Assessing Equity of Family Members’ Roles in Supporting Pediatric Patients Receiving Proton Radiation Therapy: A Retrospective Study of Parent/Guardian Attendance at Clinic Visits

Abstract

The primary burden of receiving radiation therapy falls on the patient. However, families of pediatric patients receiving radiation therapy experience interruptions in their lives and make great sacrifices so their children can receive cancer care that spans weeks to months. There is a paucity of literature on relative burden of care on female versus male caregivers in pediatric cancer care in general, and no prior reports on the relative burden for each in pediatric radiation therapy. The purpose of our study was to determine on whom the burden of bringing pediatric patients to radiation therapy appointments falls. Our hypothesis was that it disproportionately falls on female parents/guardians. With Institutional Review Board approval, the charts of patients less than 18 years old at the time of treatment at a proton center were reviewed. Ninety-four patients treated between January 1, 2021, to July 12, 2022, were identified and their family structures were categorized. Notes from one consultation per patient and a total of 493 on treatment visits were reviewed to identify which caregivers attended these visits. Attendance was analyzed to assess differences between female and male parents/guardians. Mothers lived in the homes of 88 patients, and three other parent-age female guardians living in homes of pediatric patients were identified. Fathers lived in the homes of 76 patients, and two other parent-age male guardians were identified. Seventy-three patients lived with both their mother and father, and 20 lived with other combinations of parents/guardians. No children lived in homes where parents were both male or both female. The family structure of one patient's home could not be identified. Mothers and all female parents/guardians attended 78% and 81% of all clinic visits, respectively; fathers and all male parents/guardians attended 41% and 42% of all clinic visits. However, whereas 55% of consultations were attended by both the patient's mother and father, only 21% of on treatment visits were attended by both. While a majority of patients live with both male and female parents/guardians, female parents/guardians carry a higher burden of bringing pediatric patients to receive their radiation care. Consultations are more likely to be attended by both female and male caregivers, and subsequent visits are more likely to be attended by either. This greater burden of care by female caregivers should be recognized and supported by providers and cancer care organizations.