Children with a chronic illness or cancer, their siblings and parents: psychosocial group intervention & long-term consequences
Authors:   , Joosten Mala Marina Helena 
Published: May 2024

Part 1: The development and effect of the Op Koers intervention in different populations

In Chapter 2, a study into the online support needs of siblings of children with a chronic illness is presented. In total, 91 siblings filled out a self-developed questionnaire. Of all participants, 55% would like to initiate or increase contact with other siblings of children with a chronic condition and 46% of those were interested in an online chat course. Important themes for online support were identified. We concluded that siblings are interested in peer contact and online support, and that Op Koers Online for siblings seems to be a suitable intervention to offer online psychosocial support.

Chapter 3 consists of a pilot study into Op Koers Online for adolescents with a chronic illness. In total, 23 adolescents with a chronic illness completed questionnaires before and after participation in the intervention, addressing feasibility, coping skills and psychosocial wellbeing. Dropout rate and technological issues were low. Participants’ overall satisfaction was high. Participants improved in the coping skills ‘information seeking and giving’ and ‘social competence’ after the intervention compared to baseline. Participants reported fewer withdrawn/depressed behavior and scored better on emotional and psychosocial HRQoL after following the intervention. We concluded that Op Koers Online for adolescents with a chronic illness is feasible and potentially effective.

Chapter 4 is the result of a RCT to study the efficacy of Op Koers Online for parents of children with cancer on coping skills and psychosocial wellbeing. In total, 100 parents participated in the RCT, of which 89 filled out questionnaires before participation and at 6-week and/or 6-month follow up. The intervention had a beneficial effect on anxiety, depression, distress and loneliness as well as on the coping skill ‘relaxation’ after six weeks. Furthermore, after six months, an effect of the intervention was found on anxiety, uncertainty and coping skill ‘relaxation’. No intervention effects were found for helplessness, positive feelings and coping skills predictive control, open communication and positive thinking. We concluded that Op Koers Online for parents of children with cancer has a positive effect on psychosocial wellbeing and the coping skill relaxation.

In Chapter 5, the efforts are described that were made in 25 years of Op Koers development, evaluation and implementation. Important lessons were learned about the characteristics of the intervention, the inner and outer setting, individuals, implementation process and research. Future efforts may be directed towards continuous improvement of the intervention and successful implementation. We concluded that Op Koers is one of few psychosocial interventions that has been both extensively studied and implemented. The main factor for this achievement is the close collaboration between, and the perseverance of, the clinical care and research departments.

Part 2: Psychosocial wellbeing of siblings and parents of very long‐term survivors of childhood cancer

Part 2 focuses on studying the psychosocial wellbeing of adult siblings (Chapter 6) and parents (Chapter 7) of very long-term childhood cancer survivors (CCS). We assessed HRQoL, anxiety, depression, post-traumatic stress (PTSD), self-esteem, illness cognitions and positive consequences. Additionally, we studied whether sociodemographic characteristics and cancer-related characteristics of the ill child were associated to the outcomes. In total, 505 siblings and 661 parents completed questionnaires. Compared to the general population, siblings and parents in our sample had comparable or slightly better HRQoL, anxiety and self-esteem and slightly less depression. The proportion of participants with symptomatic PTSD was very small. Post‐traumatic growth was associated with more post‐traumatic stress and better HRQoL. No clear trend was found in the associations of sociodemographic characteristics and cancer-related characteristics with the outcomes.