Concerns experienced by parents of children treated for cancer : A qualitative study to inform adaptations to an internet-administered, low-intensity cognitive behavioral therapy intervention

• Published in: Psycho-Oncology
• Main Authors: Lundgren, Johan, Thiblin, Ella, Lutvica, Nina, Reuther, Christina, Farrand, Paul, Woodford, Joanne, von Essen, Louise
• Format: Article in Journal/Newspaper
• Language: English
• Published: Uppsala universitet, Hälsovetenskap och e-hälsa 2023
• Subjects: adolescent; child; childhood cancer; intervention development; mental health; parenting; parenting concerns; parents; qualitative research; Other Health Sciences; Annan hälsovetenskap; ejder
• Online Access: http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-490357; https://doi.org/10.1002/pon.6074

Abstract Objective Childhood cancer treatment completion is associated with mental health difficulties and negative socioeconomic consequences for parents. However, psychological support needs are often unmet. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) and examined feasibility and acceptability with a single-arm feasibility trial (ENGAGE). Results suggest EJDeR is acceptable, however, adherence, especially for fathers, could be improved. Following the Medical Research Council complex interventions framework, this study explores concerns experienced by parents actively seeking support related to their child's cancer who were recruited into ENGAGE to inform further adaptation of EJDeR. Method Seventy-three semi-structured interviews (26 fathers, 47 mothers) were conducted, with data analyzed using manifest content analysis. Results Analysis resulted in seven categories: (1) Feeling lost and lonely in life; (2) Low mood; (3) Parenting difficulties; (4) Productivity difficulties; (5) Relationship challenges; (6) Stress reactions; and (7) Worry. With the exception of subcategories Afraid of not being a good parent, Cancer recurrence, and Child's development and future a somewhat higher percentage of mothers than fathers mentioned all identified concerns. Conclusion Parents described experiencing a range of concerns after their child had completed cancer treatment. EJDeR will be adapted to address these concerns and include indirect intervention modules targeting concerns such as stress. Information to support parenting, relationships, finance, and employment difficulties, alongside signposting to inform help-seeking, will be included. Findings also suggest a need to improve the gender-sensitivity of EJDeR.