If your child has been admitted to hospital, whether for a planned procedure or due to an unexpected emergency, the experience for you as a parent carer can be extremely challenging, and all the more difficult if your child has additional needs. As a parent carer, you're faced with looking after your child within a busy hospital setting, and if your child has additional needs, the lack of familiar routines and the demands of being in an environment full of new and unexpected sensory information can be a lot to deal with. Not only this, but you will also be managing your own emotions and concerns, and perhaps those of other children and family members too.
Here we share some practical advice to support you if you are navigating the demanding experience of caring for your child whilst they are in hospital, and after they have been discharged.
When a hospital stay is planned, you have the advantage of being able to prepare yourself and your child in advance so the experience feels as smooth and relaxed as possible.
In the time leading up to admission, talking to your child about why they need to go to hospital and making time to answer any questions they might have can help to reassure them. There are some great books, videos and social stories for children of all ages that you could use to introduce your child to the idea of staying in hospital. Many hospitals offer pre-admission tours for children and you could visit together, perhaps taking some photos and videos (with permission) to look at again later, and meet some of the doctors and nurses who will be involved in your child’s care and treatment. Your child will have to wear an identity band on their wrist for security reasons during their stay in hospital, and now could be a good time to practise wearing one, especially if your child has additional needs and may take more time to get used to it.
Making sure the hospital is well aware in advance about your child’s particular needs means everyone can be prepared to support them in the ways that work best for them. A Personal Passport is a short document for children with additional needs that outlines key information about their condition, their preferred communication style, and their personal likes and dislikes, and can be a very valuable resource to share in advance.
You could ask your child to choose their favourite toys, books, PJs and blankets and pack these in a special bag that you make ready in advance. Anything that provides comfort and a sense of familiarity is perfect, including photos of friends, family and pets, or drawings done by their siblings. If you plan to stay with your child, many hospitals have rooms for parents or nearby facilities to make it easier for you. If you have other parental or caring responsibilities and are unable to stay overnight, you might tell your child that you will be there to eat breakfast with them at a certain time every day, or will always be there to watch a particular programme they enjoy after dinner like you do at home, to create a sense of comfort and routine.
If you do have other children or dependants, arranging for close family or a trusted friend to look after them in advance will give you peace of mind. It might also be helpful to create a list of practical tasks that family or friends can help with, like walking the dog, making dinner, or doing chores around the house, whilst your child is in hospital and you are naturally focused on them.
If your child is admitted to hospital unexpectedly, you will not have the luxury of preparation time but there are still steps you can take to manage the situation so things feel as relaxed as possible for you and your child.
In any emergency, your child will be looking to you for cues and so whilst it may be difficult on a busy A and E ward, staying as calm and composed as you can will help them. Making sure you stay hydrated, take some deep breaths every now and again, and have short breaks outside when your child’s condition is more stable are all simple, practical ways to support yourself to feel calmer and keep a clear head even in the midst of very stressful circumstances.
If you can, bringing a copy of your child's medical records, medication lists, and any other relevant documents with you to the hospital can be very helpful. A Personal Passport can also be useful. If you are unable to gather these in time, sharing this important information with the medical team as soon as possible will be hugely valuable. Our article on Planning for emergencies as a carer may be a useful resource for you here. If you can, remembering to grab a water bottle, a blanket for yourself or anything else that will bring you a sense of security and comfort can also be a good idea, especially if you don’t know how long you will be staying in the hospital with your child.
As your child’s parent and carer, you know your child best and it is very important for you to be involved in discussions around their treatment and care, so introducing yourself to their medical team as soon as you arrive is a great idea. Establishing a good relationship with the professionals involved means they benefit from your knowledge and expertise, and you stay informed, feeling more confident that your child is receiving the best possible care. Our article on Identifying yourself as a carer when supporting someone in hospital goes into more depth on this important area here.
Reaching out to trusted family and friends to support you in practical ways, like taking care of your other children or bringing in items you might need to the ward or simply to provide a listening ear and some emotional support, can make a real difference to how you feel. It can feel very difficult to hand over your child into someone else’s care, and in the emotionally charged situation of an unexpected hospital admission there may be times that as a parent you feel helpless and lost. In those moments, you might remind yourself that your presence alone is hugely valuable to your child, and that there are many highly skilled people playing their part in doing their very best for your child. This can go a little way towards helping you feel more able to cope and to trust what is happening.
Caring for your child during a hospital stay on a ward
Whether planned or unexpected, caring for a child in hospital can be emotionally draining and stressful. However, there are ways to navigate the hospital environment that can help you feel more positive and in control and we go into these below…
Being present as much as possible on the ward and building positive relationships with the hospital staff means they benefit from your detailed knowledge of your child, and you stay informed.
Your child will have a named consultant who will manage their medical needs during their stay, and the nurse responsible for their care should come and introduce themselves to you and your child at the beginning of each shift.
However, it’s very easy to lose track of time in hospital and to feel overwhelmed by the amount of new people you meet and the sheer amount of new information you have to process. Taking a journal with you or making notes on your phone can help you keep track of things like the names and roles of the professionals you meet, medication schedules and test results, and the key points discussed in ward rounds or other meetings.
Your journal is also a great place to jot down any questions you’d like to ask the next time you speak with medical staff about treatment plans or during any decision-making processes.
A typical day on an NHS ward will follow a similar pattern for mealtimes, administering medication and staff handover times, and getting up to speed with the timetable on your ward will help you and your child to know what to expect and establish your own routines.
Ensuring that your child is eating healthily, sticking to regular naps and bedtimes, enjoying visits from family and friends, and incorporating familiar activities like reading their favourite stories or playing games into their day, will all help to boost your child’s wellbeing and confidence during their hospital stay.
If your child has additional needs, maintaining their familiar communication systems will of course be vital to their sense of security, and all staff should be aware of the ways your child prefers to communicate. Sharing your child’s needs and preferences in the form of a personal passport or simple one-page document that outlines their unique likes and dislikes can also help staff to connect with your child in ways that mean they feel seen, heard and more at home.
Children’s wards often have extra resources available like sensory rooms with beanbags, music and weighted blankets, and places to stretch and roll around. There may also be a garden for time outside, as well as a library with books, DVDs, puzzles, board games, stress toys, and arts and crafts materials your child can borrow.
There will also be a child play specialist on hand to work closely with your family to provide activities tailored to the interests of your child. They can help you to maintain some normality and light-heartedness in the midst of a potentially stressful time in hospital.
There will also be resources available to support you as the parent. Your hospital may have a carer liaison officer whose role is to specifically support you during your child’s stay on the ward. You may also be able to access 1:1 emotional support with a dedicated member of staff, speak to a social worker, or request support from patient advocacy services if you have any concerns about the level of care or treatment your child is receiving.
Caring for a child in hospital can be emotionally draining and it's important you look after your own wellbeing during this time too so you can remain strong and supportive.
You may be experiencing all sorts of difficult feelings, and acknowledging these as being normal and expected given the circumstances is key to staying balanced and healthy yourself.
Many hospitals will have a counsellor and a chaplain available to support you, and the carer liaison officer can help connect you with support groups for other parent carers who will be able to understand what you are going through.
Encouraging your child to ask questions and express their feelings about their treatment and experiences on the ward will help them feel more empowered and reduce feelings of anxiety.
In the same way, it’s important that you feel able to speak up if you feel something isn't right or if you have any concerns about your child's care. Our self-advocacy toolkit is designed to support you in feeling more confident to offer your opinions, ask questions and communicate clearly if you are caring for your child in hospital.
When your child is discharged from hospital
Knowing when your child will be discharged from hospital is often a relief, but it can also bring new challenges and concerns as you prepare to transition back to life at home.
Before leaving the hospital you will have been given a copy of your child’s discharge plan which can include lots of information. It will cover medications, ongoing treatment and appointments, support you can expect to receive after discharge, and details of any key health and social care contacts. Understanding your child’s discharge plan is very important, and so asking any questions you have before you leave the hospital can help you feel more prepared and confident.
Our article on understanding hospital discharge takes you through the whole process in greater detail here.
Depending on your child’s particular situation, you may have had to make certain adjustments to your home, like setting up a space for their recovery, organising medical supplies, or arranging for additional help. If your child needs specialised equipment, it’s a good idea to speak with the hospital discharge team to ensure it is delivered and set up before you leave the hospital.
If you have other children, you may need to prepare them for their sibling coming home, especially if their condition has changed following their hospital stay. There may be new equipment or adaptations made to your home to get used to, or there may be changes to routines that could feel unsettling.Talking about any changes in advance and answering any questions at this stage can help everyone to understand the situation, feel more secure and adjust more easily.
Our article on maintaining a balance in family dynamics offers extra support.
During the discharge process, your medical team will go over what to expect when your child comes home, and which symptoms to look out for as you are monitoring their recovery. Keeping emergency contact numbers handy and knowing which people to contact if you have any questions at all will give you peace of mind that someone is always there to support you.
Although the stress of the hospital stay might be over, being at home with new or additional caregiving responsibilities can bring its own challenges. Seeking practical and emotional support from friends and family, and your GP if you ever feel overwhelmed, and joining parent carer support groups in your area can be more important than ever after your child is discharged.
Maintaining your own wellbeing on every level as you continue to care for your child after their stay in hospital should be a priority, read our resources on how to manage difficult emotions, and the importance of self-care for carers to find out more.
Online Help and Advice
Visit our online support section where we have provided advice and guidance on a range of relevant topics to help you in your caring role.