When a child is diagnosed with cancer, this affects the entire family, of which siblings are an important part. Siblings have to cope with situations that their peers do not have to deal with. In the Princess Máxima Center, we believe it is essential to give siblings the attention they deserve. For the Seeing Siblings project, we developed a program with the following ingredients: A) provide information for siblings through the website, B) educate health care professionals about the impact on siblings, C) educate school teachers about the impact on siblings, D) screen and monitor siblings, E) provide activities and both online and face-to-face educational courses for siblings so they can meet each other and share experiences (Op Koers ). This program is done in cooperation with development-oriented care and psychosocial care.
In addition to this health-care innovation program, I work on research into the wellbeing of siblings and parents in the Princess Máxima Centre and into an online group intervention for parents.
- Joosten, M. M. H., Maurice-Stam, H., Scholten, L., & Grootenhuis, M. A. (2019). Hearing siblings’ voices: exploring the (online) support needs of siblings of children with a chronic condition. Journal of patient-reported outcomes, 3(1), 11. https://www.ncbi.nlm.nih.gov/pubmed/30756203
- Douma, M., Joosten, M. M., Scholten, L., Maurice-Stam, H., & Grootenhuis, M. A. (2019). Online cognitive-behavioral group intervention for adolescents with chronic illness: A pilot study. Clinical Practice in Pediatric Psychology, 7(1), 79. https://psycnet.apa.org/record/2019-12705-008
- Luijten, M. A., Terwee, C. B., van Oers, H. A., Joosten, M. M., van den Berg, J. M., Schonenberg‐Meinema, D., ... & van Rossum, M. A. (2019). Psychometric properties of the pediatric Patient‐Reported Outcomes Measurement Information System (PROMIS®) item banks in a Dutch clinical sample of children with Juvenile Idiopathic Arthritis. Arthritis Care & Research. https://www.ncbi.nlm.nih.gov/pubmed/31628731
- Limperg, P. F., Joosten, M. M. H., Fijnvandraat, K., Peters, M., Grootenhuis, M. A., & Haverman, L. (2018). Male gender, school attendance and sports participation are positively associated with health‐related quality of life in children and adolescents with congenital bleeding disorders. Haemophilia, 24(3), 395-404. https://www.ncbi.nlm.nih.gov/pubmed/29418040