Current visions of health (policies) tend to support an ideal patient who is pro-active, co-responsible in the decision-making process with the care partners, with a greater involvement in his/her health trajectory. Information availability must make it possible for the patient to become a responsible actor in his/her own health care process.
Scientific studies suggest that the Internet as a resource of health information can trigger a shift in the patient-physician relationship from a paternalistic model to a consumeristic model. However, the motivations of patients to search and use online health information and its impact on the power relations between patient and caregiver are not integrated in one analytical perspective.
Comparable to the visions regarding patient-centred care in the general healthcare sector, in the neonatal setting a family-centred model of healthcare provision is endorsed. Easy access to information related to the (health) situation of their child is one of the principles of family-centred care. Yet, research investigating the role of the Internet as a possible medium of information transfer and as a decision-supporting instrument is lacking. Special attention should be paid to the use of the worldwideweb as an information- en communication tool on the parent-healthcare professional relationship.
The care setting, together with the care provision and caregivers, differs in function of the illness and healthcare stadium. Different stadiums and circumstances of an illness and healthcare trajectory will most likely prompt different types and intensities of information (search) behaviours. Scientific funded knowledge is needed to test this hypothesis.
This research aims at apprehending the role of the Internet as an information- and communication tool on the experiences of parents of children admitted to a neonatal intensive care unit. The mediating effect of illness trajectories on the use of online information and communication tools will be investigated. Specific attention will also be paid on the impact of the use of the Internet as an information and communication resource on the parent-healthcare professional relationship.
A preliminary classification of the possible illness trajectories and indications on the use of information- and communication tools on these trajectories will be made based on literature research, exploratory interviews with experts and a prospective, qualitative research with a small sample of parents with NICU-children. The use of the Internet as an information- and communication tool by parents of NICU-children, and their group and individual characteristics will be analyzed by collected quantitative data. A further validation and completion on these first analyses will be done by in-depth interviews. In order to map the social construction of the parent-healthcare professional relationship, the attitudes of parents as well as these of healthcare professionals will be questioned. These interviews will be analyzed using the principles of Strauss and Corbin (grounded theory) and these of Miles en Huberman.