Intervention helps parents cope, find ‘the good in the bad’ after child’s cancer diagnosis
For parents, there may be no worse news than a diagnosis of cancer in their child. In an instant, such a diagnosis can render parents powerless to fulfill one of their most basic obligations — to protect their child.
The anguish felt by a parent in this situation can lead to distractedness, negative thinking and inadequate self-care, which, in turn, can make it harder to maintain everyday parenting responsibilities.
“One in seven parents of children with advanced cancer has such high distress that he or she can’t adequately care for the patient or other children in the home,” Abby R. Rosenberg, MD, MS, MA, director of palliative care and resilience research at Seattle Children’s Research Institute, said in an interview with HemOnc Today. “Although hospitals like ours provide social work support to all parents of children with cancer, the social workers are necessarily focused on the child-patient and the whole-family needs. They do not routinely provide mental health services to parents.”
A study conducted by Rosenberg and colleagues at Seattle Children’s showed parents of children with cancer derived strength and resilience from one-on-one support sessions with a novel intervention called Promoting Resilience in Stress Management for Parents (PRISM-P). Skills imparted through PRISM-P are rooted in previous research on coping with adversity.
Rosenberg spoke with HemOnc Today about the origins of PRISM-P, its impact on parents and the potential benefit of such coping skills for the entire family.
Question: What inspired the development of PRISM -P?
Answer: When we first started developing a program to build resilience, we debated whether to start with teenaged patients or parents. We knew that parents of children with serious illness were highly distressed, and that medical systems often struggled to meet their needs. What makes it harder is that parents who need support must take the time to identify a counselor and leave the hospital to get to them.
We started with teens, because we knew that they, too, were at high risk for distress and we wondered if they had not yet “learned” to be resilient. We assumed that parents might have learned some life-coping skills — adaptively or maladaptively — and assumed that more kids would be starting from zero.
It turned out for every teen who got PRISM, a parent asked for it, too. Or, the teen would say, “Hey, my mom might like this!” or something suggesting that we could help parents after all. So, we adapted the program that had worked so well for teens and tried it for parents.
Q: Having a child with cancer is arguably one of the most difficult life challenges imaginable. How is PRISM -P specifically designed to address this situation?
A: We designed PRISM to be relevant to all illness experiences. It was originally built based on more universal psychological theories about how people handle stress and adversity. My partner and PRISM’s co-creator, Joyce P. Yi-Frazier, PhD, is a health psychologist. She was working with patients with diabetes and I was working with patients with cancer. We realized very quickly that the ideas we had come up with applied to one another’s patients. We tried it in both clinics, and teens and parents in each group loved it equally. We’ve also tried it in the cystic fibrosis and craniofacial clinics here at Seattle Children’s, and we’re working on expanding it to other parents and patients each day.
Q: The four skills taught through PRISM-P are stress management and relaxation, goal setting, cognitive restructuring and meaning making. Can you describe each of these?
A: Stress management, as we teach it, is about calming your mind and becoming aware of your stressors and worries without judgment. Goal setting focuses on setting specific, measurable, actionable, realistic and time-dependent goals so that folks can track progress and maintain a forward-looking perspective. Cognitive restructuring focuses on quieting negative self-talk and worry and reappraising a situation so that it is manageable. Meaning making is perhaps the simplest and, to me, the most important. It normalizes the “hard” while identifying a gratitude, purpose, legacy or meaning. We say to people, “This can be really difficult. Can you think of a good thing that has happened because of it?”
Q : How can parents find meaning in a situation like this and challenge negative self-talk under such difficult circumstances?
A: It seems so hard, but the thing I love about these two skills is that they don’t have to be complicated. A gratitude like “Sarah bought me coffee this morning” or “I fit in a 10-minute walk outside” can be just as important as “I am spending all this time with my son” or “his doctors said he was in remission!” Positive psychological training like this can powerfully change mood, and even internal stress biology, making it easier to do it all again tomorrow.
Q: What did your study find in terms of the efficacy of these approaches?
A: We asked a question about PRISM-P’s delivery — does it work for parents if we teach it in person, in a group or not at all? We found that the in-person, one-on-one teaching improved parents’ sense of personal resilience, and they were better able to identify benefits — the good in the bad. One parent said to me, “PRISM helps parents know they can come back tomorrow. That is perhaps the most important thing to know when all else seems to be crashing down around you.”
We did not see an effect in the group program. There are several reasons for this, including the fact that groups were very hard to schedule. As a result, the groups were small and inconsistent, so I don’t think we taught the skills as effectively in that setting.
Q: The concept of finding the good in the bad seems p owerful. Is it helpful for parents to redefine what they consider a “victory” in this struggle?
A: I generally don’t use the term “victory” or any other war metaphor for cancer, because it implies you can lose. There is no losing here; everyone has hard days and everyone has good days. My hope is that we can tip the scales in favor of good.
Q: How does this program ultimately help the children of these parents?
A: We don’t know the ultimate impact on the children. We plan to study that now that we know we can help parents. My vision would be that every parent or caregiver of adult-aged patients gets this kind of support, too. It is simple and scalable, and I think it can do a lot of good for people who care so much for their loved ones that they have less room to love themselves. – by Jennifer Byrne
For more information:
Abby R. Rosenberg, MD, MS , MA, can be reached at 1959 NE Pacific St., Seattle, WA 98195.
Rosenberg AR, et al. JAMA Netw Open. 2019;doi:10.1001/jamanetworkopen.2019.11578.
Disclosure: Rosenberg reports no relevant disclosures.