Eileen Furlong, PhD: How a Maternal Cancer Diagnosis Affects the Children

Eileen Furlong, RGN, RCN, PhD, the European Oncology Nursing Society Distinguished Merit Award Winner in 2011, discusses her research on how a maternal cancer diagnosis affects children ages 7-11.

The Group Room at the 2011 European Multidisciplinary Cancer Conference was made possible, in part, by:

 

VIDEO TRANSCRIPT

Selma Schimmel, Founder & CEO, Vital Options International:

This is Selma Schimmel at the Multidisciplinary Cancer Congress 2011 at Stockholm. Today we’re joined by oncology nurse, Doctor Eileen Furlong, recipient of the 2011 European Society of Nursing Oncology Distinguished Merit Award for her research on the effects of a maternal cancer diagnosis on school-aged children. Eileen, congratulations.

Eileen Furlong, RGN, RCN, PhD, School of Nursing, Midwifery & Health Systems, Univ. College Dublin:

Thank you. Yes, I’m honored and privileged to be the recipient.

Selma Schimmel:

How does it feel after dedicating your life to oncology and nursing?

Eileen Furlong:

Wonderful feeling, and it’s just one that I certainly will treasure the feeling of today. I feel very honored to have received it. I feel I represent cancer nurses in Ireland in particular, and I have joined a list of very esteemed colleagues in this award, and as you can see people have received it in the past. So it’s a huge honor to me, and a huge recognition of over 20 years of cancer nursing contribution in Europe.

Selma Schimmel:

And what made you choose oncology research, nursing, as your passion?

Eileen Furlong:

I suppose in many ways once one qualifies in Ireland, one usually works more in a general capacity and I always had an interest in cancer nursing both from a personal point of view but also professionally. And my career in cancer nursing started with children’s cancer nursing so not something that one would take on without a lot of thought. Having said that I’ve worked with children for 20 years plus, I love children, and I suppose like any career once you decide on a specialty then it’s one that you acquire knowledge and skills. And then it becomes something that I love, and still do continue to love although I’ve moved into education as opposed to practice at the moment. So it was probably quite a personal choice in relation to having quite earlier on experienced cancer, having seen what it could do to families, to wanting to make a difference, at least wanting to try to make a difference for families.

Selma Schimmel:

And you have a PhD?

Eileen Furlong:

I do now, which is wonderful, yes. And I’ve just completed my PhD on looking at the impact of a maternal cancer diagnosis on school-aged children. Now school-aged children, I’m referring to early school-aged children, so seven to eleven year old children whose mother has been diagnosed with cancer. And again, I suppose it just follows through with my commitment to children, and what I believe.

Selma Schimmel:

What have we learned about the impact of children whose mothers are going through breast cancer?

Eileen Furlong:

My study focused on the children’s voices, and therefore I asked the children themselves about the experience. So from my study what we have learned is – and there’s a particular methodology and grounded theory – we’ve learned that children engage in a process of protecting their mother but also protecting their own lives as they navigate a period of what we call disruptive mothering. So the mothering experience is altered and the children have a loss of what they perceive to be the well-mother, and now they enter into a child who has a mother who is not well. So there’s quite a lot of negotiation within the family, changes in routines, changes in responsibilities, and the children found that quite difficult. They also did not like the fact that outside people knew about their mother’s illness.

Selma Schimmel:

Is there a feeling of shame?

Eileen Furlong:

There’s a stigma attached to cancer still and these children would not have known about cancer prior to their mother’s diagnosis. They had a public image of cancer so still quite a negative image of cancer and one where they would like their mom to be seen in public without, say, her wig on for example.

Selma Schimmel:

I’m curious about whether little girls develop any kind of fear as they begin to develop in relation to their own emerging breasts.

Eileen Furlong:

And I thought that might have been evident in my findings but it’s not. I had interviewed 15 girls and 13 boys so quite equal, and there was some siblings in that but there was no difference in the boys and girls in relation to the findings and their perception of the future. And whether they were quite young still and still hadn’t… I’m not too sure because I can only surmise findings but I could only go by what the children told me, and none of them were concerned about their own development of cancer at that stage. They were concerned about their mother dying, and even though every one of the children in my study their mothers had early stage breast cancer but the next prognosis all of the children in the study asked be during the interview about the fact of would their mother die. Even though they reassured themselves, and the mothers have excellent… they will do very well and have done very well.

Selma Schimmel:

What was the most surprising finding?

Eileen Furlong:

I suppose really that the disruptive mothering, the impact it had on the child’s life, and the need for the child to try and protect their own life, and it wasn’t that they weren’t concerned about their mother but the child’s innate focus was on themselves. And how they had to shift from being a child of a well mother to being a child of a mother with breast cancer. So what I saw was made a disruption to their life, and really the mother’s life has been disrupted but they were – and I know mothers might find it surprising – they were more worried about the disruption to their lives as opposed to the change that were happening in their mother’s life.

They resented the fact that their life changed. They had to take on roles and responsibilities that seven to eleven year old children in Ireland wouldn’t normally have to take on.

Selma Schimmel:

What recommendations based on your research might you have for a mother going through this experience with their young children?

Eileen Furlong:

One of the key recommendations I would like to look at is how we could put in play supportive interventions for parents whose children have been diagnosed with cancer. I think we connect standard to parents and I know my street is (inaudible) women with breast cancer at the moment it’s… there is an attempt to help the mother but because the structures in cancer nursing and in nursing medical oncology and radiation oncology, the children don’t get a chance to come into the hospital setting. I think that’s across most of the centers due to time constraints, infection control, and restraints. So therefore the child isn’t getting access to the health care professionals, and the health care professionals don’t have access to the children. So at the moment the children – I thought about it this morning – are being left out in the cold. Not intentionally, but they’re not getting access to health care professionals.

When we look at literature that’s available for children to help them understand cancer, there are some book that’s written but it’s written for talking to your child about cancer, but they’re written for an adult. So there’s nothing in child-oriented language. Now I say nothing, sorry that’s not right. There are some internationally there are some documentation there in relation, but I think we need to expand and look at having an interactive process for children, which help them understand the cancer diagnosis.

Selma Schimmel:

And age appropriate.

Eileen Furlong:

Very important. The language and cognitive development of the child, and social development of the child is really important.

Selma Schimmel:

How important is it to have open communication when one mom’s diagnosed with the kids?

Eileen Furlong:

It’s very important but very difficult, and that’s one thing parents are told when they ask the health care professional – be honest with your child. But then they’re told to go home, and for most of the children in my study they weren’t directly told that their mother had cancer. They picked up the cues in the family home from seeing their mother upset, numerous phone calls, numerous cards, flowers arriving, door stop conversations, whispering… so the majority of them were not told directly until they already knew, and then they were told. Now the parents meant very well, they were trying to protect their children, but that protection the children already found out in other ways. So it’s really important but I think as health care professionals we have to help the mothers and the parents who are diagnosed with cancer. They’re already coping themselves with the diagnosis, and we say ‘be honest with your children’.  Particularly I’m talking about seven to eleven year olds. Teenagers have a different capacity for understanding it. Children have already constructed the meaning of cancer, which is usually around television – the soap operas – and sometimes that… it’s very good sometimes but it’s not always in a real way for them in their understanding. So how to talk to children is a huge issue – about illness but particularly cancer.

Selma Schimmel:

And were there any notable changes in behavior with kids with their fathers while mom was going through cancer?

Eileen Furlong:

It’s really the interesting finding that I have discussed in my discussion chapter that 25 of the children in my study were from a two parent family out of 28. And the other three were from a single… that the mother was the single parent. Very rarely was the father actually mentioned – and I know this might be quite upsetting – at one point we thought the fathers were not involved but children focused totally on themselves and their mother. Now a lot of it was as well a lot of the fathers were out working during the day, and so therefore I’m not too sure if all of the fathers just remained the same in many ways. So apart from the fact that the dad about work he didn’t feature hugely. The relationship didn’t seem to center, and I don’t know whether that’s because the mother had the cancer, and therefore that was the focus – I wasn’t focusing on – I was focusing on them, I wasn’t focusing on them particularly, I was focusing on them as children with a mother who had cancer. But I didn’t exclude the father in anywhere my questions, and there is an actual concern about the absence of the father in my findings. And remember, this is just my findings.

Selma Schimmel:

What communication is really necessary so when that child goes to school that the teacher could be aware the child may be very tired, may not be doing assignments, may be falling asleep in class, may be acting out in class. Is there something you’ve learned about the dynamic between the teacher, the mother and the child?

Eileen Furlong:

The communication between the mother and the teacher was already established and the mother had told the teacher about the diagnose. Now again, remember the children weren’t too early so the teacher was told at a certain time as well. But what was interesting again, from the children’s perspective was they knew the teacher knew, they did not like the teacher asking about their mother in any public way in school. And they also didn’t like if they were singled out and the teacher called them up to ask about their mother. So in some ways I think it was quite an interesting relationship for teachers to get it right in how they cope with it. It wasn’t easy because if the teacher didn’t ask it might look like they didn’t care, but the children really wanted school to be normal. And by the teacher asking them it brought the impact of their mother’s diagnosis into another sphere of their life that they wanted to keep normal.

And I talk about this in my study by shifting normality. So the normality of home had shifted, they didn’t want the normality of school to shift. So there’s quite a dichotomy of whether teacher should ask and what teacher should know. But at the moment in our school system within Ireland it’s even difficulty of… large class numbers and even teachers themselves can cope with inspect communication with children. Children and teachers do it very well from an education perspective, but illness is not part of the school curricula in Ireland in relation to talking about illness – it isn’t part of it. So that was another interesting finding within it. It’s like yes, they want them to know but they didn’t want them to ask.

Selma Schimmel:

Well I want to thank you for the research. I think it’s very, very important that we don’t forget the impact that cancer has on our kids.

Eileen Furlong:

Thank you.

Selma Schimmel:

And a particular congratulations again for the EONS – the European Oncology Nursing Society – Distinguished Merit Award.

Eileen Furlong:

Thank you.

END OF VIDEO