Parents of a child suffering from a congenital abnormality face multiple challenges in the first months of the life of their baby. Besides managing the fact that their child is not “normal” they have to learn about many treatments and specialised care-giving tasks for their infant. They need to learn numerous new skills and need lot of information and knowledge to be ready to care for their child after being discharged from hospital.

The purpose of this three-phased study was to assess the knowledge of parents of a child with a congenital abnormality, during and after the first hospitalisation.

In phase I, an integrative literature review was conducted to review current instruments for the assessment of knowledge needs and what knowledge needs parents with a child with special health care needs have. In addition, three interviews with parents and two focus group interviews with nurses and social care counsellors were conducted. To strengthen the methodological approach in focus group interviews with this special population, a methodological review about focus group interviews in child, youth and parent research was conducted.

In phase II, the data of the literature review and the extracted data of the focus group interviews and the interviews with the parents was used to develop an instrument to assess these knowledge needs. The items were reduced through estimating the content validity index. A content validity index of 0.80 was set for the items of the instrument.

In phase III, the instrument was tested on three wards, one ward in every University Hospital (two in Switzerland, one in Germany) and the knowledge needs of the parents were collected. The feasibility was confirmed by the users of the instrument.

Results: Parents of a child with special health care needs, need knowledge about the diagnosis, the treatment and care of their child, the therapy and the short- and long-term prognosis. The information must be in a terminology adapted to the parents’ language and cognitive skills. Conclusion: The needed knowledge should be given recurrently and adapted to existing level of the parents’ knowledge. To assess the level of the parents’ knowledge, an instrument like the one developed and used in this study is helpful.