Focus group interview with parents of children with medically complex needs: an intimate look at their perceptions and feelings.

The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes were identified. The most persistent need was for a general organization or framework with which the care providers could operate. Along these same lines, the fragmentation of training, needs and services was consistently stated. A general lack of information in terms of home care and how to plan for the future was identified. Support groups were universally lauded for the invaluable services provided to the care parents.