Looking at the Effect on Patient and Family Distress and Health Behaviors
Adolescents and young adults (AYAs) who have cancer typically fare worse than either pediatric patients or adult patients during and after cancer treatment. They also have inferior psychosocial outcomes, meaning they are more likely have anxiety and depression, and less likely to go to college, hold a job or meet other societal milestones.
Pediatric oncologist and bioethics faculty member Dr. Abby Rosenberg is studying whether it is possible to combat these poor outcomes by teaching her patients how to be resilient. Over the past several years, Rosenberg has asked patients during the first year of their cancer experience how they define resilience, and has explored what makes them more or less resilient. The patients themselves identified the following traits as core components of resilience:
- Stress management
- Goal setting
- Positive reframing (turning a negative focus into a positive)
- Benefit finding (finding new meaning, purpose, or benefit from difficult experiences)
The training that the patients receive over a 6-week period aligns with recommendations from national organizations to standardize “whole patient care.”
“‘Thriving’ demands whole-patient care from the beginning. We want to see these adolescents and young adults thrive during and after cancer treatment,” Rosenberg says.
There are special challenges to working with AYAs – they are at an age when executive function (making decisions, deferring gratification, controlling impulses) is not yet fully developed. Rosenberg, though, has found AYAs to be receptive to this training. All the AYAs who have been in the pilot phase of the project have reported favorably. “We designed this to be concrete and doable for patients and families. What we’ve found is that they also think it is a helpful resource,” notes Rosenberg.
“Health is determined not only by biomedical processes, but also by patients’ and families’ emotions, behaviors and social relationships. Our research focuses on understanding, supporting and even strengthening patient and family coping. We think doing so will ultimately improve their long-term physical, emotional, and social well-being.”
For more information, see Resilience and psychosocial outcomes of caregivers of children with cancer. Pediatric Blood and Cancer; 61 (3): 552-557; 2014.
Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, emotions, and the skills of talking about progressing disease with terminally ill adolescents: A review. JAMA Pediatrics. 2016 Dec; 170(12): 1216-1223.
Straehla JP, Barton KS, Yi-Frazier JP, Wharton C, Baker KS, Bona K, Wolfe J, Rosenberg AR. The benefits and burdens of cancer: A prospective longitudinal cohort study of adolescents and young adults. J Palliat Med. 2017 May;20(5):494-501.
To teach adolescents and young adults coping techniques to help them increase their resilience – as defined by each individual.