Partnership: patients, parents and professionals working together

This October’s Growing Families event in Manchester will be exploring evidence and expectations around the early days with baby.  One of our breakout sessions is entitled “Parenting Under Pressure”, and will be led by Helen Calvert of hospital breastfeeding, by Catriona Ogilvy of The Smallest Things and by Lynne Barton of Entrust Care Partnership. They will be exploring what happens when the parenting journey has additional challenges added to it, such as premature birth, illness or disability.

We are delighted today to have paediatrician Victoria Thomas write for us about partnership working when your child is unwell – a key element of parenting under pressure.

growing-families-icon-jpeg

Shared decision making is a popular and well-established concept in medicine, summarised well as ‘the clinician explaining the medical evidence for different options and family members discussing these options in the context of their personal values. With both the medical evidence and personal values delineated, the clinician and family jointly determine the treatment plan’ (Fiks and Jimenez, Acta Paediatr, 2010 October; 99 (10): 1464-1466)

This sounds ideal. Surely as parents and professionals shared decision making should be reasonably straightforward – after all, don’t we all just want what is best for the child or young person? Yet sometimes there seem to be clashes between families and professionals. In this blogpost I’m going to look at some of the reasons why these occur, and what both groups can do to work through or avoid them in the first place.

Time –  or the lack of

A ‘business’ ward round or busy clinic where there are dozens of patients to be seen and the team feel under pressure is not the ideal time for complex discussions. There is often no privacy, clinicians are being interrupted by bleeps and queries, and carers have other commitments – the school run for other children, getting to work. Any topic which needs long discussion doesn’t lend itself to this environment. It works much better to come to the conversation with the time it warrants, and it is perfectly acceptable for either party to say words to the effect of, ‘this isn’t the right time for this conversation, can we set aside the time it needs for later/tomorrow/next week?’. By the same token, parents and clinicians are both vulnerable to exhaustion, stress, hunger. No helpful exchange of views was ever had when one or both participants was ‘hangry’! Clinicians and carers both benefit from a chance to rest or refuel before getting into complex discussion wherever possible.

Mismatched agendas and making maps together

It is hard to work together when our thoughts are going in different directions. Setting an agenda jointly helps everyone. Some parents understandably find this challenging, as they feel uncomfortable directing professionals, but it can be much easier once there is clarity around the concerns of both sides. An example of this that sticks in my mind is a respected and brilliant colleague who spent an entire clinic appointment with a teenage girl feeling like he was getting nowhere trying to engage her in the management of her chronic health condition. It was only after the consultation that she emailed him to say she had been trying to tell him that she was pregnant and wanted advice on that topic.

Sometimes communication is like the punchline to that old joke about asking for directions: ‘well, I wouldn’t start from here!’ Sitting down to look at the map together first can help hugely. Some of my work involves optimising nutrition for children with complex medical needs. Talking with families about their background feelings about food and previous experiences is invaluable. It can be all too easy for me to be working off a script about food as medicine, when parents are thinking about the importance of shared eating experiences or the practicalities of managing complex regimens. Opening the dialogue on both sides opens our minds.

Similarly, I have learned of the understandable fear carers experience when meeting a new clinician; the stress of having to tell a story from scratch or the dread that the new professional will try to revisit treatments that have proved to be dead ends in the past. Pithy summaries and focusing in on two or three key areas of concern can help with this. Teams often try to maintain continuity for this reason, but shift systems, clinical commitments, the rotation of clinicians in training and other demands on time can make this more challenging – I am feeling very conscious of this as I am writing this article while on maternity leave! Bringing a previous clinic letter to appointments that summarises key events and issues to the satisfaction of the family can be really helpful as sometimes NHS files go missing.

stethoscope

Well-meaning paternalism (and its consequences)

The road to paternalism is paved with good intentions. So much of the time clinicians intend to make life easier for parents who are going through the most challenging time of their lives – caring for a seriously ill child – but get it wrong. Breastfeeding is a key example of this. Often healthcare professionals well-meaningly meddle with breastfeeding, thinking that it puts additional pressure on a mother already dealing with huge stress. When we do this, we ignore the benefits for both mother and child of breastfeeding, and we override the mother’s right to make her own decisions. When families are given the complete information they need, and the time to absorb it, then they are empowered to make decisions for themselves. Just because we are paediatricians, we must remember not to treat everyone we encounter like children. We do not get the right to decide what is too hard for parents to do.

Where is the patient in this?

One of the joys of paediatrics is learning the art of the triadic consultation: how to work with parents and children and young people at the same time. As children get older, the dynamic of the relationship is constantly shifting. It can be hard for both parents and professionals to recognise this development. I was asked to ‘do the sex education chat’ with several teenagers when I was new to a service, as the professionals who had been caring for the children from babyhood struggled to see them as young adults. We need always to be looking to the young person to tell us what their concerns and dreams are, and accepting that those are what must set the agenda.

Sometimes we all need to take a step back and look at what the child needs; as parents and professionals we each have pieces of the puzzle and we need to put those pieces together to get the whole picture.

Nobody is perfect – neither professionals or parents

Writing this post has made me cringe a little inside, remembering all the times I’ve misread cues or mismanaged conversations with young people and their families. It feels a little like I am claiming I know what I’m doing. In fact, I’ve learned the most from the situations where I got it wrong and the families I work with were forgiving enough to move on from my clumsiness. In the same way, I always remember that families are under constant, immense pressure, and a truly therapeutic relationship incorporates a little grace at those worst times. Anger, tears and questions are all part of the deal.

The most positive partnerships are not those where no one ever makes a misstep, they are the ones where both sides are able to accept and move on from the difficult moments.

Setting out on a journey together

I think the parent-professional relationship works best when we see ourselves as fellow travellers puzzling out a route together rather than the clinician taking on the role of the satnav directing the course. After all, a satnav is all too easily ignored! A satnav cannot understand that I need to pull off the route it wants so I can feed my baby, or because I’ve suddenly remembered I need to stop at the supermarket, but a co-pilot can understand these issues and help me navigate them. Travelling the path together helps us negotiate the obstacles together. And in the end, it is surely in the best interests of the children in our care.

 

Dr Victoria Thomas
August 2016

To book your place on “Growing Families: Facts, Fiction and Other Stuff” please click here.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s