A new study by researchers at the University of North Carolina Gillings School of Global Public Health may guide the development of methods that will help caregivers and peer counselors provide effective advice to patients undergoing an arduous cancer treatment without undermining the patients’ coping efforts or worsening their emotional distress.
[Photo: Ms. Yael Symes; Drs. Clare Barrington, Christine Rini and Edwin Fisher]
Ms. Yael Symes, doctoral student in health behavior at UNC, is first author of the study, “Advice to Patients Undergoing Stem Cell Transplant: Content Analysis of Survivor Peer Support Narratives,” published online May 29 in the Journal of Health Psychology.
Faculty co-authors in UNC’s Department of Health Behavior are Dr. Christine Rini, research associate professor; Dr. Edwin Fisher, professor; and Dr. Clare Barrington, associate professor. Dr. Rini also is a member of the UNC Lineberger Comprehensive Cancer Center.
The study is a qualitative analysis of advice offered by survivors of hematopoietic stem cell transplant (SCT), a long, painful and often life-threatening procedure to save the lives of people with hematologic (blood) cancer, to patients currently undergoing the treatment.
Much research has shown that patients benefit from learning about the ways others have experienced the same illness, treatment and recovery. Some studies, however, suggest that information shared by survivors might be perceived as misleading, confusing or distressing to someone currently engaged in a difficult treatment. The current study had two aims – to describe the types of advice that SCT survivors shared with SCT recipients and to evaluate how survivors differed in perceiving the helpfulness of advice they received and wrote about.
Ms. Symes and colleagues analyzed written narratives by 59 survivors of stem cell transplant, ages 19 to 79 years, mostly white, college-educated women, who had undergone SCT within the two years prior to the study. The average length of their narratives was 569 words.
Nine frequently shared categories of advice emerged, including “Be your own advocate,” “Have someone you can rely on,” “Show compassion toward others,” “Think positive,” “Take things one step at a time,” “Identify things that bring you peace,” “Exercise,” “Follow guidelines,” and “It gets better.”
Thirty-six participants (61 percent) expressed the need for transplant recipients to advocate for themselves by asking questions, getting second opinions, and asking for help, when needed.
Thirty-one (52.5 percent) described how critical others were to their well-being during treatment and recovery, notably online support groups. Seven survivors (11.9 percent) described being disappointed by friends who withdraw from relationships because of fear or confusion about how to help.