“When I was 12 my mom was diagnosed with cancer. After several years of illness and treatment, she eventually died, leaving my sister and I with my dad. I’m not sure my dad ever really talked to me about his feelings or mine and life seemed to move on. I still have a very deep sense of loss and grief. I felt so alone. As I look back, I realize how much more could have been done to help me with this, but cancer seemed to be something that should never be discussed. ”
— Adult with cancer reflecting on his experience as a child
The National Cancer Institute estimates that 24% of adults with cancer are parenting children younger than 18 years of age while about one third of women with breast cancer have children living at home. Cancer is a family disease; not only the patient but the entire family is affected, especially children and adolescents. These statistics underscore the importance of addressing the needs of parents and their children as they live with the consequences of cancer and its treatment.
Children whose parents are diagnosed with cancer are more likely to experience increases in general levels of distress and anxiety. They may experience other changes in mood as well as their self-esteem. Children whose parents are ill may manifest their distress through changes in school performance, physical complaints of pain and discomfort, as well as changes in social and interpersonal relations. Children may have a tendency to act out their distress in their behavior with others, Adolescent girls may be the most vulnerable; they are more likely than adolescent boys to experience emotional distress after a parent is diagnosed with cancer. Girls have also been found to have more anxiety when their mothers rather than their fathers are diagnosed with cancer, more so than boys who had either parent diagnosed.
The developmental age of the child is also important as we try to understand what happens when a parent is diagnosed with cancer. While the research is limited, depending on the age of the child there are differences in how anxiety and emotional distress are expressed. Preschool-aged children are more likely to experience separation anxiety, depression and disruptions in their attachments in response to changes in caretaker responsibilities. It is harder for young children to adapt when there are substantial changes in who cares for them. School aged children and adolescents are more likely to have feelings of hopelessness. They are also more likely to feel burdened by guilt and/or anger over the diagnosis as well as emotional isolation. This research helps us begin to understand some of the ways that cancer can affect children. It is important, however, to recognize that each child is different and each family situation is unique. Any individual child may experience a myriad of emotions and feelings which can fluctuate over time depending on what is going on with the parent’s illness.
One of the challenges facing researchers is that parents’ reports of their children’s distress are not always congruent with the children’s self reports. In one study, children and adolescents self-reported significant levels of distress after the diagnosis which declined when they were assessed four months later; their parents, however, reported that their children had little emotional distress. One reason why it may be hard for parents to perceive their children’s distress is because children do not always act maladjusted or exhibit behavioral signs of distress that come to the attention of the parents. Instead these children may internalize their anxiety and depression which may not be uncovered without substantially more parent-child interaction and discussion. In another study, children whose parents had been diagnosed with cancer reported higher levels of anxiety that was associated with an inability to discuss the illness with their parents. These children also spent less time spent in age-appropriate activities with their peer group and experienced ongoing worries about the parent’s health and illness.
The role of both parents after a cancer diagnosis in helping children to adjust is very important. Families are affected not just by the ill parent–who may more absent–but also by the functioning of the well parent. The well parent is faced with many challenges that can include increased responsibilities at home, caregiving for the ill spouse as well as managing the financial burdens of the family. They may experience their own feelings of depression, anxiety and distress. There may an increase in marital tensions as the stress of the disease and treatment become more intense, chronic or enter an acute phase. The well parent may feel less capable of meeting their children’s emotional needs, responding appropriately to situations that arise and being able to set limits, boundaries and discipline. Parenting can be a consuming and difficult life role under the best of circumstances; when the family system is strained by the burdens of illness sometimes the caretaking parent is unable to provide time and consistent parenting.
Unfortunately, the medical environment does not offer much assistance in this area. Oncologists do not have the time, information and resources to help patients figure out how to address the needs of the entire family. Some authors have argued that it is important that oncologists have strong communication skills for discussing disease and treatment with patients and their families. Parents with cancer often have a strong will to live because of their children; this is an important factor in making decisions about their illness. While oncologists may want to ask their patients about their children, trained psychologists and social workers may be much better prepared to help parents navigate their way through these important concerns. I believe that parents with cancer need trained therapists as part of their medical team to help them find their way through the maze of issues to take into consideration the individual needs of the family.
Importance of Communication
Research has already confirmed that good communication is of fundamental importance within the family. The literature acknowledges what you already know—it is very difficult to know how to tell your children that a parent has cancer. It is, however, important, and the research supports that communicating openly with your children can actually help lower the level of their anxiety. Some parents have a tendency to wait for their children to specifically bring up the topic for discussion. Sometimes parents try to protect their children from worry by avoiding talking about a parent’s illness; ironically, this not only does not protect them but actually increases children’s anxiety. As a parent you wonder how much information to provide—should you talk about the cancer treatment, should you tell your children about potential side effects such as fatigue, physical difficulties, and hair loss to name a few of the common topics. How do you deal with the stress of talking to your child when the ill parent is not improving or is having a particularly difficult time? While we know that these conversations are difficult for both you and your children we also know they are supportive and helpful. I cannot impress how important it is to speak with your children.
We also know that parents don’t always agree about how to communicate with their children. Some parents hope they can either hide the difficulties from their children or that their children will somehow develop an understanding without actually having a discussion. It is important for families to look at what they are doing. Many families avoid discussing cancer and its treatments. One study found a relationship between withholding medical information and more negative outcomes. They found less family cohesiveness and worse health in families that withheld information to avoid distress. Withholding information to protect or buffer the children is not the healthiest approach.
We know that communication is an important variable and that communication is a foundation for providing social support to children within the family. I believe it is essential that families engage in open and direct communication regarding the diagnosis, treatments, and its impact on daily living.
Understand the Developmental Phase of the Children
What we say to our children has to be tailored to their age and phase of development. Preschool age children have interesting ways of weaving both logic and fantasy together to arrive at an understanding about things. Children’s fantasy can be very different than what we adults imagine. Understanding their thinking is an important step in this process that requires dialogue over time. It can be helpful to ask them to tell you what they think about the information you share with them. Young children, especially between ages 3 to 7, have a great capacity to see themselves as the center of the world. As such they think that they cause things around them. Children need to be reminded that cancer is not caused by anything that they did. It is important to reassure them with simple statements like, “Sometimes kids think that they might have thought or done something that could cause cancer. Kids don’t ever cause cancer, this is simply not true.” Even school age children can think that their behavior, words, or stresses they created may be related to their parent developing cancer. Again, you need to reassure your child that they had nothing to do with the cancer affecting their parent. Children sometimes think or worry that cancer is contagious. You need to dispel this myth and make sure that the children, especially young children, understand that you cannot catch cancer.
School age children and adolescents are able to understand permanence. As a result, they are able to anticipate and understand the possibility of death and the permanence that it creates; they may have questions about death that need to be addressed throughout the discussion. While these can be painful discussions for parents to engage in, they can be helpful in alleviating the immediate worries of their children.
Specific Words and Information
Parents and family members should always assume that whatever is being talked about within the family will be overheard at some time by the children. It is, therefore, important to use appropriate words and terminology. It is better to name the specific cancer (e.g., breast cancer, lymphoma or leukemia) than to use other expressions such as a “boo-boo,” “lump,” or “bad cells.” These alternative words produce an environment that is ripe for misunderstanding, confusion and can, over time, produce more anxiety. It also creates inaccurate relationships to words. A cancer can be a serious illness, but people get “boo-boos” and “lumps” all the time that are not serious in any way. It is also better to identify the specific type of cancer and to explain to children that there are many hundreds of different types of cancer and, therefore, their parent’s cancer is not necessarily like some other person’s cancer. They need to understand that some people are sicker with cancer than others. This is essential as they may hear frightening stories in other situations such as at school or from family friends and relatives that indicate that someone had a terrible experience with cancer and they are likely to generalize that information to their parent. Being more precise in this discussion helps them know that their parents can give them the most specific and helpful information. The goal of direct communication is to help give children a specific framework for the experience that their family is going through.
In addition to correct terminology, it is better to share information directly with your children. If the information is overheard rather than shared directly, it communicates to them that they are not important enough to be given the information or they may conclude that the information is so bad that their parents must keep it from them. This is likely to escalate their worries and will make it difficult for them to trust that they know what is going on. It also erodes their trust in the parent-child relationship so important for their psychological well-being, now and in the future. Children who are kept informed with regular news bulletins of information are better able to relax because they can trust that if something difficult or terrible is going on they will be told. This helps children feel less alone with stressful information and provides a context for them to ask questions.
A general guideline is to tell children the name of the actual cancer, the part of the body that is affected, the treatments that their parent will undergo and the potential side effects that they may observe. It is also valuable to tell children the specific ways they can expect their life will be affected. Younger children mostly need to know who will be taking care of them; the aspect of time may be less important as they may not have the capacity to manage long time frames.
It is important to give children opportunities for questions. If your child does not ask questions, it can be helpful to anticipate some questions that might come up. When speaking to your children you can give them permission to ask questions by saying things like, “I have been told that many children your age want to know….. Is that something you might be interested in knowing?” If your child indicates they do not want to know something then you can explore with them what they are feeling and what they are thinking that might lead to this sort of response. It is important to know that you don’t have to have the answers to all the questions and that you can come back to questions at a later time. If a child asks you something and you are not sure how to answer, then tell your child, “I think that is a really good question, and I’m not sure how to answer it. I need to talk to your mom to see if she remembers if the doctor answered that for us, if not I’ll ask the doctor next time we go.” Be sure to come back to your child with the answer or even tell them, “I haven’t forgotten your question, I just have not seen the doctor yet to ask.” You can ask if they have any other questions and tell them that you will put their questions on the list for the doctor. This gives your children the experience that you value them having the information that they need and are willing to get it. It communicates that they don’t have to worry that you are hiding information. It makes them feel included in the relationship with your doctor, that you are all part of a cohesive team.
Some children are better able to communicate when there is nothing else going on, e.g., no activity or disruptions. Other children do better talking about difficult things while doing a simple activity. For example, drawing pictures, coloring or playing an uncomplicated game of cards are good activities. It gives them another mechanism to help manage their anxiety and may allow them to talk more openly. Children, especially young children can benefit from being held while information is shared.
As a parent you may have to try some different approaches to see what seems to work best for your family. Sometimes sharing general information with the entire family at the same time is especially helpful and then tailoring more detailed messages for older children and adolescents in individual times where attention can be paid to their needs. Remember that communication is about building and maintaining trust and the first communications are going to lay the groundwork for the future.
An inevitable part of this process is managing misinformation. Any child with a seriously ill parent is likely to hear information that can be misconstrued. Well-intentioned friends may share information about someone else’s cancer experience which is irrelevant or frightening. Since you cannot filter what your children hear, you need to prepare them to bring the information to you so you can help them understand and to clarify what applies to your family and what does not. Children need to be told that not everyone will have as much information as you have because only you are talking directly to the doctors. They need to help keep information channels clear by sharing with the family stories they hear, especially if they are worried, so that misinformation can be identified and corrected.
Older children are likely to go on the internet and explore information on their own. We know that not everything on the internet applies to everyone and there is good and bad information on the internet. It is important to have this discussion with older children and to offer them reliable web sites to access. Explain to them that they should not read or believe everything on the web‒sometimes it can give the wrong information or the information may not apply to you. Reassuring them that you get your information from your physicians who know the specific information relevant to you will help your child see you and your doctor as the best resources of information.
Caretaking of Children and Routines
It is very important to remind the children that they are loved and that the family will continue to work together to cope with this new family situation. It is important to reassure children that arrangements will be made for their care and to enlist a small number of reliable and caring caregivers to assist in the loving support of your children. One of the primary goals of these caregivers is to help maintain the children’s schedules. Children do much better when their basic schedules and routines are not disrupted. There is safety in their daily activities; reassure children that life will be maintained as much as possible. Structured meal times and sleep schedules help children regulate their emotions so it is helpful to keep these intact. Maintaining contact with peers, school and other activities help children and adolescents maintain the feeling that while parts of life are changing and in flux, there are other parts that are stable.
Another good way to help support your child is to keep their school informed of what is happening at home. Speak to the parent of each child’s best friend; ask them if they can help inform other families of your family’s situation to the degree that you want them informed. Encourage your child to maintain relationships with these other adults. You do not want your child to feel that being close with other adults is disloyal to you as this may be a great source of support for them. You can also ask these other adults to direct your children back to you if they learn that your child has questions and concerns that may need to be addressed.
Children Who Don’t Seem to Want to Talk
While it is important that children receive the information they need, not all children want to talk at length about their parent’s illness. Should they be forced to talk? No one can really force someone to talk and we do not know if this would really help prevent problems down the line. The best stance is to communicate openness, from time to time provide updates, and also invite them to speak with you periodically. A safe, open-ended comment that you could make would be something like, “You know that if you want to talk about [name the cancer] I would really like to hear about what it is like for you.” Provide some time for your child to share their thoughts. You can offer some other prompts, such as, “Sometimes I think about [name the cancer] and all the ways it has affected me and I wonder how you think about it.” Some children may cope by keeping busy, seeing friends and not focusing on their parent’s illness.
Hospital Visits, Treatment and Doctor Visits
Visiting the hospital or treatment room can be a helpful experience for children as long as they are prepared in advance for these visits in order to not make them traumatic. Children need to be told what they can expect to see and their questions need to be addressed. When a parent is in the hospital, your child should be prepared for what they will see including whether there will be IV lines, blood, roommates, doctors, nurses, oxygen and or any other machines. It is also helpful to describe benign things like TV’s, a bed that goes up and down, a window or bathroom. Knowing there is a cafeteria where food can be purchased and even information about how the ill parent receives food while in the hospital can help normalize some of the experience. It is easy for adults to assume that children understand these things when, in fact, they really do not. Even telling children the names of some of the nursing staff can help to humanize the experience.
When a child visits it is important to have a designated adult who can take them and will be sensitive to their needs if the child is scared, wants to leave or who can answer their questions and be comforting. The visit should be arranged, if possible, at a time when the sick parent is more alert and not in an altered mental status, which could be frightening for the children. Having a friendly nurse greet the child and provide some reassuring remarks or even offer the child a juice or ice cream can make it friendlier. Communicating confidence and your own sense of being okay with the hospital environment helps children relate to the environment as another important aspect of life.
Separations can be difficult for young children. If possible, it is important to bridge these absences with visits, telephone calls, and messages. Having a child make a drawing for their ill parent can be nice for both the child and parent. Tell the child that their drawing is hung up in the room where their parent can look at it and think of them every day. These small things help maintain the parent-child attachment. Sometimes you can give the child something that belongs to their hospitalized parent to remind them that they are loved and connected during the hospitalization. I have seen parents get matching necklaces or bracelets or a special stuffed animal. These items are what we call transitional objects and they help children and adults maintain their attachments and negotiate their anxieties when separations are inevitable.
Inpatient visits are not the only situations that need managing. Some children are worried about their parents who get chemotherapy and may be gone for hours at a time only to return home looking and/or feeling worse than when they left. It can sometimes be helpful for a child to visit the treatment area on a non-treatment day with their parent, possibly a nurse or child psychologist, to tour and explain treatment to the child. These normalizing experiences help children know that their parent is safe when they are away. Meeting a warm and friendly nurse can help a child feel that their parent will be returned to them. For some children it may be helpful to come to a physician appointment accompanied by a safe supportive adult. Meeting the doctor who is willing to connect with the child and reassure the child that he or she is giving their mom or dad the best care can also alleviate anxiety. These options need to be individually considered. If you are being treated at UCLA the clinicians at the Simms Mann Center can help you with decisions and arrangements.
Questions about Death and End of Life Preparation
Questions about death are not always about end of life preparation. Questions about death are expressions of anxiety that can come up even when the prognosis is extraordinarily good. Children and adolescents may wonder and even ask, “Are you going to die?” This is often one of the more frightening questions that parents have to address and many worry how to answer this question. Parents are worried about frightening their children and these questions raise anxiety in the patient and well spouse as well. Although different families handle this question in different ways such questions need to be addressed. Avoidance is not a healthy approach.
It is important to remember the goals of your communication. Parents want to reduce as much anxiety as possible in both the short and long term, but not at the cost of harming the trust relationship which is ultimately at the heart of children feeling less anxious and more safe. Some parents will acknowledge the possibility of death, but will also provide reassurance that they will take the best care of themselves and that they are seeking the best medical care available which is often the case. Sometimes parents will answer based on their religious values that suggest that no one can know these things as they are in the hands of God. It is important to help children understand that living with uncertainty is challenging for everyone and that living with uncertainty is about hoping for the best and having the best plans in place in case the worst arises. This requires that we, as parents and caregivers, explore our children’s worries and concerns and it may require asking the child about their worries if the parent were to die. For many children the issue is about how they will be taken care of if the parent dies and needing to know that there are plans in place that will sustain them. Some parents will tell children that they do not expect that they will die from this and that they will be living a long time. Sometimes parents will choose reassurance based on information that their physician has provided.
When the disease status is progressing and there is a greater likelihood that death will come from the cancer, despite all of medicine’s and the parents’ best efforts, it is important to realize that this ending phase is the beginning phase in processing grief for this child. There are many actions that can be taken to help facilitate an adaptive response to the loss. We may not be able to stop loss but we can exercise great influence over the experience. It is very important that the children are told repeatedly that they are loved and that they have the opportunity to share their feeling of love with the ill parent. Children can participate in time at the bedside, even when a parent is not cognitively there and words can be said that may be experienced by the dying parent. It can be immensely helpful to have a trained clinician help facilitate discussion with the child and parent through this process to uncover fears, address worries and plan and initiate final memories. Having children participate in hearing and telling stories about the parent – which may be humorous, joyful, or loving representations of the parent—can be very meaningful and these help the child to establish an internalized representation of their parent. Grief is facilitated and adaptive when we are able to hold some image or space internally of the beloved parent with the attachments that have formed a secure and loving bond. As the children move past the death, helping them to hold these attachments and memories will be important.
Children who go through a parent’s cancer experience and ultimately lose their parent actually know loss because they are managing it throughout the process. It can be helpful to remind them of the strength and coping skills that they have developed that will serve them as they move forward. Parents have a lot of responsibilities during difficult and challenging times but they also provide opportunities. It can be helpful for ill parents to write letters to their children to have as representations of their love and concern for them. These legacies are often incredibly helpful to children as they mature in the absence of a parent. They serve as transitional objects and representations of attachments. In these legacies children can be told that the ill parent wanted them to enjoy life and to live fully which can help alleviate their guilt over re-engaging in life for fear of being disloyal to their parent. It can also be a communication about values. See my article in the previous newsletter which is about legacies and ethical wills. Engaging in this process can be so important for children after the loss of a parent.
Parents and children often benefit from a consultation with a well-trained psychologist or social worker with knowledge of cancer and child development. The psychologist can help parents make decisions about how and what to say to children, problem-solve any special needs of the children in a particular family, and help evolve a resolution that makes the most sense. In these consultations, the parents’ knowledge of their family and their children is combined with the experience of the professional…
The Simms Mann Center is currently piloting a program and seeking additional funding to offer education to parents as well as help children process their experiences dealing with a parent who has cancer. We arrange meetings for parents and children to meet with a psychologist followed by individual meetings with each of the children and another meeting with the entire family. This often sheds light on the needs and questions of the children that the parents may not have been able to discern or that the children were not able to verbalize. These meetings do not have to become ongoing therapy meetings but may be important at transition times or even to just assess where things are in a particular family. Sometimes drawings are made during these sessions.
Professional assistance can lead to the identification of issues that need to be addressed within a family, but it can also help identify when a child might need some extra evaluation or therapeutic contact to help them manage the unique difficulties that they are facing. I want to encourage parents to bring their concerns forward as only through this process can the needs of everyone in the family be accurately identified and solutions found. Children are often very resilient; with small amounts of assistance along the way their resilience can be fortified. Our families who have made the choice to come in have inevitably shared with us that it was valuable and helpful to them. It is not stigmatizing. Children often see it as part of being included in the overall care of the family by the comprehensive medical team that is treating their parent.
Many years ago, I was interviewed on television about these types of services. As it turned out the father of one of my children’s friends happened to see the show. He had lost his mother as a child. He called me in tears and told me about his loss, about which I had never known. He expressed such gratitude for the services that we are offering, that nothing like that had been available when he was a child and how immensely helpful it would have been for him and for his mother. The cancer experience is powerful in families but so, too, can be support and assistance. We would be happy to help your family navigate the best course possible through this extraordinarily challenging time.
Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology
© Anne Coscarelli, Ph.D. All rights reserved. 2011.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.