Coping and Caring in Different Ways: Understanding and Meaningful Involvement

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

Lights and the high commotion of technology swirl around us. The air smells of chemicals, I sit on a high, wheeled stool and gaze at the baby under the glare of the warming light; our baby looks like a tiny space alien (Barsuhn, 1996).

Few experiences are more frightening to parents than walking into a neonatal intensive care unit and seeing their baby with all the necessary, but strange, equipment and staff. Their new baby looks fragile and sick. Parents are surrounded by sights, sounds, and even smells that are unfamiliar and intimidating. A veritable "army" of people is present -- all with expertise vastly different from the parents' expertise. In this environment, parents simply don't know what might happen to their baby. Even if they are experienced parents who have other children, the situation is new and frightening, and they are not sure what to do.

Parents and their extended families faced with this scenario respond in different ways to their fear and uncertainty. Nurses and other health care professionals, while meaning well, may sometimes interpret families' responses without adequate information and, as a result, may miss opportunities to support families as they cope and care in the neonatal intensive care unit (NICU). The three stories that follow are true and show different responses to the NICU experience. The accompanying discussion provides a structure for nurses and other health care professionals to better understand variations in individual family situations and to help families plan for meaningful involvement.

Story 1

Barbara and Hank were in their mid-30s when their twin daughters, Jennifer and Heather, were born unexpectedly at 27 weeks gestation at a suburban hospital. Jennifer died within 24 hours. Heather was stabilized and transferred to the local children's hospital. Heather spent weeks in the NICU, and Barbara did not visit. Instead, she stayed home with their almost 2-year-old son. In contrast, Hank visited the NICU daily on his way to and from his managerial job in a large corporation.

Story 2

After a previous pregnancy loss, Tracy was in her mid-20s when her son, Kieff, was born at 24 weeks gestation. He was born at the same downtown hospital where Tracy was working as a secretary in the Labor and Delivery Department. Kieff had a rocky course during his 3 months in the NICU and experienced multiple bouts of sepsis as well as Grade III and IV intracranial bleeds. Each day, Tracy spent hours in the NICU. She brought in a teddy bear and other toys for Kieff and put family pictures on his isolette. She sang to him, read him stories, and talked to him about what they would do once he got home.

Story 3

Yancy was single and had just turned 19 when she had an emergency caesarean section. Her son Marcellus was born at 28 weeks gestation. Early in his stay in the NICU, he required ventilation and treatment for sepsis. He stayed in the NICU for 3 months due to failure to grow and trouble sucking and feeding. Yancy visited Marcellus every day, always alone. Her large Salvadoran family lived near the hospital, but their only visible presence in the NICU was a red bracelet that an aunt had sent in for Marcellus to wear.

Different Family Reactions

Three very young babies requiring lengthy intensive care ... three very different families trying to cope with that crisis ... three very different situations for nurses and other health care professionals to interpret and respond to ... three opportunities for nurses to understand or to misread families' behavior ... three possibilities to help plan for meaningful family involvement.

Superficially, some might think that Barbara wasn't involved enough; that Tracy was in denial and unrealistically involved, considering her baby's condition; and that Yancy was young and needed more support from her family. But, how do these families describe their own behavior, their own reality?

Barbara: "I was afraid to bond with Heather because I thought she was going to die like her sister."

Tracy: "I knew that Kieff was very sick. He looked just like a little bird, but he was my little bird."

Yancy: "My family couldn't stand to see Marcellus so little. In El Salvador, we'd never heard of such a small baby."

Statistics verify that medically fragile babies are born into families of all races, religions, nationalities, and cultural backgrounds. These babies are also born to parents without regard to the parents' personalities and previous life experiences. While it may seem obvious that, like any crisis, the birth of a medically fragile child can happen to anyone, it is all too easy to overlook or minimize how individual circumstances, past and present, may affect the abilities of an individual or family to cope with and care for a baby in intensive care. Similarly, it is easy to overlook or minimize the challenge nurses face in interpreting individual situations and responding to different families.

Bogdan, Brown, and Foster (cited in Affleck & Tennen, 1991) report that nurses form assumptions about effective parental adjustment or coping and that these assumptions are often based on limited information, such as brief conversations and observations. This may be understandable given the frenetic situation in which NICU nurses work and care for babies and their families. However, as in any crisis, a variety of factors influence the actions and reactions of individuals involved, both those of nurses and those of families. There is no right or wrong way of coping. Just as there is no right or wrong way of coping, there are many responses to a situation. Some responses may not be what one traditionally expects, nor do they occur for the reasons commonly expected.