A Family Information Group in the Neuro-Intensive Care Waiting Room
Objective: To identify the utility of placing an information group in the NICU waiting room.
Methods: Recruitment:Team members approached individuals in the NICU waiting room, and identified themselves as part of an information group for families.Individuals then identified the reason they were in the NICU.Team Members:Involved in the group were a neurologist/physiatrist who specializes in brain injury, a nurse who runs the family resource at the university, a chaplain who heads the Ethics Consultation Service of the hospital (to help with surrogate and end of life questions), a survivor fo brain injury, and an individual who is a caregiver for parents coping with chronic disabilities.
Intervention: Over the course of 18 months, over 800 families attended the meetings. The group met every week for 90 minutes when the NICU was closed to visitors. Throughout the meetings participants were not required to share any identifying information. The focus of the group was to explain medical and neuropsychological tests, pathophysiology of the brain injury, potential complications, and prognoses. The specific content was determined by the questions raised by the participants. Assessment: At the end of every meeting, each family received a feedback survey. Open-ended questions addressed the overall utility of the group, identified questions for the treating team, and allowed room for comments on how to improve the group.
Results: Over 98% of the families (n=784) felt that the group was extremely helpful in understanding problems faced while in the NICU. It also provided assistance in preparing questions for treating physician and in appreciating future concerns.
Conclusions: The primary strength of this intervention is also its weakness. Namely, the very immediacy of the information provided appeared to be premature for some families. Such families may still have been in denial, or naive about the ramifications of a brain injury. They may also have perceived the surgeon as the only legitimate souce of information. In contrast, results indicate that those families who did attend, and were in involved with the group, greatly benefited from it.