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Parents of long-term childhood cancer survivors

English title Parents of long-term childhood cancer survivors
Applicant Michel Gisela
Number 153268
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 01.08.2014 - 31.12.2017
Approved amount 303'426.00
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All Disciplines (5)

Discipline
Psychology
Cancer
Public Health and Health Services
Mental Disorders, Psychosomatic Diseases
Paediatrics

Keywords (6)

psychological distress; illness beliefs; parents; survivor; childhood cancer; long-term outcomes

Lay Summary (German)

Lead
Wenn ein Kind mit Krebs diagnostiziert wird, sind die Eltern plötzlich mit einer möglicherweise tödlichen Krankheit konfrontiert. Es folgen Hospitalisation, Therapie, und eine immer wiederkehrende Ungewissheit, die für viele Eltern eine langdauernde und immense Belastung bedeuten. Eltern leiden häufig an psychischen Problem wie post-traumatische Belastungssymptome, Depression oder auch Ängsten. Es gibt aber auch positive Seiten und viele Eltern berichten langfristig auch von einer persönlichen Reifung, welche die Erfahrung der Krebserkrankung ihnen gebracht hat. Bisherige Studien haben meist untersucht, wie es den Eltern kurz nach Diagnose oder nach Ende der Therapie geht. Studien, die Eltern auch lange Zeit nach der Krebserkrankung ihres Kindes untersucht haben, waren häufig sehr klein, und die Verallgemeinerung der Resultate ist dadurch schwierig.
Lay summary

Mit unserer Studie möchten wir die folgende Fragestellungen beantworten:

  1. Was sind die psychischen und sozio-demographischen Folgen, sowie die Bedürfnisse von Eltern ehemals krebskranker Kinder und wie ist die Belastung im Vergleich zur allgemeinen Schweizer Bevölkerung
  2. Welche Eltern sind besonders von Belastungen betroffen?

Zudem werden wir in dieser Studie Schweizer Normdaten für drei etablierte Instrumente zur Erhebung psychischer Belastung sammeln.

Mit Unterstützung des Schweizer Kinderkrebsregisters (SKKR) werden wir den Eltern aller ehemaligen krebskranken Kindern (die heute Erwachsen sind) einen Fragebogen schicken. Zusätzlich werden wir einer Zufallsstichprobe aus der allgemeinen Schweizer Bevölkerung ebenfalls einen adaptierten Fragebogen schicken.

Relevanz des Projektes

In den letzten Jahren wurden viele Studien mit ehemaligen Kinderkrebspatienten durchgeführt. Unterdessen weiss man viel darüber, wie es ihnen geht, welche Probleme und Bedürfnisse sie auch lange nach der Erkrankung noch haben.

Unsere Studie wird als erste eine grosse Stichprobe von Eltern zu ihren Belastungen, Bedürfnissen und positiven Veränderungen befragen. Der Einschluss der Allgemeinbevölkerung ermöglicht es auch für zukünftige Projekte Schweizer Normdaten für häufig gebrauchte Instrumente zu haben. Die Resultate werden helfen, die kurz-aber auch langfristige Betreuung der Eltern zu verbessern z.B. mittels adäquater Information, psycho-sozialer Betreuung.

Direct link to Lay Summary Last update: 24.07.2014

Responsible applicant and co-applicants

Employees

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.
The long-term impact of cancer: Evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland
Michel Gisela, François Constanza, Harju Erika, Dehler Silvia, Roser Katharina (2019), The long-term impact of cancer: Evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland, in Psycho-Oncology, 28(3), 577-585.
“I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors
Christen Salome, Mader Luzius, Baenziger Julia, Roser Katharina, Schindera Christina, Tinner Eva Maria, Michel Gisela (2019), “I wish someone had once asked me how I'm doing”: Disadvantages and support needs faced by parents of long‐term childhood cancer survivors, in Pediatric Blood & Cancer, 66(8), e27767.
Health-related quality of life in Switzerland: normative data for the SF-36v2 questionnaire
Roser Katharina, Mader Luzius, Baenziger Julia, Sommer Grit, Kuehni Claudia E., Michel Gisela (2019), Health-related quality of life in Switzerland: normative data for the SF-36v2 questionnaire, in Quality of Life Research, 1.
Perceived information provision and information needs in adolescent and young adult cancer survivors
Christen Salome, Weishaupt Esther, Vetsch Janine, Rueegg Corina S., Mader Luzius, Dehler Silvia, Michel Gisela (2019), Perceived information provision and information needs in adolescent and young adult cancer survivors, in European Journal of Cancer Care, 28(1), e12892-e12892.
Relationship status and quality of the partner relationship in parents of long-term childhood cancer survivors: The Swiss Childhood Cancer Survivor Study-Parents
Mader Luzius, Roser Katharina, Baenziger Julia, Vetsch Janine, Winther Jeanette Falck, Scheinemann Katrin, Michel Gisela (2019), Relationship status and quality of the partner relationship in parents of long-term childhood cancer survivors: The Swiss Childhood Cancer Survivor Study-Parents, in Psycho-Oncology, 28(2), 309-316.
Health-related quality of life in adolescent and young adult cancer survivors
Harju Erika, Roser Katharina, Dehler Silvia, Michel Gisela (2018), Health-related quality of life in adolescent and young adult cancer survivors, in Supportive Care in Cancer, 26(9), 3099-3110.
Can the Theory of Planned Behavior help explain attendance to follow-up care of childhood cancer survivors?
Baenziger Julia, Roser Katharina, Mader Luzius, Christen Salome, Kuehni Claudia E., Gumy-Pause Fabienne, Tinner Eva Maria, Michel Gisela (2018), Can the Theory of Planned Behavior help explain attendance to follow-up care of childhood cancer survivors?, in Psycho-Oncology.
Attendance to Follow-Up Care in Survivors of Adolescent and Young Adult Cancer: Application of the Theory of Planned Behavior.
Katharina Roser, Julia Baenziger, Luzius Mader, Salome Christen, Silvia Dehler, Gisela Michel (2018), Attendance to Follow-Up Care in Survivors of Adolescent and Young Adult Cancer: Application of the Theory of Planned Behavior., in Journal of adolescent and young adult oncology, 7(5), 584-591.
Arbeitslosigkeit nach einer Krebserkrankung im Kindesalter
Mader Luzius, Michel Gisela, Roser Katharina (2017), Arbeitslosigkeit nach einer Krebserkrankung im Kindesalter, in Dtsch Arztebl International, 114(47), 805-12.
Physicians' experience with follow-up care of childhood cancer survivors - challenges and needs
Michel Gisela, Gianinazzi Micol E., Vetsch Janine, Mader Luzius, Lupatsch Judith E., von der Weid Nicolas X., Rueegg Corina S. (2017), Physicians' experience with follow-up care of childhood cancer survivors - challenges and needs, in SWISS MEDICAL WEEKLY, 147, w14457.
Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls.
Mader Luzius, Vetsch Janine, Christen Salome, Baenziger Julia, Roser Katharina, Dehler Silvia, Michel Gisela (2017), Education, employment and marriage in long-term survivors of teenage and young adult cancer compared with healthy controls., in Swiss medical weekly, 147, 14419-14419.
Household income and risk-of-poverty of parents of long-term childhood cancer survivors.
Mader Luzius, Roser Katharina, Baenziger Julia, Tinner Eva Maria, Scheinemann Katrin, Kuehni Claudia Elisabeth, Michel Gisela, Michel Gisela (2017), Household income and risk-of-poverty of parents of long-term childhood cancer survivors., in Pediatric blood & cancer, e26456.
Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.
Vetsch Janine, Rueegg Corina S., Mader Luzius, Bergstraesser Eva, Diezi Manuel, Kuehni Claudia E., Michel Gisela (2017), Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors., in European Journal of Cancer Care, e12649.
Employment Situation of Parents of Long-Term Childhood Cancer Survivors.
Mader Luzius, Rueegg Corina S, Vetsch Janine, Rischewski Johannes, Ansari Marc, Kuehni Claudia E, Michel Gisela, Michel Gisela (2016), Employment Situation of Parents of Long-Term Childhood Cancer Survivors., in PloS one, 11(3), 0151966-0151966.
Follow-up care of young childhood cancer survivors: attendance and parental involvement.
Vetsch Janine, Rueegg Corina S, Mader Luzius, Bergstraesser Eva, Rischewski Johannes, Kuehni Claudia E, Michel Gisela, Michel Gisela (2016), Follow-up care of young childhood cancer survivors: attendance and parental involvement., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in , 27(4), 3127.
Preferences for long-term follow-up care in childhood cancer survivors.
Michel G, Gianinazzi M E, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, Kuehni C E, Kuehni C E (2016), Preferences for long-term follow-up care in childhood cancer survivors., in European journal of cancer care, 25(6), 1024-1033.
Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors.
Christen Salome, Vetsch Janine, Mader Luzius, Dehler Silvia, Korol Dimitri, Kuehni Claudia, Rueegg Corina S, Michel Gisela (2016), Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors., in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in , 24(8), 3425.

Collaboration

Group / person Country
Types of collaboration
Swiss Childhood Cancer Registry Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
Swiss Paediatric Oncology Group Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Research Infrastructure
Swiss Chidlhood Cancer Survivor Study Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Kinderkrebshilfe Schweiz Switzerland (Europe)
- Research Infrastructure

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
International Society of Paediatric Oncology (SIOP) Talk given at a conference Parents of childhood cancer survivors: How do they fare in the long term 12.10.2017 Washington DC, United States of America Michel Gisela;
PanCare Meeting Talk given at a conference Post-traumatic stress symptoms and predictors in parents of long-term childhood cancer survivors 04.10.2017 Lübeck, Germany Roser Katharina; Mader Luzius; Michel Gisela;
PanCare Meeting Talk given at a conference Health-related quality of life in parents of long-term childhood cancer survivors 04.10.2017 Lübeck, Germany Michel Gisela; Roser Katharina; Mader Luzius;
SPOG Annual Scientific Meeting Poster Adult survivors of childhood cancer and unemployment – update of a systematic review and meta-analysis 28.01.2017 Lugano, Switzerland Mader Luzius; Michel Gisela; Roser Katharina;
Swiss Public Health Conference Talk given at a conference Employment and income of parents of long-term childhood cancer survivors 17.09.2015 Genf, Switzerland Rueegg Corina; Mader Luzius; Kühni Claudia; Michel Gisela;


Communication with the public

Communication Title Media Place Year
Talks/events/exhibitions Workshop for childhood cancer survivors: psychosocial outcomes after childhood cancer German-speaking Switzerland 2017
Talks/events/exhibitions Psychische Spätfolgen nach Krebs in der Kindheit, Survivortagung, Kinderkrebs Schweiz German-speaking Switzerland 2016
Talks/events/exhibitions Survivor Meeting, Kinderkrebshilfe Schweiz German-speaking Switzerland 2015

Awards

Title Year
Early Postdoc.Mobility P2LUP3_175288 2017

Associated projects

Number Title Start Funding scheme
141722 Follow-up care after childhood and young adult cancer 01.08.2012 Ambizione
121682 Follow-up care after childhood and young adult cancer 01.08.2009 Ambizione
162120 Parents of long-term childhood cancer survivors: an intervention study to improve quality of life and psychosocial well-being 01.01.2016 Doc.Mobility
178330 Improving psychosocial care for parents of childhood cancer survivors: evaluating an e-mental health intervention using mixed methods 01.03.2018 Doc.Mobility

Abstract

Background: When a child is diagnosed with cancer, parents are confronted with the potential fatality of the disease. They experience a highly stressful time, which may affect their psychological well-being, their relationship as a couple and with their children. Additionally, because of prolonged absence from work, they may experience an economic burden. However, for many parents distress is not over with the end of treatment and cure of the child. Parents may suffer from a variety of psychological problems such as depression, anxiety or post-traumatic stress symptoms. Uncertainty about the child’s health and worries about relapse or late effects may negatively affect parents individually or as a couple. So far, late outcomes of childhood cancer in parents have mostly been studied in small samples and within a short time frame after the end of treatment. Aim: For the proposed project we aim to 1) describe psychological and socio-demographic outcomes, as well as needs in parents of long-term childhood cancer survivors and compare them with parents of the general population, 2) evaluate associations of these outcomes with the clinical characteristics of the child’s disease and the child’s own late outcomes and 3) provide Swiss norm-data for three established and frequently used instruments on quality of life, psychological distress and post-traumatic stress.Method: The Swiss Childhood Cancer Registry (SCCR) registers all children diagnosed with cancer in Switzerland. We will include all parents whose children were diagnosed with cancer under age 16 years, who were Swiss residents at diagnosis, who survived for 5 years or more, and are currently alive and aged 20 years or older. Additionally, we will select a random sample of parents of the same age group. Parents of survivors will first be contacted by paediatric oncologists of the original treating clinic. All parents will receive a questionnaire package from the study centre. Clinical information on the cancer and treatment are available from the SCCR, and information about survivors’ health from the Swiss Childhood Cancer Survivor Study. Completed questionnaires will be entered into a database and analysed anonymously. For analyses, we will first use descriptive statistics to give an overview of the characteristics of participating parents and the number of parents with psychological distress or post-traumatic growth, with various socio-demographic outcomes and different needs. Second, we will compare data to scores of available norm populations and to scores of the comparison group using t-test or chi2 tests. Third, we will use linear and logistic regression analyses to evaluate associations between different outcomes and characteristics of the parents or their children. Rationale and significance: Several large cohort studies among childhood cancer survivors have improved our knowledge on their late outcomes and well-being. However, while most survivors get on with their life after cancer, many parents remain affected by their experience long after their child reached adulthood. The proposed study will be the first population-based study among parents of long-term survivors of childhood cancer and will shed light on their psychological well-being, social outcomes and the needs they have for their children and themselves.
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