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Clinical trials have been fundamental to improving outcomes for children with cancer. However, the enrolment process is complex for families and healthcare professionals. This thesis used a mixed-methods, multi-perspective approach to guide the development and evaluation of ‘Delta’. Delta is the world’s first decision aid to support parents with a child with cancer and adolescents with cancer deciding whether to enrol in a clinical trial. In Chapter 1, I present an overview of the clinical trials. This chapter addresses the complexity of the decision-making process for families, and discusses the benefits of patient decision aids. In Chapter 2, I conduct a systematic review of 17 studies to identify recommendations to facilitate shared decision-making regarding paediatric oncology clinical trials. In Chapter 3, I interview 25 parents and 5 adolescents recently after diagnosis to explore their decision-making experiences. In Chapter 4, I survey 87 Australian and New Zealand healthcare professionals about their experiences enrolling children with cancer into an early-phase clinical trial. In Chapter 5, I present a process map from the point of a child’s relapse to treatment decision at one of Australia’s largest paediatric oncology units. The findings from Chapters 2 to 5 guided the development of Delta. In Chapter 6, I describe the development and the findings from user-testing with seven parents and six healthcare professionals. In Chapter 7, I present a narrative review to identify the most appropriate measures to evaluate a paediatric decision-making intervention. Using the findings from Chapter 7, I conduct a before–after pilot evaluation of Delta with 37 parents and 3 adolescents who had recently enrolled in a clinical trial (Chapter 8). Participants rated Delta as acceptable, and reported that it should be available to all families making an enrolment decision. Parents had higher levels of objective clinical trial knowledge after reading Delta compared to baseline (odds ratio=2.25; 95% CI:1.66-3.04; p

Parents whose child dies from cancer experience a complex layer of losses: that of their child, pre-existing formal and informal relationships in their community, and the loss of what some term, the hospital family . Adopting a mixed method analysis (N=119 self report-questionnaire; n=41 semi-structured interview), this thesis examined this dilemma from a systemic perspective acknowledging the relationship between all three of these components which impact on a family s experience of bereavement. Study one explored bereavement follow up practices in the paediatric oncology setting. Staff demonstrated a commitment to providing follow up bereavement care for families following the death of a child, however also described logistical and fiscal limitations in service delivery. Study two focused on the intra-personal components of parental grief examining the impact of demographic and medical factors on parents bereavement. This study confirmed medical components of a child s cancer care trajectory had a profound impact on bereavement for a proportion of parents. Parents gender, religious affiliation and education level have a significant impact on levels of growth. Study three explored the inter-personal assets in the lives of families before and after the death of their child. Distancing from the local community and engaging more fully with the treatment team and other peers meant for many families a new community of support was established in the hospital. In bereavement, parents expectations of ongoing care from the treatment team were often not met. Simultaneously, parents described barriers to accessing formal and informal support, feeling the need to maintain face within their social networks; feeling the privacy of their experience inhibited their capacity to seek support; and simply not knowing where or how to access support. These findings affirm the need to target psycho-social support at critical intervals throughout a child s cancer care trajectory and in parallel assist parents in identifying intra-personal and inter-personal assets which may be enablers in grief. This thesis introduced a model of transitional bereavement care informed by social support theory turning the focus on the community as an asset in the lives of bereaved parents.