I’m here because I love the Oncology Nursing Society and I’ve been here for two different events. One of them was the Research Intensive and I was asked to chair the review sections for the young investigators and that was yesterday. Then I’m here also to receive the Distinguished Researcher Award.
Can you tell us more about the workshop you were part of?
It was a workshop to foster young investigators, assistant professors and fellows to refine their research grants. So it was a day focussed on that. We brought in five experts who reviewed their grants and then we had a mock study section like they would do at NIH. They were watching us being in the fishbowl talking about it and then got their perspective on what they heard in general from all of them that was common in terms of things that they want to be thinking about in doing their grants. Then in the afternoon they got to meet with the two reviewers who actually were the ones that were the primary and secondary reviewer of their proposals. Then we worked with them to think about the next steps and make plans to getting that grant in and successfully.
I think that the learners were really very happy with the feedback they got. It’s kind of daunting for them when they are sitting there and we’re sitting around talking about their research in front of them with all these other people around. But they were very brave about that so it was fun.
Can you tell us about your work that is being recognised through receiving the Distinguished Researcher Award?
I study resilience in adolescents and young adults with cancer and I’ve done that my whole career as a researcher. I started in my doctoral work looking at courage in chronically ill adolescents. My inspiration for that work was my daughter. I’d always thought that I knew about preparing children for procedures and things like that so I thought I knew a lot about that from my training even as an undergraduate, but then my daughter broke my leg. I thought all this preparation but she was just really having a difficult time at each phase of taking care of this leg – getting the cast on, learning to walk with it, getting it off – and all the preparation didn’t do anything. Then I just heard at a conference that some kids seem to be braver than others and so that took me on this whole path to looking at courage first as part of a dissertation study to understand from adolescents’ perspectives what their experiences of courage were. So they were kids with all kinds of different chronic illnesses but they’d had so much to tell me and just listening to their stories of courage. So I looked at that and came up with a model of resilience from that. I developed the measures to measure it and then went on, now we’re doing interventions based on it. So we’ve done several NIH studies of it to understand ways to foster resilience in adolescents and young adults.
My latest project is to expand that model internationally and I’ve had a lot of international students to come and work with me. So now I have established, I call it the Area Cooperative Group, the Asian resilience enhancement for adolescents and young adults with cancer. We have people in Japan and China and Taiwan and Korea and adding Singapore soon and they’re all evaluating my resilience model.
So let me talk a little bit about the model itself, that’s really the most important. What we’ve learned is that in order to get through cancer experiences we often focus on the difficult parts of it, the illness related distress I call them – uncertainty about illness and also the symptoms that you have. But then also the ways that we cope with it that are not really as… it’s normal but if you stick on doing that for a long time it’s really difficult to come out the other end as a survivor and still move on with life. Those are things like avoidant coping or really emotional coping, those kinds of things.
So those two factors are really important problems but we often, in medicine, talk about the problems but don’t think about all the strengths. So my work has been to identify those factors that make adolescents and young adults, and I think probably most people, resilient. There are six factors that I’ve found and the first one is spirituality and that spiritual perspective, that’s the beliefs and practices, and that’s a really strong driver of resilience which kind of surprised me when I started looking at that very quantitatively.
The other factors that influence resilience are what I call social integration and that’s a relationship with their healthcare providers but also the support of their community, their friends and folks like that. Then the family environment is also a really important factor and that’s the family adaptability, their cohesion and their sense of cohesion, their sense of their strengths in their family and their communication, especially their communication. Those things all influence the hope that they have and the meaning that they find from having their experience. Then those lead to the other kinds of coping, besides the defensive is what I call courageous coping. Those are ways that people who have difficult situations deal with it positively and one of those ways is optimistic coping, it’s thinking about the glass half full instead of half empty. There is also confrontive coping and that’s instead of trying to run away from it or not deal with it is to learn about what the situation is. So in the context of cancer adolescents want to learn about what they can do about their cancer and so forth.
Then support in coping is your third one and that one is really important in being able to ask for help. Sometimes adolescents have a really difficult time asking others for help, they feel embarrassed or whatever. So being willing to say, ‘I need some help with this,’ or ‘Can we talk about that,’ and those kinds of things. The other population that does a lot of that that have difficulty asking for help are mums with cancer, they just feel like they shouldn’t have to do that. So those things are factors that influence resilience and then from resilience their ability to rise above.
There are a lot of stories that you hear on the news and things about people who are courageous or resilient and we often are in awe of them but these factors are what help them to be that way. My work is to try and figure out ways to help all adolescents with chronic illnesses be courageous and to be resilient. All of us have strengths, sometimes it takes courage to get up in the morning, right? So it’s thinking about ways to help them do that. So we’re in the process now of we know how to do that. Music therapy intervention was one that we did where they were able to express what they had to say. We had the whole gamut, they made a video about whatever they thought was important to make it about. So we had kids who talked about… one of them, the theme of their thing was, ‘Oh Lord may my life bring you glory.’ It was a young adult and he talked about wanting to make his experience, make it helping other people and being inspiring for him. We had another one that was called ‘Food Fight’. She named it ‘Food Fight’ and the lyrics to her song were the cupcakes crying, ‘Not the oven’ one more time and the idea that they’re crying out for help and why is this happening to me. So two different experiences of their cancer, expressing them in different ways but I can tell you that all of the videos in this, this was an NIH funded study, but all of the videos had all of these factors in it. We didn’t tell them what to talk about or anything but as we looked at their lyrics and we looked at what they were doing we found that all of them have those things and it’s a matter of us learning ways to improve that.
The other thing about that, now we’re at the point where we need to start learning about that earlier. So now we’re building an app where the kids complete all the measures, there’s a lot of them, but they don’t mind because I selected the model through understanding first of all what the kids were saying. So they say when they fill those measures out, and there’s a lot of them, they say it’s not like taking a test because we have it on a nice screen with other kids and half way through we have a monkey and cheering and at the end the Hallelujah Chorus playing. So it’s not like taking a test for them, which is great.
When they do their videos what they have to say in them is so important. So we’re summarising what they have in their questionnaires and then we’re putting that as an avatar on a soccer field. So we talk about all those things I just talked about there – kinds of coping and their distresses and all of those things – and we put them as a person on a soccer field with a shaded area so they can compare themselves to other adolescents and young adults their same age and gender. Then we can have conversations about them. But the other thing that we’re looking to do with that is to help them then to reflect on what their strengths are and then have conversations with a nurse intervener to think about ways they want to work through the cancer experience and what they can draw on in terms of the strengths that they have.
So we’re just beginning to do that. We’ve done some pilot work on that and we’re going for additional funding for that. So it’s a really exciting project and our feedback from our adolescents and young adults is really very enthusiastic. We’re also doing the same thing with parents because we know that that family environment is so important as well. So for the parents we’re also assessing them and helping them to think through and understanding a little bit more about how they want to manage and deal with the cancer. Starting at diagnosis because if we can get them started thinking about these things early we think they’ll be able to be more resilient and come out the other end of all their treatments in a more positive and resilient way.
Can you explain more about risk factors?
The risk and predictive factors, the risk factors are those two that I talked about, the illness-related distress and then the defensive coping. Within those things there’s the uncertainty and the symptoms distress and those two are really big. So if they have a lot of symptoms it’s hard to overcome those. It’s like the plus signs and the minus, it’s balancing those two things. When they’re really sick it’s really hard to draw on these other things but the more they can do that the more they’ll come out resilient at the end. Then the coping one is differences between the defensive coping and the courageous coping.
When you are in a difficult situation the normal response is flight or fight. So the flight piece is often where the defensive coping is where they’ll not want to talk about it or they’ll want to just avoid it, avoid talking about it or be very emotive about it and, ‘Oh my gosh, it’s so bad. What am I going to do?’ Defensive, fatalistic and emotive – so the fatalistic, ‘There’s no point, I might as well quit,’ those kinds of things. Those are the kinds of things we often do when we have something really bad happen to us – ‘I can’t handle it.’ But what we need to do is help them to understand they have these other ways of overcoming these things and reframing. But that takes thinking about it and facing them and working through them. So by making a video, for instance, that’s a way to do that and work through it. You can see they’re at all different phases of that process but it helps them to move forward. We did find positive results in terms of their outcomes, their improvement in their family communication and their resilience and things like that from our studies.
What is your take home message for oncology nurses?
I think one other thing is to just look for the positive things and to build on those because the relationships that our nurses have, and our doctors, in how we talk to adolescents, they’re kind of hard to talk to sometimes and a lot of people don’t feel comfortable. But that is such an important protective factor. And then fostering or helping – our nurses can help the families to open the communication as well. We did a family communication intervention where we helped the parents to learn how to have to open ended questioning and distinguish between teaching and listening. So often parents are really good at teaching but if we can teach them to listen more to their kids then that’s that family environment piece to foster that. So nurses can certainly help families to learn better ways to talk with their families if they’re really struggling within their families. A lot of times it’s kind of a double protection thing where the kids don’t want to distress the parents and the parents don’t want to share their distress either. So there’s this silence wall.
Interesting, if I could just talk about this, my studies in Asia, what we’re finding there is culturally it’s very, very different and families do not talk about cancer at all. So you have a 21 year old who the whole family acts as though it’s something else. It’s a serious illness but it’s not cancer. So children die over there without having anybody to talk with them about it or understand what’s happening with them. So that’s something that we don’t know what we’re going to do with that yet because I’m working with my colleagues over there and finding that this family, there’s got to be some kind of protective factors and some belief systems that influence that. One of the things we know is that within the family the value is for the group rather than the individual. So some of that fosters their lack of communication a bit but also some of their beliefs in terms of if you just put up with what your life is now then it will help the ancestors and paying it forward or backward, I’m not sure which. We’re just learning all this stuff now from the folks I’m working with over there.
Resilience is an important concept all over the world and how people do that or gain resilience. I think these factors that I talked about are universal but how they are enacted and especially within the family where we found this communication piece is really, really important. The spirituality in the United States, as I said, it’s one of the biggest, biggest factors and I didn’t expect that when I started working on it. I did my first work in Oklahoma and I thought it was a Bible belt thing maybe but it’s not and it is the most significant, three star significance, driving all of the other things in the model. So how that comes out, and we’ve had conversations with my colleagues over there about the spirituality piece of it. Because that’s another thing – the Korean and Taiwan, they have a lot of Christians as well as others but China doesn’t have religion as much. So how that works, we’re trying to figure out what it is. Everybody has a spirituality within them so understanding how that works in a different country, it’s a wonderful thing to explore.