Table 5 Treatment-related experiences of patients and their families

Treatment-specific experiences of patients (n = 7)

Having to miss school, long waits in the hospital, not understanding what is going on, treatments becoming part of daily life

Emotional impacts of treatment on patients (n = 4)

Worrying about others, stress, enduring the collection of cerebrospinal fluid

Treatment experiences of family (n = 7)

Positive experiences (n = 3): comfortable waiting spaces, smoother or shorter treatments, coordinator providing support, progression to an easier experience

Negative Experiences (n = 4): needing to leave work for treatments, financial burden, staying overnight in hospitals, long treatment sessions, difficulty seeing child suffer, concerns over radiation exposure

Family/sibling experiences (n = 3)

Family and siblings looking after the patient, siblings need to stay with other family members, caregivers attempting to spend more time with other children

Emotional impacts on family (n = 2)

Stress of caregiver burden (time and finances), uncertainty about the future