Childhood cancers affect over 35,000 children per year in Europe and are life-threatening.
Parents have a fundamental role in caring for their child throughout the patient pathway. They provide nurturing and support and help minimise the psychological impact associated with a paediatric cancer diagnosis and its treatment. The right of the hospitalised child for “constant and continuous parental involvement” and the parents’ critical role in the multidisciplinary care team are recognised in the European Standards of Care for Children with Cancer.
To implement the European Standards of Care and realise patient empowerment, socioeconomic provisions that reflect the needs of parents of children with cancer and other life-threatening diseases are necessary.
The newly agreed EU Work-Life Balance directive acknowledges the role of carers and specifies a minimum period of paid leave from employment in case of a serious illness in the family. It also includes the possibility to envisage adapting parental leave arrangements. In the next three years, the directive is set to be transposed into national law where relevant provisions are not yet in place. National provisions can exceed the minimum benchmarks established by the directive.
Paediatric cancer professionals and parents call for full consideration of the extent of parental involvement required in a life-threatening disease context. Adequate legal provisions to protect parents’ employment and minimise the financial toll of the illness on the family should be in place across Europe. These measures should be defined, implemented and evaluated in cooperation with parents and their advocacy groups as well as healthcare professional associations.
On the occasion of the recent agreement of the EU Work-Life Balance Directive, the European paediatric cancer community thus calls on Member States to ensure the application of inclusively defined socio-economic measures to support parents caring for children with life-threatening diseases.
Council of the EU: Press Release on the occasion of the adoption of the Work-Life Balance directive.