Learning from Paediatric Patient Journeys

What Children and Their Families Can Tell Us

Chloe Macaulay, Polly Powell, Caroline Fertleman, Chloe Macaulay, Polly Powell, Caroline Fertleman

• Verlag: CRC Press
• Jahr: 2016
• ISBN:
  9781315349725
• Auflage: 1
• Thema: Medicine
• Thema: Medical Theory, Practice & Reference

Good healthcare is about more than making a diagnosis and giving the correct medical treatment - the experience of those going through the system is hugely important. As a result, the use of patient stories or "narratives" in learning is gathering significant support and interest. This is a collection of such narratives from children and from the parents of children with a range of long-term or complex conditions. They would be useful for medical students and instructors, but also for anyone working for children with chronic and complex conditions, including nurses and other allied health professionals, as well as psychology students. There are also essays on points arising from a parent and from those involved as a tutor and as a student.A free sample chapter is available via the Downloads / Updates tab on our website.

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How to Use This Book

Chloe Macaulay, Polly Powell and Caroline Fertleman

This book is a collection of stories that represent the journeys of the many families who have children with long-term or complex conditions.

It is not rocket science, and yet it feels as if we are only just beginning to realise that good healthcare is about more than making a diagnosis and giving the correct medical treatment – the experience of those going through the system is hugely important. Parents will remember forever how a piece of news was broken, or the nurse who was dismissive when their child said he was hungry, or the one who noticed his team’s football shirt that he is so proud of. And communication – communication is absolutely key.

We developed these patient journeys for our undergraduate course in Paediatrics and Child Health as a response to the recognition that not enough emphasis was being placed on the patient journey – not only the physical journey through the different professionals, hospitals and organisations that children with severe or complex illnesses have, but also the social and emotional journey. How does it feel to have a ‘label’ of cerebral palsy? What impact does having a child with a disability have on your ability to work or to get after-school care? How does it affect siblings? We felt that talking to patients and parents about their experiences would not only help our students to develop as reflective, thoughtful clinicians, but would also expose them to the challenges of the system – the obstacle courses that families have to try and navigate themselves.

So we started collecting stories from families, real-life stories of their experiences – some good, some bad. Most are a combination of the two. As we explored these stories with our medical students, we encouraged them to see the experiences from the families’ perspective, to put themselves in their shoes – ‘How would it feel to be told that your child might die, or to be told you were being irrational?’ Several themes emerged time and time again – the importance of communication, the difficult aspects of diagnosis and clinical care, roles and responsibilities, the emotional impact on us of working with children and families, the wider impact of illness and the often confusing organisation of care and services. Our students told us that they found that studying and discussing patient journeys and talking to families gave them a completely different perspective. Because of this, we have tried to make them more widely available in this book.

Although developed for use with medical students (many of these stories have actually been collected by medical students), we feel that these journeys would be useful for anyone working for children with chronic and complex conditions, including nurses and other allied health professionals, as well as psychology students. They are all real – the words of children, parents or family members.

At the end of the book, you will find a short account from one of our students, discussing what exploring these stories has meant to her. We have also included a chapter written by child psychiatrist Dr Sebastian Kraemer, whose insights and experience led to wonderfully rich discussions with the students about the journeys. His chapter helps us to understand the challenges we as individuals face when we step into a patient journey and why it is important to reflect on our experiences. Finally, one of the parents who has kindly allowed us to use her family’s story in this book concludes with her thoughts and feelings on why it is important for us all to listen to and reflect on patient journeys.

There is no set way to use this book. We have used the journeys as a focus for discussion in small groups with both a paediatrician and a child psychiatrist, but they can be read alone or used for written assignments. There are lots of different themes or issues that come out of each journey – we have added a suggestion of topics for discussion aligned to the themes that have emerged for our group. This is not by any means an exhaustive list, but is there as a prompt to help get you started. Reading and discussing these stories is only the beginning. We hope that it will encourage you to start having different conversations with families and exploring and improving your own patients’ journeys.

Thank you to the families who have shared their journeys with us. We hope that many families will have better journeys as a result.

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Patient Journeys

Chloe Macaulay, Polly Powell and Caroline Fertleman

Most of the names of the children in this book have been changed to protect anonymity. However, David and Dillon’s parents wanted their children’s real names to be used.

AASIF

When my wife and I first heard she was pregnant, we were so thrilled. For a while, everything was perfect. It was only when Aasif was about 3 years old that we noticed something was wrong. His stomach was very swollen and hard. We were quite concerned – parents’ intuition I think – so we took him to the paediatrician at our local hospital. He just brushed aside our concerns and said, ‘It’s probably gas! Nothing to worry about’.

A week later, we were at an appointment with the physiotherapist about his walking. She noticed his tummy and said, ‘This isn’t normal, it could be his spleen’. She referred us to another hospital about 40 minutes’ drive away. They were great there and everything was dealt with so smoothly. We were happy not to be going back to our first doctor after our past experience. They referred us to the children’s hospital within a week. What a difference in service!

At the children’s hospital they did every test imaginable. It was a relief to finally be getting somewhere. We went home to wait for the results, but over the next couple of days, Aasif got very ill. He was waking up in the morning, shaking and vomiting. We just wanted to know what was causing it. We were called back to the children’s hospital within 3 days for more tests.

Aasif was getting restless by now; it was a lot for a 3 year old to take in. I could tell it was making my wife anxious – she stopped eating or sleeping. I had to keep it together for her and Aasif. The dad is supposed to be the strong one, I guess.

Then the diagnosis was made. It was like a weight had been lifted. The doctor told us Aasif had glycogen storage disorder type 3, something very rare. We were told it might have been something to do with the fact that my wife and I are cousins, because of our genes and stuff. We felt very guilty at first, knowing we could have caused this. In our culture, this isn’t seen as a problem, and our religion and culture are part of who we are. Given the chance again, I wouldn’t do anything differently. We love Aasif so much as he is. It’s just the hand you’re dealt, God’s will. At least that’s what I believe.

At 4 years old, Aasif had a nasogastric tube fitted to help him with eating. We had an awful time with it. He was so self-conscious going to nursery. He’d get really upset every morning before going and then when he was there he would cry constantly. It was horrible to see him so distressed. We worried about his development too. He’d already been late to start walking, and with all these problems at nursery, we could see him falling even further behind. He’s at a mainstream school now and they’re doing their best to help us, but we have to accept that it’s never going to be enough. We like him being with other kids his age, but we have to be realistic. We’re looking into sending him to a special school, but the ones near us are expensive. My wife has had to give up her job and I’m working every hour God sends, so we’re struggling as it is.

After a couple of years with the nasogastric tube, we knew something had to be changed. Aasif just wasn’t happy. We’d spoken to lots of doctors about a PEG before, but I wasn’t too sure about it. I did a lot of reading; I had to completely understand what it was and how it worked before he could have it fitted. The doctor arranged for us to talk to a family who had a little boy with a PEG. They told us what a difference it had made for them, and hearing their story reassured me that it was nothing like I had imagined.

Aasif has had the PEG for 4 years now and we’ve never looked back. What a difference! They taught my wife how to do everything and now she feeds him three times a day. She even goes into his school to give him his 11 o’clock feed. It’s a full-time job for her, she’s an expert. She can tell when he’s going to have low sugar without even testing his bloods.

We used to really worry about his development, but now we’re just seeing how it goes. He can’t write and his speech and language are quite behind, but we don’t like to focus on what he isn’t doing yet. Every time he learns a new word or does something new is a little victory. We’ve learned to adjust our expectations. We try not to compare him to other children his age, what’s the point?

We’ve discussed having more children and we’ve been offered genetic counselling, but at the moment Aasif is our main priority. He needs all our energy and attention right now. We want everything for him; more physiotherapy, more educational help… there’s a long list. A sister or brother for him would be wonderful, but if it happens, it happens. We’ll just see how it goes…

Journey collected by Anna Mullan, medical student

GLOSSARY

genetic counselling: Families are seen by a Geneticist (a doctor specialising in genes and inherited conditions) and are given advice based on their family history and genetic testing about their risks of passing on conditions to their children. In this case, the parents are cousins and therefore may be at increased risk of passing on conditions that run in the family to their children.

glycogen storage disorder type 3: A rare inherited disorder that can cause build-up of glycogen in the body. This can lead to abnormal functioning of the liver and muscles and to the liver becoming enlarged. There are different types, but children may suffer with low sugar levels and hyperlipidaemia (high fat levels in their blood). They can go on to develop problems with their liver function and liver failure. It is usually managed with a special diet.

nasogastric tube: A plastic tube put through the nostril, down the oesophagus and into the stomach. It can be used to administer nutrition and medicines.

PEG: Percutaneous endoscopic gastrostomy. This is a small tube inserted through the skin of the abdominal wall and into the stomach in order to administer nutrition and medicines directly into the stomach. It is inserted in an operating theatre while the child is asleep.

THEMES FOR DISCUSSION

Information and communication

• Parental intuition

Roles and relationships

• Different family roles

• Family members as carers

Diagnosis and clinical care

• Genetic counselling and testing

• The ‘relief’ of receiving a definite diagnosis

Wider impact of illness

• How illnesses are perceived in different cultures and religions

• Helping children with medical conditions to integrate

Organisation of care and services

• Financial help available to families

• Special schools

ABBEY

First of all, I should tell you that I’m a Type 1 diabetic, but I wasn’t diagnosed until after my first pregnancy. Before I became pregnant I experienced some odd changes. I lost about 10 kg and I was really angry and temperamental all the time. We know now that it was the onset of the diabetes, but at the time my partner, and even I, thought I was going crazy.

A few months later I fell pregnant. One day at a routine appointment at 29 weeks, the midwife mentioned to me that I had raised ketones. She didn’t explain what these were, and sent me home telling me to expect a letter for an appointment. This was in December, so when the letter didn’t arrive I thought it was probably due to Christmas delaying everything. I thought that because they hadn’t sent me the appointment, it couldn’t have been that important.

It wasn’t until after the New Year that I realised that something was really wrong. I went into the emergency department at my local hospital and was admitted immediately. I was told that I had developed gestational diabetes and that this had caused blot clots to develop in my unborn son’s brain and lungs. I lost him later that day.

After that, the doctors told me that I should keep all the appointments that had already been made. I had to go to a gestational diabetes clinic only a few days later. When I came in, they started asking me questions about when the baby was due. No one had thought to let the team know that I had lost the baby; I had to tell them myself. There was a communication problem at that hospital. In fact, there were a lot of communication problems. I was actually even berated by one of the nurses there. She told me that I should have gone straight to hospital when the midwife told me I had raised ketones, and how silly I was to wait for an appointment. I was doing what the midwife had told me to do. I trusted her. How was I supposed to know any different?

There followed a pretty tough few months as I tried to cope with losing my baby and began to lose weight and have mood swings again. Finally, I was diagnosed with Type 1 diabetes and all those days and weeks of feeling unwell began to make sense. A year and a half later I became pregnant again. This time my care was at a different hospital. The doctors decided that with my diabetes, it would be best to induce my pregnancy at 35 weeks, but my waters broke 3 days before the induction date. After I was admitted, a midwife gave me the drugs to induce labour, even though it had already begun. I suppose it was another communication error, but after that everything went crazy. I had what felt like 50 people in the room. They told me I was having an emergency caesarean section. The anaest...