How to tell children their sibling has cancer

MD Anderson Cancer Center
Date: 07-29-13


Lisa Garvin: Welcome to "Cancer Newsline", a podcast series from the University of Texas MD Anderson Cancer Center. "Cancer Newsline" helps you stay current with the news on cancer research, diagnosis, treatment, and prevention, providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin, and today, our guest is Morgan Henry. She is a counselor in MD Anderson's social work department, and we'll be talking about how we broach the subject of cancer in children and how we discuss with their brothers and sisters. So, Morgan, how does that typically happen? I mean, we get a pediatric patient that's been diagnosed. When do you start to broach that subject with their siblings?

Morgan Henry: I would certainly recommend broaching the subject as soon as possible. Of course, when having the conversation, parents themselves need to be able to remain fairly composed. I think it's certainly appropriate to show some emotion. So if you get a little tearful or sad or upset, that's OK, but if parents are to the point where they themselves are just so hysterical or crying and just unable to compose themselves, I would recommend waiting a little bit until you can kind of process the information and the news as adults, and then being able to have a sit-down conversation, you know, with the family as a unit. So, certainly, telling the siblings of the patient as soon as possible. Again, that being said, at a point where the parents can remain composed and answer questions and model healthy coping for their children.

Lisa Garvin: And what is your role as a social work counselor? How often, do parents go it alone in telling their family, or do they often come to you for advice?

Morgan Henry: So it certainly depends. A lot of times pediatric patients may be coming to MD Anderson for a second, third, or fourth opinion. So it's not necessarily a brand-new diagnosis, but sometimes it is. So it just kind of depends on the situation. Certainly, that tends to be something that pediatric medical teams are really good about asking families about in terms of, you know, what have you told the patient. What have you told the family, their siblings, and then that kind of plants to seed if the parents haven't even been thinking about that yet. And so certainly, if the team kind of senses they need some help or they're having some anxiety, social work counselors are certainly available to kind of guide families through that. So it just kind of depends on the family because sometimes they're outright asking for help and other times they're barely self-sufficient.

Lisa Garvin: Do you have, like, a scenario or a plan that you can give them if they, you know, don't know exactly what to do or how to approach it -

Morgan Henry: Oh, sure. We can certainly provide guidance. You know, I think, first and foremost, when working with families who have children, and the patient is the, a child, you know, I think the biggest thing to consider is developmental stage because that's going to really dictate and guide how you broach the subject, the language that you use, the terms that you use, and that can be difficult for families because if you have children who are in different developmental stage, if you have a two year old and a seven year old, they're going to understand cancer and the whole process very differently, and certainly families who have multiple children spanning a wide age range, it can be a little bit more challenging. With that being said, you know, it's certainly not insurmountable, and the, again, you know, the social work counselors are available to kind of educate families about the developmental differences as well as the language to use. And also at the Children's Cancer Hospital here, we also have child life specialists, who are also very well versed in child development and age-appropriate language and activities to help educate patients and their siblings. So it's, certainly, a multi-disciplinary effort.

Lisa Garvin: Well, what about, I mean, there are probably some parents who are probably in denial, and do not want to share that information -

Morgan Henry: Sure -

Lisa Garvin: With the rest of their children. Is that necessarily a good thing, without making any judgments? I mean -

Morgan Henry: Research does show that children who are given age-appropriate and timely information tend to have lower anxiety levels than those who do not receive such information, and I think it is certainly a parent's natural instinct to want to protect their child, and that, I absolutely acknowledge that. And oftentimes in an effort to protect their child, that sometimes turns into parents not giving all the information to either the patient and/or the siblings, and, again, it tends to be well intentioned, but, ultimately, that can do more harm than good because kids are far more perceptive than we adults give them credit for. And so although they may not be hearing direct information, they can pick up on a lot more whether it's they overhear things or they kind of sense the overall energy or vibe in the house. If things are a little bit more stressful or tense, and, certainly, if the pediatric patient themselves, if they are coming to MD Anderson Cancer Center, that right there is fairly telling, and, again, it depends on the age, you know, kind of in terms of their awareness of what's going on. And from my experience, I also think that the patients, even though they're young, and they're children, they still know what's going on in their bodies, and, obviously, if they're undergoing treatment, then that's a whole another kind of issue in terms of communication. And, again, you know, our doctors, I feel, in pediatrics are very good about informing patients, again, in an age-appropriate way, and so that, you know, everyone tends to be on the same page.

Lisa Garvin: And you talk about developmental stage. I have a friend who has children that range from 15 to 4. So he's got quite a -

Morgan Henry: Yeah -

Lisa Garvin: Do you sit them down separately and then broach the subject in an age-appropriate way, and how do you kind of group them? I mean, -

Morgan Henry: Right -

Lisa Garvin: Is it, like, 2 to 5 and then so on -

Morgan Henry: Right. So that's a really good question. So, of course, ultimately, parents are the experts in their own children, and these are just kind of, what you can typically expect from certain ages, but generally speaking, ages 0 to 2, they're not going to have much ability to understand kind of what or comprehend what is going on with the cancer experience, whether they're the patient or not. And then generally about 2 to 5 years old is kind of the younger, not quite school age, but, you know, kind of the younger age range, that they're beginning to have a better understanding, but still very kind of, you know, getting to that concrete level of thinking, and then 5 to 8, kind of that young school age. They are going to be very concrete thinkers. Very information hungry, a little bit more inquisitive, and then usually speaking about 8 to 12, again, continually with the concrete thinking. Towards the end, 11, 12, they might be able to think abstractly a little bit more, but, again, still tend to be information hungry, inquisitive, and kind of going back, 2 to 5 years old, they can also be very egocentric. So it's more about me, which is very, ask any parent probably with a three year old, and they will confirm that. But, again that they tend to think a little bit more about themselves, and that's developmentally appropriate. And then kind of when they're getting older, again, more information, still concrete terms, but able to think about, you know, how it's going to affect the family as a whole. And then once you get to the pre-adolescent age, you know, around 12 years old or so, then, again, more abstract thinking, and then, of course, further on into the teenage years, a little bit more existential thinking and, you know, how to situation's going to affect, again, outside of just themselves.

Lisa Garvin: So say you've got a two year old and then, like, an adolescent. So, well, let's make it, like, a four year old -

Morgan Henry: OK.

Lisa Garvin: So you would sit the four year old down separately from the 15 year old.

Morgan Henry: So I would probably recommend still having the conversation as a family to eliminate or alleviate any feelings of isolation, even if, again, you know, again, if you have such different age ranges, I would probably start the conversation at the youngest child's level, and then kind of work your way up, so to speak. So start with very basic information catered towards the youngest child, and then, again, kind of become more advanced in your language once the basic concept and ideas are grasped by all. Because I think, again, if you were to start catering to the 15 year old and speaking on their level and then trying to kind of work your way down, the four year old or the, you know, ten year old could be kind of lost and even more anxious. So if you kind of start with the youngest, and then again, you know, provide more information up to the older child's level of understanding. And I think even acknowledging if you do have a five year old and a ten year old, just acknowledging that, you know, you all are different ages, and you might have a different understanding of this, and that's OK because there is an age difference, and that's normal. I don't typically like the word "normal", but sometimes that can be very reassuring.

Lisa Garvin: In your experience, how often do you see the siblings of pediatric cancer patients in the hospital at the bedside? Is that common -

Morgan Henry: It's pretty common, certainly during the summertime when the siblings are not in school. And, again, I think it really depends on the family and the family functions. If the kiddos are younger and not of school age, it's very common to see them during outpatient appointments or visiting the patient when they're hospitalized, and, again, certainly, in the summertime, we start seeing kids more frequently. And then I think it also just depends on what's going on with the patient. If the patient is sicker or not doing very well, then, certainly, more family tends to be around, and that includes the siblings. And also during holidays, we see more siblings, and then if there's any sort of event, whether it's something hosted by Child Life or the Children's Cancer Hospital, certainly, siblings are welcome to join those types of kind of more fun parts of the hospital experience.

Lisa Garvin: Now if the child is terminal or the prognosis is very poor, does your approach to their siblings change?

Morgan Henry: Well, I think, certainly, the information that you're giving is now different, and, certainly, probably the parents, their probably state is different, and that's understandable. So I think in a situation where the patient is considered terminal, there's going to be a lot of factors that will dictate the conversation that the parents have. For example, what is the patient's prognosis? Is there a life expectancy that the doctors are talking about? What is the treatment plan at this point? Is the patient going to remain hospitalized here at MD Anderson until they pass, or is the patient going to go home on home hospice, or is the patient going to go to inpatient hospice? Was this something that happened very suddenly? Was there some sort of event that expedited this process, or has this been months coming? So those types of factors as well as, again, developmental stages of the children, how much information has been provided thus far? Hopefully, the siblings and the patient are already fairly clued in to the, you know, what's been going on, but I also acknowledge that sometimes things can happen unexpectedly, and things can happen in a very condensed timeframe. And so the parents are still processing and are still kind of dealing with it, and have only had a few days or so to kind of accept this, and now they have to tell their children. So, again, a lot of, you know, factors kind of play into it. I do think if the situation is terminal, I would probably recommend for families to first have a conversation with the multi-disciplinary team. Again, that includes the medical team, the doctor, the mid-level practitioner to make sure they fully understand what is going on medically and what to expect as much as the doctors can provide that up front information. I know they can only predict so much, but, certainly, ensure that the parents have a good understanding of kind of what's going on medically and what to expect, and then from that point, again, ask for help from the social work counselors, ask for help from child life specialist because I wish I had just a blanket statement that I could say or a blanket conversation to have, but it really does just depend on what's going on with the child and also what's going on I think the family. I mean, how well are they functioning, how well are they coping? That's really going to kind of also determine, you know, how this conversation goes with the patient and the siblings -

Lisa Garvin: And I think when we talk about a terminal situation, obviously, after the patient has passed, the connection to MD Anderson is broken -

Morgan Henry: Sure -

Lisa Garvin: Basically [phonetic]. So what would you suggest, I mean, we hear a lot about survivor guilt. What do parents do in the aftermath? Do they -

Morgan Henry: Yeah -

Lisa Garvin: Seek a grief counselor. Are there any signs or symptoms they can -
Morgan Henry: Sure -

Lisa Garvin: Look at in their children?

Morgan Henry: So, generally speaking, whether the situation is terminal or not, a good indicator of how a child is coping with any cancer diagnosis, whether it is their sibling or not, is behavior as well as academics. So how are they just behaving in general? Are they acting out? Are they more aggressive, or are they withdrawing? You know, are they, you know, look for those types of changes, and then also in school, are they the straight A student suddenly acting out and not doing their homework, or vice versa. Is this, the child who normally is kind of, you know, goofy off in class suddenly overachieving and just trying, not to say that's not a, necessarily a bad thing per se, but it is a change that might indicate something that's going on at a deeper level. So in terms of after a child passes, you know, I think, certainly, what can be challenging for parents is not only are they dealing with their own grief. Research shows that losing a child is one of the most traumatic events for someone to experience. So not only are they dealing with their own grief and their own kind of sense of helplessness because as a parent you naturally want to fix things, and cancer was something that you couldn't fix, even though you did your best to take care for the child and do everything possible, suddenly there was this lack of control, and something that you couldn't fix and something that you couldn't take away and ultimately it took your child from you. So not only are the parents dealing with all of the complex emotions, but now they're having to still be a parent to these other children or other child that are left behind. And so it's very important that parents really seek out additional support because, again, it's not realistic to expect them to just move on and be able to parent as they normally could. That's understandable, but they need to ask for help. They need to seek out the support, whether it's from family or friends or neighbors or children's friends, parents. I mean, someone to kind of help fill in the gaps until they're kind of back to being able to truly be there for their children. So I think in the aftermath, seek support. Certainly, look for those behavioral changes, changes in school. Also, psychosomatic symptoms. Kids tend to internalize their feelings. They may not be able to verbalize or articulate them as well as adults theoretically can. So look for the headaches, the stomachaches. You know, certainly, if it's a persistent problem, take them to the pediatrician to ensure there's nothing medically going on, but otherwise that could be a sign that they're internalizing these kind of harder feelings or negative feelings. And then, certainly, there are resources in the Houston area such as Bo's Place, which is a grief support center for families who have lost a loved one. They do have free support groups for families who have lost a parent or a child, and that can be very helpful. Again, for kids just to be around other kids who have been in a similar situation. They know what it feels like, and so it kind of, again, alleviates those feelings of isolation, rejection, and abandonment. And I think something to consider when a child loses a sibling, siblings have a very unique bond, and, typically, your sibling is your first best friend. It's your kind of partner in crime. It's your buddy, and you kind of expect to be with your siblings throughout your entire life. You don't really necessarily image what life is like without them, and so for a child to have that taken away can be very traumatic. And it does bring up a lot of complex feelings because oftentimes throughout the cancer experience, siblings can feel left out or jealous of the attention that their parents are giving the patient. And so it's a lot of complex emotions as well as anxiety about their sibling and seeing them suddenly they're not feeling well and not going to school and losing their hair and that sort of thing. That can be very upsetting and alarming to a child, but that all being said, research does also show that there are positive aspects that children experience who have a sibling with cancer, and those are increased empathy, increased independence, incredible desire to help others, and just kind of overall a sense of maturity, although one might argue that they were forced to grow up a little bit sooner, but at the same time, it kind of gives them a different perspective, a more mature perspective on life and family and health and those types of things. So there are positive aspects. So that's something to kind of remember, but, certainly, in the aftermath, seek support, whether it's through family or community, and absolutely a great resource can always be school counselors because they are the ones probably seeing the kids, are hearing the concerns from teachers, and then also you can always talk to a pediatrician about getting a referral, whether it's to a psychologist or a grief counselor or a counselor or a social worker. Someone who can provide more kind of ongoing support. And from my experience at the Children's Cancer Hospital, even when a patient dies, the medical team, the social workers, the child life specialists are all still very available. So if families are just absolutely at a loss at what to do next, we're still here. We didn't go anywhere. So, certainly, they're always welcome to call.

Lisa Garvin: So it sounds like in closing, be honest and seek help -

Morgan Henry: Yes.

Lisa Garvin: Great. Thank you very much for being with us today. If you have questions about anything you've heard today on "Cancer Newsline", contact ask MD Anderson at 1-877-MD Anderson-6789 or online at MD Anderson dot org slash ask. Thank you for listening to this episode of "Cancer Newsline". Tune in for the next podcast in our series.