Study published: Parents' perspectives on psychological support for parents following childhood cancer
In a recently published study in BMC Psychiatry, researchers from U-CARE have, together with public contributors, explored how parents of children treated for cancer perceive an internet-administered guided self-help support programme based on cognitive behavioural therapy. The study highlights the importance of involving public contributors in the development of psychological supports tailored to their needs.
Internet-administered psychological support
Parents of children treated for cancer often experience psychological distress, such as anxiety and depression. However, few evidence-based support programmes exist to support them. The study focused on EJDeR, a low-intensity, internet-administered support developed for this population. Interviews with 52 parents showed that the support programme was perceived as relevant and acceptable, but also revealed important areas for improvement, including technical issues, a need for greater focus on the cancer experience, and a desire for enhanced focus on the whole family.
Parents as public contributors
To better understand how the support programme and study procedures could be refined, the researchers invited three parents as public contributors to independently analyse the interview data. Their insights closely aligned with those of the researchers but also added important nuance. For example, they highlighted that some parents found it difficult to distinguish between the support programme and the study procedures.
Toward more effective support programmes
The study concludes that both the support programme and study procedures were acceptable and feasible. However, modifications and refinements are needed to improve clarity, usability, and relevance. The authors emphasise that involving individuals with lived experience in the research process deepens the understanding and strengthens the development of future support programmes.
Link to the article
Read the paper ‘The acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: findings from a qualitative study involving public contributors’. It is written by Ella Thiblin, Johan Lundgren, Mattias Bergqvist, Tho Huynh, Christina Reuther, Sandra Rösler, Joanne Woodford, and Louise von Essen.