Coping and Caring in Different Ways: Understanding and Meaningful Involvement

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

8. How are my own background, values, and beliefs influencing my understanding of and response to this family?

9. What do I know about this family's concerns for the future?

Thoughtful assessment would have highlighted the importance of focusing on the cultural context in Yancy's case -- of trying to understand not only Yancy, but also her extended family and their Salvadoran background. With sensitive questioning, Barbara and Tracy might have been able to talk about their other losses and to articulate fears about their surviving infants so that staff would better understand their behaviors and incorporate this understanding into planning for involvement.

In helping families cope and care in the NICU, assessment is critically important, but it is not an end in itself. Assessment is the tool that provides information to jointly plan with families their meaningful involvement. Families with high risk infants in the NICU are faced with great uncertainty about their children's survival and outcomes and about their own parenting role (Wereszczak et al., 1997). Nothing has prepared them for this kind of parenting. They are looking to health care providers for clues about how to parent in the NICU environment, and nurses are in a unique position to help families define what involvement would work for them.

For families in the NICU, involvement is not just a "frill" but instead provides real benefits (Meck, Fowler, Claflin, & Rasmussen, 1995). Involvement gives families a sense of control over their situation and their child's recovery. Involvement also instills a feeling of empowerment in families; they feel more competent and confident in their ability to care for their child both during the NICU stay and long after discharge from the NICU (Brown, Pearl, & Carrasco, 1991). They feel more like parents despite the strange environment.

While providing benefits, meaningful involvement can be different from family to family. What constitutes meaningful involvement also may differ among individuals within a family (e.g., between a mother and a father); family members' need for involvement may even change during the course of a NICU stay. Initially, Barbara and Hank differed in their "caring" and their kind of involvement. Hank spent significant time in the NICU while Barbara stayed home and heard reports from nurses and Hank about Heather's progress. Later in Heather's NICU stay, Barbara was able to spend time in the unit and engage in active caregiving.

Since she had been in the United States significantly longer than her family and had some awareness of American medical culture, Yancy was more comfortable in the NICU than her extended family. However, her family cared deeply about Marcellus' well being. The red bracelet they sent for Marcellus to wear to "ward off the evil eye" is a sign of protection in their culture. Given their level of discomfort with the NICU and their limited knowledge of premature babies like Marcellus, it was the most meaningful thing Yancy's family could do for him and for Yancy.