Understanding the toolbox: A mixed methods study of attitudes, barriers and facilitators in parental intervention of children’s cancer pain at home

Abstract

Children with cancer experience pain throughout their cancer trajectory. Pain has short- and long-term negative consequences for children physically and psychologically. Children with cancer spend more time at home with their families and less time in hospital. While this has benefits for quality of life, it shifts responsibility for pain management from healthcare professionals to parents. Little is known about parents’ pain management abilities in this setting. This study aimed to understand how parents of children with cancer manage their child’s pain at home. A convergent, parallel, mixed methods design including pain diaries, surveys and interviews was used. Participants were parents of children with cancer on active treatment recruited from one tertiary cancer centre. Each data collection method was analysed separately and then integrated. Parents frequently under-medicate their child’s pain at home. Practical barriers including the analgesic context and children finding medications unpalatable led parents to prefer non-pharmacological interventions. Attitudinal and practical barriers result in parents having an “empty toolbox” of pharmacological interventions. Consequently non-pharmacological interventions are essential to parents managing their child’s cancer pain at home.