In Their Own Voices: Experiences of Children and Adolescents with Cancer




© Springer International Publishing Switzerland 2016
Annah N. Abrams, Anna C. Muriel and Lori Wiener (eds.)Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care10.1007/978-3-319-21374-3_23


23. In Their Own Voices: Experiences of Children and Adolescents with Cancer



Michael H. Tang 


(1)
Department of Pediatrics, The Dimock Center, 55 Dimock Street, Roxbury, MA 02119, USA

 



 

Michael H. Tang





I guess [cancer] is going to affect everybody differently. It all depends on what’s going on in your life. – Scott (Tang 2013)

In 2000, I was a 20-year-old college junior, 10 years removed from completing cancer treatment. Both for academic interest and to place my own experience in a larger context, for my undergraduate thesis in sociology, I wanted to interview cancer survivors from diverse ethnic and socioeconomic backgrounds. This project was approved both by my college and the hospital where all the interviewees were treated for cancer (see study methodology below). To encourage them to speak freely, none of the interviewees knew during the main portion of the interview that I had cancer as a child. Below are some of the topics they described.

The predominant theme that I’m trying to get at is that I had a normal life before [cancer], I wanted to keep the normal life during, and now I want to continue with the normal life—normal being life outside cancer. – Roberto

The word “normal” was used by the vast majority of those I interviewed. It was used to refer to three main types of “normal”: a physical normal (such as having hair after being bald from chemotherapy), a social normal (such as attending school after being hospitalized), and an internal normal (including psychologically feeling “fine” despite the disruptions). The quest for a normal life played out in all areas of these children’s lives, including at the hospital, home, school, within cancer organizations, and in the media.


Hospital


At diagnosis, most of the people I spoke with believed cancer was a fatal illness, despite the actual 75 % cure rates for pediatric cancers. Physicians and staff played a major role in communicating that cancer is not “a death sentence,” destigmatizing the disease through education, emotional support, and encouraging the maintenance of an age-appropriate routine:

[The doctors and nurses] just treated you normal, just like they should. You’re just another person that they’re helping. – Mark

However, several minority and low-income patients reported communication barriers:

Yeah, the doctors tried to tell me what was going on. But they used those terms that I didn’t understand. I was like, “what?” – Dontae

Another adolescent, whose parents did not graduate from high school, summarized that at diagnosis and throughout treatment:

My parents didn’t have enough education about cancer to know and be able to tell me. I didn’t have enough education, no one from my family had that education, so it was hard. We had no knowledge, therefore we didn’t know what to expect. Farheen


Home


The support of family was instrumental for those interviewed. I heard stories of parents providing a shoulder to cry on, cleaning up vomit, holding hands before surgeries, and staying with their children overnight in the hospital. Families also held their own views about cancer. Several people suggested that stereotypes of cancer as a fatal disease weighed heavily on their families, making coping more challenging, perhaps particularly among immigrants:

So people, especially from the Hispanic area, when they would think of cancer, they would think of death. They got that attitude from their parents and they gave the attitude to us… So I thought about death and what would happen after I die. That depressed me a little bit when I was going through cancer. – Manuel

One person described the effect of cancer on his single father, who lost his job after taking too much time off from work to care for his son:

The bad things of having had cancer? Probably more say with my family. Like my dad had a good job, he was happy, he had a girlfriend, and he lost all that because of me. We lost a lot. A lot of time, a lot of money. There were a lot of negative things that came out of it. – Dave

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Oct 31, 2016 | Posted by in PEDIATRICS | Comments Off on In Their Own Voices: Experiences of Children and Adolescents with Cancer
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