When a friend’s daughter was diagnosed with leukemia, everyone around them was shocked and dismayed. We wondered how to best support them. We also struggled to figure out how to show a very sick 8 year old that we cared without upsetting her or making things worse. Dr. Elaine Champagne, a specialist in pediatric chaplaincy who holds the Religion, Spirituality, and Health Chair at Laval University in Quebec, shares stories from her work with seriously ill children that suggest constructive ways we can engage that are attentive to children’s feelings, affirm their agency, and support their choices.
Transcript
Interview with Dr. Elaine Champagne
Karen-Marie (00:06):
Welcome. I’m Karen-Marie Yust and my colleague Erin Reibel and I are talking with Dr. Elaine Champagne, who holds the Religion, Spirituality, and Health Chair at Laval University in Quebec. Elaine is a pediatric chaplaincy specialist and we’ve invited her to tell us more about her experiences in that field.
Erin (00:29):
Elaine, thank you so much for joining us today. You’ve worked with seriously ill children and their families. What have you learned about how relationships develop with sick kids?
Elaine (00:40):
I certainly realized and still continue to believe very deeply that the relationship with children is so very much important. Just a few days ago, I talked with a specialist, another specialist in pediatrics, who mentioned how often we take care of the parents, and that’s very important, and we forget to address the children, we forget to listen to them and take care and take time with them. I remember a time when I visited a child in the hospital and I wanted to pay attention to him, and he was about three years old and he was a little timid and didn’t appreciate my visit, so he just refrained from me and resisted my conversation and I said, “Okay, that’s fine. No problem.” I introduced myself and didn’t insist about talking or spending time with him, but his parents were present and obviously I spent some time with them.
I dialogued with them and it was interesting to see that he was very attentive to what was going on, and he was listening to us and just playing around, but going around us. And there was a special toy car that was in the room at the moment, and he entered it and I found it interesting because it was kind of protective. It made a special space for him and with this space, he turned around us and went around and listened to us very discreetly, and he saw that the conversation was quiet and peaceful and went okay. And when I finished the conversation and shook hand with his parents, he went out his car and shook hands also and was very pleased to greet me and that was pleasant. So just this ‘taming time’ was important and being in relationship with him especially was very precious.
Karen-Marie (02:32):
Yeah, that’s a wonderful story. And it sounds like in some ways you were being really attentive to how he was feeling. I wondered if you could talk to us about the importance of acknowledging children’s feelings when they’re seriously ill.
Elaine (02:48):
I believe it’s true at all times and especially when they are sick, as it is true for adults as well, when we are doing spiritual care or pastoral care. I remember this little girl, she was about eight years old and it was one of the first visits I made in pediatrics at the time, many years ago, and she had received a bone marrow transplant. So she was in an isolation room and in order to enter the room, I had to wear the mask, the vest, the cap, gloves; everything you can imagine, I had to wear. So it took a little while and there was a window, so she could see me getting ready to enter, and it was my first visit, so she didn’t know me, and I just opened the door very slightly and introduced myself: “Hello, my name is Elaine, and I come to” and I receive a slipper in my face.
She was so, “No, I don’t want you to visit.” And I say, “Okay, I understand. I hear what you’re saying. I truly hear you, and I will respect that. Okay, I will come another time. So for today, I’m leaving and I will come another time.” When I came to my office, I was supervised by a colleague who knew this little girl, and she congratulated me and said, “What a good thing you have done!” Because actually it’s good to think about the fact that when we are at the hospital, the specialists, the doctors, the nurses, everybody is intruding on our body. And that’s the same with children, and they don’t have necessarily the language or the tools to react or to resist or to affirm their presence and their power, and they are vulnerable about all those invasions. And to have the power to say “No, stop it!”, it was very affirming to her and very good. So it was important.
Erin (04:49):
Yeah, I mean, I think you’re discussing here children’s agency, and I wonder how adults can affirm children’s agency even when kids feel sort of powerless.
Elaine (05:01):
It’s about supporting their choices, supporting their taste, supporting, asking them, or sometimes saying, “Well, there are things that we don’t know, and how do we deal with situation when we don’t know?” That’s another situation. I remember I told you about a story of a little girl. She also was about eight years old and through play, through imagination, through other ways that children express themselves – it’s also a way to affirm them and to offer them opportunities to express what they need to express. This little girl, when I visited her, we knew each other and she wanted to play with me. So I said, “Okay, what do you want to play?” She said, “I want to play the judge.” I said, “Okay, what do you want to play, Mrs. Judge?” She said, “No, no, no. I am the one who says the rules. I am the one who decides, and I want you to say, I want the truth, only the truth,” and all this thing that people say, and it was important to know the context.
She had a chronic disease, a very serious disease with a short life expectancy, and she had complications. So her parents were worried about her. She was alert, she was active, but she was severely ill and the parents would not tell her that she was at risk of shortly dying, and she sensed this, and the personnel, the staff knew that she was aware that something was going on about her, and people were talking about her situation, but she couldn’t know. And so she was asking, “I want to be the judge and promise you’ll tell the truth, the whole truth, all the truth and this stuff.” And I said, “Okay, I promise.”
And she says, “Hum…okay, I would like to play the princess.” And I found that fantastic because when I reflected upon this situation, I realized that she wanted the truth, but then she wanted also to respect her parents. And she knew that there was a secret or a mystery or something that the parents wanted to prevent her from, and she respected that as well. So she had a kind of word, she had her say in this situation, and at the same time, she respected the wish of her parents.
Karen-Marie (07:39):
Part of what I appreciate, Elaine, is how you really focus on the child, and thank you so much for telling us stories so that we can understand the child’s perspective a little better. We really appreciate you sharing with us today. Thanks.
Erin (07:56):
Thank you.
Elaine (07:57):
Thanks to you for this opportunity.
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