To help kids deal with cancer

Star: WHEN Suzanie Adlina Mat Saat joined the National Cancer Society Malaysia (NCSM) as a marketing manager in 2004, she discovered that there were areas about coping with cancer that needed to be addressed.
This led her to embark upon a PhD on investigating the information needs of children of a patient with cancer.
“I resigned from my job in 2005 and with a loan from Mara, I left to do my research at the Loughborough University, London,” she relates.
Back in Kuala Lumpur now to do her research work Suzanie, or Suzie as she is better known, is looking for survey respondents for her research paper.
“I feel very strongly about this issue as I have two children (girls, one aged five years and the other five months) as well and I was wondering how I would pass the information down to them if this illness should affect us,” she explains.
Suzie, 31, has had personal experiences of cancer, as her two grandmothers died of throat cancer when she was younger.
“They both suffered throat cancer when they were in their 60s and the family only discovered it in the later stages of the disease,” she says.
Thus, she understands the importance not only of creating as much awareness of cancer as possible but also the need to know how to talk to family members, especially children, about it.
While working at the NCSM, Suzie noticed that many cancer patients who visited its Resource and Wellness Centre in Jalan Raja Muda Abdul Aziz, Kuala Lumpur would bring their children along.
The children would play together, and it was while watching them that Suzie wondered how much they knew about their parent’s condition.
It was from her research that Suzie found that children are often the least informed when it comes to sickness in the family, particularly when it is the parents that are afflicted.
Many parents are so concerned about their own health needs at the time that they unknowingly push their children aside, she says.
It was then that she realised the need to be more pro-active in helping people take the first step in creating awareness between parents and their children.
So Suzie decided that she would do her PhD studies on investigating the information needs of children of a parent with cancer.
Listening to Suzie as she explained the basis of her research, one could sense that she is very passionate about the cause and that it was not merely a paper chase for her.
“There is this syndrome called family protection syndrome that exists among people who want to shield or protect their loved ones from fear or hurt,” she says.
(Family protection syndrome is a term coined by Joan Hermann, the director of Social Work Services at the Fox Chase Cancer centre in Philadelphia, United States.)
“But what these people do not realise is that there is backlash from this so-called protection, which can be very harmful to the children.”
A host of misconceptions can arise, such as the children blaming themselves for what is happening to their parent, Suzie adds.
“They can be very angry or hurt that their parent does not talk to them about the illness, and they can even hate hospitals or authoritative figures such as doctors because they think these people are the cause of the sickness.”
Suzie's research has received favourable response, and she even won an award for her research proposal in a competition at Loughborough University last year.
She is using the Participatory Action Research (PAR) methodology to assess, understand and develop solutions to cultural issues that will hopefully result in information that is more complete and as accurate as possible.
This year, Suzie also managed to obtain a fellowship from Universiti Sains Malaysia under its Academic Staff Training Scheme (ASTS). She will be funded for a year under this programme.
What makes her work even more important is that information on how to help children understand and cope with their parent's cancer is not widespread even in other countries.
In the United States, the National Cancer Institute has published only a short paragraph on information needs of children of a patient with cancer, and that was in 2000.
Another book for children deals about breast cancer, which was published by breastcancer.org in 2004.
There is also a graphic novel by comic artist Harvey Pekar and Joyce Brabner titled Our Cancer Year, which was published in 1994. The novel illustrates Pekar's fight with cancer.
“The illustrations make this book easy for children to read and understand,” says Suzie.
Unfortunately, this and the other publications are set in the Western context and thus do not have cultures and values that Malaysian children can relate with.
“We need to have a guide that's suitable for the Malaysian context,” says Suzie.
To ensure that her research will benefit cancer patients, children and the cancer fraternity in Malaysia, Suzie would like to get feedback from cancer patients who have children.
“I would like to have as much response as possible from individuals who have experienced cancer and who have children,” she says.
“I want them to contribute to the project so that the end result, which could be in a form of a comic, video or book, will be able to reach out to provide the much needed support for the children.”

Suzie can be reached at mssuzieadina@yahoo.com