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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptNIH Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
Cancer. Author manuscript; available in PMC Sep 15, 2011.
Published in final edited form as:
PMCID: PMC3164357
NIHMSID: NIHMS317884

Parental cancer and the family: A population-based estimate of the number of US cancer survivors residing with their minor children

Abstract

Background

Cancer diagnosis and treatment of a parent has considerable impact on the lives of their minor children, family caregivers, and patients themselves. Understanding the number and characteristics of the population of cancer survivors with children under 18 years of age would help to better target services for these survivors and their children, and stimulate and inform research on these understudied families.

Methods

This study identified adults with a history of cancer (n= 13,385) who participated in the United States National Health Interview Survey (NHIS) between 2000 and 2007. We examined the prevalence and characteristics of survivors residing with their minor children, both in the total sample and among survivors diagnosed within the last two years.

Results

18.3% (95%CI 16.3–20.5) of recently diagnosed survivors and 14.0% (95%CI 13.3–14.8) of all survivors reported living with a minor child. Most of these survivors were female (78.9%), married (69.8%), and under the age of 50 (85.8%). Of the 3,193 identified children of survivors, 30.5% were under age 6 at the time of their parent’s cancer diagnosis; 33.4% were born after the diagnosis. Using population-based weights, we estimate that 1.58 million US cancer survivors reside with their minor children, representing 2.85 million children. Further, an estimated 562,000 US minor children are living with a parent in the early phases of cancer treatment and recovery.

Conclusions

There is a large population of families for whom cancer may pose special challenges and for whom needs assessment and referral to resources are essential.

Keywords: cancer survivors, parents, children, adolescents

Introduction

An estimated 22.4% of cancer cases occur in individuals between 21 and 55 years of age1. These are prime child-bearing and parenting years, so a substantial proportion of survivors in this age range may have minor children. Cancer and its treatment pose unique challenges to survivors with minor children and may have a more negative impact on these individuals—and their families, compared to survivors without children or those with adult children. Affected parents may experience heightened distress related to worry about not seeing their children grow up, inability to perform usual parenting activities, the strain of multiple roles while ill, anger or resentment at multiple real or perceived losses, and the untimeliness of their illness2. The well parent may experience distress related to the need to assume, even if only temporarily, the ill parent’s roles, while still performing all of her or his own roles. Worry about the financial health of the family can become an added stressor. Many parents also struggle with what to tell their minor children about their own or their loved one’s illness and future.

The negative impact of cancer in a parent can extend to the children as well. Research suggests that children whose parents are diagnosed with cancer may experience problems in many domains, including emotional, social, cognitive, behavioral, and physical functioning 3, 4. Distress and functioning may vary depending on the child’s age, gender of the parent with cancer, nature of the illness and treatment effects, gender of the child, degree of attachment with the parent who is ill, family dynamics, and whether the family unit is intact, divorced, or separated. Common problems can include regressive behavior, anxiety, and difficulties in school and other social settings. Adolescents show greater emotional problems than younger children, especially adolescent daughters of women with cancer 5; however, studies have found increased somatic complaints among children of all ages whose parents have cancer 3. Family disruption may be greatest during the initial period of cancer diagnosis; however, health challenges and psychosocial concerns can persist well after treatment has ended.

Due to the unique challenges faced by cancer survivors who are caring for minor children and their potentially increased burden of cancer, these individuals may be in greater need of psychosocial services to facilitate their own and their family’s adjustment. Prior work has shown that parents may be unaware of elevated levels of distress in their children both during and after cancer and may benefit from professional services that assist them in recognizing and responding appropriately to their child’s distress6 as well as managing their own distress and other symptoms. A recent Institute of Medicine report 7 calls for oncology teams to systematically identify the psychosocial needs of cancer patients and their families and link them with appropriate services. Although this is important for every cancer survivor, it may be particularly important for families in which the survivor is caring for minor children.

Little is known about the number and characteristics of cancer survivors who reside with their minor children. Information about children is not routinely collected in cancer registries and estimates for the proportion of cancer survivors with children in the household have not been published. The purpose of this analysis was to use a representative public health survey to estimate the number of cancer survivors residing in the US who have one or more children under the age of 18 living in their household and to describe their characteristics. We also present the number of those survivors diagnosed in the last two years who are living with their minor children who may be experiencing the greatest disruption from the parent’s cancer and are most likely to be interacting with the oncology treatment team. Finally, we describe the characteristics of the children of these survivors.

Greater awareness of the number and characteristics of cancer survivors with minor children may facilitate important screening and referral efforts to help survivors who are parents effectively deal with their unique stressors. Access to these figures would also help inform efforts by health-related, social, and non-profit service organizations to form effective plans and partnerships to better anticipate and meet the support needs of these families. Finally, population-based data about this group of survivors have the potential to stimulate and inform research on these largely understudied families.

Method

Source of the Data

Information for this analysis was drawn from the National Health Interview Survey (NHIS)8 for the years 2000–2007. The NHIS is an annual, in person, nationwide survey of approximately 30,000–40,000 households that is used to track trends in illness and disability in the United States. A complex survey design involving clustering, stratification, and multistage sampling is used to derive a representative sample of the civilian, non-institutionalized population. Households and noninstitutional group quarters (e.g. college dormitories) are selected for participation on the basis of a sampling plan derived from the US census. Black, Hispanic, and Asian individuals are oversampled. Trained interviewers conduct the interview in the home using computer assisted personal interviewing (CAPI). Final response rates for the adult sample from 2000 to 2007 ranged from 67.8% to 74.3%9. Basic information is collected about all family members residing in the household (family core) and more in-depth health information is collected for one random adult (sample adult) and child (sample child). Self-reported demographic (age, education, race/ethnicity, marital status) and disease-related (cancer site, and age at first cancer diagnosis) characteristics were drawn from the family core and sample adult surveys. Time since diagnosis was calculated by subtracting age at first cancer diagnosis from the participant’s current age.

Sample

For the years 2000–2007, a total of 17,173 adults reported a history of cancer. We excluded persons who reported a history of exclusively non-melanoma or “unknown” skin cancers (n=3,788). The remaining respondents (n= 13,385) were classified as having one or more minor children (less than 18 years of age) living in the home, if the cancer survivor was identified as a biological, adoptive, step, or foster parent of the child.

Analytic Plan

We used SUDAAN (Version 9) for all data analyses to account for the unequal probability of selection resulting from the complex survey design of the NHIS. The incorporation of sampling weights is necessary to avoid biased estimates of model parameters and variances. We examined the proportion of survivors residing with their minor children for the entire population of cancer survivors and then separately for the group of survivors diagnosed less than two years before the survey. We used descriptive statistics to characterize these survivors and their children. In addition, we calculated national estimates for the number of cancer survivors residing with their minor children by multiplying the percent of survivors with children by the sum of the weights to obtain population estimates. The number of US children residing with cancer survivors was calculated by multiplying the mean number of children per survivor by the estimated number of survivors.

Results

Of the identified cancer survivors, 1,769 (weighted percent= 14.0, 95% CI 13.3–14.8%) resided with one or more of their minor children. Demographic characteristics of the survivors living with their minor children are shown in Table 1. Most of these survivors were female (78.9%), married (69.8%), and under the age of 50 (85.8%). On average, survivors had one to two (mean= 1.8) children residing with them. Common diagnoses included cancer of the cervix, breast, or uterus, and melanoma. On average, survivors with minor children were 7.9 years out from their cancer diagnosis. Almost 12% of the survivors with minor children were survivors of childhood/adolescent cancer (diagnosed before the age of 20); 32.3 % were diagnosed in their 20s; and 28.3% were diagnosed in their 30s. We identified 3,193 children less than 18 years of age residing with a parent with cancer (see Table 2). The children were equally divided between males and females, and reasonably evenly distributed across age ranges. Nearly a third of the children were born after their parent’s cancer diagnosis. Of the children born before their parent’s diagnosis, most were under 13 years of age when their parent was diagnosed and treated for cancer.

Table 1
Characteristics of Cancer Survivors Residing with their Minor Children
Table 2
Characteristics of Minor Children of Cancer Survivors

Using population-based weights for the adult sample, we calculate that approximately 1.58 million US cancer survivors have children less than 18 years of age living with them. To estimate the number of minor children living with a parent with a history of cancer, we multiplied the mean number of children per cancer survivor (1.8) by the population weighted estimate of the number of cancer survivors with children (1,583,353). We estimate that 2.85 million US children less than 18 years of age are living with a parent who has been diagnosed with cancer.

A slightly larger proportion of recently diagnosed (less than two years earlier) cancer survivors (n= 341) had minor children residing in the household (weighted percentage= 18.3%, 95% CI 16.3–20.5). We estimate that approximately 296,000 recently diagnosed US cancer survivors were residing with their minor children. Multiplying the mean number of children per recently diagnosed cancer survivor (1.9) by the population weighted estimate of the number of recently diagnosed survivors with children (295,561) results in the estimate that approximately 562,000 US minor children are living with a parent in the early phases of cancer treatment and recovery. Demographic characteristics and cancer sites were very similar to the general survivor population (data not shown).

Discussion

This paper represents the first published US population-based estimate of the proportion of cancer survivors residing with minor children. We estimate that 14% of US cancer survivors have minor children under their care, representing a population of approximately 1.58 million survivors and 2.85 million children. The proportion of recently-diagnosed survivors living with minor children was even larger. Our estimates are best interpreted as the population of survivors and recently-diagnosed survivors residing with minor children at the center of our time interval (i.e., 2003–2004). Although the overall survivor population is expected to grow in the coming years, it is not known whether this specific sub-population of survivors will grow as well.

On average, the cancer survivors were almost eight years post-diagnosis. This suggests that many of them likely had young children at the time of their initial diagnosis and treatment, or in some cases, had children subsequent to their diagnosis. This is likely a particularly stressful time for young families. As discussed earlier, survivors caring for young children often have significant distress related to concerns about living to see their children’s’ future and role strain from parenting while dealing with their own challenges2. Because children’s health and functioning are closely tied with those of their parents, the young offspring of these survivors are at increased risk for problems in emotional, social, cognitive, behavioral, and physical functioning domains3, 4. Additionally, the presence of young children in the household may contribute to the strain experienced by family cancer caregivers. Prior work10 documents that cancer caregivers with dual roles caring for cancer patients and children report high levels of caregiving strain and greater emotional distress compared to caregivers not caring for children. Thus, implementation of the recent Institute of Medicine report’s 7 call to systematically identify the psychosocial needs of cancer patients and their families and link them with appropriate services may be particularly important for families in which the survivor is caring for minor children.

There are several limitations to this work. We could not identify children who were not residing with their parent who was diagnosed with cancer because the NHIS only asks about people who reside in the same household. Estimates from the 2002 National Survey of America’s Families suggest that 2.5% of US females and 9.1% of US males had children residing outside the house11. Applying this percentage to the population of cancer survivors is inappropriate because it would assume that patterns of childbearing and household makeup are similar in adults with and without a history of cancer and would not account for the demographic differences between cancer survivors and the general adult population. Thus this analysis may underestimate the true proportion of cancer survivors with children, but likely identifies those children who may be most adversely affected by their parent’s illness as a consequence of living in the same household. Similarly, this analysis focused on parents (biological, adoptive, step, or foster) with cancer. We did not include children residing with other relatives (e.g., grandparents, siblings, or aunts and uncles) with cancer. Although this number may be substantial, the psychosocial needs and family adjustment issues may be different.

We also did not have information about stage, recurrence, or current treatment to know what phase of survivorship parents with cancer were currently experiencing. Specific needs of minor children during different phases of the survivorship experience need to be assessed in future studies since the impact of a cancer diagnosis is likely different not only by the age of the child affected, but also based on whether or not a parent is expected to survive for an extended period of time (i.e., the prognostic nature of the cancer diagnosed), the type of cancer being treated (the meaning of this for a given child and the visibility of treatment effects), and the length and rigor of the treatments required to cure or control the illness. In this analysis the data on cancer diagnosis type and timing were self-reported: future studies should confirm these findings using objective data.

Finally, this sample is representative of United States adults residing in the community, and thus best reflects the population of long-term survivors. However, cancer survivors in the NHIS may not reflect patterns of cancer incidence, and cancers with shorter survival are under-represented. According to National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) statistics, the most common cancers diagnosed in individuals aged 20–40 include Hodgkin lymphoma, testicular, melanoma, thyroid, breast, and cervical cancers1. These sites were all among the most common cancers diagnosed among our sample of survivors living with minor children, with the addition of uterine and ovarian cancers. Brain and other nervous system cancers are also among the most common cancers for young people between the ages of 20 and 241, but were not among the common cancer sites in our sample, possibly because of relatively lower survival rates.

The majority of the identified cancer survivors living with their minor children were female. Females between the ages of 20 and 45 years of age are more likely than males to be diagnosed with invasive cancer, but they are also less likely to die of cancer after diagnosis12. In addition, women are more likely to be single parents or reside with their children after divorce, This suggests that females should predominate among the group of long-term survivors living with their minor children. However, it has also been suggested that men may be more likely to underreport cancer history on self-report surveys such as the NHIS and hence, not be identified as cancer survivors,13

Importantly, this analysis includes only living survivors and does not identify those children whose parent died of cancer, the group likely to be the most adversely affected by a parent’s illness. Unfortunately SEER does not collect data on family structure and thus, reliable population estimates for the number of children who have lost a parent to cancer are not known. A rough estimate can be obtained by applying the percentage of newly diagnosed survivors residing with minor children from the NHIS to SEER estimates of the number of cancer deaths that occurred in persons 20–64 years of age (89,029 cancer deaths in men and 81,301 deaths in women for 200614). This would result in an estimate of approximately 29,000 deaths estimated to occur among cancer survivors with minor children. Futher, multiplying this number by the mean number of children per survivor from the NHIS results in an estimate that approximately 55,000 US minor children had a parent who died of cancer. This is a rough estimate at best because it assumes that the pattern of childbearing is identical between recently diagnosed adults with cancer and those adults who die of cancer. It is likely that the adults with a history of cancer who respond to the NHIS are healthier over their lifespan than adults who die of cancer and thus may have more children. Further, the estimate does not fully account for differences in the likelihood of having children at different age ranges.

Our analysis of the NHIS indicates that more than a million US families with minor children are faced with cancer in a parent. We hope that by documenting the significant number of families affected, greater attention will be given to the identification of these potentially at-risk groups. Further, it is hoped that increased awareness of these figures will lead to future studies that expand our understanding of the public health impact of cancer and guide appropriate psychosocial service planning. To facilitate these goals, future studies should identify the characteristics of those families that place them at greatest risk of poor adjustment-----as well as the characteristics of those families who are doing relatively well after the parent has cancer, and also identify the comprehensive needs of all members of these families. For example, the needs of families with teen-aged children are likely to be different from the needs of families with very young children. Needs also may differ depending on the extent and nature of the long-term and late effects of cancer the parent is experiencing, or by family structure or type of family dynamics. Future research should also test tailored interventions that meet these needs to determine what works, for whom, and when in the course of survivorship it should be delivered. Finally, routine assessment of family adaptation as well as referral to appropriate support services has been identified as a key component of survivorship care.7 The oncology team should implement strategies to assist these families, such as that modeled in the program by Rauch and colleagues15 in which oncology clinicians learn about the patient’s children, and then maximize the child’s support system, facilitate honest communication about cancer, address common questions, prepare the child for hospital visits, and help the parent and child to say goodbye when needed. Some promising interventions to help these families are currently in development. However, to ensure integrated, comprehensive care for these families in the future, examination is critically needed of clinical delivery systems that allow for the efficient and effective screening, referral, and follow-up of these families, and that work within, and where possible leverage, extant healthcare structure, reimbursement, and staffing constraints.

Acknowledgments

The authors gratefully acknowledge Dr. Diana Jeffery and Dr. Noreen Aziz for their helpful feedback during the inception and shaping of this manuscript.

Kathryn Weaver is now at Wake Forest University School of Medicine, Division of Public Health Sciences, Department of Social Sciences and Health Policy.

Footnotes

There are no financial disclosures for any authors.

References

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