Physical

Most children were relatively well, with minimal symptoms or treatment side effects. Nonetheless, level of physical functioning emerged as a significant issue for parents and children with the key distinction being whether or not children were able to perform their “normal” activities.

Performing “normal” physical activities at the same level as before the illness was a main theme and included walking, eating, and playing. One mother said: “He is still doing everything he was before.” One father stated: “He is running around [and] everything, nobody can tell he is sick.” In describing the impact of illness on his activities, one child stated that “It hasn't really changed at all.”

Limited physical functioning, on the other hand, emerged as a theme that reflected serious concern over the child's deterioration, which had major implications for HRQOL. One father said: “We've described how bad he gets, which is paralyzed so he can't even lift [his] head to move his ear.” Children also recognized how the illness had affected previous physical capabilities, as one child explained, “I can't run that fast [anymore].”

Psychological

Greater richness was found in this domain, with five areas identified across parents and children: maintaining normalcy, maintaining control, illness awareness, awareness of body changes, and perspective taking.

Maintaining normalcy. Efforts to maintain life as normal as possible appeared consistently throughout child and parent transcripts. This theme reflected the importance of children being perceived as similar to their peers. One child said: “I am a normal boy.” A mother stated: “We're able to live a pretty normal life.” A father put it best: “He just wants to be a 7-year-old boy and do armpits and all that stuff.”

Maintaining control. This theme captured families' efforts at retaining some sense of control within the health care system. One mother said: “[We] call all the shots. The doctors are a part of our team but they don't call the shots.” One child said: “It's the doctors who always make the choices … but they ask my mom to ask me if I wanted to live or not.”

Illness awareness. This theme was identified only in children's interviews. One child expressed his understanding as follows: “It was just another cell that went wild.” Their personal journeys with illness can make children more in tune with their bodies. One child sincerely expressed “I knew I was dying,” and another explained that he “had a feeling … it would one day come back for some reason.”

Awareness of body changes. This theme was evident in parent and child transcripts, and captured how noticeable physical changes can impact the child's sense of self. Aware of her daughter's negative body image, one mother commented: “She hates how she looks. She just hates how she looks.” Children verbalized what appeared as a gradual change in self-concept over the course of the disease: “If people see me, who cares? I'm bald, that's the way I am.” In referring to his hearing aids, another child asserted that he felt “pretty happy about them.”

Expressing the perspective of others. This theme, identified only in children, captures their ability to offer insights into the emotional state of caregivers. One child told how his mom “worries a lot about me.” Another reflected on how his parents might be dealing with his illness: “[They are] kind of sad a little bit.” Referring to his parents and doctors during a frightening episode of his illness, one 7-year-old child recounted: “When I was dying they were scared.” (Note: This child had been close to death but then improved).

Social

Within this domain, maintaining family relationships was a major theme for parents and children expressed in three areas: open information sharing, limited sharing of information, and a focus on enjoyable family activities.

Open information sharing was noted in some families around issues of disease prognosis and feelings. One father described his approach to communication: “We talk about everything with our kids, to the degree which they want to talk about it.” Similarly, a mother explained: “We always tried to include [him] in any decision making.” From the perspective of the sick child, open lines of communication instilled a sense of confidence and trust: “My mom was honest with me,” and “My mom usually explains everything.”

Limited sharing of information. Difficult issues such as poor response to treatment and death and dying were less likely to be shared within some families. One father said: “If I let him know too much, he might get this fear and in turn it will affect his immune system.” A child also withheld information from his mom: “I don't want her to worry.” Nonetheless, parents and children often had a sense of each other's thoughts and feelings. Reflecting on how his parents were coping, one child said: “They never, like, get upset around me.” Parents also struggled with knowing how much to share. One mother said: “I don't talk about it with her, but I don't know if I'm right to not discuss it with her, but I don't know what to really say to her.” Similarly, a father expressed: “I didn't tell him very much detail … I don't know if this is right or wrong.”

Focus on fun and enjoyable family activities was probably the “safest” way families expressed their knowledge that their time together was limited. A mother explained: “We want to have as much fun as we can in the time we have together.” A father said: “We are making sure we've got some real fun stuff planned…” Focusing on enjoyable activities was often how children coped with their illness—simply put: “I just have fun.”

Spiritual

Both parents and children thought about the meaning of life and the existence of a power beyond themselves. Within this domain, three subthemes emerged: maintaining hope, spiritual connection with God, and finding meaning in life.

Maintaining hope was consistently seen across time and between family members, who conceptualized hope as giving them strength in the face of uncertainty. One child explained: “You can always believe in hope.” One father viewed hope as “what makes us all survive,” and another as something “you can't live without.” Hope acquired a variety of forms, particularly in parents. One mother described this best: “I think you have different hopes … now, I hope she'll die in peace.”

A spiritual connection with God was usually associated with belief in a supportive presence. One mother said: “I think God is a God of compassion and love … sometimes life sucks, but you don't have to be alone.” Similarly, a father shared: “I see the love of God big time.” Spiritual beliefs often helped parents accept death as an outcome as one father expressed: “If you are truly a Christian, you don't think death is such a bad thing.” Children often associated spirituality with magic healing properties: “People have, like, energies inside of us … to, like, cure ourselves.” A spiritual connection that reflected direct anger or apathy at God, or toward religion and spirituality, was noted in two mothers. One mother viewed God as “the devil himself,” and elaborated: “I don't really find comfort in [religion].” Another mother explained: “My religious beliefs have become less personal.”

Finding meaning in life was another common theme. Many reflected on the illness experience, and concluded that their family learned from it. One father said: “Maybe we got something right in trying to have happiness through the difficult times.” A mother described a meaningful life as one “that's worth living with the people you love.” From a child's perspective: “You make life what it's supposed to be.”

Hope for a Cure

No amount of realism can take away the hope that remains even in families of children at the end stage of life, and the decision to enroll in Phase 1 trials illustrates well the dichotomous interplay between hope and reality. Even though families are aware that Phase 1 trials do not test anticancer drug effectiveness, they still identified “hope for a cure” as the main reason for participating. One mother viewed it as “another chance for a cure,” and another felt her daughter's participation would “keep her stable for a little longer … she might be old enough that she can have radiation.” Fathers echoed these views: “It works in animals as a cure, not just as a delay,” and “Right now I see a cure for this disease so close that I'd do it just to buy some more time.” In children, this was the only theme that factored into their decision to enroll in these trials. One child viewed Phase 1 trials as “giving someone another chance,” and another recounted: “I had been hearing things about people with brain tumors that actually got cured by it.”

Continuing Care

Some families believed enrolling in these trials would lead to continuity of care, and opting for no more treatment would not. Thus, one father felt his son would “get better attention.” One mother explained: “I was worried that … her health care might be compromised [if she did not participate].”

Focus on Quality of Life

In weighing the decision to enroll in Phase 1 trials, maintaining quality of life was of the utmost importance. One mother said: “I couldn't do something that was going to hurt the person she is,” and another offered that her family would try anything “as long as it does not hurt him.”

Ambivalence/Uncertainty

This theme reflected the difficult decision parents had to make and the doubts they experienced as to whether Phase 1 trials were in the child's best interest. As one mother put it: “I just decided … you're damned if you do … damned if you don't.” Similarly, another mother expressed: “Sounds too good to be true, but what the hell.”