Objective This study explored the role and involvement of parents in medical treatment decisions and the daily decision-making related to nursing care of the child at a neonatal intensive care unit (NICU).

Methods An explorative design with qualitative interview was used. Ten parent couples were interviewed. Qualitative content analysis of the material was preformed.

Results Parent’s experience of participation is related to the information they receive, whether and how they are provided emotional support and parents opportunities for performing their parent role in the NICU. Parents express a need for structure and continuity related to who provides information and how it is presented. To be able to participate the parents are in need of more emotional support. Mothers express their need of emotional support to a greater extent than fathers. Clarity of roles is an essential precondition for participation in decision-making.

Conclusions To ensure continuity and to qualify parents participation it is necessary to build up formal structures as a qualification indicator for when and how information should be exchanged between the parents and health personnel.