Caregiver Perceptions of the Transition From Hospital to Home for Children With Cancer

Children with cancer are frequently hospitalized, and the burden of their care ultimately falls on the caregiver. Hospital discharge is a transition when the caregivers can feel unprepared. The objectives of this study were to engage with experienced caregivers of children with cancer to understand their perspectives during the transition from hospital to home and to identify key issues they experience in the discharge planning process.

We conducted qualitative, semi-structured interviews with caregivers of patients recently discharged from the oncology unit at a large, quaternary care, free-standing children's hospital. Demographic data of each participant's child with cancer was obtained via chart review. Transcripts of interviews were coded to find key themes of barriers to quality care.

Twenty-five caregivers participated in interviews. The caregivers' children with cancer had a median age of 9 years (range: 1-17 years) and were predominantly male (68%), White/not Hispanic or Latino (80%), and had leukemia (48%) or solid tumor (44%) diagnoses. The children had a median number of hospitalizations on the oncology floor of 5 (range: 2-20) prior to their caregiver's interview. Twelve key improvement themes centered on caregivers desiring safe discharges that assess both medical and psychosocial readiness and efficient discharges earlier in the day.

Experienced caregivers of children with cancer value safe, efficient hospital discharges earlier in the day when they are well equipped with the needed education, supplies, and medications to care for their children as they make the transition from hospital to home.