Background: Children with cancer experience pain throughout their cancer trajectory, which has short- and long-term negative consequences, both physically and psychologically. Treatment advances have increased ambulatory care, enabling children to spend more time at home. This leads to a shift in pain management responsibility from healthcare professionals who have experience in pain management, to parents, most of whom do not. Little is known about parents’ pain management abilities at home.
Aim: To understand how parents of children with cancer manage their child’s cancer pain at home.
Methods: Guided by the Theory of Planned Behaviour, a convergent, parallel mixed methods design was used for the primary purpose of complementarity. Participants were parents of children with cancer on active treatment, recruited from one tertiary cancer centre in the South of England. Convenience sampling was used to recruit participants to complete surveys and pain diaries. Purposive sampling was used for interviews. Surveys measured parents’ attitudes toward pain medications and their misconceptions regarding pain assessment. Pain diaries gathered baseline data on pain intensity, cause, location, and parent interventions at home. Interviews enabled deeper understanding of children’s pain manifestation, as well as parents’ pain assessment and interventions. Surveys and pain diaries were analysed using descriptive and inferential statistics. Thematic analysis was used to analyse interview data. Each dataset was analysed separately and then integrated.
Results: Integration of the datasets revealed that most of the time, children were not in pain at home. However, most children experienced episodes of clinically significant pain. Parents combine different types of information to effectively assess their child’s pain at home. Parents frequently under-medicated their child’s pain but used a variety of non-pharmacological interventions to manage their child’s pain at home. Paracetamol, ibuprofen, codeine, and morphine administration all have undesirable consequences for children with cancer who frequently found pharmacological interventions to be unpalatable. This left parents with an “empty toolbox” of pain management interventions which they restocked with non-pharmacological interventions.
Contribution to knowledge: Using mixed methods, this research took a holistic approach to investigating parents’ management of children’s cancer pain at home. This research suggests children with cancer have heterogeneous pain trajectories but due to the unpredictability of pain at home, it is important all parents of children with cancer are prepared for their pain management role. Parents’ use different types of information to assess pain. This constitutes a bundled approach to pain assessment. This approach may be helpful in clinical and research contexts. This research is the first to outline practical barriers to pharmacological interventions and the subsequent importance of non-pharmacological interventions for parents managing their child’s cancer pain at home.