Parents,What Are You Worried About?

Parents,What Are You Worried About?

Throughout my career one thing has been consistently true.  That is that wherever I was working and regardless of the role I have been an educator.  I imagine the blog to a great extent is related to my interest in this aspect of my work.  In the last few years much has been said about care by parents whether it be a general approach for family centred care or in formalized approaches such as FiCare which has also been formally studied in the research setting.  When we speak of family centred care, one thing that I am constantly reminded of is that the focus of all of our efforts must be on the family and the patient.  As I said recently to a colleague when discussing what was presented as a difficult discussion with another colleague due to a disagreement about the direction of management, when you put the patient first the discussion really isn’t difficult at all.  It’s not about you or a colleagues ego but about the patient and if the management is not up to par then change direction and worry about managing egos later.

What We Know And What They Know

Another aspect that needs to be addressed is the difference in power that we have through knowledge.  I am not talking about us exerting authority over families but from the perspective of us having the knowledge from years of experience in the field as to what is significant and what is not in terms of events in the NICU.  The evidence for example with respect to neurodevelopmental outcome from apnea and bradycardia should give us reason to be optimistic the majority of the time.  While in Edmonton I learned a great deal from one of my colleagues who  was the lead author in a paper entitled Early childhood neurodevelopment in very low birth weight infants with predischarge apnea.  While frequent apnea may be associated with mild motor impairments in their paper, the predictive value of these predischarge recordings is very limited when you take away those kids without severe IVH.  I think about all of the parents we see who have their eyes glued to the monitors while they attend at the bedside and what they must be thinking.  To us it is just a matter of time but I wonder for them how agonizing a time it really is!  It isn’t just those infants who are nearing discharge and having apnea either as the CAP study  at 5 years of age showed no difference in survival without disability in those infants who received caffeine vs those who did not.  More frequent events may not be that detrimental after all.  I am not suggesting we not treat patients as one never knows where the threshold lies to cause injury but these preemies are certainly made of some tough stuff.

Identifying Stress and Preparing Parents For it

The first step in dealing with this issue is to know it is there.  Recognizing this, Melnyk and others performed an educational intervention targeting behaviour of families in their study Reducing premature infants’ length of stay and improving parents’ mental health outcomes with the Creating Opportunities for Parent Empowerment (COPE) neonatal intensive care unit program: a randomized, controlled trial.  The group of parents who went through the program had better mental health outcomes compared to the control groups.  The issue here and really is at the crux of the goal in writing all of this is that the stress that parents feel may not be overtly present.  The squeaky wheel as the saying goes gets the grease and the parents that are demonstrating signs of poor coping are the first to draw the referrals to social work or engage in a deeper conversation with nursing at the bedside.  All parents experience stress at least to a certain degree and it is all of our jobs to tease it out.  On the other hand employing standardized approaches such as the COPE program for all parents might be another way of helping those who are in need but not clearly wearing a sign on their foreheads that say “help me”.

Don’t Underestimate the Power of Reassurance

1414165926454_wps_11_Doctor_Reassuring_his_Pat.jpgSo we know that much of what we see on the monitors will not lead to long term harm, transient central cyanosis during feeds will not damage the brain and apnea of prematurity is a distinct entity from SIDS.  The parents on the other hand commonly make these links and additionally in case no one has mentioned it to you, those babies with TTN may one day develop asthma and those with hypoglycemia may have diabetes (we know both not to be true but I have been asked about this many times).  This is why I believe it is our duty to explain why we are not worried about things that come up in the unit.  Saying “don’t worry” or “that is normal preterm behaviour” may not be enough.  Ask a parent what it is they are worried about and you may be surprised to find out the links that they have made in their heads, some of which may be valid but some completely false.  I am not meaning to trivialize their concerns but rather validate them as real worries.  If we have the knowledge and it is power as I said before then shouldn’t we use that power to help reduce their stress?

Engaging Families Can Reap Huge Dividends

The movement towards family centred care and more specifically care by parent will have a dramatic impact on this issue.  As more and more centres move to engaging families to be part of rounds and not just listen and then ask questions but to take some degree of control and provide some of the reporting stress will be reduced.  It is only logical.  The more a family comes to understand what is significant and what is not in terms of reporting concerns the more confident they will be.  Moreover, spending more time at the bedside leads to more skin to skin care and with that shorter hospital stays due to better cardiorespiratory stability.  We aren’t there yet but we are headed in the right direction.  In the meantime, take the time to ask a simple question “what are you worried about” to parents no matter how confident and strong they appear and you may find yourself with an opportunity to harness the power of education you have a make a real difference to a family in need.

At the Edge of Viability Does Every Day Count?

At the Edge of Viability Does Every Day Count?

Preterm infants born between 22 to 25 weeks gestational age has been a topic covered in this blog before.

Winnipeg hospital now resuscitating all infants at 22 weeks! A media led case of broken telephone.

Is anything other than “perfect practice” acceptable for resuscitating infants from 22 – 25 weeks?

Winnipeg Hospital About to Start Resuscitating Infants at 23 weeks!

I think it is safe to say that this topic stirs up emotions on both sides of the argument of how aggressive to be when it comes to resuscitating some of these infants, particularly those at 22 and 23 weeks.  Where I work we have drawn a line at 23 weeks for active resuscitation but there are those that would point out the challenge of creating such a hard-line when the accuracy of dating a  pregnancy can be off by anywhere from 5 – 14 days.  Having said that, this is what we have decided after much deliberation and before entertaining anything further it is critical to determine how well these infants are doing not just in terms of survival but also in the long run.  In the next 6 months our first cohort should be coming up for their 18 month follow ups so this will be an informative time for sure.

Do Days Matter?

This is the subject of a short report out of Australia by Schindler T et al.  In this communication they looked at the survival alone for preterm infants in a larger study but broke them down into 3 and four-day periods from 23  to 25 weeks as shown below.

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The asterisk over the two bars means that the improvement in survival was statistically significant between being born in the last half of the preceding week and the first half of the next week. In this study in other words days make a difference.  A word of caution is needed here though.  When you look at the variation in survival in each category one sees that while the means are statistically different the error bars show some overlap with the previous half week.  At a population level we are able to say that for the average late 23 week infant survival is expected to be about 30% in this study and about 55% at 24 +0-3 days.  What do you say to the individual parent though?  I am not suggesting that this information is useless as it serves to provide us with an average estimate of outcome.  It also is important I believe in that it suggests that dating on average is fairly accurate.  Yes the dates may be off for an individual by 5 – 14 days but overall when you group everyone together when a pregnancy is dated it is reasonably accurate for the population.

Don’t become a slave to the number

The goal of this post is to remind everyone that while these numbers are important for looking at average outcomes they do not provide strict guidance for outcome at the individual level.  For an individual, the prenatal history including maternal nutrition, receipt of antenatal steroids, timing of pregnancy dating and weight of the fetus are just some of the factors that may lead us to be more or less optimistic about the chances for a fetus.  Any decisions to either pursue or forego treatment should be based on conversations with families taking into account all factors that are pertinent to the decision for that family.  Age is just a number as people say and I worry that a graph such as the one above that is certainly interesting may be used by some to sway families one way or another based on whether the clock has turned past 12 AM.  At 23 weeks 3 days and 23 hours do we really think that the patient is that much better off than at 24 weeks 4 days and 1 hour?

 

Parental stress in the NICU; effect of parental presence on rounds.

Parental stress in the NICU; effect of parental presence on rounds.

To many of you the answer is a resounding yes in that it reduces stress.  Why is that though?  Is it because you have had a personal experience that has been favourable, it is the practice in your unit or it just seems to make sense?  It might come as a surprise to you who have followed this blog for some time that I would even ask the question but a social media friend of mine Stefan Johansson who runs 99NICU sent an article my way on this topic. Having participated in the FiCare study I realised that  I have a bias in this area but was intrigued by the title of the paper.  The study is Parental presence on neonatal intensive care unit clinical bedside rounds: randomised trial and focus group discussion by Abdel-Latif ME et al from New Zealand and was performed due to the lack of any RCTs on the subject specifically in the NICU.

Before I go on though I have to disclose a few biases.

  1.  I love parents being on rounds so I can speak with them directly and have them ask me any questions they may have after hearing about their infants condition.
  2. Our unit encourages the practice.
  3. We are rolling out the principles of FiCare after being part of the study which encourages parental presence at the bedside for far more than just rounds.For information on implementing FiCare click here
  4. While this study is the only reported RCT on the subject in the NICU, the FiCare results will be published before long.

What is the problem with having families on rounds?

The detractors would say that sensitive information may be more difficult to discuss out in the open for fear that the family will take offence or be hurt.  Another concern may be that teaching will be affected as the attending may not want to discuss certain aspects of care in order to prevent creating fear in the parents or awkwardness in the event that the management overnight was not what they would have done.  Lastly, when patient volumes and acuity are high, having parents ask questions on rounds may lead to excessive duration of this process and lead to fatigue and frustration by all members of the team.

So what does this study add?

This particular study enrolled 72 families of which 63 completed the study.  The study required 60 families to have enough power to detect the difference in having parents on rounds or not.The design was interesting in that the randomisation was a cross over design in which the following applied.  One arm was having parents on rounds and the other without.  The unit standard at the time was to not have parents on rounds.

≤30 weeks 1 week in one arm, one week washout period then one week in the other arm

>30 weeks 3 days in one arm, three day washout and then three days in the other arm

The primary outcome was to see if there would be a significant difference in the Parental Stressor Scale.  table 3

Surprisingly there was no difference across any domains of measuring parental stress.  When we look at questions though pertaining to communication in the NICU we see some striking differences.

Table 2

The families see many benefits to the model of being on rounds.  They appear to have received more information, more contact with the team, contributed more to the planning of the course of their babies care and been able to ask more questions.  All of these things would seem to achieve the goals of having parents on rounds.

So why aren’t parents less stressed?

This to me is the most interesting part of this post.  The short answer is I am not sure but I have a few ideas.

  1.  The study could not be blinded.  If the standard of care in the unit was to not have parents on rounds, what kind of conversations happened after rounds?  Were staff supportive of the families or were they using language that had a glass is half empty feel to it?  Much like I am biased towards having parents on rounds and thanking them for their participation were there any negative comments that may have been unintentional thrown the families way.
  2. Is a little knowledge a dangerous thing?  Perhaps as families learn more details about the care of their baby it gives them more things to worry about.  Could the increase in knowledge while in some ways being pleasing to the family be offset by the concern that new questions raise.
  3. Was the intervention simply too short to detect a difference?  This may have been a very important contributor.  This short period of either a week or two leaves the study open to a significant risk that an event in either week could acutely increase stress levels.  What if the infant had to go back on a ventilator after failing CPAP, needed to be reloaded with caffeine or developed NEC?  With such short intervals one cannot say that while communication was better the parents were not stressed due to something unrelated to communication.  In an RCT these should balance out but in such a small study I see this as a significant risk.

So where do we go from here?

I applaud the authors for trying to objectively determine the effect of parental presence on rounds in the NICU.  Although I think they did an admirable job I believe the longer time frame of the FiCare study and the cluster randomised strategy using many Canadian centres will prove to be the better model to determine effectiveness.  What the study does highlight though in a very positive way is that communication is enhanced by having parents on rounds and to me that is a goal that is well worth the extra time that it may take to get through rounds.  Looking at it another way, we as the Neonatologists may need to spend less time discussing matters after rounds as we have taken care of it already.  In the end it may be the most efficient model around!

 

A Model For Reducing Parental Stress in the NICU.

A Model For Reducing Parental Stress in the NICU.

A good idea that is for sure and stress may be what the infant in the picture is displaying as a reflection of what her parents are feeling!  A growing trend is to include parents in rounds and that is the subject of this piece?  It sounds like a great idea and may feel that way as you have had a personal experience that has been favourable, is the practice in your unit or it just seems to make sense?  It might come as a surprise to you who have followed this blog for some time that I would even ask the question but a social media friend of mine Stefan Johansson who runs 99NICU sent an article my way on this topic. Having participated in the FiCare study I realised that  I have a bias in this area but was intrigued by the title of the paper.  The study is Parental presence on neonatal intensive care unit clinical bedside rounds: randomised trial and focus group discussion by Abdel-Latif ME et al from New Zealand and was performed due to the lack of any RCTs on the subject specifically in the NICU.

Before I go on though I have to disclose a few biases.

  1.  I love parents being on rounds so I can speak with them directly and have them ask me any questions they may have after hearing about their infants condition.
  2. Our unit encourages the practice.
  3. We are rolling out the principles of FiCare after being part of the study which encourages parental presence at the bedside for far more than just rounds.For information on implementing FiCare click here
  4. While this study is the only reported RCT on the subject in the NICU, the FiCare results will be published before long.

What is the problem with having families on rounds?

The detractors would say that sensitive information may be more difficult to discuss out in the open for fear that the family will take offence or be hurt.  Another concern may be that teaching will be affected as the attending may not want to discuss certain aspects of care in order to prevent creating fear in the parents or awkwardness in the event that the management overnight was not what they would have done.  Lastly, when patient volumes and acuity are high, having parents ask questions on rounds may lead to excessive duration of this process and lead to fatigue and frustration by all members of the team.

So what does this study add?

This particular study enrolled 72 families of which 63 completed the study.  The study required 60 families to have enough power to detect the difference in having parents on rounds or not.The design was interesting in that the randomisation was a cross over design in which the following applied.  One arm was having parents on rounds and the other without.  The unit standard at the time was to not have parents on rounds.

≤30 weeks 1 week in one arm, one week washout period then one week in the other arm

>30 weeks 3 days in one arm, three day washout and then three days in the other arm

The primary outcome was to see if there would be a significant difference in the Parental Stressor Scale.  table 3

Surprisingly there was no difference across any domains of measuring parental stress.  When we look at questions though pertaining to communication in the NICU we see some striking differences.

Table 2

The families see many benefits to the model of being on rounds.  They appear to have received more information, more contact with the team, contributed more to the planning of the course of their babies care and been able to ask more questions.  All of these things would seem to achieve the goals of having parents on rounds.

So why aren’t parents less stressed?

This to me is the most interesting part of this post.  The short answer is I am not sure but I have a few ideas.

  1.  The study could not be blinded.  If the standard of care in the unit was to not have parents on rounds, what kind of conversations happened after rounds?  Were staff supportive of the families or were they using language that had a glass is half empty feel to it?  Much like I am biased towards having parents on rounds and thanking them for their participation were there any negative comments that may have been unintentional thrown the families way.
  2. Is a little knowledge a dangerous thing?  Perhaps as families learn more details about the care of their baby it gives them more things to worry about.  Could the increase in knowledge while in some ways being pleasing to the family be offset by the concern that new questions raise.
  3. Was the intervention simply too short to detect a difference?  This may have been a very important contributor.  This short period of either a week or two leaves the study open to a significant risk that an event in either week could acutely increase stress levels.  What if the infant had to go back on a ventilator after failing CPAP, needed to be reloaded with caffeine or developed NEC?  With such short intervals one cannot say that while communication was better the parents were not stressed due to something unrelated to communication.  In an RCT these should balance out but in such a small study I see this as a significant risk.

So where do we go from here?

I applaud the authors for trying to objectively determine the effect of parental presence on rounds in the NICU.  Although I think they did an admirable job I believe the longer time frame of the FiCare study and the cluster randomised strategy using many Canadian centres will prove to be the better model to determine effectiveness.  What the study does highlight though in a very positive way is that communication is enhanced by having parents on rounds and to me that is a goal that is well worth the extra time that it may take to get through rounds.  Looking at it another way, we as the Neonatologists may need to spend less time discussing matters after rounds as we have taken care of it already.  In the end it may be the most efficient model around!

 

Single Patient Room NICUs: Time to Put Parents Minds At Ease

Single Patient Room NICUs: Time to Put Parents Minds At Ease

A few days ago Nick Hall from Graham’s Foundation posted the following question on Linkedin:

Private room vs open bay for the NICU. Can always get a quote from a parent saying it is great but….? At what cost? Impact on staff? Is parent time in those NICUs greater now? Other alternatives?

Included in the post was an article discussing the benefits of such a design.  Below I will look at the benefits and risks and conclude with an answer to his last question.

The NICUs of the 1970s through late 1990s have been described as “barn like” or “open concept” but in recent years the belief that single patient rooms (SPR) would offer greater benefit to infants led to the adoption of such a unit design across North America.  The imagined benefits would be related to improved parent comfort, creating a desire for families to spend more time with their children.  As we move to a “family centred” approach to care, a key goal of all units should be to make their families as comfortable and stress free as possible in order to have a positive experience.

Detractors meanwhile,  speak of concern regarding isolation of such infants when families do not visit and moreover a risk that such infants deprived of sensory experience will have impaired development.  Last year a paper was published that did not help quell such fears; Alterations in Brain Structure and Neurodevelopmental Outcome in Preterm Infants Hospitalized in Different Neonatal Intensive Care Unit Environments (full article in link).  This study which compared infants cared for in SPR to an open unit (the hospital in this study had a mixture of both in their NICU) found a worrisome finding at 2 year follow-up in that the infants in SPR had lower scores on language and a trend towards lower motor scores as well.  Additionally, partly explaining such findings may have been differences noted at term equivalent age in both the structure and activity of the children’s brains compared to those cared for in an open environment.  We were starting construction on a new NICU at the time this paper was published and I can tell you the findings sent shockwaves through our hospital as many wondered whether this was the right decision.

Devil Is in The Details

Looking further into this study, the urban population bore little resemblance to our own.  In our hospital all women are taught how to perform skin to skin care and the majority of our mothers spend a great deal of time with their infants.  To see how successful have a look at our recent Kangaroo Care drive results! The families in this study however the average hours per week of parent visitation over the length of stay ranged from 1.8-104 hours with a mean of 19+/- 19 hours. The average number of days held per week over the length of stay was 0-6 days with a mean of 2.4 +/-1.5 days. The average number of days held skin-to-skin over the length of stay ranged from 0-4 days, with a mean of 0.7 +/- 0.9 days.  In short they were hardly there.

Second Study Finds The Opposite

Later on in 2014 a second study on this subject was published; Single-family room care and neurobehavioral and medical outcomes in preterm infants. Infants < 1500g who were admitted to an NICU between 2008 and 2012 were compared with respect to medical and neurobehavioral outcomes at discharge. Participants included 151 infants in an open-bay NICU and 252 infants after transition to a SPR NICU.

Statistically significant results (all Ps ≤.05) showed that infants in the SPR NICU weighed more at discharge, had a greater rate of weight gain, required fewer medical procedures, had a lower gestational age at full enteral feed and less sepsis, showed better attention, less physiologic stress, less hypertonicity, less lethargy, and less pain. Nurses reported a more positive work environment and attitudes in the SPR NICU.

This study in fact demonstrated greater maternal involvement in a SPR with improvement in outcomes across the board.  It would seem then that in a SPR environment, provided there is enough family visitation and involvement this model truly is superior to the open concept.  Furthermore despite concerns by some nurses that the loss of line of sight to their patients will make for a more stressful working environment this does not seem to be the case.

What About Families Who Cannot or Simply Aren’t Visiting Frequently?

The reality is that there are many reasons for parents to be absent for long periods during their newborns stay. Having a home outside of the city with other children to care for, work obligations, or loss of custody and abandonment due to apprehension are just some of these reasons.  In our hospital, at least 15-20% of all patients admitted are from outside Winnipeg.  The evidence as I see it supports the move to a SPR but what do we do for those children who need more visitation?  The solution is a cuddler program.
CuddlerAs we prepare to move to the new hospital we are grateful for the generosity of our Children’s Hospital Foundation who secured a donor to pay for a coordinator of such a program.  The coordinator’s responsibility will be to ensure that no infant goes beyond a set period of time without feeling the touch or hearing the sound of a voice.  Such a program is in fact already in place at our other tertiary hospital and was featured in a lovely article attached here.

The SPR is the right design in my mind for families with many benefits that spring forth in such an environment. This need not be a win-lose scenario for your hospital. Do not underestimate the power of a cuddler and don’t hesitate to seek support to initiate such a program.  It could mean the difference from going from good to great!