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Grandparents’ involvement and psychosocial outcomes when a grandchild is diagnosed with cancer: acute and long-term consequences

English title Grandparents’ involvement and psychosocial outcomes when a grandchild is diagnosed with cancer: acute and long-term consequences
Applicant Michel Gisela
Number 182129
Funding scheme Project funding (Div. I-III)
Research institution Seminar für Gesundheitswissenschaften und Gesundheitspolitik Universität Luzern
Institution of higher education University of Lucerne - LU
Main discipline Psychology
Start/End 01.04.2019 - 31.03.2023
Approved amount 820'849.00
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All Disciplines (5)

Discipline
Psychology
Mental Disorders, Psychosomatic Diseases
Cancer
Health
Paediatrics

Keywords (8)

childhood cancer; Survivorship; Cost of care; Involvement; Psychological distress; Psychosocial outcomes; Grandparents; psychological distress

Lay Summary (German)

Lead
Wenn ein Kind an Krebs erkrankt, ist die ganze Familie betroffen: Eltern, Geschwister aber auch die Grosseltern. Diese unterstützen die Familie in vielen Bereichen und helfen der Familie durch die schwierige Zeit der Erkrankung.
Lay summary

Inhalt und Ziel des Forschungsprojekts

Grosseltern spielen eine wichtige Rolle, wenn ein Enkelkind an Krebs erkrankt: sie begleiten das erkrankte Kind ins Spital, übernehmen die Betreuung der Geschwisterkinder, und bieten emotionale oder finanzielle Unterstützung für ihre Kinder und Schwiegerkinder. Mit unserem Projekt wollen wir untersuchen, wie Grosseltern die Familie unterstützen, und welche Auswirkungen die mannigfaltige Unterstützung auf die Grosseltern selber im kurz- und langfristigen Verlauf hat. Mittels Fragebogen und persönlichen Interviews werden Grosseltern, aber auch die Eltern und die betroffenen Kinder, detailliert über ihre persönlichen Erfahrungen Auskunft geben können. Wir werden damit die informelle Unterstützung genau beschreiben, aber auch die damit verbundenen Kosten abschätzen können. Zudem werden wir erheben, welches die psychosozialen Konsequenzen für die Grosseltern selber sind.

Wissenschaftlicher und gesellschaftlicher Kontext

Bisher wurde viel Forschung zu Kindern mit einer Krebserkrankung unter und im Langzeitverlauf nach Abschluss der Therapie sowie deren Eltern und Geschwister gemacht. Unsere Studie wird zum ersten Mal die Sicht von drei Generationen auf die Krebserkrankung eines Kindes beleuchten. Die Resultate werden helfen, die nötigen Informationsunterlagen oder Anlaufstellen und bessere Unterstützung für Grosseltern bereitzustellen.

Direct link to Lay Summary Last update: 28.09.2018

Responsible applicant and co-applicants

Employees

Project partner

Publications

Publication
Post-traumatic stress in parents of long-term childhood cancer survivors compared to parents of the Swiss general population.
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.
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
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, 0.

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
PanCare Meeting Talk given at a conference Grandparents’ involvement and psychosocial outcomes when a grand child is diagnosed with cancer: acute and long-term outcomes 11.09.2019 Basel, Switzerland Priboi Cristina; Scheinemann Katrin; Christen Salome; Michel Gisela; Ilic Anica; Roser Katharina;
European Health Psychology Society Talk given at a conference Psychosocial experiences in grandparents whose grandchildren suffer from severe health impairments: a systematic review 03.09.2019 Dubrovnik, Croatia Priboi Cristina; Michel Gisela; Roser Katharina;
Swiss Public Health Conference Talk given at a conference Psychosocial experiences in grandparents whose grandchildren suffer from severe health impairments: a systematic review 29.08.2019 Winterthur, Switzerland Michel Gisela; Roser Katharina; Priboi Cristina;


Abstract

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.
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