Coping and Caring in Different Ways: Understanding and Meaningful Involvement

Pediatric Nursing, March, 2000 by Nancy Sydnor-Greenberg, Deborah Dokken

In fact, consistent with the philosophy of family-centered care, involvement should be different from family to family in order to "support families in their natural caregiving roles" (Brown et al., 1991). Involvement that is predefined as "good" by health care professionals may be uncomfortable or inappropriate for some families. Because of their experience in El Salvador, where medical technology and the care of high-risk babies is vastly different, Yancy's family could not be comfortable in the NICU. They might have no sense of control seeing Marcellus in that environment. Suggesting that Yancy's extended family should visit the NICU might not be respectful of their background.

In contrast, involvement that "fits" an individual family and its special characteristics is empowering. Nurses who recognize and respect family differences, and have used assessment skills to better understand families, are uniquely qualified to suggest and support a range of activities for family involvement. Table 2 outlines a number of ways that a family could be involved in the NICU and provides a starting point for nurses to begin joint planning -- to help a family determine the kind of involvement that is appropriate for its baby's medical condition and for its own comfort level. Some families will feel more in control by participating in one or two activities; others may wish to be involved in all or most of the outlined activities. Of course, practical, logistical considerations (lack of transportation, childcare, etc.) might make some kinds of involvement difficult or impossible for some families. Nurses also could help families find ways to address these logistical concerns.

Table 2. Areas of Involvement

* Talking to the NICU staff by telephone about the baby's condition and progress.

* Sending photos, audiotapes, toys, or clothes for the baby.

* Being present in the NICU, sitting with the baby.

* Providing hands-on care (feeding, diapering, bathing, etc.).

* Doing research about the baby's medical condition, gathering information about resources, requesting conferences with staff.

* Bringing other family members to the NICU.

* Interacting with staff and establishing connections.

* Interacting with other NICU parents and establishing connections.

* Learning special caretaking skills from nurses and other staff (e.g., administering medication, physical therapy).

* Planning/organizing (e.g., active role in discharge planning).

* Establishing communication with a veteran NICU parent and/or family and/or joining an appropriate support group.

Above all, nurses should ask families themselves about their desired involvement (Ahmann, 1999). Certain questions might elicit information from families about their preferred caring strategies. For example, "How would you like to be involved in your baby's care in the NICU? Other parents have done ... Would that be comfortable for you? What questions do you have about your baby's care in the NICU?" Beginning an ongoing discussion about how best to care for their baby and helping them implement a plan for involvement will very likely help parents establish the control they need to deal with the uncertainty of the NICU. Because family members' needs and comfort levels may change over time, nurses should sensitively revisit the discussion about involvement as appropriate.