Childhood cancer survivors & their parents: long-term implications for care

Introduction. This thesis includes three studies addressing current research gaps in childhood cancer.  
 
Study 1 (https://doi.org/10.5281/zenodo.2385854). Childhood cancer survivors should attend long-term follow-up care to monitor their health, but many do not attend. We investigated psychosocial characteristics
to help explain their behaviour.  
 
Study 2 (https://doi.org/10.5281/zenodo.4153557). Parents of children diagnosed with cancer encounter difficulties in childhood cancer care. Theory-driven research is needed to understand parents’ communication with health-care professionals and resulting health-care experience.   

Study 3 (https://doi.org/10.5281/zenodo.4134526). The childhood cancer experience may continue to affect parents mentally. Little is known on parents post-traumatic stress symptoms when survivors are grown-up.

Population.
Cohorts included: 1. Swiss childhood cancer survivors diagnosed with cancer aged <16 years and ≥5 years since diagnosis; 2. Australian parents of children aged <18 years who recently completed cancer treatment with curative intent; and 3. Swiss parents of adult survivors of childhood cancer (aged >20 years).

Methods.
Survivors and parents were recruited nationwide and asked to complete for study 1 & 3. a questionnaire survey, or for study 2. a semi-structured telephone interview. We used 1. the Theory of Planned Behavior and Structural Equation Modelling, 2. Embodied-Societal-Psychological Perspective in health psychology and Grounded Theory, 3. the Model Of Pediatric Medical Traumatic Stress and Multilevel Modelling to
evaluate outcomes, and identify associated characteristics.
Results.
1. Social norms in the survivors’ surrounding, including parents, are driving follow-up care attendance,even if survivors are already adults.
2. Parents’ communication experiences with health-care professionals
shaped their trust and engagement in their child’s health-care.
3. Parents of children with chronic illness, even if already adult, reported more symptoms of post-traumatic stress.

Conclusion.
1. Parents play a crucial role in the survivors’ long-term follow-up care.
2. Parents’ communication experiences with health-care professionals are essential to foster optimal parental and patient engagement in care.
3. Parents of children with chronic illness are at risk for increased post-traumatic stress.
 
Access to support services long into survivorship could facilitate the management of long-term consequences.