Background Parents with a newborn suffering from a congenital abnormality face multiple challenges in the first months of their baby’s life. They have to be instructed in several treatments and specialised care of their child.

Methods An integrative systematic literature review of 29 articles, 2 Focus Group Interviews with nurses and social workers and 3 Interviews with parents with a child with special healthcare needs were conducted.

Results The identified knowledge needs out of the literature were divided into eight categories: the condition or illness, treatment, everyday care of the child, handling of technical equipment, the future, organizational issues, how to explain the illness to others and support.

Most knowledge needs were mentioned also in the focus group interviews but they were more detailed. Additional mentioned needs were: Normal anatomy, pathophysiology, Problems in handling the altered body image of their child.

In the Interviews parents stated that they would have needed more knowledge to situations where they had to make decisions and they needed to know how to organise themselves and how much time they needed for the care of their child.

Conclusions Having access to and getting information is an important part in the process of gaining knowledge and being empowered. Knowledge needs of parents should be assessed systematically but individually during hospitalisation and after discharge.

Acknowledgement I want to express my gratitude to the Finnish National Post-Graduate School in Nursing Science, Academy of Finland and to the Nursing Science Foundation Switzerland for a grant for my PhD study.