TABLE 1

Bereaved Parents’ Definition of Hope

Definition
Definitions of hope in the face of a child’s advancing illness and approaching end of life“Hope is the antithesis of despair, not reality.”
“To be hopeful is a function of the heart and a decision of will, to be realistic is merely a function of understanding the most likely outcome.”
“Hope is a choice, it is a decision to not give up. Hope is not about outcome, it is about the fight.”
“Hope means I can be here even though here is an unthinkable place. It is hope that provides the strength that is needed to face dire circumstances.”
“Hope was my vehicle to cope. I believe that without hope in something, there is no point to anything.”
“We are living every day as if it could be [my child’s] last but also as if he might live forever. That was hope.… In the darkest places of worry, sadness, and fear, there was the tiniest bit of light I would call hope.”
3 major themes underpinning variants of hope
 Cure“Hope that the tumor was benign.… Hope that even in the face of tumor regrowth and the end of cancer-directed therapy that somehow she would survive.”
“When he relapsed just 2 1/2 months after going home, my hope was that a bone marrow transplant would cure him.”
 Life outside of illness or return to normalcy“During [my child]’s illness, my hope was…that we would go home so he could get his driver’s license, go to the prom, graduate high school, go to college, get married, have children, and live a long happy life.”
“[My child]’s desire to graduate high school, have a relaxing summer vacation, and get some time in college.”
 Comfort or no suffering“My hope was that he would not experience suffering or be afraid.”
“It was in the course of her suffering…in the middle of her limitations…that we hoped for her to be freed from it all.”