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Stepping Stones: For childhood cancer survivors, journey ahead requires continued support for a lifetime's changing needs

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Kristy Devine remembers June 29, 1993, like it was yesterday. She was 10 years old and her parents sat her down to tell her she had cancer. A tumor was growing in the tibia of her left leg.

Devine was fortunate. Though she “equated cancer with death,” she didn’t die. She endured months of chemotherapy, a nine-hour surgery in which part of her bone was removed and replaced with cadaver bone, and side effects of hair loss, nausea, anxiety and anger.

Barbara Jones
Dr. Barbara Jones, assocaite professor in the School of Social Work, works to better the lives of children being treated for cancer and their families.

A year later the cancer was gone, but the experience of having had it would never disappear.

“At first I delved into a normal sixth-grader’s life and never wanted to discuss my experience,” she says. “But as I grew older, I recognized that this experience has shaped me in a number of ways.”

Some of those ways are positive. Devine gains strength from knowing she faced a difficult battle and overcame it, and today she works for Cure Search, an organization dedicated to helping children with cancer. But she also suffered as an adolescent girl who had lost her hair and struggled with her self-image. And she has a permanent scar on her leg to remind her of the disease.

“There are all these emotions that go with the word cancer,” she says. “You can’t just shut the door on that chapter. There need to be stepping stones back into a normal life.”

Dr. Barbara Jones, associate professor in the School of Social Work, is working on improving that path for young people who’ve been treated for cancer.

Jones spent many years as a pediatric oncology social worker, working with children with cancer and their families. She provided counseling, helped with communication and acted as an advocate for families in the often confusing medical world. She became a researcher to determine how to improve the care of children with cancer and their families, including better understanding the long-term needs of children who survive.

Most children do survive. Advances in treatment have improved prognoses dramatically since the 1970s and ‘80s. In 2012 of the more than 12,000 children diagnosed with cancer each year, about 80 percent will be cured.

That’s the good news. The more complicated news is that the survivors—of which there are more than 250,000 in the United States—have needs that continue long after the cancer treatment ends.

Of the 12,000 children diagnosed with cancer each year, about 75 percent will be cured.“What I was seeing as a clinical social worker working with children with cancer and their families was that children who survive had psychological and physical concerns that needed continued attention,” says Jones, who served as president of the Association of Pediatric Oncology Social Workers from 2006-2008. “I would meet with them after their treatment was done and they would still be dealing with a lot of struggles.”

Those struggles include developing feelings of isolation, experiencing a lack of peer support and missing out on critical developmental stages. They also include the hard work of making meaning of such a difficult experience.

Jones is conducting studies with childhood cancer survivors to understand how they see their experience and what their unique needs are after they leave the hospital. She plans to create interventions and programs that help survivors build their lives and give social workers the tools to assist them.

A core component is striking the tricky balance between having the experience of surviving cancer honored, and yet also allowing children to have as regular a life as possible.

Tim Woods and his mother, Marietha
Tim Woods and his mother, Marietha, are two of the people profiled in the landmark documentary “A Lion in the House,” an intimate series that follows five children as they fight cancer with the help of their families, nurses and doctors over a span of six years.
Credit: Steven Bognar/ITVS.

“Kids who have had cancer need to be allowed to live as normally as possible,” Jones says. “But they don’t want to have their experience ignored.”

Creating opportunities for interaction with peers who have been through experience is critical. Children want to engage with neighbors and classmates, but they also know that something has changed for them.

“For some kids, hearing kids at school talk about something as trivial as a ‘bad hair day’ really sets them off,” Jones says. “They may discover that their value system is different from kids who haven’t been through the experience.”

Survivors also have more pragmatic needs. For example, they need to understand their treatment history. In many cases, parents make the treatment decisions for children, but as the children enter adulthood, they may need more specific information about what happened to them.

This is especially important because many survivors face further medical problems, ranging from infertility to heart disease to learning and memory problems. In fact, nearly 75 percent of survivors of childhood cancer will develop other chronic health issues.

Jones also recognizes that there may be cultural differences in understanding and surviving cancer.

“The meaning of illness is very culturally defined,” Jones says, “and health disparities do exist. So even when we have a broad understanding of what childhood cancer survivors need, do we know how those needs vary for children who are underserved, such as African American and Latino kids?”

Jones conducted a qualitative study of young Latino adults who had survived cancer in adolescence, asking them about their treatment experience, their survivor experience and how they define themselves as cancer survivors. The importance of family and spirituality rang through their responses.

The Institute for Grief, Loss
and Family Survival

Institute for Grief, Loss and Family Survival logoWith Dr. Elizabeth Pomeroy, Jones co-directs the Institute for Grief, Loss and Family Survival in the Center for Social Work Research. The institute seeks to investigate and address the needs of children, adults and families that have experienced grief and loss.

“We want to pay more attention to issues of grief and loss and families surviving,” Jones says. “What most families that have experienced a loss would say is that they don’t get over it. They are changed by it. It gets incorporated into who they are.”

Bridging the gap between practice and research, the institute has held education events in the community and hosted a conference on grief in the family context.

“We hope to raise awareness that grief is something we can talk about,” Jones says, “and that it’s pretty universal.”

“There was a strong theme of gratitude. That was pretty powerful,” Jones says. “A lot of these young people said that they feel gratitude for the support they received from family or care providers.”

She also said that many of the interviewees don’t see themselves as survivors, a weighty term. They think the younger kids who got cancer very early were the real survivors. They felt protective of those kids.

Jones interviewed a survivor who was training to be a pediatric oncologist, like the doctors who had treated him. She also interviewed survivors who didn’t have a sense of how to promote their own health after having had cancer, a situation she’s slated for further research.

Overall, she is clear that having had cancer changes kids and that the more we understand how, the better prepared we can be to create programs and interventions that improve their lives.

“The ultimate goal is to make things better for these kids and to have some evidence base around psychosocial care for kids who have had cancer,” she says.

Although she teaches at a university and does research, Jones still thinks of herself as a clinician. She interacts directly with children and their families and hasn’t forgotten how difficult their circumstances can be.

“I’ve had parents say to me, ‘I don’t know how to tell my child this,’” she says. “I’ve sat with parents in that situation and seen how hard that is for the parent, the doctor, for everyone.”

Because of those experiences, Jones doesn’t limit her work to survivorship. She also wants to improve care for children who are facing the end of life.

One way of doing that is to make sure that social workers in pediatric oncology are well trained. In the clinical setting, Jones says she learned most of what she could offer children and families while at the bedside. Her education could have better prepared her.

Today she’s developing curricula based on studies conducted with pediatric oncology social workers providing end-of-life care to children. The social workers report that children’s greatest needs at the end of life are for pain control and symptom management, and that social workers need to be better trained for that reality.

Forrest Schoenberger
As a social worker Jones worked with Forrest Schoenberger (Aug. 23, 1998-Feb. 9, 2002), who was diagnosed with a rare pediatric liver cancer when he was just two years old. Her experiences with children like Forrest inspire her to work to improve support for children with cancer and their families.

“I think we’re seeing a change in the field, with more of a focus on palliative and end-of-life care,” Jones says. “We’re trying to infuse the caring throughout. That’s what families need, and what they remember, that someone was compassionate to them and their kids.”

Jones is co-investigator on a National Cancer Institute grant to train oncology social workers to better meet the psychosocial needs of cancer patients. The project, called the Excellence in Cancer Education and Leadership (ExCEL), is based on the recent Institute of Medicine report, Cancer Care for the Whole Patient.

Jones is also a co-investigator on a study at Dell Children's Medical Center of Central Texas (DCMC), looking at the needs palliative care needs of children and families. Palliative care is a philosophy of care that aims to reduce suffering and enhance quality of life regardless of the outcome of the treatment.

Julie Greathouse, director of Social Work at St. Vincent's Hospital in Sydney, Australia and former pediatric palliative care social worker at DCMC, says Jones was instrumental in the development of the pediatric palliative care team at DCMC. She helped the team focus on the important family caregiver needs. Jones has conducted needs assessments and helped the hospital design educational plans. Greathouse and Jones are both faculty members with the Initiative for Pediatric Palliative Care and delivered pediatric palliative care education to interdisciplinary teams at DCMC.

“Palliative care affects the whole family,” Greathouse says. “It involves parents and grandparents, as well as doctors, nurses and social workers. And with children, the question of how they can participate in their care and decision-making is complicated.”

A social worker may be faced with the situation Greathouse faced in caring for a 16-year-old boy with leukemia who had been through two bone marrow transplants. He and his family had to decide whether to undertake a third transplant or to discontinue treatment.

“Part of what we do is help the child have a voice,” Greathouse says. “We worked with him and his family to set goals and to hear what he had to say. We made sure all the options were discussed, even though they were difficult to discuss.”

In the end, childhood cancer—even with improving prognoses—is difficult to discuss.

“When a child has cancer,” Jones says, “everyone is affected at a very deep level. It’s never easy.”

For Jones, that’s the best reason to continue her research. The more we understand the needs surrounding childhood cancer, the better care we can provide. That’s good news for children facing the disease and for those, like Kristy Devine, who have survived and continued on with their lives.

BY Vivé Griffith

Updated October 29, 2012 by Tim Green

PHOTO of Dr. Jones and banner photo: Christina Murrey

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