Family-Centered Care
Stress in the NICU: Parental Worries about Outcomes Deborah Discenza, MA Disclosure The author has no relevant financial interest or affiliations with any commercial interests related to the subjects discussed within this article. No commercial support or sponsorship was provided for this educational activity.
Abstract NICU teams feel duty bound to provide statistics of a premature’s outcome to parents, leaving them feeling bereft. The reality is that, although statistics are necessary to impart to parents in a legal sense, outcomes can vary wildly because each child is different. Helping parents gain a sense of understanding but also supporting them as they become advocates for their child’s potential is important, and, with some tips, professionals can do wonders for the future of the baby and the family. Keywords: NICU; premature; outcome; statistics; respect; support; tips
W
atching a parent of a premature receive
terrible news about a test, a scan, or a procedure is heartbreaking to NICU nurses. They, like the parents, feel deeply connected to the child the unit and want the best outcome possible. But how does one support the parent at a time like this? Step away and just give them space? Here are some tips to help parents.
STATISTICS ARE JUST THAT—STATISTICS
Accepted for publication December 2013.
Certainly, research has its benefits in predicting outcomes for premature infants. Having as much information as possible is crucial in making decisions regarding therapies and other programs that will help the child reach his full potential. Legally, the medical professionals feel the need to fully inform parents of the risks of the issues at hand but do not realize that giving a worstcase scenario as the only outcome often paints a picture that is beyond stark. Yet, if we focus on a theory that every person and every child is different, then the parents can prepare for the worst but also have some hope. No one, not even medical professionals armed with statistics, has a crystal ball that determines a child’s outcome. Hope does not automatically mean “miracle.” Hope means a sense of possibility of some recovery. Know
that parents of premature infants understand that. As long as a diagnosis is grounded in reality, they will not only understand the potential consequences but also maintain a sense of focus on recovery.
SHOWING WHAT IS WORKING AS OPPOSED TO WHAT IS NOT
Often, health care providers emphasize the various issues that the baby is having and therefore focus on what is “wrong” as opposed to what is actually improving. Improvements are just that—improvements, regardless of how small. Give parents the ability to refocus on what is progressing positively so they at least hear something in the realm of improvement. Doom and gloom only serves to keep a parent in constant distress. Many of these parents given horrible life sentences for their child go on to be amazed at how well their child does in life. They talk about how mystified the professionals are when this happens.
PROVIDING AN OUTLET FOR EMOTIONS
Upon hearing a serious diagnosis, many parents want to put on a brave face to deal with the rest of the world. News about a poor prognosis is hard to convey to the rest of the family and friends who are ill-equipped to
N E O N A T A L N E T W O R K VOL. 33, NO. 5, SEPTEMBER/OCTOBER 2014 © 2014 Springer Publishing Company289 http://dx.doi.org/10.1891/0730-0832.33.5.289
handle such information and, even worse, to offer any sort of comfort. NICU professionals do not need to be trained in social work or psychotherapy to do what is so important to these parents: listening and showing empathy and respect. Listen to their frustrations, listen to their fears, and listen to their worries. No comment is needed, just listening and acknowledging back that they have a right to their feelings.
MAMA BEAR
Be prepared for “Mama Bear” to appear at one point, protective of her child and focused on doing all that she can to help the baby overcome this challenge. A mother is an incredible force who can move mountains and can find solutions where there were not any before. In other words, do not discount the ideas presented by a parent. Use the valuable tool of listening and acknowledging. This arms her with the ability to confidently be an advocate for her child in whatever occurs next short term or long term. She needs to be a parent and advocate, and people trying to dismiss her abilities will only create more distress for her and her baby. Step back and admire the fierceness of this mother. Give her respect, and she will show you a newfound strength that will serve her for a long time to come.
is one more notch on the parents’ belt of hope and believing that their child has potential. Not every NICU parent expects their 23-weeker to go to Harvard. But to them, every single accomplishment in the NICU and beyond is momentous and to them is likely better than Harvard. Always celebrate these moments because, for these families, it is like winning the lottery. They love their child and know that perfect outcomes are impossible whether the baby is early or not. It is all about perspective of what is important to them. And for many, the excitement is that their child is simply alive and breathing.
About the Author
Deborah Discenza, MA, is the coauthor of The Preemie Parent’s Guide to Survival in the NICU, available for purchase at http:// www.PreemieWorld.com. Also on the website are free PDF download materials for families in its “Freebies4You” section. Ms. Discenza moderates one of the largest online communities devoted to parents of preemies, the “Preemie Support” forum at http://www.inspire.com. For further information, please contact: Deborah Discenza, MA 5605 Eastbourne Drive Springfield, VA 22151-1608 E-mail: [email protected]
PROVIDING RESOURCES
Likely, you have come across the parents who have Googled everything related to their child’s time in the NICU. Understand that this is not a signal of mistrust; rather, it is helping them take charge of their child’s care. And they need to be a voice in that care. Although you may instead be tempted to give an “eye roll” when hearing that a parent has researched something on the Internet, give them appropriate Internet or organizational resources to address their need for information and support. Parents who are engaged in the NICU and asking lots of questions are parents you know will be properly advocating for their baby when they leave the NICU.
OUTCOMES—A DIFFERENT PERSPECTIVE
Although a diagnosis is given, it is hard to watch a parent have to mentally and physically prepare for a child with lifelong disabilities or even possible death. It is important to realize that outcomes for a medical professional are often vastly different than for a parent of a premature infant. When there are positive steps, parents tend to celebrate that important moment rather than focus on the eternal bad news. The fact that their child defied the odds given and managed to get off the ventilator and live is nothing short of miraculous to families. The fact that they are told the baby may never walk, talk, or go to a mainstream school yet manages to do all of these and later graduate from high school with honors
N E O N A T A L N E T W O R K 290
SEPTEMBER/OCTOBER 2014, VOL. 33, NO. 5
Stress in the NICU: Parental Worries about Outcomes Deborah Discenza, MA Disclosure The author has no relevant financial interest or affiliations with any commercial interests related to the subjects discussed within this article. No commercial support or sponsorship was provided for this educational activity.
Abstract NICU teams feel duty bound to provide statistics of a premature’s outcome to parents, leaving them feeling bereft. The reality is that, although statistics are necessary to impart to parents in a legal sense, outcomes can vary wildly because each child is different. Helping parents gain a sense of understanding but also supporting them as they become advocates for their child’s potential is important, and, with some tips, professionals can do wonders for the future of the baby and the family. Keywords: NICU; premature; outcome; statistics; respect; support; tips
W
atching a parent of a premature receive
terrible news about a test, a scan, or a procedure is heartbreaking to NICU nurses. They, like the parents, feel deeply connected to the child the unit and want the best outcome possible. But how does one support the parent at a time like this? Step away and just give them space? Here are some tips to help parents.
STATISTICS ARE JUST THAT—STATISTICS
Accepted for publication December 2013.
Certainly, research has its benefits in predicting outcomes for premature infants. Having as much information as possible is crucial in making decisions regarding therapies and other programs that will help the child reach his full potential. Legally, the medical professionals feel the need to fully inform parents of the risks of the issues at hand but do not realize that giving a worstcase scenario as the only outcome often paints a picture that is beyond stark. Yet, if we focus on a theory that every person and every child is different, then the parents can prepare for the worst but also have some hope. No one, not even medical professionals armed with statistics, has a crystal ball that determines a child’s outcome. Hope does not automatically mean “miracle.” Hope means a sense of possibility of some recovery. Know
that parents of premature infants understand that. As long as a diagnosis is grounded in reality, they will not only understand the potential consequences but also maintain a sense of focus on recovery.
SHOWING WHAT IS WORKING AS OPPOSED TO WHAT IS NOT
Often, health care providers emphasize the various issues that the baby is having and therefore focus on what is “wrong” as opposed to what is actually improving. Improvements are just that—improvements, regardless of how small. Give parents the ability to refocus on what is progressing positively so they at least hear something in the realm of improvement. Doom and gloom only serves to keep a parent in constant distress. Many of these parents given horrible life sentences for their child go on to be amazed at how well their child does in life. They talk about how mystified the professionals are when this happens.
PROVIDING AN OUTLET FOR EMOTIONS
Upon hearing a serious diagnosis, many parents want to put on a brave face to deal with the rest of the world. News about a poor prognosis is hard to convey to the rest of the family and friends who are ill-equipped to
N E O N A T A L N E T W O R K VOL. 33, NO. 5, SEPTEMBER/OCTOBER 2014 © 2014 Springer Publishing Company289 http://dx.doi.org/10.1891/0730-0832.33.5.289
handle such information and, even worse, to offer any sort of comfort. NICU professionals do not need to be trained in social work or psychotherapy to do what is so important to these parents: listening and showing empathy and respect. Listen to their frustrations, listen to their fears, and listen to their worries. No comment is needed, just listening and acknowledging back that they have a right to their feelings.
MAMA BEAR
Be prepared for “Mama Bear” to appear at one point, protective of her child and focused on doing all that she can to help the baby overcome this challenge. A mother is an incredible force who can move mountains and can find solutions where there were not any before. In other words, do not discount the ideas presented by a parent. Use the valuable tool of listening and acknowledging. This arms her with the ability to confidently be an advocate for her child in whatever occurs next short term or long term. She needs to be a parent and advocate, and people trying to dismiss her abilities will only create more distress for her and her baby. Step back and admire the fierceness of this mother. Give her respect, and she will show you a newfound strength that will serve her for a long time to come.
is one more notch on the parents’ belt of hope and believing that their child has potential. Not every NICU parent expects their 23-weeker to go to Harvard. But to them, every single accomplishment in the NICU and beyond is momentous and to them is likely better than Harvard. Always celebrate these moments because, for these families, it is like winning the lottery. They love their child and know that perfect outcomes are impossible whether the baby is early or not. It is all about perspective of what is important to them. And for many, the excitement is that their child is simply alive and breathing.
About the Author
Deborah Discenza, MA, is the coauthor of The Preemie Parent’s Guide to Survival in the NICU, available for purchase at http:// www.PreemieWorld.com. Also on the website are free PDF download materials for families in its “Freebies4You” section. Ms. Discenza moderates one of the largest online communities devoted to parents of preemies, the “Preemie Support” forum at http://www.inspire.com. For further information, please contact: Deborah Discenza, MA 5605 Eastbourne Drive Springfield, VA 22151-1608 E-mail: [email protected]
PROVIDING RESOURCES
Likely, you have come across the parents who have Googled everything related to their child’s time in the NICU. Understand that this is not a signal of mistrust; rather, it is helping them take charge of their child’s care. And they need to be a voice in that care. Although you may instead be tempted to give an “eye roll” when hearing that a parent has researched something on the Internet, give them appropriate Internet or organizational resources to address their need for information and support. Parents who are engaged in the NICU and asking lots of questions are parents you know will be properly advocating for their baby when they leave the NICU.
OUTCOMES—A DIFFERENT PERSPECTIVE
Although a diagnosis is given, it is hard to watch a parent have to mentally and physically prepare for a child with lifelong disabilities or even possible death. It is important to realize that outcomes for a medical professional are often vastly different than for a parent of a premature infant. When there are positive steps, parents tend to celebrate that important moment rather than focus on the eternal bad news. The fact that their child defied the odds given and managed to get off the ventilator and live is nothing short of miraculous to families. The fact that they are told the baby may never walk, talk, or go to a mainstream school yet manages to do all of these and later graduate from high school with honors
N E O N A T A L N E T W O R K 290
SEPTEMBER/OCTOBER 2014, VOL. 33, NO. 5
