Pain experience and management during childhood acute lymphoblastic leukaemia

Abstract

Background
Acute lymphoblastic leukaemia (ALL) is the most common childhood cancer. While most children with ALL survive, pain experienced during treatment is difficult for the children and their family to endure. The aim of this programme of research was to investigate the experience of pain and its management during ALL from the perspective of the child, parents and clinicians.
Methods
A mixed methods approach was used across two studies. In Study 1, perspectives of parents, nurses and doctors in a Danish sample were captured in 16 semi-structured interviews analysed using thematic analysis. In Study 2, six children completed daily diaries of pain ratings using a mobile application during the first three months of their treatment for ALL. The findings from interviews and pain diaries were triangulated through interpretation.
Results
Full data from pain diaries were available in 57.8 % of the sample. In average across all registrations, children reported being in pain 54% (SD =28.77, range 0-100%) of the time. Mean pain intensity was 3.25 (SD=3.4, range 0-10), where 0 was no pain and 10 was the highest level of pain. Paracetamol was reported in 46% (SD= 29.48, range 0-95%) and morphine in 14% (SD= 9.67, range 0-26%) of registrations. Only one participant used other analgesics (tricyclic antidepressants). Non-pharmacological pain relief methods included distraction in 42% (SD= 35.49 range 5-100%), massage in 25% (SD= 34.47, range 2-100%) and a heating pad in 3% (SD= 3.81, range 0-9%) of registrations. Agreement between families and clinicians in symptom severity was more concordant for physical symptoms than for anxiety and emotional distress. There were no differences between mothers’ and fathers’ perspectives of their child’s pain. Parental informational needs were high and family empowerment required individual tailoring. Parents associated opioids with severe illness, whereas non-pharmacological pain relief strategies gave a sense of control and normality. Parental anxiety and child’s past pain experiences had a major influence on pain assessment and management.
Conclusion
Pain trajectories in childhood ALL are unique individual experiences. The findings have implications for the need to place a greater emphasis on incorporating the child’s voice and in developing broad relief strategies when managing ALL pain.

Date of Award	8 Sept 2021
Original language	English
Awarding Institution	University of Bath
Supervisor	Abbie Jordan (Supervisor), Julie Turner-Cobb (Supervisor) & Hannah Family (Supervisor)