post-death, for PWAC was the quality of parenting their children would receive in the event of their death (Park et al., Reference Park, Check and Song2017). When the PWAC was a mother, the concern was the male co-parent would not be emotionally supportive of the children during the bereavement process (Park et al., Reference Park, Check and Song2017).
Park et al. (Reference Park, Deal and Check2016, Reference Park, Check and Song2017) have utilized the Parenting Concern Questionnaire (PCQ) to identify concerns about the emotional impact of the PWAC's illness on the co-parent. The PCQ assesses parenting concerns for use in cancer patients about the emotional and practical impact of cancer on the children and the co-parent (Park et al., Reference Park, Deal and Check2016). Their findings only assess if the PWAC had emotional concerns for their co-parent but does not address the patient's perception of what specific emotional concerns they had for the co-parent. These were the only studies to measure the emotional impact of cancer on the co-parent.
Co-parents coping with the future trajectory of the illness and the possibility of death were of concern for PWAC (Park et al., Reference Park, Deal and Check2016). PWAC reported two major coping concerns for their co-parent: their co-parents’ ability to cope with losing a partner and living as a single parent (Park et al., Reference Park, Check and Song2017). No further discussion was found for these two concerns.
PWAC expressed personal concerns about finances, maintaining parental roles, psychological distress, physical pain related to cancer, and spiritual concerns when faced with their terminal illness. Financial burdens were a major concern expressed by PWAC (Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017, Reference Park, Deal and Yopp2018). Parents expressed distress about how the financial burden would impact their children (Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017, Reference Park, Deal and Yopp2018). None of the studies elaborated on the specific financial concerns in PWAC.
Maintaining parental roles and responsibilities were common themes noted throughout the qualitative literature (Muriel et al., Reference Muriel, Moore and Baer2012; Check et al., Reference Check, Park and Reeder-Hayes2017; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Parents reported how their level of impairment impacted their abilities to maintain their parenting roles and responsibilities (Muriel et al., Reference Muriel, Moore and Baer2012; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Parental identity was the primary reason for PWAC for pursing life-sustaining cancer treatment and delaying enrollment into hospice/palliative care (Check et al., Reference Check, Park and Reeder-Hayes2017; Park et al., Reference Park, Check and Song2017).
Anxiety and depression were reported by participants and stemmed from feelings of uncertainty related to the trajectory of the disease, fear of the unknown, loss of normalcy, missing out, grief, unhappiness, disappointment, and blame (Lewis et al., Reference Lewis, Willis and Yee2016; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Physical symptoms related to cancer treatment also played a role in these psychological concerns. Participants reported physical symptoms affected their quality of life (QOL) which left individuals feeling useless and frustrated (Lewis et al., Reference Lewis, Willis and Yee2016). Pain was the only physical concern reported in two articles. Participants reported intractable pain made them slip into despair and decreased their ability to perform their caregiving responsibilities (Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017).
Remaining hopeful and finding meaning were the spiritual concerns of participants (Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Remaining hopeful for a cure and having faith helped to decrease emotional distress and facilitate resiliency (Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Finding meaning allowed participants to create resiliency and endure treatment to remain strong for themselves and their families (Lundquist, Reference Lundquist2017).
Dying concerns and the measurable outcomes in PWAC
We present how dying concerns impact PWAC's psychological distress level, QOL, family functioning, and their spirituality. The PCQ was the standardized tool to assess the severity of parental concerns on the outcomes.
PWAC have psychological distress related to their worries for their children and their parenting abilities. PWAC who worried about their dependent children are 2.26 (CI = 1.50–3.41) times more likely to have increased psychological distress compared to those who did not worry about their dependent children (Stinesen-Kollberg et al., Reference Stinesen-Kollberg, Thorsteinsdottir and Wilderäng2013). PWAC were significantly more worried (p = 0.006), depressed (p < 0.001), and anxious (p < 0.001), and were more likely to meet criteria for clinical panic disorder as compared to cancer patients without dependent children (OR = 5.41; CI = 2.13–13.69) (Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009; Stinesen-Kollberg et al., Reference Stinesen-Kollberg, Thorsteinsdottir and Wilderäng2013; Park et al. Reference Park, Deal and Yopp2018).
Maintaining parental identity and parenting self-efficacy were reported by PWAC. Researchers found that a decrease in parenting identity and parenting self-efficacy were related to an increase in parental concerns (Muriel et al., Reference Muriel, Moore and Baer2012; Moore et al., Reference Moore, Rauch and Baer2015). When PWAC could no longer maintain physical and functional capabilities, they perceived their parenting abilities as poor which increased depression and distress scores significantly (p = <0.001) (Moore et al., Reference Moore, Rauch and Baer2015). Furthermore, PWAC's poor perceptions of the co-parent's parenting ability were also related to the PWAC's depression (p < 0.001), anxiety (p < 0.05), and distress (p < 0.01) (Moore et al., Reference Moore, Rauch and Baer2015). This finding suggests that a decrease in parenting ability maybe contribute to indignity with the co-parent due to the PWAC's dependency on them (Moore et al., Reference Moore, Rauch and Baer2015). Muriel et al. (Reference Muriel, Moore and Baer2012) also supported the correlation between parental concern and anxiety (p < 0.05) and depression (p < 0.05) but also found a significant correlation between parental concerns and patient functioning (p < 0.05) and overall distress (p < 0.05).
Psychological distress shows differences and similarities by the gender of the PWAC regarding anxiety and depression. Males who had dependent children less than 18 years old were significantly more anxious (p = 0.02) compared to men who did not have dependent children (Ernst et al., Reference Ernst, Götze and Krauel2012). Additionally, anxiety in women was not related to having dependent children but related to a diagnosis of advanced cancer (p = 0.03) (Ernst et al., Reference Ernst, Götze and Krauel2012). In both genders, increased depression scores were significantly associated with the presence of advanced cancer (p = 0.04) (Ernst et al., Reference Ernst, Götze and Krauel2012).
QOL in PWAC is related to their parental concerns about their co-parent and children, their psychological distress, and continuing treatment for extending life over QOL. Increased parental concerns were associated with a decrease in QOL (p < 0.001) (Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016). Lower QOL scores were associated with an increase on the PCQ, specifically with financial concerns and communicating with children about cancer (p = 0.04) (Park et al., Reference Park, Deal and Yopp2018). QOL was also related to how the PWAC perceived their child functioning both physically and emotionally (p < 0.01) (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008). Anxiety and depression also explained 50% of the variance of QOL in PWAC (Park et al., Reference Park, Deal and Yopp2018). These studies supported how being PWAC impacts the QOL of the patient.
PWAC preferred extending life over QOL. Treatment courses that focus on extending life rather than on treatments that provided relief from pain and discomfort were preferred (OR = 1.77; CI = 1.07–2.93) (Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009). Increased parenting concerns were noted in those who preferred life-extending treatments (p < 0.001) (Muriel et al., Reference Muriel, Moore and Baer2012). 27 out of 42 participants in Check's et al. (Reference Check, Park and Reeder-Hayes2017) study preferred treatment that would extend their time with their children. This may explain Nilsson's et al. (Reference Nilsson, Maciejewski and Zhang2009) finding of worse QOL during the last week of a patient's life when they had dependent children (p = 0.04) compared with those patients who did not have dependent children. Furthermore, 41% of PWAC stated that having children impacted their pursuit of palliative care (Park et al., Reference Park, Check and Song2017).
Family functioning assessed how a family communicated and worked together to solve the problem (Schmitt et al., Reference Schmitt, Piha and Helenius2008). Physical limitations of cancer on the family and how the family will emotionally cope with the PWAC's death were associated with a poorer perception of family functioning (Park et al., Reference Park, Deal and Check2016). In families of palliative cancer patients, Kuhne et al. (Reference Kuhne, Krattenmacher and Bergelt2013) found that overall family functioning was perceived as functioning well from all family member's perspectives. However, children in the family perceived increased family dysfunction concerning their roles (p = 0.04) when their parents did not. Spouses also reported more family dysfunction in problem-solving and general functioning, (p = 0.04) and (p = 0.02), respectively (Kuhne et al., Reference Kuhne, Krattenmacher and Bergelt2013). Nilsson et al. (Reference Nilsson, Maciejewski and Zhang2009) and Schmitt et al. (Reference Schmitt, Piha and Helenius2008) added further support to this disconnect. When family functioning is perceived as low by the patient and the co-parent, the PWAC becomes more depressed (p < 0.001) (Schmitt et al., Reference Schmitt, Piha and Helenius2008). Also, co-parents were more likely to meet criteria for major depressive disorder (OR = 4.53; CI = 1.47–14.00) and general anxiety disorder (OR = 3.95; CI = 1.29–12.16) due to a decrease in family functioning (Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009).
Nilsson et al. (Reference Nilsson, Maciejewski and Zhang2009) was the only study to find when parenting concerns are increased, PWAC are half as likely to be at peace (OR = 0.53; CI = 0.32–0.87). No other studies were found that explored the association between parenting concerns and spirituality among PWAC.
Discussion
This scoping review is the first in the literature to identify the multiple concerns of PWAC using the broader concept of dying versus parental concerns, specifically about their children, their co-parent, and their health. Of the 14 studies, 11 expressed concerns about their worries and their dependent children, and four expressed concerns about their co-parent. Personal uncertainties included social, psychological, physical, and spiritual apprehensions. PWAC fears for their children included communicating the advanced cancer diagnosis, disruption in normal development, the emotional impact of cancer, coping behaviors, and routine changes. Fears for their co-parent included the emotional impact of cancer, co-parent coping, and quality of parenting. Additionally, these concerns had significant effects on psychological distress, QOL, family functioning, and spirituality of PWAC.
The review provides new information on dying concerns of PWAC and three key points need to be addressed. First, being PWAC impacts the person's abilities to maintain their parental roles and responsibilities which impacts their family lives. Second, PWAC have decreased QOL, specifically at the end of life. Lastly, PWAC have significantly more emotional and psychological distress compared to cancer patients with no dependent children and they have increased family dysfunction.
Qualitative findings found that PWAC expressed concerns about maintaining parenting identity, communicating the advanced cancer diagnosis, and the effects it may have emotionally and practically on their children and co-parent (Muriel et al., Reference Muriel, Moore and Baer2012; Lewis et al., Reference Lewis, Willis and Yee2016; Check et al., Reference Check, Park and Reeder-Hayes2017; Lundquist, Reference Lundquist2017; Park et al., Reference Park, Check and Song2017). Not being able to maintain parenting roles in the family cause PWAC to feel the loss of normality in the family. When role changes occur in the family, it can cause family chaos and decrease their family's functioning and their parenting self-efficacy.
PWAC expressed issues with open communication with their immediate family. Communication problems about advanced cancer caused issues in maintaining family normality. When death was not discussed openly, PWAC became concerned about their family's psychological and physical well-being while they contemplate their deaths. Maintaining a parental identity while coping with an advanced cancer diagnosis can cause patients to feel torn between their responsibilities in parenting and what they are functionally capable of doing during their cancer trajectory. While parental identity and self-efficacy were something PWAC tried to maintain, they did express how their functional status from treatment altered their roles which also impacted their treatment decisions. Qualitative results suggest being PWAC affects the preference for choosing palliative or hospice care, preferring extending time with their children instead of QOL. PWAC maybe misjudging the value behind palliative care, which is to assist patients to increase their QOL while continuing life-prolonging treatment, not ending treatments to shorten their lifespan.
The quantitative findings support PWAC have decreased QOL when compared to patients who do not have dependent children at home which was related to having increased parental concerns (Gazendam-Donofrio et al., Reference Gazendam-Donofrio, Hoekstra and van der Graaf2008; Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009; Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016, Reference Park, Deal and Yopp2018). Two interesting findings from this review was at the end of life, PWAC had worse QOL and are less likely to be at peace toward the end of life (Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009). Religious beliefs have been found to increase coping, QOL, and feelings of support in the elderly advanced cancer population (Tarakeshwar et al., Reference Tarakeshwar, Vanderwerker and Paulk2006). However, Nilsson et al. (Reference Nilsson, Maciejewski and Zhang2009) is the only study to measure the concept of spirituality in PWAC. More research needs to be conducted in this area.
The emotional and psychological distress from PWAC stems from concerns about their family (Schmitt et al., Reference Schmitt, Piha and Helenius2008; Nilsson et al., Reference Nilsson, Maciejewski and Zhang2009; Ernst et al., Reference Ernst, Götze and Krauel2012; Muriel et al., Reference Muriel, Moore and Baer2012; Stinesen-Kollberg et al., Reference Stinesen-Kollberg, Thorsteinsdottir and Wilderäng2013; Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Check2016, Reference Park, Deal and Yopp2018). Anxiety and depression are psychological issues found in cancer patients; however, the prevalence of having anxiety and depression in PWAC is due to their young parental status. Amongst anxiety and depression, this review has found an increase in clinical panic disorder, worry, and distress when compared to those cancer patients who do not have dependent children.
Lastly, PWAC have increased family dysfunction regarding roles and communication with their families (Schmitt et al., Reference Schmitt, Piha and Helenius2008; Kuhne et al., Reference Kuhne, Krattenmacher and Bergelt2013; Moore et al., Reference Moore, Rauch and Baer2015; Park et al., Reference Park, Deal and Yopp2018). This review reveals the disconnect concerning family dysfunction between family members. In Kuhne et al. (Reference Kuhne, Krattenmacher and Bergelt2013), when families were assessed together, the family perceived family functioning as well, but when measured separately, the children and spouses perceived it as poor. Kuhne and colleagues argued that family members may use protective strategies to keep PWAC positive and free from additional family concerns. More research is needed to support the findings, but family therapy research would support the results (Lewis et al., Reference Lewis, Willis and Yee2016; Park et al., Reference Park, Check and Song2017). This review also supports the lack of research in understanding dying concerns when the PWAC is the husband, in different family dynamics, and the age range of the children included in the study all of which may have different findings. For instance, what PWAC are concerned about for their children may vary depending on the developmental age of their children. Families with adolescents may have different concerns compared to families with preschoolers.
Although data are limited, the review suggests that race, culture, and socioeconomic status may affect areas of concern in young families with PWAC. In an interventional pilot study of African American families with a parent with cancer, Davey et al. (Reference Davey, Kissil and Lynch2013) found that the communication intervention increased conversations between parents and children (p = 0.05) but did not decrease anxiety or depression in these families. In contrast, two communication interventions with White families found that their interventions improved the communication between parents and children (t = 3.18) and decreased psychological distress of parents (p < 0.005) (Thastum et al., Reference Thastum, Munch-Hansen and Wiell2006; Kobayashi et al., Reference Kobayashi, Heiney and Osawa2017). More research with diverse families is needed to support this research.
Implications for further research
This review indicates the need for more research in identifying the broader “dying concerns” in PWAC rather than the limited “parental concerns” concept. Future research should also include a more diverse sample relative to the gender of the ill parent, race/ethnicity of the PWAC and family, the cancer type, and family units. Furthermore, an understanding of dying concerns from the perspective of the co-parent and children needs to be identified.
There is still much to be studied in dying concerns research in PWAC. Most important, the research needs to understand the term “dying concern” regarding PWAC and the family. The term “parental concern” was used in place of dying concern, but this does not encapsulate the full meaning of the term. Although the studies focused on parental concerns and measuring these concerns using the PCQ, it does not capture the broader term of dying concerns. The PCQ only focuses on the role of being a parent (Muriel et al., Reference Muriel, Moore and Baer2012). Questions for the co-parent assess the emotional and practical support of the PWAC during treatment, plus, the emotional and practical support for the children in the event of the PWAC's death. It does not assess concerns for the co-parent themselves. Dying concerns may impact parental concerns, but PWAC are more than just parents; therefore, the concept of dying concerns needs to be further defined.
Future research should identify dying concerns for the co-parent, from the PWAC's perspective. Therefore, the research can start understanding the concerns from the co-parent's perspective. Communication interventions can then be developed to assist PWAC and the co-parent to increase family functioning, feel more at peace, and increase the likelihood of enrolling in palliative/hospice care to increase QOL.
A long-term research goal would be to identify concerns from the co-parent's and the children's perspective. Researchers can then develop a holistic view of dying concerns of PWAC and their families from a family perspective. A holistic approach may assist researchers in developing family interventions to decrease distress noted by families. Identifying dying concerns from all family members may enhance provider-initiated communications between family members and health care providers to improve psychological distress, QOL, family functioning, and spirituality of all family members.
Acknowledgment
The Jonas Nurse Leadership Scholarship 2016–2018 for sponsoring the first author.
Conflict of interest
There were no conflicts of interest related to the study.
