essay about parent having cancer

When Your Parent Has Cancer: A Guide for Teens

This guide is for young people who have a parent with cancer. You are not alone. Find out what has helped other teens get through this tough time.

Use this guide to get information and advice on:

• Ways to deal with changes your family may go through
• Dealing with stress
• Finding support and talking with your friends
• How you can help yourself and your parent
• Cancer, treatments, and side effects
• Life after treatment and the road ahead
• Additional resources and organizations

Tested and developed with advice from teens, this guide includes quotes from teens who have a parent with cancer, checklists to help you get support from others, and a section of related organizations and resources.  

The information in this booklet was last updated in February 2012.

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Effects of Parental Cancer on Children and Adolescents

Cancer is a chronic and sometimes terminal illness that impacts the person physically, emotionally and often financially. Time becomes a commodity, and the fragility of life becomes salient, often accompanied by an increase in humility and gratitude. Life often gets turned upside down; familial roles might change and a family may lose financial security. All family members may be affected by a loved one’s cancer, and children are among the most vulnerable and susceptible to familial impacts.  This article will briefly explore some of the psychosocial issues that children may experience when a parent or guardian is diagnosed with cancer.

Difficult Emotions

Maryrose Mongelli, MSW, LMSW, Women’s Cancers Program Coordinator, CancerCare

Receiving a cancer diagnosis may elicit difficult emotions such as denial, anger, anxiety and/or depression, and these emotions may manifest in ways that psychologically affect children.  Family members experience turmoil when a parent is diagnosed with cancer. A newly diagnosed individual will begin to contemplate how they will tell their family, and if the individual is a parent with dependent children, they sometimes struggle with how to explain cancer to their children. Some may not tell children that they have cancer. In fact, parents may avoid using terms associated with cancer, such as chemotherapy, radiation, surgery and even the word cancer itself around their children as a means to protect their child(ren) from distress, disruption in their life, as well as avoiding questions about cancer and death. Avoidance is a coping mechanism that people use to protect themselves from experiencing difficult emotions when they are not ready to confront and accept the reality of why they are having these emotions.

Be Open and Honest

For a parent/caregiver with cancer, talking with their dependent children is one of the most difficult conversations a parent can have, but being open and honest with their child(ren) will help the child feel secure. Allowing the child(ren) to express their emotions and ask questions allows them to feel secure and grounded during an uncertain time. When a parent chooses not to disclose their cancer diagnosis to their child(ren), it is likely that their child will become confused and feel less secure when there are significant disruptions in their routine. Therefore, one can infer that parents often underestimate the level of their children’s intuition.

Children are Perceptive

Children are perceptive about the changes around them and will begin to question—whether internally or externally—any changes that occur, such as a significant change in the home environment, their own routine or their parent’s emotional and behavioral state. Like any partnership, rapport and trust need to develop. A child-parent bond does not automatically happen. A parent must earn their child’s trust even from birth. Children, especially young children, need to feel secure in their attachment to their parent/caregiver. When a parent is emotionally absent, insecure attachment occurs, e.g. a mother’s rejection of her child at birth. Moreover, when appropriate information is withheld from a child or adolescent their fundamental view of their parent becomes skewed. Young children may make assumptions that the cause of the changes/disruptions occurring is their fault, and this may result in the child becoming anxious or depressed.

Structure and Routine are Key for Children

A child thrives when their parents (guardians) provide structure and routine, and a cancer diagnosis can cause disruption to a child’s routine.  When first diagnosed, parents of dependent children are generally physically present, but psychologically less available to their children and their partners, due to their inability to be responsive to the child’s/adolescents needs (Earley & Cushman, 2002), resulting from a cancer diagnosis. This may result in a change in family dynamics, e.g. children might become parentified. Parentification is the role reversal between the child and the parent/caregiver, whereby the child becomes obligated to become the caregiver for their parent/caregiver, e.g. caring for younger siblings. If the child is an adolescent he/she may find employment to supplement the financial impact cancer has on the family.

As a result of parentification, adolescent truancy rates may increase and school attendance rates may decrease (Shah, Armaly, & Swieter, 2017). The parentification of children/adolescents prevents their personality, social, and emotional development. Poor social and emotional development may have significant impact on their future relationships. As a result, psychological issues that can occur in children when a parent is diagnosed with cancer or chronic illness are predominately adjustment disorders, anxiety, and depression. Based on a cohort study conducted by Wallin, et.al (2018), adjustment disorders were more common among children/adolescents aged 13 and older, keeping in mind that the psychiatric history of the parent with cancer did not modify the results.

Changes in Behavior

As parents are mentally and physically distressed, they may not have the ability to identify that their children’s behavior has changed. Changes in behavior in the home can often carry over into school or social environments. Children with a depressed or anxious mood may withdraw from activities, act out, and have diminished academic performance. Research shows that adolescents, especially adolescent girls, exhibit more psychosocial distress than pre-adolescent children. According to Welch, Wasdworth & Compas (1996), parents may be unaware of their child(ren)’s emotional distress, or have difficulty acknowledging it.

Children, not wishing to further burden their parents, may not express their emotions.  The internalization of emotions among family members, such as parents not discussing cancer to spare their child or children internalizing their feelings to avoid burdening their parents, leads to a lack of communication.

Communication is Key

In order to avoid misinterpretations or additional stress and anxiety within in the family when there is a cancer diagnosis, communication is key. Talking with children about their cancer diagnosis can be very distressing and is one of the most difficult conversations to have, and the first step is by using the word CANCER. As with any situation when talking with children it is best to talk in terms that their child(ren)/ adolescents can understand e.g., “special medicine.” Parents can reassure their children that the cancer is not their fault, as well, giving them an opportunity to ask questions. Involving children in ways they can contribute to the parent’s treatment can be accomplished by assigning age appropriate tasks. Also, it is important to discuss the changes that may occur during treatment. Finally, reassure the child(ren) that they will always be cared for.

Although difficult during a time of great distress, communication allows the family to maintain stability within the unit by reducing misunderstandings, arguments, and fear. Within a family unit, stability or family homeostasis, is considered the family “NORM.” Considering that all families are different, ideally stability would be when all family members feel supported and nurtured. Stability within the home may combat a sense of insecurity. Insecurity may increase anxiety and depression among the family members and negatively impact the psychosocial functioning of children and adolescents. In order to mitigate feelings of insecurity and instability stemming from a cancer diagnosis, ideally a patient’s treatment plan would include psychoeducation about how cancer affects the family. In addition, the patient’s treatment plan could include family counseling and psychological intervention if necessary. Children and parents are equally affected by cancer, and employing all resources available can achieve stability in a potentially unstable situation.

About the Author

Maryrose Mongelli, MSW, LMSW, is Women’s Cancer Program Coordinator with Cancer Care . She provides supportive counseling and resources to patients, caregivers, loved ones, and to those who have experienced the loss of a loved one. She is a part of the Cancer Care for Kids program and is also is affiliated with the National Association of Social Workers (NASW).

About Cancer Care

Founded in 1944, Cancer Care is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Its comprehensive services include counseling and support groups over the phone, online and in-person; educational workshops; publications; and financial and co-payment assistance. All Cancer Care services are provided by oncology social workers and world-leading cancer experts. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).

Earley, L., & Cushman, D. (2002). The Parentified Child. Clinical child psychology and psychiatry, 7 (2), 163-178.

Ruoqing, C., Regodón Wallin, A., Norén Selinus, E., Sjölander, A., Fall, K., Valdimarsdóttir, U., Fang, F. (n.d.). Psychiatric disorders among children of parents with cancer : A Swedish register-based matched cohort study. Retrieved from http://urn.kb.se/resolve?urn=urn:nbn:se:oru:diva-67312

Shah, B. K., Armaly, J., & Swieter, E. (2017). Impact of parental cancer on children. AntiCancer Research, 37 (8), 4025-4028.

Welch, S. A., Wadsworth, E. M., & Compas, E. B. (1996, April 1). Adjustment of children and adolescents to parents cancer: Parents’ and children’s perspective. Cancer, 77 (7), 1409-1418.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are now accepting applications for our recently launched Cancer-Related Behavioral Health (CRBH) Fund, specifically for treatment-related behavioral health issues in cancer. The Fund provides financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about our CBRH Fund and how you can support it by visiting www.HealthWellFoundation.org .

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How I told my kids I have cancer

TODAY.com  is re-sharing this essay in light of news that Catherine, Princess of Wales, is undergoing chemotherapy after she was  diagnosed with cancer . In a video shared on social media, the former Kate Middleton addressed a part of the process that many parents with cancer struggle with: how to talk about it with their children. “It has taken us time to explain everything to George, Charlotte and Louis in a way that’s appropriate to them, and to reassure them I’m going to be OK,” she said. Writer and cancer survivor Julie Devaney Hogan shares what worked for her family in the following essay.

“That’s a really good question,” is not what you want to hear when you ask your doctor, “What the hell do I tell my kids?” after being diagnosed with cancer. 

But that’s what I heard, along with a collection of other unhelpful non-answers from various experts, including but not limited to:

“Well, it really depends.”

“There’s no right or wrong answer.”

And my personal favorite …

“Only you as their mom will know what to say.” 

“Really? Because I do not know what to say and I would like some help,” was my answer to that last one.

After I was diagnosed with stage 3 breast cancer in late 2022 and began researching how to tell my children, I felt like the internet and social workers were reading me bad fortune cookie one-liners. 

 I also found lots of conflicting information. 

“Tell them it’s cancer.” “Don’t use the big 'C' word.”

“Prepare them for all possibilities.” “Don’t tell them anything they don’t ask about.”

Don’t millions of people have cancer? How did we gloss over getting this part of the hell ride right? In addition to the information being insufficient and confusing, the content itself struck me as stark. I bought all the books, read all the jargon-filled pamphlets, yet I couldn’t see myself in any of it.

“Mom will be sick.”

“Mom will be bald.”

“Mom won’t be the same for a while.”

For a minute I wondered if I was in denial. Early in the journey I still felt like myself, and I knew that would change, but I certainly didn’t envision myself becoming the same frail, pale, bedridden pencil figure illustrated in the books I was supposed to show my kids. Every image of a mom with cancer reminded me of the grandparents laying in bed in "Charlie and the Chocolate Factory." Couldn’t they at least draw my future sad sick self in these terrible books in something other than beige pajamas?

Weeks into my diagnosis, people in our life were starting to ask me, too. “Do the kids know? How are you going to tell them?”

It struck me that there was no playbook, so I started to piece together something that was more aligned with the authenticity and truth I wanted the conversation to have. I worried the wrong words would instantaneously evict innocence from their souls, immediately catapulting them from the blissfully naive kids they should be at 3, 6 and 8, and into little people with heavy, burdened and scared hearts. 

I decided if this was the fight of my life, I was telling my kids my way. 

My husband, Dave, and I first talked about what we didn’t want. I had a list of 3 things:

• We didn’t want it to feel like a bad TV movie. Eating dinner, the sound of forks on plates, a bomb dropped by parents starting with, “Kids, Mom has some news to share,” children traumatized. We’ve all seen that scene. I didn’t want that scene.
• We didn’t want the conversation to be about mom being “sick.” My mindset since diagnosis has not been that I’m sick, but that I’m healing. 
• We didn’t want any secrets or panic. In our house we say “secrets make you sick,” so we agreed that we’d tell them the full story in a way they could understand and also be able to talk about themselves. There isn’t a lot of “non-panic” language when talking about cancer. Words like cancer, chemotherapy, radiation and mastectomy are pretty heavy. We’d have to get creative. 

Knowing what we didn’t want, we needed to land on what we were actually going to say. 

As someone who has worked in marketing, consulting and technology my entire career, my love language is a slide deck. In my professional life, it’s how I tell stories. I’ve spent many all-nighters “building decks” for big meetings  — I was going to do the same for my family. I found a template and got to work on the most important presentation of my life .

I decided to personify my sickness and boil down an executive summary story for my kids. 

We named the barbell-shaped tumor in my breast Barb. Barb was a boo-boo villain in Mom’s boob, and Barb needed to go. 

The acronym for the clinical trial drug that I was going to take was MARGOT, so Margot was my superhero. I’d be heading into Boston every week to get special Margot medicine through a magical tool called a port, and this would help shrink Barb. 

The slides I showed my kids:

We chose a Saturday morning to have “the talk.” We were purposeful about the day and time so the kids had the whole day with us if they had questions (not off to a school bus) and also not so close to bedtime that their little minds could race alone. In heavy avoidance of the sad TV movie scene — while we were around a table, there was no meal — we were playing a game together, something we frequently do. A funny one, too (Kids Against Maturity — I highly recommend it). The mood was light and we were laughing.

No sad sounds of forks on plates. 

I presented the slides to the kids after we wrapped up our game, telling them I had something I wanted everyone to know about. We introduced Barb and Margot, and talked about the side effects of Margot, and what would happen in the weeks and months to come.

Bringing to life the cancer that was trying to take my life was ironically empowering. By doing this, you don’t hear us talk about “Mom’s cancer” much in our house. We talk about Barb (and hearing their little Boston accents say "Barb" makes me smile).

There are two words we decided to omit from our slides: cancer and death. 

We wanted to give our kids the most important stuff first (what’s happening, what to expect), and decided we’d answer questions when they brought them to us. 

A few weeks later, my 8-year-old asked me if Barb was cancer. 

“Yes, she is,” I told him. He then asked how we’d get her out during surgery, if she had legs and if I could keep her in a jar.  

“Can I still call her Barb, though?” he asked.

“Yup, that’s who she is,” I told him. “She’s Barb.” 

Last week I underwent a double mastectomy . As my middle son puts it, “Barb has buzzed off.” I had trace amounts of cancer remaining, but the majority of Barb (and the friends she made in 7 lymph nodes) is gone, as a result of the chemotherapy I received before surgery. I will start low-dose chemotherapy and radiation as an insurance policy to make sure nothing comes back. We told our kids, “Barb is gone — now we burn her house down so she can’t come back!”

The question I haven’t been asked is, “Could you die?” It’s a question I dread more than my treatments and surgery, one I know is coming, and one that truly does not have a right answer. 

While my prognosis remains curable, aggressive stage 3 cancer leaves me in a place where the unknowns can erode you quickly if you don’t quiet them. I don’t want my kids to carry that, and I also don’t want to lie to them. 

My planned answer is, “I don’t plan to!” 

And that’s the authentic truth. 

Do you have a personal essay to share with TODAY? Please send your ideas to  [email protected] .

Julie Devaney Hogan is from the Boston area, mother to David (8), Ryan (6) and Clare (3), and wife of 10 years to the love of her life, Dave. She is a tech executive by day, lover of all things beach and ski by weekend, and is currently busy kicking breast cancer’s butt as a patient at Boston’s Dana Farber Cancer Institute. She is also the founder of  SeasonforSqueezin.org , a nonprofit focused on breast cancer action.

National Cancer Institute - Cancer.gov

Children Whose Parents Have Cancer

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Email: [email protected]

Reference Articles

• Patterson P, Pearce A, Slawitschka E. (2010). The initial development of an instrument to assess the psychosocial needs and unmet needs of young people who have a parent with cancer: piloting the offspring cancer needs instrument (OCNI). Supportive Care in Cancer. doi: 10.1007/s00520-010-0933-7.
• Patterson P, Rangganadhan A. (2010). Losing a parent to cancer: a preliminary investigation into the needs of adolescents and young adults. Palliative and Supportive Care. 8. , pp. 255-65. doi: 10.1017/S1478951510000052.
• CanTeen  is an Australian charity providing youth-friendly information to help adolescents and young adults cope when a parent has cancer. 
• Family Connections
• Cancer Care
• When families grieve - Sesame Street
• UNC Cancer Care   Resources for helping children when a family member has cancer.
• Dealing with your parent’s cancer
• When Your Parent has Cancer

A spiral bound book offering creative activities for children ages 6-12 to encourage the expression of feelings and coping skills as they deal with uncertainty and change. Removable Parent Guide.

This book will take you and your child through the cancer experience and explain the medical and emotional aspects of cancer and its treatment.

• How do we tell the children? Third Edition: A Step-By-Step Guide for Helping Children Two to Teen Cope When Someone Dies , By Schaefer & Lyons (ISBN# 1557044309) 2002
• How to Help Children Through a Parent’s Serious Illness: Supportive, Practical Advice from a Leading Child Life Specialist , by Kathleen McCue, M.A., C.C.L.S. with Ron Bonn (ISBN # 9780312146191) 1996

A booklet for grammar school-age children that addresses common fears and the social and emotional aspects children face when a parent has cancer.

Chapter 74: Addressing the Needs of Children When a Parent Has Cancer, by Cynthia W. Moore and Paula K. Rauch

Chapter 75: Psychosocial Research and Practice with Adult Children of Cancer Patients, by Catherine E. Mosher and Talia R. Weiss

• Raising an Emotionally Healthy Child When a Parent is Sick , by Paul K. Rauch, M.D. and Anna C. Muriel, M.D., M.P.H. (ISBN # 0071446818) 2005
• When a Parent has Cancer: A Guide to Caring for Your Children , by Wendy S. Harpham (ISBN # 9780060740818) 2004

DISCLAIMER - While we tried to include potentially useful resources, this website is not exhaustive. New and additional resources may be available. Please let us know if there is a resource you would like to be included.

ORIGINAL RESEARCH article

Families affected by parental cancer: quality of life, impact on children and psychosocial care needs.

• 1 Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany
• 2 Department of Medical Psychology, University Medicine Greifswald, Greifswald, Germany

Parental cancer poses major challenges for families with minor children. Due to diagnosis and treatment family life is disrupted. To prevent long-term consequences in all family members and to design needs-oriented family-centered interventions, further understanding of the family's situation including the impact on the children, quality of life levels and the parental psychosocial needs is necessary. This study aims at investigating the impact of parental cancer on the minor children, family-specific psychosocial needs and quality of life levels of parents and children. Cancer patients parenting at least 1 minor child (<18 years) were eligible for study participation. In total, n=86 cancer patients under treatment participated in the study. After excluding participants without a minor child, 78 patients remained for analyses. We assessed children's quality of life using the parent proxy version of the KIDSCREEN-10 and parental quality of life using the EORTC QLQ C30 quality of life questionnaire. Additionally, the questionnaire comprised open questions about positive and negative changes parents perceived in their children as well as questions on specific family- and child-related psychosocial needs. The majority of participants were mothers (91%), mainly diagnosed with breast cancer (59%). The participating parents provided data on 117 minor children. Parents mentioned positive changes in 38% of the children (e.g., being more attentive and helpful). Negative changes were reported in 37% of the children (e.g., being more anxious and clingy). Parents reported family-specific psychosocial supportive care needs for themselves as a parent (e.g., support regarding parenting concerns), support needs for the partner or the children. Moreover, parents expressed family-related information needs and needs regarding practical aspects (e.g., childcare, household help). Global quality of life was M = 55.7 ( SD = 23.4) for parents and M = 57.5 ( SD = 15.5) for children. Pearson's correlation coefficient between parental and children's quality of life was 0.377 ( p < 0.001). To identify parents with cancer and children in need for additional support, health care providers should proactively inquire about the impact of the disease on the children. In terms of a comprehensive cancer care, the direct assessment of family impact and family-specific support needs in cancer patients with minor children allows for needs-based allocation to support offers.

Introduction

Living with cancer imposes mental and physical challenges on the patients and demands adjustment processes from the patients but also their relatives. A cancer diagnosis in rather young adulthood can meet the patient in a phase of enhanced responsibility for the family ( 1 ). About 14% of cancer patients live with minor children ( 2 ).

Most children adjust well to the parental disease without developing relevant psychopathological symptoms ( 3 , 4 ). Still, they are confronted with cancer-related stressors ( 5 , 6 ) and can experience elevated stress levels and subclinical levels of increased mental burden ( 3 , 7 ). Studies indicate that besides disease-related factors (e.g., progress or side effects), parental coping style, family functioning and specifically open communication influence children's well-being and adjustment ( 8 ). As these aspects can be addressed in psychosocial interventions, the systematic assessment of support needs of affected parents is relevant to identify patients in need for support and may raise the awareness of these aspects in health care personnel. Initiating needs-based support may prevent negative long-term consequences in children, e.g., by promoting open family communication. So far, predominantly qualitative studies have identified specific needs of affected parents and their families ( 9 , 10 ). Studies demonstrated that parents are concerned about the emotional well-being of their children ( 11 , 12 ). Moreover, cancer patients experience parenting demands, while caring for their own needs as patients ( 13 ). Parents report several support needs e.g., in communicating with their children about the disease and in obtaining a professional assessment of children's reaction to cancer ( 11 ). While supportive and psychosocial care needs are a common parameter in studies on cancer patients in general, the specific needs of affected parents were only rarely investigated to date ( 14 , 15 ). In a recent study on breast cancer patients, affected mothers report a high level of needs for themselves as well as for their children ( 15 ).

Quality of life in children and parents affected by parental cancer have previously been investigated. Parents with cancer report lower health-related quality of life than population-based norm values ( 16 ). Interestingly, quality of life in minor children of cancer patients is rather scarcely investigated compared to the psychological impact such as internalizing and externalizing problems ( 17 – 19 ). Several factors associated with parental quality of life have been identified in previous studies, e.g., gender, partnership status, or time since diagnosis ( 20 , 21 ). Moreover, higher depressive symptoms in parents with cancer are associated with higher parenting stress ( 22 ) and hence may impact children's well-being ( 23 ). With regard to children's quality of life, family functioning, palliative treatment, and family-related factors such as parental gender or single parenthood have been identified as associated factors ( 16 , 24 ).

Besides quality of life, distress or psychopathology, the direct assessment of the impact of the parent's disease on the children can provide crucial information regarding the need for psychosocial support in the children. Therefore, the research questions of this study are:

1. How do parents with cancer perceive the impact of their illness on their minor children?

2. How frequent do affected parents report family-specific psychosocial needs?

3. How are quality of life levels in family members when a parent has cancer and how are they related to each other?

We used baseline data from a longitudinal quantitative study with two measurement points (baseline, 6 months follow up).

Data Collection and Participants

The study was conducted at a major cancer center in Hamburg, Germany, providing inpatient and outpatient treatment as well as psychooncological routine care and additional child-oriented support service, if applied for. Cancer patients, receiving any kind of treatment (inpatient, outpatient, medical, psychooncological) were invited for participation.

Since a systematic assessment of parenthood status was missing, potentially eligible patients were addressed either based on their age (<55 years) or based on information from clinical staff. Patients parenting at least one minor child (<18 years) were given study information and invited for participation. If they agreed, they received the set of questionnaires, written study information and informed consent as well as an addressed envelope to send study documents to the study center. Data was collected between January 2016 and August 2018.

Three hundred and fifty one patients aged between 18 and 55 years were informed about the study. Of these, 153 stated to be parents of at least one minor child and were thus invited to participate in the study. Eighty six patients filled out the questionnaire and returned it. After excluding the participants without a minor child, 78 patients were included in the analyses ( Figure 1 ).

Figure 1 . Flow chart of data collection.

Sociodemographic and disease-related information was obtained by self-report questions.

The impact of the parental disease on the children was assessed by asking parents if (1) positive and (2) negative changes in their children occurred associated to parental cancer (binary response format for each question: yes/no). If parents answered “yes,” they were asked to explain the changes in an open response format. Moreover, parents could answer “no changes associated to cancer.” Open answers were analyzed by qualitative content analysis ( 25 ).

Psychosocial supportive care needs were assessed using a self-developed set of 25 items that were developed based on results of previous studies of the research group ( 26 ). Patients were asked to rate 10 psychosocial support needs for themselves as a parent, 4 needs for their children, 3 needs for the partner (if applicable), 3 needs for the family as a whole and 5 items on organizational and practical needs as a parent. Moreover, one open question on further needs was included. Patients could agree or disagree on each item.

Parental quality of life was assessed using the global scale and the function scales of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) ( 27 ). The EORTC QLQ-C30 comprises multiple dimensions of health-related quality of life including five function scales, nine symptom scales and one global quality of life scale. The thirty items can be rated on a 4-point Likert scale (1 = not at all to 4 = very much ). The items of the scales are summed up and transformed into a scale from 0 to 100 with higher values indicating better quality of life in the function scales and the global scale. The EORTC QLQ-C30 is widely used and has proven to be reliable and valid ( 28 ).

To assess the children's quality of life, we used the KIDSCREEN 10 Index proxy version ( 29 ). Cancer patients answered the 10 items of the KIDSCREEN on a 5-point Likert scale (1 = not at all to 5 = extremely ). The original version is recommended for children from 8 to 18 years, since items on school performance are included and do not apply for younger children.

Our study also included patients with children younger than 8 years. However, due to study organization, we could only apply one instrument for all patients. In case of one missing item, missing data was replaced using the parameter values from the remaining items. If more than one item was missing, the case was coded as missing. Consequently, we replaced missing, not applicable items in children younger than 8 years with the rounded mean raw item score of the remaining items. As recommended by the original authors, we transformed the scores into T -values ( M = 50, SD = 10). Higher values indicate higher quality of life. The KIDSCREEN 10 parent proxy report (version for children between 8 and 18 years) has shown good psychometric properties with good internal consistency (Cronbach's Alpha = 0.78) and good test-retest reliability ( r = 0.67) ( 30 ).

Data Analyses

Statistical analyses were conducted using the statistical package for the social sciences (SPSS, version 27, IBM SPSS, Chicago). Descriptive statistics were computed for sociodemographic, disease-related and study outcomes. Pearson's correlation coefficient was calculated to assess the association between parental and child's quality of life. To avoid inaccurate results due to same family affiliation of some children, we randomly selected one child per patient for the correlation analysis. The significance level was p=0.05 for all analyses.

The study was approved by the local Ethics Committee for Psychotherapists (18/2014-PTK-HH, 15/2015-PTK-HH).

Sample Characteristics

The sample comprises n=78 cancer patients parenting minor children, mainly comprising women ( n = 71). Patient's age ranged from 29 to 53 years ( M = 42.1, SD = 5.9). Most participants had one (48%) or two children (34%). 36% reported school education ≤ 10 years; 64% of participants were employed in full- or parttime. Participants were mostly diagnosed within the year before the survey (75%), mainly with breast cancer (62%). About one quarter of the participants had used family- or child-related psychosocial support at least once ( Table 1 ).

Table 1 . Sample characteristics of n = 78 cancer patients parenting minor children.

Overall, participants reported on 117 minor children between 0 and 17 years ( M = 8.4, SD = 4.9). 52% of the children were daughters and 47% sons (4 missing values).

Assessment of the Impact of Cancer on the Children

Parents reported in 37% of the children both a positive and a negative impact of the parental cancer disease. All parents indicating changes in their children answered the open question with at least one change, which they had observed in their child. Most frequently reported positive changes were helpfulness (reported in 19 of 44 children) and more closeness within the family (17 of 44 children) ( Figure 2 ). Other reported positive changes were increased self-confidence and sense of responsibility as well as better school performance or being more open in social situations. Most frequently reported negative changes were fears and concerns (11 of 43 children), increased clinginess and aggressiveness/irritability in the children (each 8 of 43 children). Moreover, parents reported higher levels of sadness, withdrawal, difficulties to concentrate or sleeping difficulties.

Figure 2 . Positive (light gray) and negative (dark gray) changes in children affected by parental cancer (parent report, n = 44 children with positive changes, n = 43 children with negative changes).

Family-Specific Psychosocial Needs

About three out of four parents reported the need for information about children's coping (74%). Other frequent needs were support in dealing with the children, their feelings and their behavior (71%) and support regarding concerns as a parent (64%) ( Table 2 ).

Table 2 . Family-specific psychosocial needs, n = 78.

Regarding their children, the parents assessed the need for age-appropriate information (71%) and support in coping with the parental illness (50%) as most frequent needs. Moreover, more than half of the patients reported support needs for their co-parent in coping with the illness (56%) and in dealing with the children, their feelings and behavior (59%).

Other frequent needs were “activities/facilities for the whole family” (65%) and organizational and practical needs, such as information on household help (64%), financial support (55%) or general information on the topic parenthood and cancer (58%).

Only two parents used the possibility to add another need and mentioned “financial consequences” and “information on supporting non-profit associations.”

Quality of Life

Global health status/quality of life of parents was M = 55.7 ( SD = 23.4) on a scale from 0 to 100. Highest functioning was reported in the subscale physical function (M = 75.0, SD = 20.9), lowest functioning in the social function subscale ( M = 40.7, SD = 32.7) ( Table 3 ). All values were lower than population-based norms.

Table 3 . Quality of life levels in parents with cancer and their children.

Children's general health index was rated M = 57.3 ( SD = 15.8) on a T-transformed scale.

Pearson's correlation coefficient between parental and child's quality of life was 0.377 ( p < 0.001, n = 74).

Results demonstrate that parents experience both positive and negative changes in more than one third of their children. Besides burden in their children, parents notice elements of posttraumatic growth as it has been identified in adult cancer patients ( 32 ). This indicates that open questions on changes in children allow for a deeper insight into the specific impact of parental cancer on children rather than structured questionnaires using closed question format e.g., on quality of life or psychopathological symptoms. In particular, in the context of the clinical oncological setting, a combination of direct and indirect measurement of disease impact may be a promising approach to capture a valuable insight into the situation of children affected by parental cancer. Mostly, the parents are the key informants for their children's situation and gate keepers to use of psychosocial support services for their children. A consequent inclusion of the parental role of cancer patients with minor children and a proactive approach by clinicians in addressing these aspects are essential to provide preventive psychosocial support for the whole family ( 33 , 34 ).

While a substantial number of studies have investigated supportive care needs in cancer patients, so far only few studies assessed the specific needs of families affected by parental cancer ( 15 ). The applied list of parental psychosocial needs seems to represent their needs adequately since there are high agreement rates and only few participants made use of the free-response format in case of additional needs. Similar to the findings of Hammersen and colleagues ( 15 ), our results show a high number of family- and parent-specific needs in affected parents. More than two thirds of parents wish information on how children cope with a parental disease and support on how to deal with the children and their feelings. Almost half of the parents wish for a professional assessment of the children's behavior, which indicates limited parental self-efficacy. Comparing self-reported parental self-efficacy before and after diagnosis, it declines significantly after the diagnosis ( 35 ) and parents become unsure whether they are still be able to meet their children's needs adequately. In a study on use and need of psychosocial support in cancer patients with minor children, it was identified, that 73% of the participants expressed the need for support, but only 9% used family-specific support ( 14 ). A more concise and structured assessment of family-specific needs in routine care might help the needs-based allocation of adequate psychosocial support offers. Besides support initiated by health care teams, families might benefit from support in daily life at home. Household help or social legal advice as well as children's books, brochures for affected families or organization of additional child care can be helpful for affected families ( 36 ). Moreover, children can be supported in daycare or school. Staff can provide support and information and may serve as additional person of trust outside the family setting ( 37 , 38 ). In school, structures and routines are perceived as stabilizing factors for most children ( 37 ).

Children's level of quality of life was similar to other studies in children of cancer survivors ( 16 ). Since the mean age of children in our study was 8 years, we might not have included the highly burdened, vulnerable children of older age groups. Jeppesen and colleagues reported in a sample of adolescents that 42% participants had low quality of life levels ( 39 ). Moreover, adolescents themselves report high levels of unmet needs ( 40 ), which may not be captured by quality of life assessment. Similar to other studies ( 41 ), we found moderate positive correlations between parental and children's quality of life. However, studies on the impact of parental cancer on children using outcomes such as distress or mental health including internalizing and externalizing symptoms revealed that parents underestimated the impact of cancer on their children ( 3 ). Since we could not obtain child self-report, but could only include the parental perspective on family-specific needs and their children's quality of life in our study, there might be an underestimation of the children's actual needs and an overestimation of the quality-of-life levels, respectively. At the same time, the direct assessment of reactive changes due to parental cancer disease showed a high amount of positive and negative changes observed by the parents in our sample. This indicates that the participating parents are attentive towards their children and acknowledge both positive and negative impact of the situation. Still, parental report should be considered with caution, since own burden and less psychosocial availability of parents may lead to underestimation of children's burden.

Limitations

There are several limitations to this study. First, the cross-sectional design does not allow to draw any causal relations between findings. A systematic longitudinal design across several milestones of cancer diagnosis and treatment is necessary in order to picture the course of changes, needs and quality of life. Moreover, the perspective of the children themselves and, hence, an important informant on children's needs and quality of life was not included. Third, results should be interpreted with caution due to the limited sample size and participation bias (mainly women and highly educated parents, high use of family-centered support). Lastly, the limited sample size did not allow for comprehensive analyses including multiple potential confounders.

To identify parents with cancer and children in need for additional support, health care providers should ask openly and proactively about impact of the disease in the children. Due to limited time and personnel resources in the health care setting, needs-based allocation is essential in health care for cancer patients. The direct assessment of family-specific support needs in cancer patients with minor children allows for provision of specific support offers (e.g., psycho-oncologist, family-centered support offers, social work, social legal advice, information resources).

Since parental and children's quality of life show medium correlation, the assessment of the parental quality of life may not be sufficient to capture the situation of the whole family. Hence, in clinical practice, health care providers should assess the mental health and quality of life of all family members in order to identify those burdened.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author on reasonable request. The data are not publicly available due to privacy and ethical restrictions. Requests to access the datasets should be directed to Laura Inhestern, l.inhestern@uke.de.

Ethics Statement

The studies involving human participants were reviewed and approved by Local Ethics Committee for Psychotherapists (18/2014-PTK-HH, 15/2015-PTK-HH). The patients/participants provided their written informed consent to participate in this study.

Author Contributions

LI: study design and concept, data acquisition, statistical analysis and interpretation, and drafting of the manuscript. LJ: data acquisition and data interpretation and critical revision of the manuscript for important intellectual content. CB: study design and concept, data interpretation, and critical revision of the manuscript for important intellectual content. All authors approved the manuscript for publication.

This project was part of a dissertation project funded by the Stiftung Wissenschaft in Hamburg, Germany. The funding source was not involved in study design, collection, analysis or interpretation of the data, in writing the manuscript or in the decision to submit the manuscript for publication.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's Note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Acknowledgments

We would like to thank all mothers and fathers who participated in this study.

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Keywords: family, cancer, oncology, quality of life, psychosocial needs

Citation: Inhestern L, Johannsen LM and Bergelt C (2021) Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs. Front. Psychiatry 12:765327. doi: 10.3389/fpsyt.2021.765327

Received: 26 August 2021; Accepted: 12 October 2021; Published: 10 November 2021.

Reviewed by:

Copyright © 2021 Inhestern, Johannsen and Bergelt. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Laura Inhestern, l.inhestern@uke.de

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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Article Contents

Introduction, conclusions, supplementary data.

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Social Support in Parents of Children With Cancer: A Systematic Review

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Jensi Gise, Lindsey L Cohen, Social Support in Parents of Children With Cancer: A Systematic Review, Journal of Pediatric Psychology , Volume 47, Issue 3, April 2022, Pages 292–305, https://doi.org/10.1093/jpepsy/jsab100

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Parents of children with cancer (PCCs) experience stress as they navigate managing their child’s illness. Arguably, social support is critical to PCCs’ well-being. This review examines the literature on social support in PCCs.

Studies of social support in PCCs were collected from PsycINFO, CINHAL, and MEDLINE. Data were extracted from 37 studies published between January 2010 and May 2021 related to the conceptualization, measurement, and availability of social support in PCCs. Relationships between PCCs’ social support, well-being, and unique parent and child factors were also synthesized. Risks of biases were assessed using domains of the Effective Public Health Practice Project.

Social support in PCCs is conceptualized as (a) perceived availability and satisfaction with social support and (b) social support seeking as a coping strategy. Parents of children with cancer report receiving as much or more support than typical adults, but PCCs engage in less social support seeking. Family and significant others are the most prevalent sources of support, and emotional support is the most received type of social support. Social support is positively related to well-being and negatively related to distress, anxiety, and posttraumatic stress. Findings related to social support differences based on parent and child unique factors were minimal and present opportunities for future research. The risk of bias was generally low, with caution that most studies cannot demonstrate directionality of findings due to cross-sectional study designs.

Given the consistent positive association between social support and well-being in PCCs, clinicians should assess and encourage social support for this vulnerable population.

Pediatric cancer is prevalent in families across the globe with approximately 300,000 newly diagnosed children per year ( Steliarova-Foucher et al., 2017) and incidence increasing ( Miller et al., 2019 ). Parents of children with cancer (PCCs) are impacted by the tremendously stressful, emotional ( Battles et al., 2018 ; Ljungman et al., 2014 ), and traumatic ( Kazak et al., 2004 ) nature of raising a child with a life-threatening illness; thus, it is important to better understand factors that contribute to the psychological well-being of PCCs.

When a child is diagnosed with cancer, parents are faced with initial sadness, fear, and helplessness ( Demirtepe-Saygili & Bozo, 2020 ) as they navigate the uncertainty and loss of control that accompanies their child’s diagnosis ( Cox, 2018 ). Disruption in daily functioning ( Long & Marsland, 2011 ) and loss of normalcy in day-to-day life ( Cox, 2018 ; Earle et al., 2006 ) are common for parents as they become increasingly involved in their child’s care. Many must isolate from prior support networks, relocate, or travel long distances with their child for treatment ( Cox, 2018 ); thus, many PCCs report feeling alone with the stress of caring for their child ( Battles et al., 2018 ) raising questions about the availability of parents’ social support as they navigate their child’s illness.

Parents’ stress, distress, and psychological well-being may shift and evolve throughout the stages of their child’s cancer ( Vrijmoet-Wiersma et al., 2008 ), with PCCs reporting symptoms of psychological maladjustment as well as posttraumatic stress, depression, and anxiety close to the time of their child’s diagnosis ( Dunn et al., 2012 ; Vrijmoet-Wiersma et al., 2008 ) and declining symptoms over time ( Ljungman et al., 2015 ). Parents also report resilient outcomes ( Habibpour et al., 2019 ; Vrijmoet-Wiersma et al., 2008 ), such as posttraumatic growth ( Barakat et al., 2006 ) and benefit finding ( Phipps et al., 2015 ), which is important as recent meta-analyses have linked parents’ well-being to their child’s distress ( Bakula et al., 2019 ) and quality of life (QOL; Bakula et al., 2020 ).

Social support is a factor that is commonly associated with well-being and psychological growth (e.g., Haase et al., 1999 ). Social support is often defined as the availability of people one can rely on for care and love ( Sarason et al., 1983 ). It is primarily studied as perceived availability of and satisfaction with available supports ( House et al., 1985 ; Sherbourne & Stewart, 1991 ) or social support seeking as a form of active, problem-focused coping ( Carver et al., 1989 ); social support is typically received or sought from friends, family, and spouses. Various types of perceived social support are considered, such as emotional support, which involves love, empathy, and care from another; informational support, which involves guidance that can be used to solve a problem; instrumental support, which involves tangible and useful assistance such as financial help; and affectionate support, which involves displays of affection and love from another ( Sherbourne & Stewart, 1991 ). Understanding the types and sources of social support (e.g., family, friend, significant other, other PCCs) perceived as most helpful to PCCs is necessary to improve clinical interventions for this vulnerable population.

Data suggest that social support might be an important protective factor in the face of the inevitable stress faced by PCCs ( Kazak & Nachman, 1991 ). Cohen and Wills (1985) proposed a model which posits that social support buffers the relationship between stress and psychological maladjustment, which provides a helpful framework for considering how social support might moderate the relationship between the highly stressful event of having a child with cancer and PCC’s psychological well-being. As such, the availability of social support for PCCs is important to evaluate given the disruption to daily life and isolation that often characterizes their child’s treatment and medical care. A range of parent and cancer-related variables (e.g., parent financial resources, child stage of cancer) might also be considered within this framework, given their likely association with stress during the child’s cancer trajectory. For example, identifying unique parent and child factors that are related to stress and the availability of social support would allow for more tailored interventions. Factors such as parent role as mother or father ( Altiere & von Kluge, 2009 ; Carver et al., 1989 ; Hoekstra-Weebers et al., 1998 ), parent socioeconomic status (SES; Hefner & Eisenberg, 2009 ), and parent race and ethnicity, as well as child age ( Knauer et al., 2019 ; Mays et al., 2020 ), child gender ( Habibpour et al., 2019 ), and child stage of cancer ( Demirtepe-Saygili & Bozo, 2020 ; Dunn et al., 2012 ; Ljungman et al., 2015 ) may all be related to PCCs’ level of stress, social support, and psychological well-being; thus, these variables might considered within the Cohen and Wills (1985) framework to highlight parents most at-need for social support.

Whereas there are a vast number of studies on social support in PCCs, no review to date has synthesized this rich literature. Given changes in medical and mental healthcare as well as sociocultural factors (e.g., stigma and parenting), it is important to acknowledge that the experiences and social support for PCCs have qualitatively changed over time ( American Cancer Society, 2019 ; Casey & Cheung, 2020 ; Nomaguchi & Milkie, 2020 ). Thus, a review of the literature should be sufficiently focused (e.g., 10-year span) to capture relatively similar experiences. In addition, it is important to exclude studies where the PCCs are managing significantly different circumstances or situations (e.g., death and dying).

Purpose and Aims

The purpose of this review was to systematically evaluate and synthesize the literature on social support in PCCs to guide future research and clinical practice. Multiple aims are addressed.

Due to variation in how social support is measured and conceptualized ( Sarason et al., 1983 ), the first aim of this review will evaluate how social support among PCCs is examined across studies, including providing a synthesis of social support constructs and measures used to understand social support in PCCs. This is intended to provide a more comprehensive understanding of social support in PCCs and increase researchers’ ability to compare and contrast findings across studies in future research.

The second aim involves understanding the quantity, type, and benefits of social support in PCCs. We will quantify the amount of social support PCCs have in comparison to the general population, identify who (e.g., friends, family) typically provides the support, and evaluate the types of social support (e.g., emotional, informational) that PCCs report as most helpful. Next, we will examine how social support is related to maladaptive (e.g., anxiety, depression, posttraumatic stress) and adaptive (e.g., resilience, posttraumatic growth, benefit finding) outcomes, with the expectation that social support will buffer the stressful experience of having a child with cancer and be related to greater well-being ( Cohen & Wills, 1985 ).

Finally, we will examine the current understanding of how unique parent, child, and cancer factors might be involved in the relationship between parents’ social support and well-being. Due to mixed or lack of evidence, it is unclear how social support might differ by mothers and fathers, parent SES and race, and by parents of children of different ages, genders, and in different stages of cancer, as well as differences in how social support is related to psychological well-being among those groups. Understanding these potential differences is important for tailoring assessments and interventions to meet the unique social support needs of individual PCCs. Furthermore, these differences should be understood by clinicians working with PCCs, and potentially used to identify parents who might have a greater need for social support interventions.

Electronic databases PsycINFO, CINHAL, and MEDLINE were searched. The terms “childhood cancer or children with cancer or pediatric oncology” AND “parents or caregivers or mother or father or parent” AND “social support or social networks or social relationships or social inclusion or social exclusion or social isolation” were searched within the full text of articles. The search was not registered and was limited to empirical, peer-reviewed articles published between January 2010 and May 2021 that were available in English (last search conducted on June 3, 2021). Gray literature was searched using the same terms within ProQuest Dissertation and Thesis A&I electronic database keywords and references of the articles included in this review were searched manually.

Studies in this review were selected by the first author of this review and checked for agreement by the second author, based on predetermined inclusion and exclusion criteria: (a) Studies evaluated participants who were a parent or caregiver of a child (less than 19 years of age) who was currently or previously diagnosed with cancer, (b) The child was not in palliative care nor deceased, (c) At least one aim or finding was about social support in parents, and (d) A quantitative measure was used to assess social support. Studies published prior to 2010 were excluded on the basis of shifts in parenthood and parent well-being (see Figure 1 note). Papers that evaluated COVID-19’s impact on social support in PCC’s ( n  =   4) were excluded from this review given that the limitations of the COVID-19 pandemic presented a confounding variable that may influence social support beyond the cancer experience. The search identified 571 records across three databases and gray literature. The final review included 37 papers. Study selection and exclusion justification are described further in Figure 1 .

PRISMA flow diagram of article selection.

Note . Electronic databases PsycINFO, CINHAL, and MEDLINE were searched using key terms “childhood cancer or children with cancer or pediatric oncology” AND “parents or caregivers or mother or father or parent” AND “social support or social networks or social relationships or social inclusion or social exclusion or social isolation” for studies published January 2010 through May 2021. (a) Studies published prior to 2010 were excluded on the basis of shifts in parenthood and parent well-being. Recent research ( Nomaguchi & Milkie, 2020 ) argues the last decade has seen an increase in intensive or overinvolved parenting styles that are linked to parent well-being. This with continued rise in pediatric cancer incidence ( National Cancer Institute, 2020 ) and advancements in pediatric cancer treatment over the last decade (e.g. immunotherapy and genetic treatments [ American Cancer Society, 2019 ; Casey & Cheung, 2020 ]) may impact daily life, access to social supports due to changes in the need to be with a child during advanced treatments, and well-being of PCCs; (b) Several studies were excluded because they evaluated constructs that were distinct from social support and thus did not align with the aims of this review; for example, one study evaluated the strength of the marital relationship ( Hall, 2010 ), another study evaluated immediate-family functioning and communication ( Svavarsdottir & Sigurdardottir, 2013 ), one study assessed social isolation ( Thompson et al., 2020 ), and another evaluated social problem-solving ( Sahler et al., 2013 ); (c) One study appeared to assess parents’ social support, but instead assessed child’s social support as reported by the parents ( Myers et al., 2014 ); (d) One study included parents of young adults in their population without differentiating results related to children and adolescents versus young adults, thus was excluded ( McCarthy et al., 2016 ); (e) One study was excluded on the basis that social support was not a primary study variable and results on social support were not available or interpretable (i.e. an average social support score was reported; however, the average was uninterpretable given that information required to contextualize the mean score and its relationship with other variables were not provided; Sint Nicolaas et al., 2016 ); (f) One study included parents of children with other chronic illnesses without differentiating results, thus was excluded ( Chardon et al., 2021 ). PCCs = parents of children with cancer.

Data Extraction and Risk of Bias Assessment

Data extraction was manually completed by the first author of this paper and followed a pregenerated protocol developed by the author based on the aims of this review (protocol and data are available upon request from the first author). Predetermined unique parent and child factors of interest (e.g., demographic factors, child-disease factors), as well as outcome variables related to social support (e.g., indicators of psychopathology and well-being), were extracted from each paper and for all time points in longitudinal studies. Details regarding study design, methods, and major findings were also extracted. Studies that did not report relationships between primary or demographic variables and social support were assumed to not have statistically evaluated those relationships due to their specific aims. Social support means were compared to normed populations and effect sizes were extracted when relevant data were available. Effect sizes are described as small ( r ≥ .10; d  ≥ 0.20), medium ( r ≥ .30; d  ≥ 0.50), or strong ( r ≥ .50; d  ≥ 0.80) in the results and Supplementary Table 5 . Studies were diverse in terms of aims and findings; thus, results were synthesized into Supplementary Tables 1–4 and Table I based on specific data points that were provided by each study.

Relationships Between Perceived Social Support and Factors, Coping Styles, and Outcomes

Social support at diagnosis was correlated with distress at diagnosis, but not with distress at the end of treatment.

Social support at diagnosis was correlated with posttraumatic stress (PTS) at the end of treatment, but did not significantly predict PTS in a regression analysis.

Predictive relationship was demonstrated via regression modeling, however, the study design was not longitudinal.

The methodological quality and risk of bias for each study were assessed using relevant domains of the Effective Public Health Practice Project (EPHPP) Quality Assessment Tool for Quantitative Studies ( Jackson et al., 2005 ). Domains included participation rate, data collection methods, dropout rate, and appropriateness of the statistical analyses conducted based on study questions and methods. Both authors independently provided ratings on the risk of bias domains; results were compared and discussed until agreement was reached.

Across the 37 papers, participants were parents and caregivers of children who had been diagnosed with cancer between the ages of 0 and 18 years. Participants were from 22 countries, with the majority from the United States, China, and Israel. Participants across the studies were mostly mothers; some studies ( n  =   12) included at least 30% fathers. Parents were predominately white in the samples from the United States; non-United States samples often did not report race. Children of the parents were diverse in terms of diagnosis and stage of cancer (i.e., time since diagnosis) within and across studies. Most studies included roughly equal numbers of male and female children, and a wide range of ages under 18 years.

Studies were primarily retrospective and cross-sectional in design, with three studies incorporating longitudinal methodology ( Barakat et al., 2021 ; Hoekstra-Weebers et al., 2011 ; Peterson et al., 2014 ) and one study evaluating social support in the context of an experimental intervention study ( Marshland et al., 2013 ).

Social Support Constructs and Measures

Social support was measured via 20 different quantitative measures across the 37 studies. Most studies ( n  =   20) evaluated social support as an independent variable, 13 studies assessed social support as a dependent variable, three studies evaluated social support as a moderator, and three studies observed correlations only. Two social support constructs emerged across studies: (a) perceived availability and satisfaction of the resource of social support and (b) social support seeking as a coping mechanism. One paper assessed the degree of social disruption due to having a child with cancer, which was included with results pertaining to perceived social support ( Islam et al., 2021 ). Details about the measures and constructs used to understand social support in PCCs are provided in Supplementary Table 2 .

Risk of Bias

Overall, studies had low biases based on the EPHPP Quality Assessment Tool. In terms of participation and dropout, most studies had strong participation (i.e., over 80% of the target group were enrolled) and retention (i.e., over 80% of the sample completed the study) rates. In general, the measures selected had strong psychometric properties, although authors tended to only report reliability (e.g., internal consistency) values. A few studies designed their own measures, which did not include psychometrics, and some used measures of social support with very few items to tap the construct (e.g., CHIP and WHOQOL). The analyses were generally appropriate for answering the study aims; however, studies were rated as using moderately appropriate analyses if they employed cross-sectional designs with data collection at one time point and conducted analyses (e.g. regression) designed to demonstrate directionality or causal relationships. These studies were rated as moderate to guide readers to interpret results with caution and not assume directionality or causality. Refer to Supplementary Table 1 for details about the risk of bias for each study.

Social Support Quantity, Types, and Sources

Findings from the second aim revealed that overall, perceived social support was higher for PCCs than the general population and similar to parents of healthy children. Veracasson et al. (2020) were the only exception; these data indicated that parents of children in the survivorship stage of cancer had less social support than the general French population. Social support seeking, however, was generally less for PCCs compared to norms, with the exception of a population of parents from Iran compared to a population of parents of children with medical conditions from the United States ( Ghorbani et al., 2020 ). For a summary of findings on the amount of social support compared to norms, see Supplementary Table 3 . In terms of type and sources of support, PCCs reported emotional support as the most received type and significant others and family as the most prevalent sources of support. Friends, healthcare personnel, and other PCCs were often rated as the second most prevalent sources of support. See Supplementary Table 4 for additional details and study references.

Social Support and Adaptive Factors

Perceived social support was positively related to several adaptive factors, coping styles, and outcomes of well-being such as resilience and benefit finding with consistent effect sizes across studies (refer to Supplementary Table 5 for a summary of each study’s results and effect sizes). Social support had a direct positive effect on posttraumatic growth ( Kim, 2017 ) and an indirect effect on growth through uncertainty ( Lin et al., 2010 ). However, perceived social support at diagnosis did not predict parents’ posttraumatic growth at the end of their child’s treatment in a longitudinal study ( Barakat et al., 2021 ). Perceived social support was positively related to optimism and QOL with strong effects (see Table I ). One study found QOL and resilience was related to support from family with intermediate effects, and from friends with small effects ( Toledano-Toledano et al., 2020 ). Several other studies found that benefit finding, posttraumatic growth, and resilience were related to higher levels of social support (see Table I ) with intermediate effects. Social support was also positively related to adaptive coping ( Gardner et al., 2017a ; Ye et al., 2017b ) and positive religious coping ( Dolan et al., 2021 ) with small effects. Table I details the relationships between perceived social support and both adaptive and maladaptive factors.

Social Support and Maladaptive Factors

In terms of maladjustment, perceived social support was negatively related to distress across multiple studies (see Table I ), with intermediate to strong effects. Dolan et al. (2021) was the only study that found no relationship between social support and distress ( Dolan et al., 2021 ). Barakat and colleagues (2021) found that perceived social support at diagnosis was correlated with distress and posttraumatic stress at diagnosis, but not later at treatment completion. One study ( Marshland et al., 2013 ) evaluated whether parents with lower social support might benefit more from a stress-management intervention than parents with higher social support. This cognitive-behavioral intervention included one component aimed at obtaining emotional and social support and revealed that social support is inversely related to distress before and after an intervention, however, the intervention was not associated with better outcomes for participants with higher social support. One cross-sectional study showed that perceived social support predicted lower distress ( Ben-Zur & Khoury, 2017 ), however, directionality cannot be assumed.

Social support was also related to several outcomes of psychopathology including parents’ anxiety ( Cusinato et al., 2017 ) and posttraumatic stress ( Barakat et al., 2021 ; Gardner et al., 2017b ) with intermediate effects; and depression ( Cusinato et al., 2017 ), with one study yielding a small effect ( Gelkopf et al., 2019 ). Perceived social support was also associated with less caregiver burden in one study ( Arab et al., 2019 ).

Greater social support seeking reduced mother’s fears that their child’s cancer might progress or recur ( Clever et al., 2019 ), was inversely related to anxiety ( Bhattacharya et al., 2016 ) and distress ( Lakkis et al., 2016 ), with the exception of a single study wherein fathers’ social support seeking was positively linked to distress. In one study, social support seeking and depression were not significantly related ( Bhattacharya et al., 2016 ).

Buffering Effect of Social Support on Psychopathology

No study evaluated social support as a moderator of distress and psychopathology. Social support interacted with the relationship between depression and distress ( Choi et al., 2015 ), which was directionally opposite to the hypothesis that social support might buffer the effect of distress on psychopathology.

Social Support and Unique Parent Factors

Mothers versus fathers.

Differences between mothers’ and fathers’ social life ( Enskär et al., 2010 ) and perceived social support ( Veracasson et al., 2020 ; Ye et al., 2017b ) were not significant across three studies. No differences in sources and types of social support were found when comparing studies with mothers-only samples versus samples with mothers and fathers. Differences in social support seeking between mothers and fathers were mixed with one study finding no differences at follow-up care ( Clever et al., 2019 ) and two studies finding that mothers used significantly more instrumental and emotional social support seeking to cope than fathers ( Gage-Bouchard et al., 2013 ; Hoekstra-Weebers et al., 2011 ) particularly around the time of diagnosis.

Race and Ethnicity

Most studies did not evaluate differences in social support based on race or ethnicity, and comparison across studies was not possible due to the diversity of measures. Ben-Zur and Khoury (2017) was the only study to evaluate the relationship between ethnicity and perceived social support within their sample and found that perceived social support was greater among Jewish versus Arab mothers, and Arab mothers experienced significantly less distress at high levels of social support.

SES and Financial Burden

SES, which was often reported as family income, was positively associated with perceived social support in parents ( Altay et al., 2014 ; Gardner et al., 2017a , 2017b ; Nicolaou et al., 2015 ), and financial difficulty was also significantly related to less social support in one study ( Veracasson et al., 2020 ). Social disruption was greater in families who experienced more direct and indirect costs of treatment ( Islam et al., 2021 ). Social support seeking (specifically emotional and instrumental) was not related to SES in one study ( Gage-Bouchard et al., 2013 ). Comparing social support across studies on the factor of SES was not possible given the wide variation of SES within studies.

Social Support and Unique Child and Disease Factors

Child gender and age.

Across studies, child gender ranged from 50% to 60% female, thus, samples were not homogeneous enough to compare across on levels of social support. Studies that evaluated perceived social support and reported mean age of child were divided into studies with younger ( M  <   13 years) versus older children ( M  ≥   13 years); however, no differences were found. Altay et al. (2014) and Veracasson et al. (2020) were the only authors to evaluate parents’ perceived social support by gender and age of the child and found the relationship was not statistically significant. Padeniya et al. (2020) found that Sri Lankan families with male children engaged in more social support seeking compared to families with female children.

Child Stage of Cancer

Several studies found that longer treatment durations were associated with less perceived social support ( Altay et al., 2014 ; Arab et al., 2019 ) and greater social disruption ( Islam et al., 2021 ). Contrastingly, one study found that social life did not differ between parents of children who were on versus off treatment ( Enskär et al., 2010 ) and another found the relationship between time since diagnosis and perceived social support from friends to be nonsignificant ( Veracasson et al., 2020 ). Child stage of cancer in relation to social support seeking also yielded mixed findings. One study revealed the relationship between the time since the child’s diagnosis and parents’ social support seeking was nonsignificant ( Gage-Bouchard et al., 2013 ); alternatively, Hoekstra-Weebers et al. (2011) found that social support seeking declined linearly overtime. Padeniya et al. (2020) also found that PCCs who were partially or fully recovered used more social support seeking to cope than families with children who were moderately recovered or in critical condition.

Child Type of Cancer

In only one study, parents of children with leukemia versus other types of cancer (lymphomas, blastomas, and sarcomas) experienced less social disruption ( Islam et al., 2021 ). Two studies found no differences in social support by diagnosis ( Altay et al., 2014 ) or between types of leukemias ( Veracasson et al., 2020 ). There were no results related to diagnosis and social support seeking.

This systematic review highlights the value of social support to PCCs; social support is consistently related to greater adaptive outcomes and lower distress and psychopathology across samples worldwide. Data from 37 studies suggest that PCCs report as much or more social support than comparison populations, and social support primarily comes from significant others as well as family members. Our findings also illuminate several gaps in the PCC social support literature deserving of future empirical attention.

The variety of measures used to evaluate social support in PPCs, coupled with disparate study aims and variables of interest, greatly limit conclusions that can be drawn regarding relations between social support and demographic and cancer factors. Researchers should consider selecting a commonly used set of measures to more easily compare results across studies. In addition, some measures provided a less robust evaluation of social support. For example, Veracasson et al. (2020) used a QOL measure with only two social support items; findings from this study were inconsistent with others in the field. In addition, several other studies (e.g., Ghorbani et al., 2020 ; Padeniya et al., 2020 ) used a coping measure that only included two social support items; thus, these findings should be interpreted with caution.

Parents generally reported more perceived social support, but less social support seeking than controls. This difference might be explained by the unique experience of having a child with cancer; for example, supportive others may express their availability and willingness to support PCCs resulting in greater perceived support during this difficult time, but the act of seeking support may be an additional burden for a parent who is already actively managing the complexities of their child’s illness. Integrating information about these two constructs, and additional information about the extent to which available support is utilized, is recommended in future studies to understand the nuances among how social support in PCCs is perceived, sought, and used. The scope of this review did not include information on PCCs perceptions of the quality of their social support, or the degree to which social support was used, which is a limitation of this review’s process and findings (i.e., limited to only quantitative studies) and an opportunity for future research.

It was not surprising that significant others and family were the most prevalent sources of support and that emotional support was the most received type of support. Not only are these people closest in proximity, but they are likely most emotionally connected to the PCCs. Friends, healthcare personnel, and other PCCs were often rated as the second most prevalent source of support, indicating the potential benefit of support groups led by healthcare personnel for PCCs. Given the consistent finding that significant others were among the most prevalent sources of support and Nicolaou et al.’s (2015) finding that single mothers report less support, the study of single PCCs is warranted. Future directions might also address whether parents benefit more from fewer, closer supportive others for emotional support, or a greater number of casual supportive others for instrumental support.

Social support was consistently related to factors of adaptation and well-being in PCCs. Outcomes of well-being, such as benefit finding, posttraumatic growth, and resilience were also related to more social support. The relationship between social support and resilient outcomes might be partially explained by social support’s positive relationship to adaptive coping and positive religious coping, as active and flexible coping is often positively linked to resilience and growth ( Morris et al., 2007 ; Southwick et al., 2014 ). Alternatively, those who engage in adaptive coping may actually attain more social support via their coping actions, and future researchers are encouraged to evaluate perceived social support as an outcome of adaptive coping strategies.

Perceived social support and social support seeking were negatively related to indicators of maladjustment and psychopathology (i.e., distress, anxiety, posttraumatic stress symptoms, and depression) across most studies in this review . One exception was Barakat et al. (2021) who found that perceived social support at diagnosis was correlated with distress at diagnosis; however, it was not associated with distress or posttraumatic stress at treatment completion. This might suggest that social support matters most for adaptation or maladaptation within the same time frame, rather than support at one time point contributing to outcomes at other time points.

Social support seeking was positively linked to father’s distress in a single study. Possible explanations for this opposite finding include that fathers may not receive social support proportionally to seeking it, or that fathers may be more likely to engage in emotion suppression ( Demirtepe-Saygili & Bozo, 2020 ) once seeking and receiving social support, impacting later distress experienced by these fathers. In one study, social support seeking and depression were not significantly related, raising additional questions that should be investigated in future research about whether PCCs receive social support proportionally to seeking it.

Directionality and causality cannot be determined among these relationships due to study design (e.g., cross-sectional). Furthermore, it is possible that individuals who are less depressed, anxious, or distressed more easily maintain, and more positively perceive, their social supports. Future researchers are encouraged to utilize longitudinal or experimental methods to better understand the directionality of the relationships among social support and adaptive and maladaptive outcomes, which remains a critical gap in this literature. This might allow clinicians to draw conclusions about social support as a mechanism of resilient outcomes for both PCCs and their children ( Klassen et al., 2011 ).

No study evaluated social support as a moderator of stress and psychopathology, surprisingly, given the strong theoretical basis that social support would buffer the relationship between stress and maladjustment ( Cohen & Wills, 1985 ). This may have been the case for several reasons, including retrospective, cross-sectional methods, small sample sizes, and the assessment of social support not being a primary aim of many studies. Whereas studies did not statistically model this buffering relationship, it is possible given that having a child with cancer is a tremendously stressful event, and social support is associated with outcomes of well-being in the face of childhood cancer. Nonetheless, there is an important opportunity for future research to evaluate social support as a moderator of stress and psychopathology, as well as resilience outcomes, in PCCs to provide empirical evidence for support of the buffering hypothesis.

Social support differences based on unique parent factors were sparse among this literature. Notably, most parent perspectives included in this review are mothers’, highlighting the need for fathers’ unique perspectives as they navigate pediatric cancer ( Cabrera et al., 2018 ). Mixed findings among differences in social support seeking between mothers and fathers might be explained by traditional gender roles wherein men may be less likely to seek emotional or instrumental support, as well as by the interaction of parent factors and the child’s stage of cancer. For example, mothers and fathers differed on support seeking when their child was recently diagnosed, but not when their child was in follow-up care. Perhaps mothers seek more emotional support than fathers as they are adjusting to their child’s diagnosis given the increased distress and uncertainty that is higher in mothers at diagnosis ( Pai et al., 2007 ), but not once their child has completed treatment.

Studies were highly racially homogenous, and most studies did not specifically evaluate differences in social support on the basis of race or ethnicity. Given evidence that social support might differ across cultures and backgrounds (e.g., Radey, 2015 ; Watt et al., 2012 ), it is critical that future investigations of social support in PCCs explicitly consider race, ethnicity, and other cultural and background variables in their investigations. A one-size-fits-all examination is inappropriate and there might be unique nuances about social support that are critical to consider when working with PCCs with different backgrounds, cultures, or beliefs.

There was considerable variability in SES across the studies; however, this review generally noted a positive relation between SES and perceived social support. It is possible that families with greater financial resources might be able to afford caretakers to assist with childcare or other challenges associated with raising a child with cancer; thus clinicians might consider the social support needs of PCCs who experience financial difficulty when providing interventions.

Findings on social support differences by unique child and disease factors were also minimal. Findings on social support at child stage of cancer were mixed, with some suggesting that both perceived support and social support seeking decline overtime with longer treatment durations, and some yielding no differences based on the stage of cancer. Findings might suggest that parents seek and perceive more social support during the initial phases of their child’s cancer, possibly due to the increased distress that is experienced by PCCs closer to the time of diagnosis and the ways in which demands of treatment disrupt daily life. However, it might be important to monitor parents’ social support as treatment durations extend, given results that suggest decreases overtime. Longitudinal study designs, or retrospective reports at multiple time points, would be valuable for future researchers to better understand how social support utilization, needs, types, and sources might shift for parents across the stages of their child’s cancer ( Armstrong et al., 2005 ; Holmbeck et al., 2006 ).

Future studies should also examine the relationship between the child’s diagnosis and parents’ social support. Given how treatments and severity of illness vary based on diagnosis it is possible that social support also varies for PCCs based on diagnosis and this should be evaluated to help the medical team target parents who may be most at risk for less social support.

In sum, social support differences by unique parent and child factors remain critical gaps in the literature. Unfortunately, most studies failed to examine or report relationships among parent and child factors and social support. In contrast, one study ( Veracasson et al., 2020 ) modeled how to effectively and thoroughly present associations among parent social support and demographic or cancer-related factors via correlation tables. We encourage other researchers to provide more exhaustive analyses to better advance the field’s understanding of how social support might be unique to the individual characteristics and situations of PCCs based on individual factors (e.g., race, SES, and child-diagnosis).

This review provides partial support for the Cohen and Wills (1985) buffering model. Specifically, the research indicates that social support and social support seeking are associated with greater well-being and lower psychopathology in PCCs; however, the data are not clear whether social support moderates the stress of having a child with cancer or predicts well-being. Future researchers are encouraged to examine causal relationships between social support and well-being. In addition, investigators should identify the most vulnerable of PCCs to enable tailored treatments to meet parents’ unique social support needs. This review identified critical gaps in the literature regarding how parents’ social support might differ for parents based on their race, ethnicity, and other demographic factors that should contribute to culturally informed interventions. Future investigators might also integrate how perceived social support interacts with social support seeking and utilization in PCCs.

Clinicians can conclude that social support is important for well-being in PCCs, and be aware that PCCs tend to perceived more social support than normal adults, but seek social support less, perhaps due to the uniquely time-consuming experience of pediatric cancer. Clinicians should overtly discuss and assess social support with PCCs to determine the status, whether it is perceived to be sufficient, and the extent to which parents utilize available support. Clinicians can also share with these parents the abundance of evidence, which clearly indicates that social support is associated with greater functioning and well-being in PCCs. The data suggest that social support might decline for PCCs with longer durations of illness; thus, clinicians should provide ongoing assessment and encouragement of social support for PCCs throughout the later stages of their child’s cancer trajectory. Parents of children with cancer with financial stress, or low SES, might be more at risk for diminished social support; thus, it is recommended that clinicians assess for social support in this population of parents. In conclusion, social support should be considered a potential protective factor for PCCs as they navigate the difficulties of pediatric cancer.

Supplementary data can be found at: https://academic.oup.com/jpepsy .

Conflicts of interest : None declared.

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Being a parent while living with cancer is often physically and emotionally exhausting. You may wonder how you can cope with a cancer diagnosis while caring for your family and yourself. Start by reconsidering your schedule and to-do list. Also, asking for help when you need it allows you to spend less time worrying and more time with your loved ones.

Get support from family and friends

If you have a spouse or partner, talk about how parenting responsibilities may need to shift during this time. Express your appreciation for his or her support. Recognize that these added responsibilities can become overwhelming and may lead to frustration. Talk openly about each other’s limitations, and brainstorm possible solutions. Learn more about how to talk with your spouse or partner about cancer .

Other family members, friends, and neighbors may want to help but may not know how. Make a list of specific tasks you need help with. Tasks may include picking up your children from activities, arranging play dates for your children, walking the dog, grocery shopping, or making meals. When someone offers to help, choose a task from your list that suits the person. For example, you might ask a classmate’s mother to drive your child to school each day. You may find it helpful to ask a friend or family member to coordinate these requests. Some online communities also allow you to coordinate volunteer efforts through a shared calendar.

Seek community support

Your local community may offer resources to help you balance living with cancer and your family life. For example:

School guidance counselors may offer your children extra support. After-school programs can also be an option when you have a doctor’s appointment or need time for yourself.

If you belong to a place of worship, ask about their support programs. Many religious institutions provide financial, physical, or emotional help for parents. Many also provide support to non-members.

Charitable organizations in your community may provide everything from child care and transportation to meals and financial assistance. Oncology social workers , case managers, and your health care team can provide referrals. You can also use this list of general cancer organizations .

Exploring all these resources may be hard for you to manage by yourself. Consider asking a family member or friend to help you.

Ask your children for help

When a parent has cancer, children often feel powerless to change the circumstances. Asking your children to do chores around the house may help them feel like they are making a difference. But beware of creating unrealistic expectations for help around the house. This can add to the stress your child or teen is already feeling about your cancer diagnosis.

Consider the following tips when asking your children to help with chores:

Explain that you are going to need some extra help and that everyone in the family needs to pitch in.

Use a chart to help children and teens keep track of their chores. This will keep your expectations clear by establishing what tasks need to be completed and by when.

Work together to complete bigger tasks. For example, to clean up after dinner, you might have one child clear the table and another put away the leftovers.

Ask your children to help each other. Teenagers and older children can help with car rides and homework. Younger children can help each other pick up toys or fold laundry.

Build incentives into chores. For example, let your children pick their drink and dessert when they make their own school lunch.

Let your child or teen know that you appreciate his or her help. Say thank you and offer rewards for jobs well done. Rewards may include a family movie night, an ice cream outing, or extra screen time.

Remember that you cannot expect your children to be expert cleaners or to do their chores as carefully as you might. Accepting their best efforts will help keep them motivated. Learn more about talking to your children and teens about cancer.

Reevaluate your priorities

Most parents struggle to fit everything into their family’s schedule, even without the demands of cancer and cancer treatment. It is important to accept that you do not have the time or energy for everything. Make sure you are realistic about what you can do.

Consider making a list of all that needs to be done. This could include household chores, child care, and tasks related to your cancer treatment. Then, decide which items are most important for you and which items you can ask someone else to do or just leave undone. Track the family’s activities on a calendar that is shared or displayed so everyone can see it. Talk about the plans together at the beginning of each week or the night before each day.

To make more time for each person’s priorities, consider the following:

Take advantage of free and low-cost delivery services. For example, many grocery stores offer online shopping and home delivery. Other items that can be delivered to your home include prescriptions, household items, school supplies, and dry cleaning.

Spend less time in the kitchen. If you enjoy cooking, try doubling recipes and freezing half to save for another meal. Or, keep your meals simple. For example, sandwiches or scrambled eggs can take the place of a more involved meal. You can also take advantage of healthy meal-delivery services or nutritious ready-to-eat and frozen foods available at many grocery stores.

Instead of cleaning the whole house, focus on what matters most to you. This could include smaller tasks such as having the dishes done or the toys off the floor. If possible, hire someone to do a more complete cleaning once or twice a month.

Reconsider your family’s schedule. If your children are involved in many activities, ask them to take a break from some. Or allow them to pick which activities they would like to continue. Emphasize that it is better to do fewer activities consistently than to do too many with irregular attendance and preparation.

Reconsider your own activities and focus on 1 or 2 that are important to you. Do not commit to any new activities until you know you have the time and energy for them.

Many times, a parent living with cancer feels like he or she has to pack more love and fun into every day because the future is uncertain. This puts a lot of unnecessary stress and pressure on both you and your family. Trying to overfill your time together is often tiring for everyone. And it may end up doing the opposite of what you want. Instead, choose smaller, more manageable activities so you can spend quality time with your family.

Care for yourself

With all the demands on your time, it can be easy to overlook your own needs. Make taking care of yourself a priority so you can care for your family the way you would like. If you find yourself struggling with issues such as fatigue , nausea , pain , or depression , talk with your health care team about ways to manage them. You can also ask an oncology social worker about ways to connect with others who are experiencing similar situations, either by joining a support group or finding a support buddy .

Try to find time to do something you enjoy, such as meeting with friends or seeing a movie. Do not feel guilty about taking time for yourself when the laundry is not finished or when your child wants a ride to a friend’s house. Time spent resting and doing activities you enjoy helps restore your energy. This gives you the strength you need to invest in your family.

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4 Keys to Raising Children While Caring for a Parent With Cancer

ASCO in the Community: Raising Children and Staying Positive While Living With Chronic Cancer

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Coping With a Parent’s Terminal Cancer: Advice And Support

Cancer Blog

March 14, 2022

Facing a parent’s terminal cancer diagnosis is one of the hardest things you can experience. You may feel guilty, overwhelmed and unsure how to cope with your loved one’s illness.

The road ahead might feel overwhelming, but you’re not alone. With the right guidance and support, we can help you navigate this challenging time in the best way possible.

This article offers advice on supporting your parent through their cancer journey, communicating with them about their terminal diagnosis, and taking care of yourself during this difficult time.

Coping with Anticipatory Grief When Facing a Parent’s Terminal Cancer

Anticipatory grief, a natural response to a parent’s terminal illness, includes the deep sadness and mourning experienced before the loss. This emotional journey is common among family members as they struggle with the impending death of a loved one.

Recognizing and understanding this form of grief is crucial in preparing yourself for the difficult path ahead. Here are some things to keep in mind:

A Natural Response : Understand that anticipatory grief is a natural response to a parent’s terminal illness. Anticipatory grief doesn’t indicate giving up hope or diminished love; it’s merely a way of processing the potential future and the changes it might bring.

Embrace Diverse Emotions : Anticipatory grief can bring forth a range of emotions, from sadness and fear to moments of joy and gratitude. Recognize that each person’s experience with anticipatory grief is unique, and allowing yourself to feel without judgment is important.

Cherish the Present : Although concerns about the future may arise, strive to remain present and treasure the moments you share with your terminally ill parent. Engage in activities that bring joy, creating positive memories together.

Seek Support : Engaging in conversations about your emotions can be therapeutic. Whether with friends, family, or a professional, sharing your feelings can bring relief and clarity. Consider joining support groups, either online or offline, to connect with others who understand your experience.

Prioritize Self-Care : Caring for your emotional well-being is crucial during this challenging time. Engage in activities such as meditation, journaling, or walking to ground yourself and find moments of peace.

Embrace Hope : Anticipatory grief doesn’t negate hope. It’s a testament to the depth of your love and the human capacity to prepare for change. By addressing the grief, you’re equipping yourself with the tools to deal with the situation using strength and compassion.

Understanding the Impact of Terminal Cancer on Families

When a parent faces a terminal cancer diagnosis, it affects the entire family profoundly. This diagnosis doesn’t just influence own health of the person with the illness; it ripples through the lives of family members, from young children to adult children and other loved ones.

Emotionally, the family may experience sadness, fear, anger, and grief. Relationships within the family might change, requiring open communication and empathy to maintain.

Explaining and supporting them through this tough situation is vital for children and adolescents. Conversations about end-of-life care can be challenging, and seeking guidance from healthcare professionals is beneficial.

Recognizing and addressing anticipatory grief within the family is crucial. Sometimes, seeking professional help from a certified therapist is helpful, and joining support groups can provide a sense of community.

By understanding the profound impact of terminal cancer and addressing the unique needs of each family member, it’s possible to navigate this difficult journey with strength, compassion, and an accurate understanding of the challenges involved.

How to Cope with a Parent with Terminal Cancer: Tips & Recommendations

When facing the daunting reality of a parent’s terminal cancer, it’s important to keep the following tips and recommendations in mind when trying to deal with this challenging situation as well as you can expect:

Lean on Each Other, Professionals, and Support Groups : The weight of your parent’s terminal illness can be shared among family members. Embrace each other’s support, consult healthcare professionals for guidance, and consider joining support groups. These connections provide emotional solace and valuable insights.

Create or Join a Support Group in Your Community : Seek out or establish a local support group for those involved with a terminal cancer diagnosis. These groups offer a sense of belonging, understanding and a platform to share experiences and advice.

Find a Cancer Care Center Near You : Research and locate a reputable cancer care center nearby. These centers provide comprehensive care for cancer patients, offering valuable resources and expertise.

Talk to Your Parent About Their Illness and How They Feel : Open and honest communication is essential. Engage in heartfelt conversations with your parent about their illness and emotional state. It fosters understanding and strengthens your connection.

Don’t Try to Handle Everything Yourself : Avoid shouldering the entire burden alone. Share responsibilities and concerns with other family members. Rely on a network of support to ease the emotional and practical challenges.

Take Care of Yourself Both Physically and Emotionally : Prioritize self-care. Maintain physical well-being through regular exercise and a balanced diet. Emotionally, seek solace in activities that bring peace, and allow yourself moments of respite.

Seek Professional Help From a Licensed Therapist : Sometimes, the emotional weight of a parent’s terminal illness is overwhelming. Consulting a therapist offers a safe space to process feelings and develop coping strategies.

Remember Each Family Member May Be Affected Differently : Acknowledge that each loved one may react differently. Emotions and coping mechanisms vary. Approach each family member with empathy and understanding.

Remember, You Still Have Your Own Life to Live : While supporting your parent through their illness is essential, it’s crucial not to forget your life. Maintain a balance, pursue your goals, and nurture your well-being.

By embracing these strategies and utilizing the available support networks, you can help manage different emotions while coping with a parent’s terminal cancer with resilience and compassion.

Look for Online Communities for Support

When dealing with a parent’s cancer in a delicate family situation where leaning on each other isn’t possible, it can feel isolating and emotionally challenging.

However, there’s a lifeline, online support groups, and forums for those facing a loved one’s terminal cancer. These digital communities offer a safe haven to connect with others who empathize with your experience and provide valuable advice, emotional support, and a sense of belonging.

Here is a list of online support groups and forums for cancer survivors:

4th Angel Mentoring Program : Pairs you with experienced mentors who understand cancer and provide emotional support.

Inspire: Connects people with health conditions, including cancer, allowing them to share stories, ask questions, and offer support.

MyLeukemiaTeam : Recommended for leukemia-affected individuals, offering a place to connect, share experiences, and get practical advice.

Lotsa Helping Hands : Helps streamline caregiving tasks among friends and family with tools like a shared calendar and message boards.

CancerCare : Offers over 100 online support groups led by oncology social workers, providing valuable support and guidance.

Cancer Connect : Combines the latest cancer treatment news with a moderated social community for patients and caregivers.

Cancer Support Community : A global nonprofit offering support, education, and hope through community centers, hospitals, and online platforms.

Cancer Survivors Network (CSN) : A peer support community from the American Cancer Society, connecting patients, survivors, caregivers, and families.

CaringBridge : Allows users to create private web pages for sharing patient updates and photos and coordinating assistance.

Inspire : A dedicated platform uniting individuals affected by cancer, serving as a hub for social interactions and professional guidance.

Lotsa Helping Hands : Simplifies caregiving coordination with a calendar and message boards, offering mobile apps for iOS and Android users.

Know Cancer : Unites, informs, and supports those touched by various forms of cancer through an online community.

MyLeukemiaTeam : A safe social network for those affected by leukemia, connecting members to share experiences and treatment insights.

Navigating Cancer : Offers tools and resources for active health management, promoting collaboration between patients, medical teams, and personal support networks.

Smart Patients : An online community for patients and families to discuss treatments, share challenges, and gain insights across various health conditions.

Things You Can Do to Help Your Parent with Terminal Cancer

You can help your parent with terminal cancer in many ways, such as assisting with their daily tasks, staying positive for them, and providing emotional support for them when they need it most.

Here are seven ideas to assist your parent:

Help with Daily Tasks : Due to treatment, your parent may be too tired. Assist with cooking, cleaning, and errands to make their life easier.

Stay Positive : Maintaining a positive attitude, despite the challenging circumstances, can offer crucial support and optimism to your parent.

Be Present : Spending time and being there when they need you is a precious gift during this difficult time.

Provide Emotional Support : Listen, discuss their feelings, and offer a shoulder to lean on, providing the emotional support they need.

Care for Belongings : If your parent receives palliative care, help them manage their belongings, lightening their load.

Discuss End-of-Life Decisions : Have a challenging but essential conversation about end-of-life decisions to ease the grieving process for both of you.

Plan End-of-Life Care : Prepare for the future by considering full palliative care, writing a will, and arranging funeral services if your parent’s illness is terminal.

Help with financial and legal matters

There may be financial and legal matters that your parent needs help with. Offering to help with the beurocratic and administrative duties can be a great way to show your support for them and relieve some of the stress.

Here are a few tips on how to finance terminal illnesses:

Consider Selling Their Life Insurance Policy

If your parent has a life insurance policy, selling it for immediate cash funds can provide financial relief during their terminal illness. Viatical settlement companies like American Life Fund specialize in these transactions.

Organize a fundraiser

One way to help finance a terminal illness is to organize a fundraiser. This can be done through online platforms like GoFundMe or event hosting. Benefit concerts, charity auctions are trivia nights are just some of many engaging activities that can bring people together and raise some money too.

Apply for government assistance

Government and nonprofit assistance programs are available to help finance individuals suffering with a terminal illness. Financial assistance programs provide financial assistance for medical expenses, home care, and much more.

Look into private assistance

There are also private organizations that and health care professionals may help finance a terminal illness. These organizations can provide financial assistance for medical expenses, home care, and more.

What to Expect from Your Parent with Terminal Cancer

The symptoms of physical degeneration may vary according to the disease. Be sure to talk to healthcare professionals.

Nevertheless, several general signs of the body shutting down are usually observed in almost every person. Some physical symptoms may appear gradually, and others appear immediately after diagnosis:

Respiratory Issues : Near the end of life, respiratory issues often emerge. Signs such as coughing and shortness of breath indicate disease progression. Fluid buildup, known as edema, can occur as the body’s systems begin to shut down.

Weight Loss & Loss of Appetite : Rapid weight loss is common as the body’s systems fail, signifying inadequate nutrition. Your loved one may lose their appetite or stop eating altogether.

Skin Changes : Changes in skin color or dryness may occur, indicating dehydration due to insufficient fluid intake.

Changes in Sleeping Patterns : Altered sleep patterns, including difficulty sleeping or increased sleep duration, can be expected.

Disorientation, Confusion, and Agitation : Disorientation, confusion, and restlessness may manifest. These symptoms can indicate discomfort, pain, or proximity to the end of life.

Urinary & Fecal Incontinence : Loss of control over bladder and bowel functions is common in the final stages of life, reflecting the body’s diminishing control.

Physical Pain : Physiological pain is common as health declines, stemming from cancer or related illnesses.

These are among the most frequent symptoms observed near the end of life. Communicating any concerns to your healthcare professional for guidance and support is crucial.

Unusual Requests or Communications

As your parent approaches the final stages of their journey, you may encounter moments of unexpected requests or nonsensical utterances. These instances can be indicative of their shifting mental state as clarity wanes.

Withdrawing From Family & Friends

A sad development may be the gradual withdrawal of your terminally ill loved one from cherished family and friends. This subtle retreat can be a poignant sign of their growing weariness in the face of their condition.

Fatigue and Weakening

A profound sense of fatigue and weakness could consume the terminally ill person as they approach the end of their life.

Discoloration and Temperature Variations

The skin may assume lighter or bluish hues, and the extremities, such as the hands and feet, might exhibit temperature fluctuations, alternating between warmth and coldness towards the end.

Frequently Asked Questions When Coping With a Parent With Terminal Cancer

How can i ensure my parent’s comfort and quality of life during treatment.

Prioritize open communication with your parent to understand their needs and preferences. Collaborate with healthcare professionals to manage pain and side effects. Create a comfortable home environment, and consider activities or hobbies that bring them joy.

What are some ways to memorialize and cherish moments with a terminally ill parent?

Spend quality time together, engaging in meaningful conversations or revisiting fond memories. Consider recording audio or video messages, creating a scrapbook, or writing letters to each other. Simple activities, like watching a favorite movie or listening to cherished songs, also creates lasting memories.

Are there financial assistance programs available for families dealing with terminal cancer?

Yes, many organizations offer free money and financial assistance to families facing terminal cancer. Local cancer societies, nonprofit organizations, and hospitals often have programs or can direct you to resources that provide financial support or assistance with medical bills.

How can I balance my personal life, work, and caregiving responsibilities?

Prioritize tasks and set boundaries. Communicate openly with your employer about your situation, and consider flexible work hours or remote work. Remember to allocate time for self-care and consider seeking support from friends, family, or professional caregivers when needed.

What are some signs that my parent might need more intensive care or hospice services?

Signs include increased pain, frequent hospitalizations, decline in cognitive abilities, difficulty managing daily activities, and a doctor’s recommendation that treatment is no longer beneficial.

How can I prepare myself and my family for the eventual loss of our loved one?

Open communication is key. Discuss feelings, seek counseling or support groups, and create opportunities to make lasting memories. Ensure legal and financial matters are in order, and consider creating a memory book or video together.

How do I approach end-of-life conversations with my parent?

Start by choosing a calm and private setting. Express your love and concern, and let them know you’re there to support their wishes. Listen actively and allow them to share their feelings and concerns. Being patient, understanding, and open to multiple conversations as they process their emotions is essential.

What legal preparations should we consider, such as wills or advanced directives?

It’s advisable to have a will in place to outline the distribution of assets. Additionally, consider setting up an advanced directive or living will, which specifies medical treatment preferences should they become unable to make decisions. A durable power of attorney can also be established to allow a trusted individual to make financial or health decisions on their behalf.

How can friends and extended family best support us during this time?

Friends and extended family can offer emotional support by listening and being present. Practical assistance, like helping with chores, meals, or childcare for younger children, is also invaluable. Respecting the family’s wishes, being patient, and offering to help with memorial or funeral arrangements provides further comfort and relief.

Are there any recommended books or resources to help children understand terminal illness?

Young teenagers and children have unique emotional needs when dealing with a parent’s terminal illness. Providing age-appropriate information, support, and resources is crucial to help them process their emotions. Here are some resources for a child coping with a parent’s terminal illness:

Supporting children and young people when someone has a terminal illness This guide offers insights and advice on how to support children and young people when someone close to them has a terminal illness. It equips caregivers with the full emotional experience, knowledge,, and tools to navigate such challenging circumstances.

Supporting Children When Someone They Love Has a Serious Illness This handbook is a valuable resource for those looking for guidance on supporting children during difficult times. It emphasizes understanding children’s emotions and offers practical strategies to help them cope.

Helping Children and Teens Adjust to a Loved One’s Terminal Illness This resource provides actionable tips, emotional support strategies, and insights into children’s emotional responses.

Grief Out Loud | Podcast on Spotify This podcast has personal stories, tips for supporting children, teens, and yourself, and interviews with professionals.

How do I handle differences in coping mechanisms among family members?

Recognize that everyone processes grief and stress differently. Open communication is key. Encourage family meetings or discussions to understand each member’s feelings and needs. Seek external support, like counseling or support groups, to provide a neutral discussion space.

What are the potential side effects of cancer treatments, and how can they be managed?

Cancer treatments lead to various side effects, including fatigue, nausea, hair loss, and changes in appetite. It’s essential to communicate with the medical team about these side effects. Medical professionals can recommend management strategies, medications, or alternative treatments to alleviate discomfort.

Are there alternative therapies or treatments we should consider?

Always consult with the primary oncologist before exploring alternative therapies. Some patients find relief in complementary treatments like acupuncture, massage, or herbal supplements. Ensure any alternative treatments do not interfere with ongoing medical treatments.

About the Author: Eugene Houchins

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• Published: 05 December 2022

Health behaviors and psychological burden of adolescents after parental cancer diagnosis

• Kyae Hyung Kim 1 , 2 ,
• Min Sun Kim 1 , 3 ,
• Seulggie Choi 4 ,
• Sung Min Kim 4 &
• Sang Min Park 2 , 4  

Scientific Reports volume  12 , Article number:  21018 ( 2022 ) Cite this article

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• Health care
• Human behaviour
• Risk factors

This study aims to investigate health behaviors and psychological burdens in adolescent children of cancer parents. We compared health behaviors and mental health outcomes between 266 adolescent children with a parent diagnosed with cancer and 3163 control adolescents aged 12–19 years using data from the Korean National Health and Nutrition Examination Survey (KNHANES) from 2010 to 2018. Alcohol use of adolescents increased between 2 and 5 years after parental cancer diagnosis (adjusted odds ratio [aOR], 1.72; 95% confidence interval [CI], 1.01–2.94) but decreased after 5 years. Parental cancer was associated with increased vaccination uptake in adolescents within 1 year of diagnosis (aOR, 3.19; 95% CI, 1.55–6.54), but after 2 years, there was no difference from rates in their peers. Maternal cancer was associated with increased depression among adolescents (aOR, 1.73; 95% CI, 1.10 − 2.73). Although the risks of suicidal thoughts/plans/attempts increased within 1 year after parental cancer diagnosis (aOR, 2.96; 95% CI, 1.00 − 8.83), it reduced 2 years after diagnosis, leading to no significant difference from the frequency in peers. Within five years after the parent was diagnosed with cancer, support for their adolescent children's health behaviors and mental health is necessary in the community.

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Introduction

Cancer is a leading cause of death worldwide, with nearly 10.0 million deaths in 2020 1 . Cancer development is a complex multi-stage process involving molecular and cellular changes over many years with various risk factors. Accordingly, the incidence of most cancers increases with age, usually more dramatically after middle age 2 . However, a significant proportion of the child-bearing-aged population is still affected. According to the statistical data of the Korean Central Cancer Registry, 10% of male cancer patients and 26% of female cancer patients were in the child-bearing age group between the ages of 30–49 in 2018 3 .

Parental cancer can affect all family members physically, emotionally, socially, and culturally. The patient’s regular routine is disrupted by treatment, potential job loss, and financial problems. Unplanned admission, frequent clinic visits, and decreased function in cancer parents make it difficult for them to care for their children so they can participate in school activities. Higher levels of anxiety and depression in cancer patients are also associated with an increased risk of emotional and behavioral problems and lower quality of life in their children 4 , 5 , 6 . Among children of all ages, adolescents are particularly at risk of psychological problems 7 , 8 , 9 .

Adolescent children show the first signs of puberty in their early teens, approximately between 9 and 13 years 10 , 11 . They experience a period of dramatic change with rapid physical growth, onset of sexual maturation, and increased self-consciousness and social challenges. Although adolescence is one of the physically healthiest periods in one’s lifetime, there are a notably high proportion of deaths from preventable causes, such as interpersonal violence, suicide, and accidents such as drowning or road traffic accidents 12 . In addition, lifestyle risk factors that dominate life are formed during this period and affect mortality rates later in life. These adolescent health problems are disproportionately influenced by family stability and the social environment 13 , 14 .

Although the health of children with parental cancer has been studied steadily in Western countries, there is still scarce evidence in Asian cultures. In the present study, we used data from the Korean National Health and Nutrition Survey (KNHANES) to assess the association between factors of parental cancer and health risks of adolescent children after a parental cancer diagnosis.

Materials and methods

Study population.

The Korea National Health and Nutrition Examination Survey (KNHANES) is a nationwide survey of the health and nutritional status of community-dwelling Koreans. A stratified multi-stage clustered probability design was used to select a representative sample of civilian, non-institutionalized Koreans. The fifth (2010–2012), sixth (2013–2015), and seventh (2016–2018) KNHANES included comprehensive information on the health status, health behavior, and sociodemographic characteristics of the population in 576 national districts. The health interview survey was conducted for all study participants, but the health examination survey and nutritional survey were conducted by randomly selecting about a third of the participants in the health interview survey. The health interview survey in KNHANES was conducted through face-to-face interviews at subjects’ homes by trained interviewers.

When parents and children from one family participated in the survey, the ID of the father and/or mother was coded, and their data were merged for further analysis. The initial participants included 5686 adolescents aged between 12 and 19 years who had the ID code of their parents during the fifth, sixth, and seventh KNHANES surveys, and completed the health interview and health examination surveys. Among them, 2257 participants whose parents did not have a history of cancer were excluded, yielding 3429 adolescents as the final study population (Fig.  1 ).

Study population.

Associated factors

Adolescents’ variables.

From 2010 to 2018, adolescent participants completed the Health Interview Survey, including age, sex, residential area (rural or urban), and education level. Household income was divided into three levels (< 2000, 2000–5000, or > 5000 thousand won).

Height and weight measurements of adolescent participants were obtained using a standard protocol with an automatic and portable height and weight measuring device. Their weight-for-age was divided into three groups (< 5th, 5th −  < 95th, and ≥ 95th percentile) in reference to the 2017 Korean National Growth Chart 15 .

Adolescents' smoking status was assessed by a question about lifetime ever-smoking experience aged from 12 to 18 years (yes or no) while another question about lifetime smoking measures their lifetime smoking classified into (1) less than 100 cigarettes (2) 100 cigarettes or more (3) never for adolescents aged 19 years or older. For the purpose of analysis, we dichotomously divided them into ever-smoker and nonsmoker. Lifetime alcohol consumption was assessed “Have you ever drank more than one drink in your life?” and the option was yes or no.

The physical activity in the past week was assessed among adolescents using IPAQ (International Physical Activity Questionnaire) between 2010 and 2013, GPAQ (Global physical activity questionnaire) between 2014 and 2016, and hours of moderate or more physical activity between 2017 and 2018. GPAQ reflects leisure-time, worktime, and transport-related PA, allowing accurate evaluation of PA for each area, and the rest of the questionnaires do not distinguish them. Although there was difficulty in simple comparison, we set as a dichotomous variable whether moderate-intensity PA was performed for 150 min or more per week, vigorous-intensity PA more than 75 min, or the equivalent dose of moderate and vigorous physical activity according to the American College of Sports Medicine (ACSM) exercise guideline.

Influenza vaccination during the past 1 year was assessed using a self-reported questionnaire, “Have you been vaccinated against influenza (seasonal flu) in the past year?” And participants who answered “yes” to this question were defined as having received an influenza vaccination. Currently, influenza and Human Papilloma Virus vaccines are recommended in a Korean national vaccination program for adolescents.

Self-rated health consists of the response to the single item, "Would you say your health, in general, is very good, good, fair, poor, or very poor?" We dichotomously categorized “very bad” or “bad” into the “bad participant health” group and “very good,” “good,” or “average” into the “good participant health” group.

Adolescent participants were asked about their stress, “How much stress do you feel in your daily life?” and they rated their stress level as “very high,” “high,” “low,” or “very low.” We dichotomously categorized “very high” or “high” into the “high stress” group and “very low” or “low,” into the “low stress” group 16 .

Depression was screened through a single question, “Over the last 1 year, have you ever had two weeks or more where nearly every day you felt sad or hopeless?” which could be answered yes or no. Adolescents’ suicidal thoughts, plans, and attempts were assessed by asking about the occurrence of those experiences in the last 1 year. An adolescent could answer yes or no to such questions about suicide as “Have you seriously considered suicide in the past year?” “Have you made any concrete plans to commit suicide in the past year?” and “Have you actually attempted suicide in the past year?”.

Parental cancer variables

The type of cancer was identified from the medical history section of the questionnaire from the parental survey. From 2010 to 2018, the seven most common types of cancer in Korea were identified through cancer questionnaires (breast, colon, stomach, liver, uterine cervix, lung, and thyroid cancer) and cancer from other sites, including prostate, pancreas, bladder, esophagus, and ovary, among others, was categorized as “other cancer types.” Parental cancer was classified as maternal or paternal. The time after parental cancer diagnosis was calculated by subtracting the age in years at which the participant reportedly was when a parent first had cancer from the age in years at the time of the questionnaire.

Data analysis

Descriptive statistical methods were used to describe the basic characteristics of the study population, and the results from the chi-squared test for categorical variables and the unpaired t − test for continuous variables are reported. We conducted univariate logistic regression analysis to measure the association between parental cancer and adolescents’ development, tobacco and alcohol use, physical activity, vaccination, subjective health status, stress, depressive mood, and suicidal thought/plan/attempt. To assess the adjusted odds ratios for aforementioned adolescent health behaviors and psychological factors, we used the following covariates in the multivariate logistic regression analysis: sex, age, and household income. A p-value of less than 0.05 was considered significant, and 95% confidence intervals are shown. No weighting was applied. All statistical tests were performed using STATA version 14.0 (Stata Corp., College Station, TX, USA).

Ethical Approval

This survey complies with the principles of the Helsinki Declaration. The methods were carried out following the relevant guidelines and regulations. All participants agreed to fill out an informed consent form. The KNHANES database is anonymized with the use of its data guided by strict confidentiality guidelines 17 . This present study was approved by the ethics boards of the Seoul National University Hospital (IRB number E-2112–007-1284).

Baseline characteristics

Baseline characteristics of the study population are presented in Table 1 . The mean age of adolescents with parental cancer was 15.6 ± 2.3 years, which was older than those without parental cancer (15.3 ± 2.3 years). The proportion of elementary school students was higher among adolescents with parental cancer than among adolescents without parental cancer. The difference in sex distribution was not significant. The weight for age for both groups and proportion of smokers and drinkers were not significantly different. Household income and residential area of adolescents also did not differ between the two groups. The proportion of having single parents was 15.8% among adolescents without cancer patients and 11.0% among adolescents with cancer patients.

Among adolescents with cancer parents, 75.6% had maternal cancer, while 24.4% had paternal cancer. None of the patients had both paternal and maternal cancer. Most cases of parental cancer only involved a single cancer; 5.2% of parents with cancer had a second primary cancer. Among cancer survivors, thyroid cancer was the most common cancer (36.5%), followed by breast (21.4%), uterine cervix (10.9%), stomach (8.6%), colorectal (4.9%), liver (1.5%), and other cancers (18.0%). Among the cancer survivors, ≥ 5 years had elapsed since diagnosis in 53.6% of subjects, 2 −  < 5 years since diagnosis in 38.3%, and ≤ 1 year since diagnosis in 8.1%.

Adolescent health behaviors

Table 2 shows the health behaviors of adolescents with and without parents with cancer. The proportion of adolescents with abnormal weight for their age was similar between adolescents with and without a parent with cancer. The proportion of current smokers and adolescents who performed physical activity over the recommended levels was similar in adolescents with and without parents with cancer. In an unadjusted model, the proportion of any alcohol use among adolescents whose mother was diagnosed with cancer was higher (odds ratio 1.30, 95% confidence interval [CI], 0.96–1.78); however, the significance was weakened after multivariate adjustment. Interestingly, the adolescents who had any parent with cancer and who had paternal cancer were more likely to have an influenza vaccination than adolescents without parental cancer. However, adolescents with maternal cancer did not show a difference in influenza vaccination rates from that in adolescents without a parent with cancer.

Table 3 shows the health behavior factors according to time since parental cancer diagnosis compared to that in the control group with no parents with cancer. The crude proportion showed that health risk factors, such as abnormal weight for age, smoking, and alcohol use, were highest at 2–5 years after parental cancer diagnosis (23.8%, 18.4%, and 36.2%, respectively). Desirable health behavior such as influenza vaccination were as high 48.5%, immediately after a parental cancer diagnosis at ≤ 1 year and decreased with an increasing number of years after cancer diagnosis to levels similar to those in the control group.

In the multivariate logistic model, the proportion of adolescents with abnormal weight for age differed between groups according to time. The smoking rate of adolescents was significantly higher 2 − 5 years after a parental cancer diagnosis with an odds ratio of 1.58 (95% CI, 0.93–2.68), but this association was weakened after multivariate adjustment. Alcohol use was significantly increased 2–5 years after a parental cancer diagnosis with an adjusted odds ratio (aOR) of 1.79 (95% CI, 1.05–3.03). The influenza vaccination rate increased considerably at ≤ 1 year with an aOR of 3.17 (95% CI, 1.54–6.50); however, it decreased 2 or more years after cancer diagnosis to a level that was no different from that in the control group.

Adolescent mental health

The subjective health status and stress levels did not differ between adolescents with and without parental cancer (Table 2 ). The multivariate model showed marginal significance that adolescents with paternal cancer were not likely to feel very bad or bad about their own health. Depressive symptoms in adolescents were particularly high when their mothers were diagnosed with cancer (aOR, 1.74; 95% CI, 1.50–2.75). Although suicidal thoughts were more common with a crude proportion of 6.1% vs. 4.1% when mothers had cancer, these associations were non-significant after multivariate adjustment.

Depressive mood was more common 2 years after diagnosis, but this association was also weakened in the multivariate model (Table 3 ). Approximately 11.8% of adolescents whose parents had cancer had suicidal thoughts/plans/attempts within 1 year after a parental cancer diagnosis. Although the risks of suicidal thoughts/plans/attempts increased within 1 year after parental cancer diagnosis (aOR, 2.96; 95% CI, 1.00 − 8.83), it reduced 2 years after diagnosis, leading to no significant difference from the frequency in peers.

Depression and suicidal ideation were more prevalent in girls than boys, with or without cancer parents (Fig.  2 ). In general, the raw proportions increased in boys and girls with cancer parents compared to boys and girls without cancer parents, but there was no statistically significant difference. When the multivariate analysis was conducted, the adjusted proportion of depression was 8.3% for boys with cancer parents and 5.7% for boys without cancer parents, and there was no statistically significant difference (Fig.  2 ). In addition, girls with cancer parents had a proportion of depression of 11.7%, and girls without cancer patients had a 10.0%, but there was also no significant statistical difference. There was no statistical difference in suicidal thought/plan/attempt between 0.8% of boys with cancer patients' parents and 2.7% of boys without cancer patients. In addition, 8.8% of girls with cancer patients' parents and 5.4% of girls without cancer patients had suicidal thought/plan/attempt in the past year, but there was no statistical difference in the multivariate model (Fig.  2 ).

Comparison of depression and suicidal thought among adolescent boys and girls with and without cancer parents. ( A ) Depressive mood more than two weeks. ( B ) Suicidal thought/plan/attempt in the past year.

Our study shows that, although adolescent children have high behavioral changes and psychological stress in the early stages of their parents' cancer diagnosis, they adapt over time and there is no difference from the general peer group after 5 years in the community setting. Their negative behavior such as alcohol use increased and positive behavior such as vaccination increased for a period of time after a parental cancer diagnosis. There was no significant difference in their subjective health status or stress, but adolescents were more likely to be depressed when their mother was diagnosed with cancer and have suicidal thoughts/plans/attempts immediately after a parent was diagnosed with cancer. However, this vulnerability decreased five years after diagnosis.

Our data showed similar prevalence of adolescent psychiatric problems compared to previous Western studies. Adolescent with parental cancer showed depressive mood in 10.5%, significant stress in 27.3%, and suicidality in 5%. Filial piety, ‘hyo’, is still regarded as an adult children’s duty to care for their old and sick parents in Korea and many Asian countries. Caregiving is strongly aligned with Confucian concept of family and family participation 18 , 19 . Although studies in other Asian county shows filial piety may lessen caregiver burden 20 , 21 , it does not mean that the family caregivers do not experience burden or stress 22 , 23 In norms of filial piety, there also has been a gender difference for the roles of sons and daughters, and daughters are more likely to serve as caregivers for their parents 21 . As Korean society modernizes, the idea of filial piety is gradually disappearing 24 , and in this study, Korean adolescents with cancer parents show a similar magnitude of risks by gender to those of previous Western studies. ADDIN EN.CITE 25 , 26 .

Our result corresponds to previous studies that girls reported more psychological symptoms than boys when their parents had a cancer diagnosis 27 , 28 . In the present study, 8.3% of boys and 11.7% of girls had depressive symptoms. In a Finnish birth cohort study, among 13–17-year-old adolescents, 7.2% of boys and 15.7% of girls with cancer mothers received outpatient psychiatric care 27 . Previous studies suggested that girls are more likely to suffer from distress due to the genetic nature of breast cancer, and girls are likely to have internalizing problems while boys have externalizing problems 6 , 29 .Stressful life events, such as death, divorce or separation, or unemployment of parents, are known to increase drinking and smoking rates in adolescents 30 , 31 . Previous studies have suggested that adolescents with family history of cancer have similar health behaviors, such as smoking, alcohol consumption, and nutrition, compared to those without family history of cancer, despite predisposed genetic risks 32 , 33 . In the present study, the adolescents with parents with cancer did not show differences in their physical development. or health behaviors, compared to those without parental cancer, which is in accordance with previous studies. Their smoking and drinking rates tend to increase at some point after their parents are diagnosed with cancer. Their parents, cancer survivors are recommended to reduce alcohol and smoking cessation to increase their survival, reduce cancer recurrence, and decrease second primary cancer 34 , 35 . A family-level health behavior intervention program can be considered after a parental cancer diagnosis.

Our study also shows that parental cancer diagnosis can positively influence adolescent children's health behaviors. Previously, there was no evidence of the effect of parental cancer on children's vaccination uptake. However, parental attitudes and social factors are well known to be associated with childhood vaccination 36 , 37 . Our study showed that the positive influence on vaccination uptake was especially high in adolescents with paternal cancer. It is most likely that not only did the adolescents change vaccination behavior, but their parents also increased their knowledge and had a positive attitude toward vaccination in families caring for fathers with cancer who often had chemotherapy and immunocompromised. Unfortunately, it lasted less than 1 year after the parent’s cancer diagnosis and did not last if the parent survived for more than 5 years. Strategies are needed to ensure that these healthy behaviors are maintained 38 .

Our study corresponds to previous studies that a mother’s illness may have a more substantial influence on adolescents’ emotional well-being than a father’s illness because mothers are more often involved in caring for their children than father’s due to cultural norms 39 . In a previous interview with breast cancer patients revealed that they struggled to be responsible for raising their children while receiving treatment and could not focus on being sick 40 . Moreover, surviving mothers often feel guilty about their children’s abandonment during treatment 40 . This influence is often bidirectional and mutual, and other family members can interact. One study found that children's anxiety and depression increased when their fathers were unable to adjust to bereavement and when families had closed communication about their mother's cancer 41 . The burden on families could be reduced by emphasizing social support for enhancing expression and empathy between sick parents and children.

A previous study reported that the children of cancer patients experienced post-traumatic stress syndrome in the first 4 months of the parental cancer diagnosis 29 . Our study also showed that although they showed a notable increase in suicidal thoughts, plans, or attempts in the first year, they did not show increased suicidality after the second year of a parental cancer diagnosis. Their risky health behaviors increased between 2 and 5 years but decreased from 5 years after parental cancer diagnosis. Although there may be individual differences according to their temperament, stage or unpredictability of parental cancer, or family functioning, the majority of adolescents experience a restoration in psychological and physical function over time 42 , 43 , 44 . Social support may enable them to overcome these crises more easily; adapt to significant physical, cognitive, social, and emotional changes in adolescence 45 , 46 , 47 ; and be a catalyst for their posttraumatic growth after negative life events 48 , 49 .

A major strength of our study was the utilization of nationwide data sources, which enabled us to compare results across the general adolescent population. It is possible to better reflect the reality of families with members with cancer through a community-based design rather than a hospital-centered study. Other strengths include the availability of detailed information on the physical and psychosocial conditions of adolescents.

The significance of this study may serve as reference data for future interventions. Screening for adolescent mental health immediately after the parent's cancer diagnosis is the top priority, and it is also necessary to evaluate their health behaviors. Regular evaluation is required for adolescent use of alcohol and smoking within five years of a parental cancer diagnosis. At the same time, it will be possible to make the crisis act as a positive factor by encouraging physical activity and vaccination of adolescent children. Future research is needed to investigate family-oriented interventions for cancer survivorship to reduce cancer parents' mortality and the long-term risk for their adolescent children.

Some limitations of this study should be considered. First, because this was a cross-sectional study, the causes of differences between cancer survivors and the general population could not be established. Second, several pieces of information were collected from self-reported questionnaires, so reporting bias cannot be excluded. In particular, since the mental health status of adolescents was evaluated through a single question, it was not possible to classify and evaluate the correct psychiatric diagnoses such as major depressive disorder, bipolar disorder, anxiety disorder, affective disorder, or etc. Third, parental cancer stage, previous or ongoing treatment, prognostic factors, and other comorbid chronic diseases were not considered. Fourth, predisposed adolescent history, such as psychiatric diseases other chronic illnesses, school absence, and academic achievement could not be acquired. Fifth, this study mainly investigated cancer survivors, and we cannot generalize our results to all adolescents with a parent with cancer. In addition, we only considered adolescent children of long-term survivors. However, considering that the overall cancer survival rate has improved up to 70% with early detection and treatment, we still need to address the growing problem of cancer survivorship.

Our study suggests that most adolescent children of cancer survivors did not differ in their smoking, alcohol use, physical activity, and risk of being underweight or overweight compared to general peers. However, alcohol use and vaccination rates somewhat increased immediately after parental diagnosis. These behavioral changes occurred mainly within 5 years of diagnosis, and after 5 years of parental survival, behaviors were the same as those in the general population. There was no significant difference in their subjective health status or stress, but adolescents were likely to become depressed when the mother was diagnosed and have suicidal thoughts/plans/attempts immediately after a parent was diagnosed with cancer. However, this vulnerability decreased from five years after diagnosis. Overall, our study showed that most adolescent children of cancer survivors are resilient to distress associated with parental cancer diagnosis over time. Tailored community-based social support will be required for adolescents to make positive psychological adjustments and grow into adults.

Data availability

The data that support the findings of this study are openly available in the official website of KNHANES at https://knhanes.kdca.go.kr/knhanes/sub03/sub03_02_05.do .

Abbreviations

Korean National Health and Nutrition Survey

American College of Sports Medicine

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K. H. K. designed and performed the analyses and drafted the manuscript. S. M. P. and M. S. K. supported the conceptualization of the study and the definition of the concrete analyses' contents. The process was accompanied by S. C. and S. M. K. provided technic and scientific support for the analyses. The final manuscript has been critically revised and approved by all authors.

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Kim, K.H., Kim, M.S., Choi, S. et al. Health behaviors and psychological burden of adolescents after parental cancer diagnosis. Sci Rep 12 , 21018 (2022). https://doi.org/10.1038/s41598-022-25256-5

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Anxiety and Decision-making among Parents Coping with Childhood Cancer during the First Year of Treatment

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Parents of children with cancer face a high level of distress. One contributing factor to this is their need to make life-altering treatment decisions. To understand specific variables that may contribute to parents’ distress and decision-making preferences, we assessed correlations between parent anxiety, decision-making preferences, personal variables (gender, age, education, socioeconomic, occupational status), cancer characteristics (type, stage, time since diagnosis), existing support system, and trust in the medical staff. Sixty-nine parents of children with cancer during the first year after diagnosis were recruited to the study during hospitalization in a large medical center. Anxiety was measured by the State-Trait Anxiety inventory, decision-making preferences were assessed by the Control Preferences Scales for Pediatrics, support system and trust were measured by questionnaires developed for the present study. Parents’ anxiety level was significantly higher than the general population, especially for state anxiety. Higher socioeconomic status and greater extent of employment of the spouse related to higher levels of state anxiety. Anxiety did not relate to any of the cancer properties, nor to the amount of support the parents had or their trust in the medical staff. Parents’ level of education positively related with willingness to take part in decision-making, as well as with trust in the medical staff. The results emphasize the importance of trust in and the support of the medical and psychosocial staff and the need to be attuned to different parents’ needs to increase this trust.

This study examines personal and environmental variables impacting parental anxiety and decision-making.

Parents displayed notably elevated anxiety levels, particularly in terms of state anxiety, compared to the general population.

High socioeconomic status and greater spousal employment correlated with heightened state anxiety.

Parents’ educational attainment positively influenced their willingness to participate in decision-making and trust in medical professionals.

Results emphasize the importance of trust in and support of medical and psychosocial staff and being attuned to different parents’ needs to increase this trust.

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Khoury, S.M., Egozi, S. Anxiety and Decision-making among Parents Coping with Childhood Cancer during the First Year of Treatment. J Child Fam Stud 33 , 898–907 (2024). https://doi.org/10.1007/s10826-023-02686-x

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How to Talk to Kids When a Parent Has Cancer

T he U.S. is expected to hit a bleak milestone this year: For the first time, more than 2 million people will be diagnosed with cancer. More than 600,000 will die, according to projections from the American Cancer Society.

Yet when you consider how many people are affected by a single diagnosis, those numbers balloon. As people with cancer grapple with fears about their health, they often describe being equally anxious about how their news will affect their family. When Catherine, Princess of Wales, revealed on March 22 that she was being treated for cancer , she emphasized that she and her husband had "taken time to explain everything” to their three young children “in a way that is appropriate for them.”

Whatever your treatment might entail, it’s helpful to know how to discuss your prognosis with your loved ones so you can prepare them for the road ahead, as variable and unknown as the future may be. That’s especially true with children, who are often more intuitive than you may realize. 

“Kids are incredibly perceptive on picking up that something is off,” says Dr. Amishi Y. Shah, a genitourinary medical oncologist and associate professor at the University of Texas MD Anderson Cancer Center in Houston. “In general, being transparent about what’s going on with kids is a good policy.”

Of course, each family will talk about a cancer diagnosis with children differently. “There’s not necessarily a one-size-fits-all [approach],” says Amanda L. Thompson, chief of pediatric psychology and director of pediatric programs at Life with Cancer, a northern Virginia nonprofit providing support and education for people affected by cancer. “What you’re going to disclose is going to depend on the age of your child, their maturity, their own experience with or exposure to illness within the family or close friends, and more.” 

Here, cancer experts and mental health professionals share tips for approaching this conversation with care and compassion.

Read More: Kate Middleton Had to Tell Her Kids About Her Cancer Diagnosis. These Parents Know What That’s Like

This probably isn’t the best time for an off-the-cuff, improvised conversation, notes Shannon Coon, children’s program coordinator at the cancer support organization CancerCare. “Write down what you want to say before the conversation happens, and practice prior,” she says. That might make it easier to speak in a calm and reassuring voice when the time comes, she says.

Think about who you might want to have with you, as well, Coon adds: Do you want to speak with your children individually? Do you want your partner to be there? Should any other adults in their lives be present?

Create a welcoming environment for the conversation

Choose a calm, safe space and time to bring up your diagnosis with childrens. Make sure you have plenty of time to answer questions without having to rush off to another part of your day, says Thompson.

Picking your moment counts in other ways too. It might help to identify when your family already comes together in a way that feels “connected, comfortable, and normal,” says Max McMahon, a licensed independent clinical social worker at the Lank Center for Genitourinary Oncology at Dana-Farber Cancer Institute in Boston. “Is the dinner table when good conversations happen? Is it when you go out for bagels on Saturday mornings? When do your kids seem to want to talk about things or process their day?” he asks.

Whatever the setting, your goal should be to welcome discussion. “We’re creating an environment where it’s OK to talk about the hard things out in the open,” Thompson says.

Stick to age-appropriate terminology

Tailor the language you use based on the age of the child you’re talking to. For a young child, that might look like: “‘Mommy is sick. She has something called cancer. The doctors are doing everything in their power,’” Coon says. You might even point to the sides of your back and explain the cancer is in your kidneys.

Older children will be able to understand more, so the conversation may be more detailed, but they’re also in a different emotional space. “I’ve found the most difficult [scenario] is when the kids are teenagers,” says Dr. Toni K. Choueiri, director of the Lank Center at Dana-Farber. “They’re going through a lot of changes, and now you add to it.”

Use concrete language

It can be tempting to gloss over unnerving topics, but using the word “cancer” can actually help defuse the situation, Thompson says. “Harry Potter said ‘Voldemort.’ He gave the big bad villain his name to take away some of his power. We have to use that word matter-of-factly. It is important for children to know it’s something they’re going to hear.”

Similarly, it’s helpful for children to hear clear language about death, “even though it is incredibly difficult … especially if you’re the parent who is ill and facing your own mortality,” she adds.

That doesn’t mean you have to state simply, “I’m dying,” McMahon says. You might say something like, “This is a serious, advanced disease, and I’m getting treatment for it, [but] this disease can’t be cured, and I will die from it,’” he says.

Using euphemisms or otherwise prettifying language can lead to children interpreting things too literally. “Sometimes children think ‘heaven’ is a place they can visit,” Coon says, or that they can go find a loved one who has been “lost,” Thompson adds.

Discuss visible physical changes

Immunotherapy and targeted drug therapy for cancer can cause side effects like joint and abdominal pain, diarrhea, loss of appetite, and fatigue, all of which children might notice. And if they do, it’s better to be upfront about it. “Otherwise, they’re wondering in silence,” McMahon says.

Some changes will be more obvious than others. For example, Choueiri says, if you’re dealing with diarrhea and your home has only one bathroom, it would be nearly impossible to hide the fact that you’re using it every hour.

But even if side-effects are more nuanced—maybe you’re walking more tenderly because you’re in pain, or you’re losing weight because you’re not hungry—embrace opportunities to explain where you can. You might try: “‘Dad is in pain. Do you want to know what’s happening inside Dad’s body?’” McMahon advises. Some parents worry this will create more anxiety for a child, “but kids often have anxiety about what they don’t know, so information is helpful for most children.”

Read More: Kate Middleton Is Receiving Preventative Chemotherapy. Here's What That Is

Explain how their lives may change

Consistency generally makes children feel secure, and cancer can certainly disrupt your schedule. Aim to explain to children what you expect to shift in your routine. “They’re going to want to know, ‘What does this mean for my family and what we do? Does this mean someone else picks me up from school? Are we still going on the trip we take every year?’” Shah says.

Reassure kids that even if someone else will handle school pick-up, their needs will be met and they’ll still be cared for and loved. Consider sharing your treatment calendar with older children, so they can anticipate some of those changes on a weekly or monthly basis.

Answer questions honestly

After you’ve disclosed your diagnosis for the first time, lean on a child’s curiosity to shape your ongoing conversations. Answer questions as they come up, then pause for a moment to see what other questions arise (if any). Kids will likely come up with questions about a parent’s cancer that you don’t know the answers to. “The reality is, we probably won’t have all the answers. Often our physicians don’t even have all the answers,” Thompson says.

In those cases, it’s OK to tell a child you don’t know. “Let them know that when you do know, you’ll get back to them as soon as possible,” Coon says. You can show them you mean it by keeping a running list of unanswered questions and bringing it to your next visit with your oncologist.

Just as you’ll need more than one visit with your oncologist over the course of treatment, you’ll likely need more than one conversation with a child to fully discuss their feelings about your prognosis. Touch base with specific questions that welcome their curiosity rather than broad questions like asking how they’re doing, suggests the American Cancer Society. You might start with a question like, “‘What changes have you noticed with Dad lately?’” Choueiri suggests, or “‘You’ve noticed Mom has had to go to the hospital more. Do you have any questions about that?’” McMahon says.

Older children can take even more ownership in shaping these conversations. “I often recommend asking how they want to be updated along the way,” Thompson says. “Do they want to know the details? Do they want to talk about it in the morning or the evening? What would be most helpful for them?”

Lean on the services meant to help

Your medical team can likely connect you with support services at your treatment center to assist you in navigating these difficult conversations. You might have oncology social workers, nurse navigators, and other experienced staff members available to you and your children. “It’s our job to guide you to the resources that can help. You don’t have to do it alone,” Shah says.

That’s especially true if children start exhibiting any signs that they need more support than you’re equipped to give them, such as experiencing changes in sleeping or eating patterns, social withdrawal, fighting with their siblings or friends more often, or more frequent bedwetting.

Organizations like the American Cancer Society have information and support groups for parents and caregivers. Nonprofits like CancerCare offer children’s programs free of charge. And there are even Facebook groups for people with specific types of cancer where you can find comfort in knowing you’re not alone.

Talking about a parent’s cancer with children is never easy, but it’s helpful for your kids and your relationship. “In general, know it’s going to be difficult and emotional in the moment,” Coon says, “but it’s so important to have open and honest conversations throughout the cancer journey.”

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Just Like Kate Middleton, I, Too Had To Have a Very Tough Conversation With My Kid About Cancer

One mom shares how she and her son are navigating her cancer diagnosis in response to the news of Catherine, Princess of Wales. Plus, experts weigh in.

GettyImages/fotostorm

The moments after a cancer diagnosis are filled with a whirlwind of emotions: fear, despair, and anxiety, to name a few. But beyond the immediate worries about your own destiny, the most pressing concern for parents with young children quickly becomes their future.

What will happen to them if I don't beat this? And even if I beat it this time, will it come back? How will their childhood be impacted as I go through debilitating treatments? And what's the best way to talk to them about what's going on, without scaring them? 

Even while coping with a cancer diagnosis , parents still worry deeply about maintaining some sense of normalcy for their children. 

I know because I’ve been there. So when Catherine, Princess of Wales, announced her cancer diagnosis in late March 2024, it brought a shiver down my spine as I saw her express similar concerns. In an Instagram video , she stated she and husband, William, Prince of Wales, have been trying to manage the news privately for their three children–George, 10, Charlotte, 8, and Louis, 5. 

“As you can imagine, this has taken time. It has taken me time to recover from major surgery in order to start my treatment,” she said, referencing the abdominal surgery she underwent before beginning preventative chemotherapy. “But, most importantly, it has taken us time to explain everything to George, Charlotte, and Louis in a way that's appropriate for them and to reassure them that I'm going to be OK.” 

Her cancer diagnosis brought her life story—one of a princess who did not seem burdened by the same everyday worries many of the rest of us have—crashing back to Earth in a way I would never have hoped. Not for her, or her young children.

Navigating My Cancer Diagnosis as a Parent

In August 2023, after receiving my second cancer diagnosis of the past decade, I found myself awash in all of those questions and emotions once again. As a single mother to a now 11-year-old son, fighting cancer terrifies me because my greatest wish is to be here to raise Aidan and witness the beauty of his life journey. 

The first time I was diagnosed with cancer, Aidan was just 2 years old. It was a blessing that he didn't understand why Mommy suddenly lost all of her hair or spent many days and nights sick on the bathroom floor. He was also too young to notice when I was away in the hospital for long periods of time. But now, as a pre-teen, he understands everything.

That reality adds another deeply complex and emotional dimension to the journey cancer patients must travel. Watching a parent fight to survive such an insidious disease is an enormous weight for a child to carry on their shoulders—not to mention in their hearts and minds.

Not long after I explained to my son that my cancer had come back, and that I would need surgery and radiation again, I began to witness this reality in a myriad of heartbreaking ways.

Sometimes, my son would put his head on the pillow at night and cry. He would ask me quietly in the darkness, "What happens if something happens to you Mom? Who will take care of me?" 

Before long, he began experiencing trouble sleeping because of the "bad thoughts" he was having. When asked, Aidan didn't want to share the details of those thoughts with me because he worried that doing so would upset or scare me. But I knew what those thoughts were.

And during his waking hours, he developed separation anxiety . If I was away at an appointment or running an errand that took longer than expected, he would sometimes greet me as I walked in the front door with a mixture of panic and weepiness, worried over where I'd been and whether I was OK.

Eventually, I found a mental health counselor for Aidan. It was someone he could talk to about all of his worries and fears and help him navigate and process the big emotions weighing on his soul. That is important, experts say.

"Parents should not hesitate to seek support from friends, family members, or mental health professionals if they're struggling to support their children through their health crisis," says Pria Alpern, PhD, a licensed clinical psychologist specializing in trauma and loss, and founder of the New York-based Center Psychology Group. 

Having open communication with your children is something else experts recommend.

How Do You Explain a Cancer Diagnosis to a Child?

Sharing news of a cancer diagnosis is a difficult moment for any parent. Wisconsin resident Elizabeth Soar, a 58-year-old cancer survivor, describes it as "the single hardest thing I've ever had to do."

Soar's two daughters were 4 and 7 years old when she was diagnosed with squamous cell carcinoma. Luckily, they live near family, and Soar asked her sister and niece to be present when she broke the news. 

"My daughters are very close to my sister and niece, so the three of us sat my girls down and talked to them," explains Soar. "This approach helped assure the girls that they would never be alone, even when Mommy wasn't there."

Speaking with children about what's going on is a critical first step after a parent has been diagnosed with cancer. But what are other good ways to do that?

Be age-appropriate and honest

Experts suggest speaking to children with age-appropriate transparency. 

This may involve providing repeated explanations from caregivers and offering ample opportunities to ask questions as children make sense of the situation, explains Dr. Alpern. It’s also important for parents to exercise patience with children as they absorb such news, and provide ongoing support and reassurance during conversations. 

For younger children, ages 3-7, parents should avoid going into extensive, unnecessary detail. At the same time however, it is critical that adults provide enough information to ensure that the children are not worried a parent is withholding facts, which can greatly increase anxiety, says Leslie Rosenberg , a senior behavioral health counselor at Northwell Health.

"This can be a very delicate balance and depends somewhat on knowing your child’s own needs and limits," says Rosenberg.

Teens are more likely to understand the seriousness of cancer and may associate it with the worst examples they have heard, making it important for parents to highlight that many types of cancer are completely treatable and patients often make a full recovery. 

Most important in this age group is being honest and direct, as harm can be done in trying to protect kids by sparing them the truth, says Rosenberg.  

Wisconsin mom Soar agrees that honesty and transparency are essential as families navigate cancer journeys with young children. "Kids understand so much more than we give them credit for and what they fear most is the unknown," she says. “Give them information in ways they can process, research together when you can't, or tell them you'll find out for them and do it."

Soar made two promises to her daughters that first day she told them the news: They would never be kept in the dark about what was going on. And that they would never be the last to know anything.

Remember, if your child is able to access and search on the internet, they might be able to encounter information by themselves.

“They might be tempted to search for information on their own, especially when sensing that they may not be being given the full story from their grown-ups," continues Rosenberg. "If there are blanks, children tend to fill them in with the worst case scenario, so we always want to avoid major holes in the explanation."

Elizabeth Soar, mom and cancer survivor

Kids understand so much more than we give them credit for and what they fear most is the unknown. Give them information in ways they can process, research together when you can't, or tell them you'll find out for them and do it.

It’s OK to use the word cancer

Jillian Amodio , a licensed social worker at Waypoint Wellness Center in Maryland who specializes in providing support for families that are navigating challenges, says that during these talks (and subsequent ongoing communications), parents should not avoid using the word cancer, even though it may be a scary word. 

"This avoids confusion and ensures the child that, even when the truth is hard, they will always be kept informed,” says Amodio. 

While cancer is a big, frightening word, the fear of the unknown or feeling like something is being hidden is far scarier and more confusing for children, adds Amodio. 

There is no age where using the word cancer would be inappropriate, according to Amodio. Children are perceptive and they thrive on feeling like they're included and valued. And knowing that they can trust their adults to tell them what's going on in their lives can help them feel secure.

Using vague terms like “Mommy is sick,” on the other hand, might seem more kid-appropriate, but the problem is that “sick” can mean so many things.

"Sick can be an ear infection , a common cold, strep throat ," explains Amodio. "This can breed more confusion, especially because if a parent is very sick, such as in the case of cancer, and it becomes evident to the child that the illness is severe, vague terminology can turn into children being scared of small illnesses turning into big deals, as well."

Prepare them about treatment side effects

Another part of that open communication can include speaking with children about what side effects can occur from cancer treatment.

"It's good to prepare them for the possible side effects of chemotherapy that they may witness," explains Rosenberg. "Explain that 'Mom might not have a lot of energy, she might throw up, she might lose her hair—and that's all expected and part of the medicine that's helping her get better.'"

Focus on optimism 

Rosenberg also suggests that parents lean into the optimism of the situation. In her video, Catherine, Princess of Wales, said she was taking this approach with her children. “As I’ve said to them, I am well and getting stronger every day by focusing on the things that will help me heal in my mind, body, and spirit,” she shared. 

Equally important, says Rosenberg, is "noting that it's OK to feel sad or scared and that doesn't mean something terrible is going to happen.”

What Comes Next

As an adult, I was able, to some degree, to compartmentalize my recent health crisis in order to push forward as I needed to. I had a treatment plan in place that I could focus on, and would bury myself in work during the day so as not to think big thoughts.

But young children aren't necessarily equipped with a toolbox of coping mechanisms. 

"A parent's serious health diagnosis like cancer can cause a tremendous amount of stress in young children," says Dr. Alpern. 

Research shows children can experience anxiety, confusion, rumination, worry, and intrusive thoughts after learning a parent is diagnosed with cancer. But the research also finds children want to be informed and supported by their parents.

In the days and weeks after that initial talk with your children, maintaining routines can be critical to help promote a sense of normalcy and stability in the household. "Keep regular routines for meals, bedtime, and activities as much as possible," says Dr. Alpern.

Kids do best amid the steady and the predictable. So maintaining these, as much as is possible, will go a long way to calming fears.

It's also important to remember that emotions can pop up at any time, even long after that initial discussion about a parent's diagnosis.

"It absolutely takes time for children to understand the news and [emotions] will come in waves," says Amodio. "There will be days when they seem to be handling the news well and days where they will need extra support and reassurance." 

It can also be helpful to notify a child’s school or teachers about what’s going on, if you feel comfortable. This allows staff to understand why a child may be withdrawn or acting out of character. The school may also have counselors to help your child navigate their feelings too.

Jillian Amodio, licensed social worker

There will be days when they seem to be handling the news well and days where they will need extra support and reassurance.

Life After a Parent's Cancer Diagnosis

There is life before cancer and life after cancer. And they are very different. Life after a cancer diagnosis can feel more fragile and less carefree. For some, it's also more purpose driven and filled with a clear focus on what really matters. 

For cancer survivor Allie Bertocchini and her children, that is very much the case. At 41, Bertocchini was diagnosed with breast cancer. Her three sons were 7, 1, and 13, at the time. Each of her children initially handled the news differently: Her oldest was mostly quiet, while her little one talked to everyone who would listen about what his mom was dealing with, including the check-out lady at the local Trader Joe's, Bertocchini says with a laugh.

Bertocchini's battle with cancer began in 2019, and she has since completed treatment. But the experience has forever changed both her and her family. Raw emotions or memories still rear their head now and then. "As traumatic as it was for me, it was a trauma for them as well," says Bertocchini. "Sometimes, my son Will, who was 7 at the time and is 12 now, will kind of remember things and ask me about them."

"This became part of my family's story and we have gotten further down the road, my kids have all evolved in different ways," she continues. "But it's a part of who they are. There was life before Mom had cancer and life after Mom had cancer.”

Life after Mom's cancer, for Bertocchini's family, means spending more time together, prioritizing family, and valuing that time more deeply, while being filled with gratitude.

The same is very much true in my household. Every day I wake up and put my feet on the floor and express gratitude for another day on this planet with my son. I say it out loud. And when I wake Aidan, I say it so he can hear it as well: I am grateful for another day with you.

I began doing this at the advice of a counselor who told me that fear and gratitude cannot coexist in your mind. So, a daily gratitude practice has become another way my family works to navigate our new normal. I do it for myself. And to hopefully pass these skills on to my son, so he can use them long after I'm gone—whenever that happens to be. 

Side Effects of Cancer Treatment . National Cancer Institute . 2024.

The Psychosocial Effect of Parental Cancer: Qualitative Interviews with Patients’ Dependent Children . Children (Basel) . 2023.

Wonders & Worries: evaluation of a child centered psychosocial intervention for families who have a parent/primary caregiver with cancer . Psychooncology . 2017.

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Children and young adults with parents with cancer: a population-based study

1 Cancer Registry of Norway, Oslo, Norway

Gjøril B Aas

2 Oslo University Hospital, Oslo, Norway

3 University of Oslo, Oslo, Norway

Video abstract

Today many people are choosing to have children later in life. Additionally, the use of sophisticated diagnostic tools and screening modalities has increased over recent years. Because of these factors, cancer is being diagnosed more frequently during the child-rearing years. Sociodemographic and cancer-related information on families and minor (0–18 years) and young adult (YA) (19–25 years) children experiencing parental cancer is scarce, but this information is vital for healthcare initiatives aimed toward those potentially adversely affected. Therefore, the aim of this study was to describe features of families and minor and YA children affected by parental cancer in a nationwide population.

Complete Norwegian birth cohort data were obtained from national registries. Descriptive prevalence and incidence statistics were collected for parents and minor and YA children. Logistic regression models were used to assess factors likely to influence parental death.

Every year around 0.3% of all families with children under the age of 18 years encounter parental cancer, and 3.1% of minors and 8.4% of YAs have a parent who has been diagnosed with cancer. This study found skin, breast, testicular, and colorectal cancers were the most common forms of cancer diagnosed. The sociodemographic features of those affected were fairly similar to those of the general population. One in five children experienced parental death from cancer; parental death was more often paternal than maternal and was most common in parents diagnosed with leukemia or brain, colorectal, and lung tumors. Deaths are uncommon among parents without cancer.

Adequate assistance for minor and YA children affected by parental cancer requires knowledge of their number and characteristics. Parental cancer is more common than previously suggested: the annual incidence of parental cancer for children under 18 years of age is 0.3%, whereas approximately 4% of children aged 0–25 years have or have had parents diagnosed with cancer, corresponding to a population prevalence of 1.4%. Around 20% of these children experience parental death, and surveys of live respondents should account for this.

Introduction

Cancer survivors may face psychological, physical, social, and economic challenges as a consequence of their illness or treatment. 1 About one-third of cancer patients are diagnosed at an age when they may possibly be caring for children – minor (0–18 years) and/or young adult (YA) (19–25 years) children 2 – and this means entire families can be affected by cancer. 3 , 4 Children of parents affected by cancer are at risk for emotional and behavioral problems, although the majority cope well and are unlikely to develop such problems. 5 The child’s age, their stage of psychological development at the time of diagnosis and disease, and family characteristics modify the psychological burden of a parent’s cancer upon the child. 6 Still, up to 25% of children experiencing severe parental illness will experience lowered and/or anxious mood, sleep problems, poor concentration, or difficulties at school. 7 In worst-case scenarios, severe parental illness may cause profound trauma with consequences for later psychosocial functioning.

Consequences of parental cancer have been shown to vary across cancer disease characteristics and by the role, age, and gender of the diagnosed parent. 5 , 6 , 8 – 10 Reported discrepancies likely reflect the diversity of families that encounter parental cancer: the economic situation, employment status, and marital status of parents, as well as the number of children, place of residence, type of cancer, and prognosis, are all factors likely to mediate the impact of parental cancer upon their offspring. 5 , 11 , 12 The impact has been found to further differ depending on whether the respondent is the child or the parent in the situation. 9 , 13 Finally, observed differences may in part be a consequence of suboptimal reliability and validity of the instruments available to assess children’s coping abilities and needs. 5 , 11 , 12 , 14

In recent years, communication challenges within families and the provision of support programs for involved children have come under increased focus. 7 Still, many families’ needs are frequently unmet, and the effort to address the psychosocial aspects of living with parental cancer is recognized as being in its infancy. 15 As a first step, an assessment of the number and characteristics of affected children is important. Weaver et al 16 recently performed an assessment of these factors in the United States, using self-reported survey data with a response rate of around 70%. They used population weights to estimate that there are about 1.6 million cancer survivors residing with a total of about 2.9 million children under the age of 18 years in the United States today. 16 As Weaver et al 16 indicated, these numbers were estimated based upon self-reported data from one region only and the study lacked objective data, which may infer an underestimation of affected persons. Additionally, cancer types with short survival times were underrepresented and the study did not include children over 18 years of age. Estimates of the number of children experiencing parental death from cancer were not available, and calculations of incident cases, relevant for the shaping and development of services, were not performed. Therefore, Weaver et al 16 requested complementary data to confirm their findings, as an account of the children and families affected by parental cancer is important to guide health care services assisting those potentially adversely affected. With this as a background, the present authors have summarized registry information on families and minor and YA children affected by parental cancer and parental death from cancer at a national level, in total as well as on an annual basis, in Norway.

Cancer patients and their children were identified through the unique eleven-digit personal identification number assigned to all inhabitants of Norway from 1960 onward. The Norwegian National Population Register provided information on date of birth, date of death or migration, dates of changes in marital status, and dates of birth of all children. Information regarding the education level of the parents was obtained from the Norwegian Registry of Education, and the Norwegian Directorate of Taxes provided information on their employment and yearly gross labor incomes. The Cancer Registry of Norway has registered all cancer cases nationwide since 1953. Mandatory reporting from clinicians and pathologists and mandatory use of death certificates ensures complete and excellent-quality data. 17 The Cause of Death Registry provided cause of death data. Descriptive prevalence and incidence statistics were collated, and factors likely to influence parental death were assessed through logistic regression models.

Norway’s population was calculated at 4.7 million as of January 1, 2008. 18 Around 32% of the population aged between 17 and 70 years had at least one child under the age of 18 years, and 30% of the population aged between 35 and 70 years had at least one YA child (19–25 years of age). Persons with a history of cancer made up 4.3% and 3.3% of the female and male population, respectively. Of these, 80% were parents, but the majority of their children were older than the cut-off limit of 25 years of age. The present study included all persons 70 years or younger with children under the age of 26 years as of January 1, 2008; children were divided into two subgroups: minors and YAs. Next, two baseline prevalence cohorts were established: one comprised all minors in Norway as of January 1, 2008, and the other included all YAs. Prevalence analyses of sociodemographic characteristics (eg, age, gender, marital status, number of children, education level, and income) of parents and minor and YA children in families with and without parental cancer were undertaken, and parental disease (eg, cancer type, stage of cancer at diagnosis, and duration of illness) and death features were described in detail for the minor and YA children affected by parental cancer ( Tables 1 – 4 ). Logistic regression models were used to assess factors likely to influence parental death. From the two baseline prevalence cohorts, 2007 data on the incidence of parental cancer diagnoses and the number of minor and YA children affected and not affected, as well as sociodemographic characteristics of parents and minor and YA children, were extracted to obtain estimates of the annual number and percentage of children affected by parental cancer ( Table 5 ). All statistical analyses were performed using SAS software (v 9.2; SAS Institute Inc, Cary, NC). The statistical significance level was set at 5%.

Prevalence data on Norwegian children with parents with cancer: common parental cancer diagnoses, stage of cancer at diagnosis, and the age of the child at diagnosis, as of January 2008

Abbreviations: ICD-10, International Classification of Diseases, 10th edition; N/A, not applicable; y, years; YA, young adult.

Estimates from logistic regression models of characteristics impacting the likelihood of parental death from cancer among children with parents with cancer

Abbreviations: CI, confidence interval; N/A, not applicable; OR, odds ratio; SES, socioeconomic status; y, years; YA, young adult.

Incident characteristics of children with parents diagnosed with cancer (2007)

Abbreviations: N/A, not applicable; y, years; YA, young adult.

Scope of problem from a population perspective

In 2007 a total of 84,202 women aged between 17 and 70 years had or had previously had cancer. Of these women, 11,374 had 18,642 children aged 18 years or younger. The total for men aged between 17 and 70 years was 67,554, with 9469 of these men having 16,035 children aged 18 years or younger. Similarly, 13,450 women with cancer were parents of 17,623 YA children, whereas 10,568 men with cancer were parents of 13,969 YA children. The total number of minors in Norway with one or two parents with a history of cancer as of January 1, 2008, was thus 34,250, representing 3.1% of minors in Norway as of this date. The corresponding number of YAs was 30,796, representing 8.4% of YAs as of January 1, 2008. The total number of children aged between 0 and 25 years with a parent with a history of cancer was 65,046, corresponding to a population prevalence of 1.4%.

Altogether, 2075 families with 3481 children aged 18 years or younger experienced having a mother (56%) and/or a father (44%) diagnosed with cancer during 2007. This represents 0.3% of all families with minor children at one point in time, and is thus an estimate of the annual number of families affected, assuming stable birth and cancer incidence rates in the relevant age groups. The median age of the minor children was 8 years. A total of 2272 families with 2989 YA children were affected by parental cancer during 2007.

The number of minors who experienced parental death from cancer during 2007 was 665, which corresponds to an annual percentage of 1.9%. The percentage was somewhat higher for fathers than for mothers (2.0% versus 1.8%). The number of YAs who experienced parental death from cancer during 2007 was 805, corresponding to an overall percentage of 2.5% (3.1% for fathers versus 2.1% for mothers).

Impact on minors in Norway with a parent once diagnosed with cancer

Among the minors with a parent with (or with a history of) cancer in Norway, 54% had (or had previously had) a mother diagnosed with cancer and 47% had (or had previously had) a father diagnosed with cancer. A total of 33% of the minors with fathers with cancer and 23% of the minors with mothers with cancer were not yet born at the time of diagnosis ( Table 1 ). The most common cancers among these parents were lymphomas and skin, brain, testicular, and breast cancers. With the exception of brain tumors, the prognosis is generally good for these cancer forms. Nevertheless, a total of 4.8% of these children experienced parental death from cancer, although this percentage is low compared with the children who had been born before the diagnosis and had lost their parent to cancer.

The remaining 67% and 77% of children were born either at (4%) or before the time of their parent’s cancer diagnosis ( Table 1 ). The mean age of the minor children as of January 2008 was 12 years: 11 years if their father had cancer and 13 years if their mother had cancer. Their gender distribution was in line with the overall gender distribution in the population. More than half of the minors in Norway with a parent once diagnosed with cancer also had a parent diagnosed more than 5 years earlier. The most common maternal diagnoses experienced by minors were breast (27%), skin (17%), and cervical (13%) cancer, whereas the most common paternal diagnoses were testicular (25%), skin (15%), and colorectal (11%) cancer. The majority of parents were diagnosed with localized cancers.

One in seven minors with a parent once diagnosed with cancer had experienced parental death from cancer, whereas parental death is uncommon in the general population, being experienced by only about one in 300–400 ( Table 2 ). Parental death was more common when fathers had cancer, and the most lethal diagnoses among fathers were lung, colorectal, and brain tumors ( Tables 2 – 4 ). Among mothers, the most lethal diagnoses were lung, colorectal, soft tissue, and breast cancer. The highest death risks were observed for parents diagnosed with metastatic cancer. Parents of 427 minors (1.2%) were diagnosed with more than one cancer form, corresponding to around 4.5% of mothers and 3.5% of fathers with cancer, and their risk of death was slightly elevated ( Table 3 ).

Sociodemographic parental prevalence characteristics (as of January 2008) for children with and children without parents with cancer

Abbreviations: GP, general population; N/A, not applicable; y, years; YA, young adult.

Distribution of children with parents with cancer having experienced parental cancer death by January 2008, by parental cancer site and stage of cancer at diagnosis

Table 2 displays parental sociodemographic characteristics for minor and YA children with and without parents with cancer. The age distribution of the fathers with cancer spanned 20–63 years as of January 2008 (median 43.5 years). The age distribution of the mothers spanned 18–62 years (median 41.5 years). On average, parents with cancer were older than parents in the general population. A total of 31% of the parents had an education level no higher than a high school degree, but there was no difference in level of education between parents with and parents without cancer. Around 5.4% of the minors with mothers with cancer lived in households with annual incomes below the poverty margin defined by the Organization for Economic Cooperation and Development. 19 The corresponding percentage for minors with fathers with cancer was 3.9%. The household income distribution for minor children did not change significantly if their mother had cancer or not, whereas minor children of fathers with cancer generally appeared to live in households with income levels below that of the general cancer-free population. The vast majority of minors had parents who were married (only 17% had parents who were separated, divorced, or widowed). Marriage was less common in the general cancer-free population. The minors with parents with a history of cancer had from zero to ten siblings, but most commonly one or two; the average number of siblings was 1.3. The percentage of children with no siblings was lower in the cancer cohort than in the general population.

Impact on YA children in Norway with a parent once diagnosed with cancer

Cancer is a disease that becomes more common with increasing age, and around 93% of the YA children in this study were born before the time of the diagnosis of parental cancer. Around half had parents diagnosed within the last 5 years ( Table 2 ). Maternal cancer was more prevalent than paternal cancer. The most common diagnoses in mothers were breast, cervical, and skin cancer, whereas diagnoses of colorectal, skin, prostate, and testicular cancer were frequent among fathers ( Table 1 ). Nearly half the parents had localized cancers at the time of diagnosis, but the percentage of patients where the stage was unknown was clearly higher for fathers than mothers. One in four YAs with a parent once diagnosed with cancer had experienced parental death from cancer, whereas parental death is experienced by only one in 80 in the general population ( Table 4 ). Death from cancer was more common in fathers than in mothers, and the most lethal diagnoses were lung and colorectal cancer. As expected, the highest probabilities of death were observed for parents diagnosed with metastatic cancer ( Tables 3 and ​ and4). 4 ). A total of 796 YAs (2.6%) had parents diagnosed with two or more cancer forms (5.8% of mothers and 4.8% of fathers), and the risk of death for these parents was elevated.

Table 2 displays parental sociodemographic characteristics for YAs with and without parents with cancer. The age distribution of the fathers with cancer spanned 21–70 years of age as of January 2008 (median 52.8 years), whereas for mothers the age range spanned 20–70 years (median 49.3 years). Parents with a history of cancer were significantly older, on average, than parents without cancer. Around 43% of the parents had an education level no higher than a high school degree – this is comparable with general population figures. However, a higher percentage of parents with cancer had education levels corresponding to a bachelor degree or higher. On average, earnings were somewhat lower for parents (regardless of gender) with cancer. The majority of parents with cancer were married (71%), and this figure is comparable with that for parents without cancer. The number of siblings for YA children ranged from zero to twelve, but they most commonly had one or two; the average number of siblings was 1.1. The gender distribution of YAs was fairly equal, and their median age as of January 2008 was 21 years.

Annual impact of parental cancer on minor and YA children

Altogether, 2075 families with 3481 children aged 18 years or younger experienced having the mother (56%) and/or the father (44%) diagnosed with cancer during 2007. The most common parental cancer diagnoses were breast, prostate, colorectal, skin, cervical, and testicular cancer, and the majority of cancers were localized ( Table 5 ). A total of 7% of minors experienced maternal cancer diagnosis and maternal death from cancer during the same year, whereas the total for the children of fathers with cancer was 13%. Altogether, 2272 families with 2989 YA children were affected, and the corresponding figures for cancer diagnosis and death from cancer within 1 year were 11% and 17%, respectively.

The size of the families varied, from one parent and one child through to two parents and eleven children, but the two-parent family with two to three children was the most common (60%), comparable with general population figures. Nearly 60% of the parents were married, and 20% were widowed, divorced, and/or separated adults, in line with general population estimates.

This nationwide study shows that the annual incidence of parental cancer for minors is 0.3%. At any one point in time, approximately 3% of minors and 8% of YA children have or have had parents once diagnosed with cancer, corresponding to a population prevalence of 1.4%.

Influential sociodemographic factors and existing research

The vast majority of minor and YA children have taken part in a parent’s cancer journey, and are likely influenced by and involved in their parent’s illness and treatment. 11 , 15 , 20 Around 16% of the minor and YA children had not yet been born at the time of their parent’s diagnosis. These children were less likely to be affected by parental cancer, although long-term or late effects may be present in future years; additionally, fear of recurrence may influence family life. Five percent of these children lost their parent to cancer; however, this percentage is low compared with the children who had been born before the diagnosis and had lost their parent to cancer.

The demographic and socioeconomic characteristics of parents with and parents without cancer were fairly similar with respect to marital status and number of children. This was expected, as cancer has only a modest effect on parental marriage or divorce probabilities, 21 , 22 and although the likelihood of parenthood is reduced after cancer, 23 the majority of cancer survivors have completed their childbearing by the time of diagnosis. Compared with general population figures, a higher percentage of parents with cancer had earned a bachelor’s degree or higher. This may make the children of these parents less at risk than the children of parents with other chronic diseases more closely associated with lower levels of education, as education has been shown to increase health literacy and to facilitate open dialogues. 24 – 26 An understanding of the health and welfare systems may help navigation and thus improve coping and reduce stress, benefitting the children involved. However, incomes were on average lower for parents with cancer. This may reflect the older average age of the parents with cancer and thus the probability of being retired. 27 However, it may also reflect work limitations associated with cancer. 27 , 28 Although single parents, most commonly mothers, make up only a small proportion (5%–10%) of parents in Norway, their children may be particularly vulnerable, 29 and research targeting this specific subgroup may be warranted.

Some studies report adverse consequences for children affected by parental cancer, and the children’s age and gender has been found to influence the type and degree of problems they experience. 6 , 9 , 13 However, other studies do not report significant adverse consequences for children. 3 , 30 Younger children may not fully comprehend the significance of parental cancer, and thus they may be less affected emotionally than older minors and YAs. 9 Older siblings may support one another, but they may also experience a role shift if they need to assist more with household chores and/or assist with care of the ill parent. 8 How this influences the children and parents involved is debatable, but studies report both positive and negative consequences. 5 , 8 , 11 , 12 , 31

Between one in seven and one in four minor and YA children with parents with a history of cancer experience parental death, whereas parental death is uncommon in the general population. Children experience maternal cancer more often than paternal cancer, but they are more likely to lose a father than a mother to cancer. Studies on how families and minor and YA children cope with terminal care and parental death suggest that parents tend to underestimate the adverse consequences as they are perceived by the children involved, and that open communication and maintaining “normality” are important strategies for optimizing family functioning. 32 , 33 Several studies report that the gender of the parent with cancer has implications for the psychosocial and emotional outcomes of the children involved. Most studies suggest that children respond worse to maternal than paternal cancer, 13 , 34 , 35 perhaps in line with traditional caregiver roles. However, one study reports that the consequences are worse for children of fathers with cancer – this may reflect the poorer prognosis for fathers. 6 The gender of the children involved is also reported to affect the prevalence and severity of problems reported. 5 , 11 As the gender distribution of children is fairly equal and as it is similar for parents with and parents without cancer, the authors do not discuss this further here.

The authors’ main findings on minor children of cancer survivors are in accordance with US estimates from Weaver et al, 16 but the current authors present more detailed data on stage at diagnosis and death, and information on YA children is also included. Nonetheless, some important differences are notable: around 54% of the minors who had a parent with a history of cancer had experienced maternal cancer in the current study, whereas this was observed for 79% of the children in Weaver et al’s study. 16 These differences may be explained in part by the relatively high lethality of paternal cancer, as only living parents were included in the US study. 16 Selection and/or information bias may also have affected the US survey estimates. 36 Women have been found more likely to respond to surveys and to underreport their cancer diagnosis less frequently than men. 37 , 38 Nonetheless, the observed discrepancy underscores the need to confirm survey findings by using additional data sources and the importance of undertaking studies across different cultures.

Generalizability of implications of findings

Data on the entire Norwegian population of minor and YA children as of January 2008 has been utilized, and no earlier investigation has employed such detailed material on such a large scale. The use of national registry data minimizes bias, and the accuracy of population-based estimates resulting from survey data has thus been addressed. Furthermore, the results may be of general interest, as Norwegian cancer incidence and mortality trends and general family behaviors are comparable with those of other developed countries, including the United States. 2 , 18 , 39 However, Norway is a welfare state, and cancer care is available to all, free of charge. In addition, multiple welfare benefits are endorsed to compensate for declines in earnings. This implies that comparisons of the possible influence of sociodemographic factors are more difficult cross-culturally. However, it seems likely that findings may apply to countries with similar health and welfare options (eg, Canada and other Nordic and Western European countries).

As the data for this study are linked through the children, only the individual and combined characteristics of mothers and fathers can be addressed, not the family as a system per se. Knowledge of actual household members would have improved the estimate of, for instance, the impact of marital status and earnings. It would also have facilitated a better comparison with the existing US population estimates. 16

Many of the factors useful in assessing needs and planning interventions to assist affected families have been assessed in a complete national population, and the authors have further shown that survey data may underestimate the number of children affected by parental cancer, as parental death, especially of fathers, is a relatively common phenomenon. In January 2010, a Norwegian law was implemented mandating minor children of severely ill parents be included as targets for support within the national health care system. 40 The white papers preceding the law specifically mentioned cancer as one of several illnesses covered, and Norwegian cancer care is now obliged to provide services to assess the presence of minor children, assess their needs, and initiate interventions. 41 , 42 Oncologic departments have been required to dedicate one specific health care practitioner to ensuring the presence of minor children is documented in cancer patients’ journals and that the needs of involved children are assessed. 1 This health practitioner is further obligated by law to contact social services or other relevant personnel if deemed necessary, irrespective of parental consent. 40

Around 8% of YAs have or have had a parent diagnosed with cancer, corresponding to a population prevalence of 1.4%. To the best of the authors’ knowledge, this study is the first to contribute detailed information of YA children afflicted by parental cancer. Although YAs are independent in the legal sense, many nonetheless depend on parental support – physically, psychologically, socially, and economically. 43 This dependence may alter when a parent is diagnosed with cancer, and caregiver burdens may in some cases also be reversed. 44 – 46 From a health care perspective, the needs of and follow-up required for YA children in transitional phases will perhaps be different than for minor children, and research to address this difference is warranted.

Finally, information that has not been available previously on cancer prognosis and death from cancer has now been provided. Death is the most serious and dreaded consequence of parental cancer for the minor and YA children involved, 5 , 11 and knowledge of the risk of parental death is useful when interacting with children and their parents in cases of parental cancer.

The annual incidence of parental cancer for minor children was 0.3%, whereas the prevalence of having or having had a parent with cancer was 3% among minor children and 8% among YA children, corresponding to a population prevalence of 1.4%. The most common diagnoses experienced by minor and YA children were skin, breast, testicular, and colorectal cancer; this distribution differs somewhat from the cancer distribution in the general population because of the age distribution of parents. 2 One in five minor and YA children experience parental death from cancer – lung, colorectal, and brain tumors are most lethal. The proportion of children affected by cancer remains similar regardless of whether it is the mother or the father with cancer, but children are much more likely to experience paternal than maternal death. With this as the history, surveys of live respondents likely underestimate the number of children affected by parental cancer, especially fathers.

Adequate assistance for minor and YA children affected by parental cancer requires knowledge of their number and characteristics, as well as the characteristics of their parents. In recent years, communication challenges within families and the provision of support programs for involved children have come under increased focus. 7 Nevertheless, many families’ needs are frequently unmet, and the effort to address the psychosocial aspects of living with parental cancer is recognized as being in its infancy. 15 Changes in the Norwegian Health Personnel Law in effect from January 2010 mandate health practitioner assessment of the presence of children when adults are diagnosed with cancer, assessment of the needs of involved children, and instigation of interventions to meet the needs of these children. 40 – 42 This study has provided information at a population level to aid in this work, and the knowledge gained may thus help to understand what is required for the adequate assessment of needs and the proper assistance and follow-up of potentially vulnerable children experiencing parental cancer, particularly those facing parental death.

Acknowledgment

This research was supported by a grant from the Norwegian Research Council.

The authors report no conflicts of interest in this work.

Kurt Cobain and Me: The Gen X poster child and rock legend is my Gen Z hero, too

My parents love nirvana, too. but i have my own relationship with cobain's music and persona, by gabriella ferrigine.

The boys spilled out of the locker room in a gnashing horde.

They pitched their bodies into the air and flung clumps of sweaty hair from their faces, headbanging in line with the stomping bass that had just cracked across the gym’s sound system. 

Full of flowing hormones and covered in dried sweat, the entirety of my high school gym class began to move to the music — each individual in their own way — enraptured by its energy and still thrumming with adrenaline from 2v2 basketball scrimmages. 

For a few fleeting minutes, social stratification was entirely dismantled by one rotating guitar riff. Sports jocks, guys who stuffed their bottom lip with dip in the back of class, girls who smelled like vanilla and bright artificial fruit, and reticent wallflowers, all churning together.

By the time the bell rang, prodding us toward precalc or a quiz on “The Sound and the Fury,” it did, in fact, smell like teen spirit. 

We filed out of the gym, buzzing and bedraggled. A shared ecstasy lingered, if only until the next period began. 

Experiencing that subtle, shimmering solidarity, the threading of different social subgroups together, is intrinsic to my attachment — as a member of Gen Z , not X — to Kurt Cobain, frontman of the iconic '90s grunge rock band Nirvana. 

Since the genesis of the band in 1987 — and Cobain’s subsequent, seismic fame, then tragic death by suicide — he’s functioned as something of a talismanic leader for generations of morose, angsty and disaffected fans. Some of this posthumous cultural longevity is surely due to his premature death, which preserved him in amber, devoid of a flop era and safe from cancellable offense. But that doesn't entirely explain his enduring appeal. Cobain’s emotional melancholy is something members of Gen Z — widely understood as prone to trauma-dumping on the internet and hyper-sensitivity — can find particularly relatable. 

Raised by Gen X parents like mine whose early adulthoods were largely defined by Nirvana and Cobain, his music became part of a shared, familial identity they could pass down to us. In a recent essay for The Guardian, writer Hannah Ewens opines that “Just as the Beatles defined the construct of a rock band, Nirvana redefined what a band was — both in the public consciousness and to other musicians: unpretentious, tough and sensitive, embraced by the system while threatening it.” It's not particularly rebellious to embrace your parents' definition of good music, but over time, I forged my own relationship with Kurt Cobain, distinct from theirs. 

In all honestly, I’ve always felt several standard deviations away from what feels normal (an entirely subjective term). I know this sounds moderately insufferable, but bear with me. My life has been overwhelmingly positive in so many ways. And yet, setting aside personal conflicts and a heady amalgam of ADHD and anxiety, much of it has also felt very different to me than how it’s appeared outwardly to others. I don’t have a complex, philosophical explanation for this discrepancy. I don’t think you always need one. Cobain's music gives me a language for reconciling my own contradictions. We aren't the same by any means: I've had no meteoric rise to fame, no heroin addiction. But there was still a person named Kurt before all that happened to him. 

During my first years of college, like many, I struggled with finding my sense of self. Flush with insecurities of every kind, I tried on different personalities (and some bad outfits) in an effort to, if not wholly reinvent myself, at least discover something about myself that I actually liked or felt secure about. It was a process that ultimately backfired — by trying to be someone I wasn’t, I inadvertently jettisoned some of the most fundamentally defining pieces of myself. And all the while, I was still as sullen and angsty as ever. That all changed on Christmas Day, 2018, when my parents gave me my first pair of Doc Marten boots. 

Laugh if you will, but getting my Docs was like finding my glass slipper. At nearly 6 feet tall, I’d always felt something like Cinderella’s stepsisters, trying to cram my oversized foot into a tiny, dainty, acceptably pretty and interesting shoe. I wear them most days now. Aside from being comfortable, they're equipped with a steel-toed tenacity ideal for navigating New York’s perpetually crusty streets. 

And yes, Docs were a subcultural fashion item of the ‘90s — my dad still owns the pair he wore moshing at a Nirvana show with my mom at the now-shuttered Roseland Ballroom in New York in 1993. While Cobain wore Converse for that particular performance, I’m certain he laced up his boots often too. I often find myself gravitating toward those looks: slouchy pants, oversized jackets and knitwear, the occasional grandpa cardigan. As I’ve grown older, I’ve become increasingly confident in myself and my fashion choices, aware that the old adage is true: What you wear is truly a reflection of who you are. I’m sure that’s what Cobain was trying to convey every time he opted for a skirt or floral-patterned dress for a live performance. That has always been an inspiring exemplar of unabashed confidence to me.

But carrying yourself with confidence in public doesn’t necessarily equate to comfort with — or suitability for — fame, as Cobain's conflicted relationship to the celebrity status that accompanied his artistic success showed me. Regardless of whether he sought to be an international star before it happened, the “slings and arrows” of fame that writer Michael Azerrad wrote about in part for the 2021 New Yorker essay, “My Time With Kurt Cobain,” underpinned the rocker’s mental and emotional health struggles. 

It's not particularly rebellious to embrace your parents' definition of good music, but over time, I forged my own relationship with Kurt Cobain, distinct from theirs. 

In all likelihood, I’ll never be famous, and that’s OK. It’s not exactly something I aspire toward. But the essence of Cobain’s fame has always been incredibly relatable to me. There’s something so vulnerable and real — in an attention economy that demands performance from us all — about someone trying to keep a firm foothold in two warring worlds simultaneously, straddling the ever-oscillating line of what the public sees and what it can't. (“I’m not like them, but I can pretend,” resonates.)

This tension that seems innately bound into Cobain's persona — and Nirvana more broadly — is accurately reflected in the band’s lyrics. Dark, atmospheric themes abound — anger, personal struggles, violence, real and figurative — and while the sometimes disturbing subject matter can be difficult to take, I found the messages braided into them intriguing. His lyrics reflected Cobain’s chaos and mystique, which is to say, I didn’t necessarily understand them all, especially as a kid. All I knew was — mingled with his raspy voice and the band’s splintering sounds — they made me feel at an entirely unprecedented level. And some latent part of me was drawn to that brooding sentiment.

It came as no surprise to me when I learned that he was also a Pisces. 

Whether you believe in astrological signs or find it all to be a bit hokey, I find that Cobain embodied the compassion, sensitivity and emotional profundity that have come to be associated with the symbol of two fish swimming in opposite directions. That division between fantasy and reality — a liminal space I constantly turn to — is one that Cobain ostensibly occupied just as frequently. It’s something like the Vitruvian man, constantly splayed in different directions by our thoughts and ever-shifting emotions. It’s an identity Cobain internalized so intensely that he even carried it with him into his death in April of 1994, writing in his suicide note that he was a “sad little, sensitive, unappreciative Pisces, Jesus man.”

I’ve always known that finding comfort in the music and fashion of my parents’ generation, specifically the elements of it that have since become canonical, is a byproduct of my close-knit and large immediate family. It’s an idiosyncratic, shared existence — something that makes me feel comforted and protective at once. And yet, I’m my own person. While I would be remiss to ignore the inescapability of influence, my relationship with Cobain and his work could never precisely mirror theirs. And I think that’s part of his legacy. He was able to transcend space and time so seamlessly, so acutely, that his aura — which has spoken to my mom and dad for nearly 40 years — now screams to me from a stage set in an entirely different void. 

So consider me influenced, if that’s what becoming secure in my tastes and personhood means. I won’t be running from that anytime soon. 

If you are in crisis, please call the 988 Suicide and Crisis Lifeline by dialing 988, or contact the Crisis Text Line by texting TALK to 741741.

about Nirvana

• I'm not like them, but I can pretend (Obviously, this is an essay about Kurt Cobain and Nirvana)
• Kurt Cobain's daughter marks the 30th anniversary of his death with a loving tribute
• "Nevermind" 30 years on — how Nirvana's second album tilted the world on its axis

Gabriella Ferrigine is a staff writer at Salon. Originally from the Jersey Shore, she moved to New York City in 2016 to attend Columbia University, where she received her B.A. in English and M.A. in American Studies. Formerly a staff writer at NowThis News, she has an M.A. in Magazine Journalism from NYU and was previously a news fellow at Salon.

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Prestigious cancer research institute has retracted 7 studies amid controversy over errors

Seven studies from researchers at the prestigious Dana-Farber Cancer Institute have been retracted over the last two months after a scientist blogger alleged that images used in them had been manipulated or duplicated.

The retractions are the latest development in a monthslong controversy around research at the Boston-based institute, which is a teaching affiliate of Harvard Medical School. 

The issue came to light after Sholto David, a microbiologist and volunteer science sleuth based in Wales, published a scathing post on his blog in January, alleging errors and manipulations of images across dozens of papers produced primarily by Dana-Farber researchers . The institute acknowledged errors and subsequently announced that it had requested six studies to be retracted and asked for corrections in 31 more papers. Dana-Farber also said, however, that a review process for errors had been underway before David’s post. 

Now, at least one more study has been retracted than Dana-Farber initially indicated, and David said he has discovered an additional 30 studies from authors affiliated with the institute that he believes contain errors or image manipulations and therefore deserve scrutiny.

The episode has imperiled the reputation of a major cancer research institute and raised questions about one high-profile researcher there, Kenneth Anderson, who is a senior author on six of the seven retracted studies. 

Anderson is a professor of medicine at Harvard Medical School and the director of the Jerome Lipper Multiple Myeloma Center at Dana-Farber. He did not respond to multiple emails or voicemails requesting comment. 

The retractions and new allegations add to a larger, ongoing debate in science about how to protect scientific integrity and reduce the incentives that could lead to misconduct or unintentional mistakes in research. 

The Dana-Farber Cancer Institute has moved relatively swiftly to seek retractions and corrections. 

“Dana-Farber is deeply committed to a culture of accountability and integrity, and as an academic research and clinical care organization we also prioritize transparency,” Dr. Barrett Rollins, the institute’s integrity research officer, said in a statement. “However, we are bound by federal regulations that apply to all academic medical centers funded by the National Institutes of Health among other federal agencies. Therefore, we cannot share details of internal review processes and will not comment on personnel issues.”

The retracted studies were originally published in two journals: One in the Journal of Immunology and six in Cancer Research. Six of the seven focused on multiple myeloma, a form of cancer that develops in plasma cells. Retraction notices indicate that Anderson agreed to the retractions of the papers he authored.

Elisabeth Bik, a microbiologist and longtime image sleuth, reviewed several of the papers’ retraction statements and scientific images for NBC News and said the errors were serious. 

“The ones I’m looking at all have duplicated elements in the photos, where the photo itself has been manipulated,” she said, adding that these elements were “signs of misconduct.” 

Dr.  John Chute, who directs the division of hematology and cellular therapy at Cedars-Sinai Medical Center and has contributed to studies about multiple myeloma, said the papers were produced by pioneers in the field, including Anderson. 

“These are people I admire and respect,” he said. “Those were all high-impact papers, meaning they’re highly read and highly cited. By definition, they have had a broad impact on the field.” 

Chute said he did not know the authors personally but had followed their work for a long time.

“Those investigators are some of the leading people in the field of myeloma research and they have paved the way in terms of understanding our biology of the disease,” he said. “The papers they publish lead to all kinds of additional work in that direction. People follow those leads and industry pays attention to that stuff and drug development follows.”

The retractions offer additional evidence for what some science sleuths have been saying for years: The more you look for errors or image manipulation, the more you might find, even at the top levels of science. 

Scientific images in papers are typically used to present evidence of an experiment’s results. Commonly, they show cells or mice; other types of images show key findings like western blots — a laboratory method that identifies proteins — or bands of separated DNA molecules in gels. 

Science sleuths sometimes examine these images for irregular patterns that could indicate errors, duplications or manipulations. Some artificial intelligence companies are training computers to spot these kinds of problems, as well. 

Duplicated images could be a sign of sloppy lab work or data practices. Manipulated images — in which a researcher has modified an image heavily with photo editing tools — could indicate that images have been exaggerated, enhanced or altered in an unethical way that could change how other scientists interpret a study’s findings or scientific meaning. 

Top scientists at big research institutions often run sprawling laboratories with lots of junior scientists. Critics of science research and publishing systems allege that a lack of opportunities for young scientists, limited oversight and pressure to publish splashy papers that can advance careers could incentivize misconduct. 

These critics, along with many science sleuths, allege that errors or sloppiness are too common , that research organizations and authors often ignore concerns when they’re identified, and that the path from complaint to correction is sluggish. 

“When you look at the amount of retractions and poor peer review in research today, the question is, what has happened to the quality standards we used to think existed in research?” said Nick Steneck, an emeritus professor at the University of Michigan and an expert on science integrity.

David told NBC News that he had shared some, but not all, of his concerns about additional image issues with Dana-Farber. He added that he had not identified any problems in four of the seven studies that have been retracted. 

“It’s good they’ve picked up stuff that wasn’t in the list,” he said. 

NBC News requested an updated tally of retractions and corrections, but Ellen Berlin, a spokeswoman for Dana-Farber, declined to provide a new list. She said that the numbers could shift and that the institute did not have control over the form, format or timing of corrections. 

“Any tally we give you today might be different tomorrow and will likely be different a week from now or a month from now,” Berlin said. “The point of sharing numbers with the public weeks ago was to make clear to the public that Dana-Farber had taken swift and decisive action with regard to the articles for which a Dana-Farber faculty member was primary author.” 

She added that Dana-Farber was encouraging journals to correct the scientific record as promptly as possible. 

Bik said it was unusual to see a highly regarded U.S. institution have multiple papers retracted. 

“I don’t think I’ve seen many of those,” she said. “In this case, there was a lot of public attention to it and it seems like they’re responding very quickly. It’s unusual, but how it should be.”

Evan Bush is a science reporter for NBC News. He can be reached at [email protected].

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O.J. Simpson, football legend acquitted of notorious killings, dies at 76

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Emma Bowman

O.J. Simpson, pictured in September 2008 in Las Vegas, died Wednesday, according to a statement from his family. Isaac Brekken/Getty Images hide caption

O.J. Simpson, pictured in September 2008 in Las Vegas, died Wednesday, according to a statement from his family.

The football great Orenthal James Simpson, known as O.J., who was accused and ultimately acquitted in the killings of his ex-wife and her friend, has died. Simpson was 76.

In a post on X , his family said he died on Wednesday. He "succumbed to his battle with cancer," and was surrounded by his children and grandchildren.

Simpson was a cultural icon who starred on the football field and in movies and commercials. That legacy was forever eclipsed after he made headlines in 1994 for another reason when he was accused of killing his ex-wife, Nicole Brown Simpson, and her friend Ronald Goldman. In 1995, jurors determined he was not guilty in the stabbing deaths. No one else was ever charged. Dubbed the "trial of the century," the nationally televised proceedings captivated the country with a verdict that reverberated across the U.S. with debates about police misconduct, race, celebrity and domestic abuse.

On April 10th, our father, Orenthal James Simpson, succumbed to his battle with cancer. He was surrounded by his children and grandchildren. During this time of transition, his family asks that you please respect their wishes for privacy and grace. -The Simpson Family — O.J. Simpson (@TheRealOJ32) April 11, 2024

O.J. Simpson first found fame on the football field. Once a kid who wore leg braces until age 5 after developing rickets, Simpson went on to become one of the greatest running backs of all time. He played at the University of Southern California (USC) in the late 1960s. The powerful tailback danced, dashed and dazzled on the field, propelling the Trojans to a national championship in 1967. He won the Heisman trophy, as college football's best player, in 1968.

After graduating from USC, he played 11 seasons in the NFL; nine of them with the Buffalo Bills, and two seasons with the San Francisco 49ers. Known as "The Juice," he collected four rushing titles, played in five Pro Bowls and, in 1973, became the first running back to break the 2,000-yard rushing mark.

During and after his pro career ended in 1979, he starred in TV commercials, mostly notably as a pitchman for Hertz as he rushed through airports for the rental car company. He also later appeared in several shows and movies, including The Naked Gun and the TV miniseries Roots , as producers seized on his fame and likeability.

O.J. Simpson, accompanied by his parents, his son, Jason, and Ralph Wilson, owner of the Buffalo Bills, is inducted into the Wall of Fame in Rich Stadium on Sept. 14, 1980. Ross Lewis/Getty Images hide caption

O.J. Simpson, accompanied by his parents, his son, Jason, and Ralph Wilson, owner of the Buffalo Bills, is inducted into the Wall of Fame in Rich Stadium on Sept. 14, 1980.

In 1994, the bodies of his ex-wife, Nicole Brown Simpson, and her friend, Ronald Goldman, were found stabbed outside her home in Los Angeles. Not long after, Simpson was arrested and his subsequent "low-speed" white Bronco car chase on L.A. freeways was televised nationwide; some 95 million people tuned into the chase coverage. In 1995, a criminal jury determined he was not guilty of committing the killings.

The most famous moment of the months-long trial was when a prosecutor asked OJ to try on the gloves believed to belong to the killer. In a dramatic showing, Simpson struggled to pull on the snug pair.

Defense lawyer Johnnie Cochrane seized on this, delivering the most famous line of the whole spectacle in his closing arguments: "If it doesn't fit, you must acquit."

On June 17, 1994, Los Angeles police "chased" a white Ford Bronco carrying O.J. Simpson and driven at low speed by Al Cowlings on a freeway in Los Angeles. Joseph R. Villarin/AP hide caption

On June 17, 1994, Los Angeles police "chased" a white Ford Bronco carrying O.J. Simpson and driven at low speed by Al Cowlings on a freeway in Los Angeles.

Prosecutors Marcia Clark, William Hodgman and Christopher Darden came to the trial with strong evidence linking Simpson to the killings, including DNA tests, the right hand of a pair of blood-stained gloves that were found at his home, and his history of spousal abuse.

Simpson's legal team of prominent criminal defense lawyers, including Johnnie Cochran and Alan Dershowitz, F. Lee Bailey and Robert Kardashian, successfully made the case to the jury that there was reasonable doubt. It cast the LAPD as racist and corrupt, arguing that it had tampered with forensic evidence at a shoddy crime scene.

When the mixed-race jury announced the not guilty verdict, public reaction seen in media coverage largely fell along racial lines, showing Black people celebrating and white people shocked by his acquittal.

Those TV clips didn't tell the full story, says Camille Charles, a professor of Africana Studies at the University of Pennsylvania. It wasn't that Black Americans all thought he was innocent, she says.

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O.j. simpson released from prison.

"Black people were more conflicted than was really ever shown in the media," Charles says. But, she says, "Black folks had had such a bad experience with the criminal justice system that they rooted for him as a Black man who actually had the resources to mount a proper defense."

The trial took place three years after the acquittal of four LAPD officers in the beating of Rodney King had inflamed the deep distrust among Black people and police.

But, as a wealthy celebrity who married a white woman, Simpson was "never seen as a staunch proponent of the African American community," says Darnell Hunt, a professor of sociology and African American studies at UCLA, and as a result, didn't engender overwhelming sympathy among African Americans during his trial.

Two years later, a different civil jury determined he was liable in the deaths and ordered him to pay $33 million to the families of Brown and Goldman.

Simpson continued to maintain his innocence in media interviews.

That wasn't his last tangle with legal trouble. In 2007, he led a group of men to a Las Vegas hotel room to confront some sports memorabilia dealers. Several people brought guns with them, and Simpson was later convicted of armed robbery. He served almost a decade in a Nevada prison and was released on parole in 2017 .

The public's fascination with O.J. Simpson never waned. He was the subject of numerous documentaries about the killings and his life.

• O.J. Simpson

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Prince William in ‘frightening proximity’ to ascend the throne as King Charles battles cancer: expert

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Prince William is reportedly in “frightening proximity” to ascending the British throne amid His father King Charles III’s ongoing battle with cancer.

“The almost simultaneous news of Charles’s cancer has put William and Catherine in frightening proximity to ascending the throne just when they had hoped for a span of years to parent their children out of the public eye,” journalist Tina Brown claimed in a New York Times essay published on March 25.

William and his wife, Kate Middleton — who is also battling cancer — share three kids: Prince George, 10, Princess Charlotte, 8, and Prince Louis, 5.

The former Vanity Fair editor-in-chief asserted that the idea of William becoming the reigning sovereign has spurred much stress for the couple.

“The prospect of it, I am told, is causing them intense anxiety,” she wrote.

Brown also claimed that several scandals surrounding the royal family — including Prince Harry and Meghan Markle’s estrangement from the royal family as well as Prince Andrew’s ties to convicted pedophile Jeffrey Epstein — have put William and Middleton “under unmanageable pressure.”

“Catherine is the most popular member of the royal family after William,” she wrote, adding, “The future of the monarchy hangs by a thread, and that thread is her.”

Brown furthered that William, 41, and Middleton, 42, are burdened with more responsibilities than just her health condition.

“A tidal wave of premature responsibility is crashing in her and William’s direction,” she said. “Frozen, unready and with Catherine now seriously unwell, the Prince and Princess of Wales await the awesome burden of the crown.”

Middleton announced that she was diagnosed with cancer on March 22 after mounting speculation over her whereabouts following a planned abdominal procedure in January.

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She did not disclose what kind of cancer she is battling but shared that she is seeking treatment.

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“Having William by my side is a great source of comfort and reassurance too,” she said in a video message at the time. “As is the love, support and kindness that has been shown by so many of you. It means so much to us both.”

Her cancer announcement came shortly after her father-in-law revealed his own cancer diagnosis in February.

“During The King’s  recent hospital procedure for benign prostate enlargement , a separate issue of concern was noted. Subsequent diagnostic tests have identified a form of cancer,” Buckingham Palace  announced in an official statement  at the time.

“His Majesty has today commenced a schedule of regular treatments, during which time doctors have advised him to postpone public-facing duties. Throughout this period, His Majesty will continue to undertake State business and official paperwork as usual.”

Middleton reportedly met with Charles for lunch to talk about their “common health experience” before announcing the shocking news.

Charles, 75, had just  ascended the throne in May 2023  following  the September 2022 death of his mother , Queen Elizabeth II, at the age of 96.

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