childhood cancer; Survivorship; Cost of care; Involvement; Psychological distress; Psychosocial outcomes; Grandparents; psychological distress
BaenzigerJulia, RoserKatharina, MaderLuzius, HarjuErika, AnsariMarc, WasepeNicolas, ScheinemannKatrin, MichelGisela (2020), Post-traumatic stress in parents of long-term childhood cancer survivors compared to parents of the Swiss general population., in Journal of Psychosocial Oncology Research and Practice
, 2(3), e024.
Christen Salome, Roser Katharina, Mulder Renée L., Ilic Anica, Lie Hanne C., Loonen Jacqueline J., Mellblom Anneli V., Kremer Leontien C. M., Hudson Melissa M., Constine Louis S., Skinner Roderick, Scheinemann Katrin, Gilleland Marchak Jordan, Michel Gisela (2020), Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group, in Journal of Cancer Survivorship
Background and rationaleChildhood cancer is the second most common cause of death in children, but 5-year survival rates in Switzerland have reached 88%. However, a childhood cancer diagnosis is still a devastating event for the whole family. Research has been done on the psychosocial impact of childhood cancer on the family system and on parents and siblings, but little is known about how grandparents are affected. Grandparents play an important role in taking care of their grandchildren and are an important source for support. Studies in grandparents of a grandchild suffering from other diseases have shown that grandparents are affected in many ways. The proposed study aims to fill the gap in knowledge on grandparents with a grandchild suffering from childhood cancer.Objective and aimsThe study aims to investigate acute and long-term consequences of a cancer diagnosis in a grandchild on grandparents. Specifically, we aim to address the following questions:1.a. How and to what extent are grandparents involved in the care of their grandchildren during and shortly after cancer treatment?b. What are the economic costs of the care provided by grandparents?c. What are the information needs of grandparents about childhood cancer?2.What are the short-term consequences for grandparents of grandchild diagnosed with cancer?3.What are the long-term consequences of childhood cancer on grandparents?MethodsWe will apply mixed-methods combining different study designs and qualitative and quantitative approaches. These include 1) longitudinal study on the care and short-term consequences for grandparents of childhood cancer patients during the first 24 months after diagnosis of cancer in a grandchild; 2) qualitative study providing in-depth information on the experiences of grandparents of childhood cancer patients in treatment; and 3) cross-sectional study on long-term consequences in grandparents of childhood cancer survivors. We will include grandparents of a child diagnosed with cancer at age =18 years and treated for cancer at a Swiss paediatric oncology clinic, fluent in German, French, or Italian, and resident in Switzerland.The longitudinal study will consist of four questionnaire waves to grandparents (3, 6, 12, and 24 months after the child’s cancer diagnosis). The questionnaires will include questions on socio-demographic information, employment/retirement, partnership, health, psychological well-being, quality of life, relationships, and needs. Additionally, we will send a questionnaire to the parents and grandchildren (cancer patient and siblings) about 24 months after diagnosis with similar questions. Clinical information will be obtained from the treating clinics. For the qualitative study, we will conduct semi-structured interviews with grandparents of a grandchild receiving cancer treatment. For the cross-sectional study, we will include grandparents of childhood cancer survivors who are at least 2 years after end of treatment. The questionnaire will include similar questions and instruments as the questionnaires in longitudinal study 1.Expected results and impactThe study will be the first longitudinal study on grandparents of childhood cancer patients in Europe, including three generations. It will provide knowledge on informal care provided by grandparents, estimate the costs, and describe acute and long-term consequences in grandparents. The information will enable to develop information material and support services especially tailored to the needs of grandparents who have an ill grandchild.