Table 3 Legal and financial regulations

Adequate and transparent regulations

Lack of clarity with respect to legal and financial regulations

Continuous need to struggle

Families and professionals continuously need to struggle for services and support, associated with a high additional burden and a lack of emotional and existential stability for the families

Ethical considerations

Reflection about the gap between the wish to give the best possible care to a dying child and the financial restrictions to certain care options

Funding of specific services

Shortcomings in the funding of particular services, e.g. nursing home care, medication & medical supplies, reimbursement of paediatricians, coordination & psychosocial care, supervision & education, self-help