The role of psychoeducation in improving quality of life for children with leukaemia

Leukaemia is diagnosed in 500 children in the UK annually. Treatment takes up to 3 years, involves numerous medical procedures, unpleasant side effects and disruptions to family life. Many children develop long-term physical or psychological problems as a result of their treatment. With survival rates approaching 90% it is important to develop interventions which reduce the burdens of treatment and improve the child’s quality of survival. Psychoeducational interventions have been developed and evaluated for children with other chronic conditions. This thesis will explore the role they might play for children with leukaemia. A narrative review of psychoeducational interventions delivered to children with cancer showed a lack of rigour in the literature which provides only weak evidence for a number of potentially useful approaches. A systematic review and meta-analysis of psychoeducational interventions (Study 1) found a lack of interventions for children with leukaemia, highlighting the need to develop psychoeducational interventions for this group. The meta-analysis found a differential effect for psychoeducation in different chronic conditions and a larger effect in younger children. The design of a novel psychoeducational intervention for children with leukaemia is then described. Children (aged 7-12 years) were taught about the pathophysiology of leukaemia and its treatment, in small group sessions, in 4 participating hospitals. Study 2 reported the effectiveness and acceptability of this intervention. The intervention resulted in improvements in child quality of life. Acceptability of the intervention was good, but recruitment was low, meaning the trial may have been underpowered to detect effects on the other measures. Recruitment difficulties are common in psychoeducational intervention studies and reduce the quality of the evidence base. Therefore, Study 3 reported the results of an interview study with non-participating families from the leukaemia intervention trial. Time and scheduling problems, lack of priority, lack of relevance and perceived negative impact were identified as barriers to recruitment. The implications for future psychoeducational interventions and research are discussed