Management of medically fragile infants and children.

Fundamental to the success of "Welcome Home," FHP Utah's program for caring for medically fragile infants and children, is the philosophy that the families of the infants must be allowed and encouraged to reach the highest possible level of independence. While this concept is simple, many factors complicate the progressive steps required for each family to reach its own level of independence and competence in caring for a fragile child. The initial shock of having a less than medically perfect baby often sends families into panic and uncertainty. Visiting the child in the NICU may give the family comfort as it observes the efficient and expert care given by specialized nursing staff but, along with this comfort comes feelings of intimidation, fear, and inadequacy.

For parents who are tremendously overwhelmed, the simple act of cradling their child may seem foreign. Families must deal with the tremendous disappointment, and often guilt, of having a medically fragile child. Frustration arises as they struggle to understand medical terms and prognoses and search for answers they want to hear. Financial pressures weigh heavily, as do decisions about returning to work. Siblings may feel isolated. Most families in this situation can see that their lives have changed immeasurably in an instant.

What most families cannot see is a clear path for the future on which they may make plans and develop expectations. The role of "Welcome Home" is to help families develop plans and expectations for their lives and for the care of the medically fragile child. The program must not only be built on clinical abilities but also on the ability to meet the medical, emotional, and psychosocial needs of both child and family.

Components of Program

The Welcome Home program relies on certain key, interdependent elements:

* Transdisciplinary team approach.

* Active parental involvement.

* Case management.

* Primary physician involvement.

* Treatment plan development.

* Wellness model.

Program Options

Once the appropriate staff was trained and documentation was prepared, the Welcome Home program was ready to begin operations. The first step was to begin the process of screening medically fragile infants who were currently hospitalized in the NICU. Various factors were considered in selecting the first patient, including the following:

* Medical stability.

* Family dynamics.

* Assessment of home environment.

* Financial resources.

* Commitment of professional team to home care concept.

* Availability of professional and community resources.

Types of Services Provided

Most of the services provided to the infant in the hospital setting are available in the Welcome Home program, including the following:

* I.V. antibiotics.

* Respiratory assessment (which may include tracheostomy care).

* Oxygen administration.

* Nutritional assessment and support (which may include nasogastric or gastric tube feedings).

* Cardiac assessment.

* Apnea monitoring.

Conclusion

The Welcome Home program achieved substantial gains in only its first year of operation. The quality of care and members' quality of life were substantially improved. Extensive education efforts significantly modified physician behavior to allow infants who would have lingered in the hospital to be discharged home into the program. Clinical milestones were set when a 900 gram birthweight infant and an infant weighing 1,417 gram at the time of hospital discharge were admitted to home care in the program.

Hospital bed days were reduced by 14.1 percent. Total cost of care (including hospital and home care costs) were decreased by 13.5 percent and resulted in a net savings to the FHP Utah region of approximately $356,000. The Welcome Home program looks forward to even greater achievements in its second year.