No abstract

The literature related to the stress experienced by families who care for medically fragile children is analyzed. A model is generated from themes identified in the research literature. Four core themes were identified under which most of the stressors identified in the literature could be grouped. These are role conflict, financial burden, care burden, and independence. These are in turn arranged as a matrix in which the family, the child, the care professional, and health care system interact dynamically with the four core themes. The Family Stress/Task Matrix has the potential for facilitating research related to models that include a family-centered view among health professional and systems.

Of 161 items on the care path, 10 were not validated. The experts validated the instrument as a whole. Of the 161 items, 151 were validated. This is an instrument validation rate of 0.94. No additional changes or modifications to the path were suggested by the experts. The transdisciplinary team addressed the nonvalidated items. This method can be used to develop other coordinated paths for other diagnostic groups.