Liz Powell is a paediatric registrar and mum of a young child with a long term condition which means he is frequently in hospital.
What I’ve learnt from being a parent of a paediatric patient…
Like a lot of things in medicine (or indeed life) getting the basics right makes a big difference. My son has had 35+ admissions ranging from elective one day admissions to 10 days. I don’t presume to have an insight into all families with a child with a chronic illness, however I believe there are common themes which can be considered in order to improve the experience of families and to provide more holistic care. Whilst we may not be able to improve the situation, at least having an awareness of what the difficulties are can improve our empathy towards families. Being empathetic doesn’t take any extra time in a busy shift and can really improve a family’s experience.
There are some great resources to gain a broader appreciation of challenges families can face. Patient Voices has stories from patients and organisations including stories from teenagers with severe allergies and sickle cell anaemia. The WellChild #notanursebut campaign, filmed families of children with exceptional health needs, and the films can be accessed on YouTube.
Having a child with a chronic illness can really affect you financially. Whether it’s extortionate car parking charges near a hospital, train tickets or having to get taxis for unexpected trips to hospital, it adds up. There’s also the cost of buying clothes/food/toiletries near the hospital for unexpected admissions. If a child is prone to complications from infection, cheaper options for childcare such as childminders or nurseries may not work. Parents may have had to leave their employment in order to care for their child.
I was fortunate that I was breastfeeding and therefore was able to have hospital food when my son was younger! I’m not sure about the logic regarding feeding mothers of newborns who are breastfeeding and not those who are bottle feeding. The mothers bottle feeding are likely to be as tired and potentially unable to leave their young baby as much as the mother breastfeeding, particularly if there are other children at home and their partner is tied up looking after them. It’s really hard trying to get yourself food when your child is admitted. If you’re there by yourself with a clingy, unwell toddler, it’s often hard to nip out for supplies. I’ve always thought microwave meal vending machines would be a helpful addition to paediatric wards… We had an amazing nurse in A&E looking after my son a few months ago who made my husband and I a cup of tea when blood results took hours to come back, little gestures such as these make a big difference.
I think siblings are often overlooked in paediatric care. It is understandable that siblings can’t be present at every admission or appointment. However, when you have one child with a chronic illness it can really help the sibling’s understanding if they are present for some of their care. As well as it being a logistical nightmare to organise childcare for the ‘well one’ on every occasion. Siblings can also be an amazing ‘medicine’ – when my son is unwell the person who can cheer him up is his twin sister. Unconventionally, he will often get blood tests done whilst I have both of them sitting on my lap. It noticeably helps both of them – he seems more comforted and she has more understanding and less fear of what happens to him if she’s not there. I appreciate it may not be appropriate and they handle the situation very well while other young children may not, but thinking outside the box and accommodating families can be done.
I have found the fairly strict ‘no sibling’ rule on the daycare ward difficult. I think this blanket policy (which is appropriate for one-off admissions such as a minor surgical procedure) is not always appropriate for chronic patients. However, I have also had great experiences on daycare when I have been totally stuck for childcare and the nurses have snuck us all into a cubicle!
I think one of the things I have learnt from our situation is to tell families early on what your thoughts are about admission. Even if after observation you may change your mind, at least wheels are in motion to organise alternative childcare for siblings.
A lot of good or bad experiences come down to communication. In an acute situation, communicating in a way in which shows that you respect that parent’s threshold for seeking medical support is important. It is likely the family have taken a considered opinion that they need to go through the painful process of attending A&E because they are worried about their child. The threshold for seeking assessment will likely vary depending on recent experiences of illness, stress, current symptoms and past experience. I have had to previously argue for my son to have bloods done, which did change his management on that occasion. It was upsetting to have to argue. Conversely, I have had experiences where the registrar has listened and understood the reasons we have presented, and he hasn’t needed admitting, where I really appreciated having been listened to.
The most helpful conversations I’ve had regarding decisions have been when we were told ‘there is no right answer’ and having discussions about pros and cons regarding options for future management. Whilst opinions may vary within a team, it helps if there is consistency of approach from the team in the management in order to build trust with the family.
Even the slightest bit of empathy makes all the difference. I remember when my son was discharged once (probably around 20th admission when he was approx. 20 months), one of the nursing staff cut off his name label and commented ‘I’m guessing you’re over saving these!’. I don’t think it crosses professional boundaries to have some empathy about a situation, yet we don’t always do it.
Dealing with medical parents
There is often a natural trepidation in seeing patients of ‘medical parents’. I’m usually upfront about being a doctor as times I haven’t said anything, it comes across pretty quickly even if I’ve tried to cover it up! Depending on the day, I can find it essential for my sanity to talk in detail and medical speak. Other times having 2 young children crawling all over me I am not that worried about a detailed explanation of the pathophysiology… I think the phrase ‘be a mum not a doctor’ is not that useful. The reality is you can’t switch off, I do make a medical assessment on whether I need to take him to A&E, and I do stay on top of reading guidelines about his conditions.
I could talk about sleep (or more accurately the lack of it) for hours and hours, as I suspect most parents of young children can – particularly parents of multiple births. Whilst it’s inappropriate to delay a lot of interventions in hospital for a sleeping baby, it can make a huge difference if someone closes the door quietly, or is particularly gentle when doing observations or an examination so that they don’t wake up. Especially if you’ve got two you’re trying to convince to get to sleep by singing ‘twinkle twinkle little star’ on loop while rocking ‘the well one’ in a buggy with your foot and shushing and patting the other one in a cot. I think 6am observations are torture. You’ve finally managed to get to sleep on a busy, noisy ward to get woken up at 6am, following which I find it impossible to get more sleep.
Whilst I know several hospitals have the A&E as all the specialties ‘front door’, I don’t think it works for patients with chronic illnesses. Being in a busy waiting room in winter surrounded by children with viral infections is not a happy place for anyone but when you’ve been there many times before and your child gets more than the usual complications from viral infections it’s pretty depressing to be the only option. I think bypassing the A&E waiting room by being able to go to a paediatric assessment unit would be less stressful.
I’m not saying A&E experiences can’t represent great care though. The last time my son was admitted, there were no beds available and we had pretty much the whole day in A&E waiting for one. I had my daughter with me who was also unwell and miserable. The nurses were great at finding us a cubicle, and the play specialist found a nursery’s worth of entertainment to try and keep them amused. It converted a very difficult day into a tolerable one. My lasting impression from that event was how sympathetic and empathic the staff were, not how long we waited for a bed.
Good & bad experiences
To finish off, to decide on what makes a good and bad experience I’ve turned to the opinion of two 3 year olds.
What do you like about the hospital?
J (the patient) “That thing we watch the Thomas film on” (DVD +video set rolled out in A&E to keep patients amused, he’s a big Thomas fan)
L (the sibling) “The red cars we ride in” (The ride-in cars in the outdoor play area)
What don’t you like?
L “there’s no toilets outside so we have to come in and go to the toilet”
It’s clear then. The NHS needs to provide outside toilets in the outdoor play areas!
On a more serious note, one of the comments that has stuck in my mind from my son has been after a cannula. Me: “you were really brave”, J: “But I cried that time” – reminding me not to forget that although he copes well with procedures, he still needs support and reassurance.
Liz has previously written an article for PaediatricFOAM on infant allergy – check it out here!