Parent Advocates are Born in the NICU

How the NICU teaches preemie parents to advocate for their children.

By Allison Martin, MPA

The quality and frequency of a parent’s participation in their child’s care in the NICU can play a significant role in their effectiveness after discharge when they become the parent advocate of a special needs child.

The quality and frequency of a parent’s participation in their child’s care in the NICU can play a significant role in their effectiveness after discharge when they become the parent advocate of a special needs child. Some NICU experiences mold parents interactions with professionals for many years to come. Professionals in the NICU can aid parents by becoming familiar with these factors.

Eight important characteristics significantly influence a parent’s future role as advocate.

1. The NICU environment is stressful.

The NICU experience is intensely emotional and stressful. Often an immediate response is required to new or inadequate information. Issues such as life and death crises, quality of life, and very dramatic episodes are interwoven with periods of mundane monitoring and exhaustion. While it creates resilience, this stressful life can result in over-reaction to future perceived threats, either medical or educational. Many preemie parents report post traumatic symptoms, especially when re-entering a hospital or on anniversary times.

2. The NICU environment is child centered.

In the NICU, decisions are generally made with the welfare of the child foremost. The parents are lower on the list of priorities, after numerous professional and operational considerations. Most parents are content with the placement of their child at the center of focus, and in fact, come to expect it. This encourages them to be good advocates for their children in the future, but can also be a negative influence on self care and confidence.

The NICU environment is professional.

Parents and babies are immersed in high technology and interact daily with specialists, doctors, nurses, and other medical professionals. The NICU has its own jargon, rules and routine ways of operating determined by the profession, which parents adapt to and perhaps even finds comforting over time. This is an aid when parents have to communicate with doctors in the future. Plus it is an introduction to the acquisition of educational language in the future. However, it does mean they think and communicate very differently from other parents who have not had these experiences.

4. The NICU environment is well documented.

Parents come to expect and rely upon a high level of documentation and transfer of detail from one member of the staff to another. How much they are encouraged to share in the availability of documentation may vary from place to place. The more access parents have to information, the more involved they may feel and the better prepared they may be for their future role in child care. However, in all cases parents end up expecting and relying upon detailed documentation. This is an asset in the future when dealing with the medical and educational profession, as parents learn to provide good documentation. Plus they will receive lots of paperwork in turn, and this prepares them to handle this. Sometimes parents can be frustrated by lack of documentation, and have to learn to produce it themselves.

5. The NICU environment is constantly changing.

Parents and babies cope with an ever changing group of professionals. Continuity is generally encouraged, but constant change is a fact of life. Increased parental involvement can provide greater continuity of care for the infant. Providing parents with a focal person can provide greater continuity for the parent in transfer of information and encouragement. This prepares them for the future, when changes occur educationally at least each year.

6. In the NICU, parents are part of a team.

The NICU team is coordinated by a leader or leaders other than the parent. Ideally the parent is part of the team. The more parents feel included in the decisions for their child and the more knowledgeable they become during this period, the better they will be able to make informed decisions and transfer knowledge in the future. Parents learn to form their own team in caring for their children later on. However, they must adapt to the role of the leader, which can be a difficult and sometimes overwhelming transition.

7. In the NICU, parents interact with experts on the care of their child.

The professionals in the NICU almost always know more than the parents - both in terms of theoretical and experiential knowledge. Although the information can be overwhelming, the more parents understand the events, procedures and potential consequences, the better informed they will be to make decisions in the future. Parents will live with the consequences of some decisions for the rest of their child’s life.

8. In the NICU, parents learn to parent in an unique environment.

In the NICU, parents exist on the "turf" of the professionals. They desperately need and value the NICU setting and the people caring for their child. However, they are not in charge or at home--an unfamiliar and unnatural environment for parenting.

While unintentional, parents receive a subliminal message in the NICU that they cannot provide adequate care for their fragile children. Presumably, as parents become involved and informed during their time in the NICU, they will feel more confident and be better prepared to care and advocate for their child down the road. There are a variety of ways this may be encouraged. NICU parents may be invited to take over much or part of the routine care (e.g., feeding, holding, changing, bathing) of their children when medically feasible. NICU personnel can make a special effort to ensure that parents are involved in the accomplishment of major milestones (e.g., first bottle, first clothes, first time out of isolette, first bath). Overall, it is likely that both parent and child will benefit when parents undertake more "normal" parental interactions (e.g., holding, rocking, swaddling, kangaroo care) over the course of a stay in the NICU. This 'on-the-job training' allows parents to become more invested, affirmed and comfortable with parenting early on. As an added benefit, the baby experiences more continuity of care.

However, this subliminal message can be a detriment when parents leave the NICU with their child. They may feel unsettled and inadequate as parents. This feeling may take a long time to subside.

After the NICU : Finding Yourself In Charge

The same factors that are important in the NICU continue to play an important role in the lives of parents and children after discharge. However, the relative responsibilities of parents and professionals have changed. If parents have a child with special needs, they become a "special needs family" with issues and needs beyond "normal" parenting. The responsibility for identifying and addressing these issues and needs now rests with the parent.

Parents often emerge from the stressful environment of the NICU with an intensity of focus and concern for their children more immediate than many other families. Parents are used to having their children’s issues be of primary importance. They may be dismayed to find that this singular focus on their child is not shared by the professionals they encounter later. For example, preschools and schools are still child-oriented but are less responsive to the individual, immediate needs of each child than is the NICU.

Life will still feel like a whirlwind, but likely without some of the immediate support the parents came to rely upon during their time in the NICU. Additionally, parents will continue to cope with change, such as frequent turnover in school personal and therapists and other transitions each year and throughout the year. Children’s needs will also change over time and new issues may emerge or resolve.

After the NICU, the new responsibility of parents means they will encounter a whole new group of professionals and an entirely new set of jargon. Now however, they must learn from the experts themselves and then transfer and implement the information. At times parents will find themselves to be more educated on issues than the professionals they encounter - a discouraging event for any parent but particularly those used to the exceptional standards of the NICU.

Overall, parents discover that they are ultimately responsible for the welfare of their child. They come to understand that parenting alone is not enough. They must assume a new set of roles to ensure that the necessary coordination, documentation, communication and implementation occurs to support their child’s growth and development.

Parents do not necessarily come to advocacy for their special children by nature. They come to advocacy having survived the NICU--perhaps the most emotional and stressful time of their lives. It is important that parents of children of special needs understand the breadth and depth of the roles they must play in their child’s life. It is a difficult and sometimes overwhelming responsibility, but the benefits for parent and child are ultimately rewarding.

Allison Martin is the mother of a child born weighing one pound. She received her Masters of Public Administration from UNC.