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Found 6 results

  1. Work becomes more difficult.. https://www.nytimes.com/2017/02/27/well/family/what-happens-when-parents-are-rude-in-the-hospital.html
  2. 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 So 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.
  3. It’s World Prematurity Day today and if you are a parent or are caring for a baby who has just entered this world before 37 weeks GA you are now part of a membership that counts 15 million new babies each year according to the WHO’s data. As I tell most new parents who have a baby admitted to our unit “It’s ok to take some time to adjust to this. You didn’t plan on being here”. That is true for most who go into spontaneous labour but of course those who are electively delivered due to maternal or fetal indications that have been followed closely often have time to prepare for the journey to the NICU. Many of these parents will have had the opportunity to visit the NICU or even connect with other parents before the anticipated birth of their child to at least get a glimpse into what life is like in the NICU. Much has been written about parental stress and methods to reduce it and I find that a piece that appeared in the Huffington Post offers some good pointers to helping parents manage the transition from pregnancy to NICU. The piece is entitled 5 Things Never To Say To Parents Of Preemies (And What To Say Instead). It is well worth a read but the one thing that stuck out in my mind is one very important thing to say. Congratulations on the birth of your baby There is no doubt that the family who gives birth to a preterm infant is experiencing stress. What may be lost in the first few days of surfactant, central lines and looking for sepsis among other things is that a new member of the 15 million strong has entered this world. They have a new child and just like anyone else should receive a congratulations. No one needs to tell them to be worried. They already are and likely view many of the possibilities more pessimistically than you do. Taking a moment to say congratulations though may go a long way to reminding them that amidst all this stress there is something to rejoice in and look to the future. If we aren’t supportive then I have no doubt the subconscious message is that they shouldn’t have hope either. I am not suggesting that we sugarcoat what is really going on but one can be honest about likely outcomes and still celebrate the arrival of a new baby. Much has also been written recently about a number of strategies to reduce stress in the NICU such as skin to skin care, integration of families more closely into the patient care team and forming parent support groups just to name a few. What else can be done to improve the quality of life for parents going through this journey? Enrol Your Baby In A Research Study I work in an academic centre and given the volume of research projects at any given time there is a need to approach families and sometimes quite soon after delivery. interestingly, I have heard from time to time that individuals have been hesitant to approach families due to a feeling that they are overwhelmed and won’t be receptive to being approached in this fragile state. I am guilty of the same thoughts from time to time but maybe it is time I reconsider. Nordheim T et al just published an interesting study on this topic entitled Quality of life in parents of preterm infants in a randomized nutritional intervention trial. This study was actually a study of parents within a study that called the PreNu trial that involved an intervention of a energy and protein supplemental strategy to enhance weight at discharge. The trial was an RCT and unfortunately although well intentioned was stopped when the intervention group was found to have an unexpected increase in sepsis rates. Although this study did not ultimately find a positive outcome there were additional analyses performed of quality of life and parental stress at two time points the first being during the hospital stay and the second at 3.5 years of age. The patients were all treated the same aside from the nutritional intake and in the end 30 intervention parents and 31 single parents not enrolled in a study (many in couples) participated in the study. In followup a little less than 70% completed the stress measures at 3.5 years. The results are found below. How Do We Interpret This The parents in this study who were part of the intervention group were about 3 years older so perhaps with more life experience may have developed some better coping strategies but during the hospital stay those who participated in research had better measures of quality of life and at three years better reports of sleep and energy levels. The study is quite small so we need to take all of this with a grain of salt with respect to the 3.5 year outcomes as there are so many variables that could happen along the way to explain this difference but I think it may be fair to acknowledge the quality of life measure during the stay. Why might parents report these findings? The finding of better quality of life is especially interesting given that more patients in this study had sepsis which one would think would make for a worse result. Here are a few thoughts. Involvement in research may have increased their knowledge base as they learned about nutrition and expected weight gain in the NICU. Frequent interaction with researchers may have given them more attention and with it more education. Some parents may have simply felt better about knowing they were helping others who would come after them. I have heard this comment myself many times and suspect that it would be attributable at least to a certain extent. A better understanding of the issues facing their infants through education may have reduced stress levels due to avoiding “fear of the unknown”. Regardless of the exact reason behind the findings what stands out in my mind is that participation in research likely provides comfort for parents who are in the midst of tremendous stress. Is it the altruistic desire to help others or being able to find something good in the face of a guarded outlook? I don’t know but I do believe that what this study tells us is that we shouldn’t be afraid to approach families. After first congratulating them give them a little time to absorb their new reality and then offer them the chance to improve the care for the next 15 million that will come this time next year for World Prematurity Day 2017.
  4. This is a title that I hope caught your eye. In the nearly twenty years I have been in the field of Pediatrics the topic of parking being a barrier to parental visitation has come up again and again. A few years ago the concern about the cost of parking was so great that I was asked if I could find a pool of donors to purchase parking passes to offset the burden to the family. The theory of course is based on the idea that if parking were free in the NICU parents would visit more. If parents visit more they will be more involved in the care of their baby, more likely to breastfeed and with both of these situations in play the infant should be discharged earlier than other infants whose parents don’t visit. Try as I might it was a tough sell for donors who tend to prefer buying something more tangible that may bear their name or at least something they can look at and say “I bought that”. This is quite tough when it comes to a parking stall and as such I am still looking for that elusive donor. Having said that, is there any basis to believe that free parking is the solution that will deliver us from minimal visitation by some parents? A Study May Help Answer The Question Northrup TF et al published an article that was sent my way and to be honest I couldn’t wait to read it. A free parking trial to increase visitation and improve extremely low birth weight infant outcomes. This is like the holy grail of studies. A study that gets right to the point and attempts to answer the exact question I and others have been asking for some time. The study took place in Houston, Texas and was set up as an RCT in which families were randomized into two groups. Inclusion criteria were birth weight ⩽1000 g, age 7 to 14 days and deemed likely to survive. Seventy two patients were enrolled in the free parking group while 66 were placed in the usual care. Interestingly the power calculation determined that they would need 140 to show a difference so while 138 is close it wasn’t enough to truly show a difference but let’s see what they found. The Results Free parking made absolutely no difference for the whole group. Specifically there was no difference in the primary outcome of length of stay or hours spent per visit. Some interesting information though that may not be that surprising was found to be of importance in the table below. It may not seem like a surprise but the patients who were more affluent and those who had less children tended to visit more. The latter makes a lot of sense as what are many people to do when they have one or more other children to care for at home especially in the face of little support? Would free parking make one iota of difference if the barrier has nothing to do with the out of pocket cost? The conclusion was that the strategy didn’t work that well but as you may have picked up I think the study was flawed. By applying the strategy to all they were perhaps affected by choosing the wrong inclusion criteria. Taken to an extreme, would a 50 million dollar Powerball winner care one bit about parking vouchers? It wouldn’t make any difference to whether they were going to come or not. Similarly a single mother with 5 other kids who lives below the poverty line and has little support is not going to come more frequently whether they have a voucher or not. What if the study were redone? I see a need to redo this study again but with different parameters. What if you randomized people with a car or access to one who lived below a certain income level and had a committed support person who could assure that team that they could care for any other children the family had when called upon? Or one could look at families with no other children and see if offering free parking led to more frequent visitation and then from there higher rates of Kangaroo Care and breastfeeding. I for one haven’t given up on the idea and while I was truly excited to be sent this article and sadly initially dismayed on first read, I am hopeful that this story has not seen it’s end. It is intuitive to me that for some parents parking is a barrier to visiting. Finding the right population to prove this though is the key to providing the evidence to arm our teams with evidence to gain support from hospital administrations. Without it we truly face an uphill battle to get this type of support for families. Stay tuned…
  5. 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. 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. Our unit encourages the practice. We are rolling out the principals 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 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. 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. 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. 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. 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. 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!
  6. I just found this article an "editor's choice" in ADC, a randomized trial on parental presence on neonatal intensive care unit clinical bedside rounds. http://fn.bmj.com/content/100/3/F203.full 95% of parents and 90% of staff supported that parents attending ward rounds and the researchers concluded that: We have been aiming at rounding with parents "as team members" since several years and I have very good experience myself. Parents who often see their babies more hours than any staff can contribute with valuable observations, they become better informed, we can make plans together with parents (feeding strategies etc) and they also become more engaged with everything. How we have solved the confidentiality: those parents in the NICU room that "wait for their turn" listen to radio through Peltor Earmuffs