Ella Thiblin: After Childhood Cancer: The Feasibility and Acceptability of Guided Internet-Administered CBT for Parents

Abstract

This thesis comprises five studies aiming to: (1) examine the feasibility and acceptability of an intervention tailored to parents of children treated for cancer (EJDeR) and study procedures in the ENGAGE feasibility study (ENGAGE), and (2) inform refinements and modifications of EJDeR and study procedures in preparation for a pilot RCT (CHANGE-pilot) and a subsequent fully powered superiority RCT.

Study I (ENGAGE) was a feasibility study examining the feasibility and acceptability of EJDeR and related study procedures. Overall, EJDeR and ENGAGE study procedures were feasible and acceptable, with most progression criteria met.

Study II was a Study Within A Trial (SWAT) investigating the effect of personalised versus non-personalised study invitation letters on recruitment rates in ENGAGE. No significant effect of personalisation on recruitment rates was found.

Study III was a qualitative interview study examining concerns reported by parents to inform further adaptation of EJDeR. Parents reported concerns related to feeling lost and lonely in life, low mood, parenting difficulties, productivity difficulties, relationship challenges, stress reactions, and worry. 

Study IV was a qualitative interview study exploring the feasibility and acceptability of EJDeR and ENGAGE study procedures from the perspective of parents to inform refinements and modifications to EJDeR and study procedures. Overall, parents found EJDeR acceptable and relevant, however, some reported feeling too well to benefit. A need for more content on relationships with family as well as others, the cancer experience, and trauma was described. Study procedures were overall reported as acceptable, but with too many assessments. 

Study V was a description of and reflection on a collaborative data analysis (CDA) approach used with public contributors when analysing interviews exploring the acceptability and feasibility of EJDeR and ENGAGE study procedures (Study IV). Reflections from public contributors and research team members suggested the CDA approach had potential impacts on findings, e.g., by adding nuance.

This thesis contributes to the literature on the feasibility testing of complex interventions. Furthermore, it illustrates how SWATs can address research questions about effective study procedures. Finally, it provides an example of the inclusion of public contribution in the feasibility phase to enhance the credibility of findings.