Balancing tensions between caregiving and parenting responsibilities in pediatric patient care

In pediatric chronic care, the treatment process affects not just the child’s physical health, but his or her psychosocial and emotional development. As a result, caring for pediatric patients with a chronic illness such as cancer is becoming a daunting task for parental caregivers. They are expected to fulfill the caregiving needs of managing the child’s health condition and treatment while also meeting the parenting needs of translating knowledge, communicating about the illness, and making numerous decisions on a daily basis for their sick child due to the child’s young age. Drawing on 15 semi-structured interviews, we examined parental caregivers’ perspectives on raising a child while also managing the child’s health. We identified three tensions that participants encountered as they balanced parenting and caregiving responsibilities: (i) tension between ensuring the child’s health and safety and attending to the child’s social development, (ii) tension between disclosing health-related information and minimizing the psychological burden on the child, and (iii) tension between rewarding the child’s cooperation in treatment and maintaining discipline. Together, these tensions reveal an ongoing process through which caregivers assess and interpret their actions and responsibilities relative to anticipated consequences across multiple time scales. These findings reveal opportunities for sociotechnical systems to account for and support this active process of iterative cycles of assessment.