Preparing for Cardiac Surgery
Psychological Health Services – Lifespan Cardiac Psychology Team: Vanessa Garratt, Michelle O’Keeffe, Nell Ellison, Joanna Latham
Authors: Dr Michelle O’Keeffe, Specialist Clinical Psychologist and Dr Joanna Latham, Clinical Psychologist
When someone is diagnosed with a congenital heart condition they will be looked after by a network of clinicians who work together to form part of the South West and South Wales Congenital Heart Disease (CHD) service. If the team feels that cardiac surgery is the next treatment step for someone they will be invited to either Bristol Royal Hospital for Children or Bristol Heart Institute for their surgery and care.
There are several positive reasons to have cardiac surgery. For many people it may mean being able to get back to school or work and being able to engage in activities they find fun and enjoyable. Additionally, people may benefit from having more energy and feeling less breathless, having peace of mind that their heart is stronger and working more efficiently, and ultimately living a longer and healthier life.
As a team of four Cardiac Clinical Psychologists we offer support to children, young people, and adults who feel a mixture of hope and relief to be offered surgery for a cardiac condition, but may also have questions and worries about surgery might be like. Cardiac surgery is a positive but significant event for a person and their family to go through so it is not surprising that people might feel a bit anxious before and afterwards. Anxiety is a normal experience in the context of having surgery. This article explores some of the concerns people may have about cardiac surgery and provides some ideas for how to manage these concerns.
Children and Young people
Children and young people often tell us that experiencing cardiac surgery and hospital life has helped them feel stronger and more emotionally resilient. While they develop the courage to get used to different environments and being around different people, sometimes there will be worries about the cardiac surgery. Some concerns highlighted by young people are about missing school whilst in hospital, being away from their family members, and not being able to spend as much time with their friends during their admission. Additionally, on the day of the operation young people may wonder about how they will be anaesthetised and what the operation will feel like. After the operation, it is common for young people to be focused about the appearance of the scars.
We can know it can help to:
- Consider visiting the hospital prior to the surgery; having a ‘tour’ of Dolphin ward, outpatient areas, the playroom
- Talk to parents or friends, and not ‘bottle up’ feelings
- Ask questions about the heart, hospital and surgery
- It may helpful for young people to talk to people in their form and the teachers, about why they are going to be off school for a while
- Consider doing a ‘Question and Answers’ presentation about the heart operation
- Talk to and use the teams in the hospital – the Cardiac Nurse Specialists, Play Specialists and Cardiac Clinical Psychologists
Surgery is an important step in the treatment of your child’s heart condition and families often tell us that they look forward to getting through this important step and getting back to normal life. However, as a parent of a young person with a heart condition, it is understandable that you will experience a range of worries before, during and after the heart surgery. It is typical for parents to be worried about how to tell their child about their heart condition, what will happen on the day, the risks of surgery, and how to cope during this tough time. Many parents tell us that after the cardiac surgery, they have a new appreciation for life, their perspectives have changed, and that they are able to enjoy family life more than before. During the child’s hospital stay parents find themselves thinking about how they take time off work, finances, and childcare for siblings. It is also common for parents to wonder about the recovery process and the duration of the hospital stay.
We know it can help to:
- Encourage children to talk about how they are feeling – are they worried, scared, sad, or angry?
- Use the British Heart Foundation’s Sammy’s Heart Operation story book to help your child understand what is happening. It is free to download here: https://www.bhf.org.uk/publications/children-and-young-people/sammys-heart-operation
- Talk to your children about how the hospital is a place where people go to feel better, and that there will be games, snacks, and other young people to talk to
- Talk to your partner, your parents and your friends about how you are feeling
- Remind yourself that it is ok to feel stressed and worried in the context of a very tough situation
- Remember to be kind to yourself, that you are not expected to cope all the time, and that there will be days where you feel up and down
- Talk to and use the teams in the hospital for support – the Cardiac Nurse Specialists, Play Specialists and Cardiac Clinical Psychologists
As people get older they may have different worries about cardiac surgery to when they were younger. Everyone has their own unique experience of living with congenital heart disease but it may be helpful for people to know that they are not alone in some of their fears about surgery and the recovery process. Below are some of the common worries that people experience.
People often have mixed feelings about surgery. They may feel relieved to know that there is something that can be done to improve their heart function and hopeful that this will improve the length and the quality of their life. However, it can often come as a shock when people are told they need to have cardiac surgery. Often with CHD people know there is a chance they will need another operation at some point in their lives but they often hope that this will never happen or that it will occur much further in the future. It can be especially tough to hear this news when you have memories of previous surgeries that may have been difficult for you. People often worry “Will I wake up from the anaesthetic?” or “Will the surgery be a success?” It is understandable and normal for people to have these questions but it is not a sign that something is wrong or that you should not have the surgery.
We know it can help to:
- Talk to family and friends about how you are feeling
- Do things that make you feel good such as reading, watching a movie, going out with friends and family, playing with your pets, meditation, gentle exercise, cooking, hobbies etc.
- Keep a list of any questions you have about the lead up to surgery, surgery itself and the recovery process and bring these to your appointments with the team. The congenital team is there to answer all your questions or concerns no matter how big or small. If you forget to ask something in a face-to-face appointment then it can be helpful to know the Clinical Nurse Specialists have a hotline which you can call between 9-5pm Monday-Friday on ph: 0117 342 6599
- Remind yourself that your cardiac team would not have recommended you have surgery if they did not think there was a high chance that they could safely get you through the procedure and address the problem with your heart.
Impact on family
People often worry about surgery for themselves but also the impact this will have on their family. They may have concerns about how family life will continue during the recovery process and worry, “What if something happens to me? How will my partner, children, parents or siblings cope?” These are normal and understandable thoughts to have but again it is not a sign that surgery is not the right choice for you.
Our loved ones are very important to us so it is understandable that we would worry about them and for them to worry about us.
We know it can help to:
- Recognise and accept that different people have different ways of managing during times of stress, and that it is important to find coping strategies that work for you and support your loved ones to find strategies that work for them.
- Talk to family and friends about how they are feeling about surgery. You are all going through the same situation but from different perspectives.
- While waiting for surgery some people find that it can be helpful to have check-in points with family once a week or fortnight in which you pick a time and place to talk about how you are feeling.
Loss of control
When it comes to surgery people often worry about feeling out of control of their body and the situation. Coming into hospital can often mean relinquishing a lot of control as you are out of your day to day routine and home environment and are often waiting for other people to make decisions, and waiting for tests to take place and results to come back.
We know it can help to:
- Find ways to feel more in control before and whilst in hospital as this may allow you to feel a little more settled.
- Some things that people have found helpful include packing their bag for hospital, making plans for who will look after the house/pets/family while they are in hospital, speaking to work or school about the surgery, preparing the house so that when you come home from hospital it is set up for your recovery, planning for support when you are discharged and are in the recovery process, and thinking about and bringing some activities to keep you occupied while in hospital.
People are often very happy and grateful when surgery is complete and has been a success. However, they may have some questions about what the recovery process will be like. There may be questions about whether they will be in pain, how much time they will need to take off from work or education and generally what they can expect from the recovery process.
We know it can help to:
- Speak to the medical team and ask any questions about the recovery time, process and what can be expected
- Keep a list of questions so that you don’t forget to ask them
- Remind yourself that recovery time can vary person to person and at times you may feel frustrated with how long it is taking
- Compare how you feel to the week before, rather than how you felt prior to surgery, and see if progress has been made during this time. Even if it is a small amount it can allow you to feel as if things are moving in the right direction
- Be kind to yourself during the recovery process; your body and mind have gone through a significant event and need time to process what has occurred
- Pace yourself. Try not to push yourself to do too much too soon. Listen to what your body is telling you and if your body needs to rest then let it rest
It is common for people to worry about having a scar after surgery and how this will make them feel about their body, whether it will affect how they dress or affect their confidence. For some people they may feel more comfortable covering up their scars by wearing certain clothing or using camouflage makeup. Over time people might feel differently about their scar and may come to view it as a badge of honour, or a war wound that they are proud of because it is a physical representation of what they have been through.
We can know it can help to:
- Talk to family and friends about your concerns
- Find information about camouflage makeup at https://www.changingfaces.org.uk/skin-camouflage
- Read about other patients experiences with cardiac scars at https://www.bhf.org.uk/heart-matters-magazine/my-story/heart-surgery-scars/shell-williams
Where can I get support?
You and/or your child may have a number of support needs and we know it can be hard to know what you need and where to find this. To help we have put together a number of resources which you can find out our website. If the support you need is not within our specialist expertise the role of the resources might be to point you in the direction of national and local resources that might better suit your needs or questions that you have.
We also know that different types of support will work for different people. You may prefer to read information and try out strategies at home, see someone locally or access specialist cardiac support via the telephone or in person in Bristol. By using the resources on our website you can find out what you need and where you can go to find it.