Children in hospital

When your child has a disability or long-term illness, hospital stays might be a familiar part of your life. But hospitals can be stressful places, and managing a stay can be tough for you as parents [1], both practically and emotionally. 

You may worry about leaving your child in the care of hospital staff, particularly if your child has communication difficulties and important decisions are being made [2]. Younger people with learning disabilities can often find it difficult being understood in hospital settings [3].

Dealing with hospital staff


If you’re having difficulty accessing the support and services your child needs, it can have a significant impact on you and your partner [4]. It can sometimes feel like hospital staff don’t know how to offer the care your child needs [5] and you may find yourself going over the same things as you are passed from one practitioner to the next. One way to ensure your child’s needs are properly considered is by using a hospital or communication passport for your child.

A hospital passport is a booklet that you can use to pass on crucial information about a child or young person with additional needs. It contains information about their condition, medications, likes and dislikes, and essential information if an emergency happens. This can ensure that all the professionals who come into contact with you and your child have the same information without you having to keep explaining things. This can be particularly useful for children with a learning difficulty. 

The charity Scope have a template for a communication passport on their website. Look under ‘Free hospital communication resource’ at www.scope.org.uk/support/tips/health/hospital-stays.

Mencap also have a hospital passport for children with a learning disability on their website: www.mencap.org.uk/advice-and-support/health/our-health-guides.

Even the most well equipped hospitals cannot provide the round-the-clock care that many severely disabled children need, so children might be completely dependent on others to stay comfortable and happy in hospital. As their mum or dad, you may need to be by their side for much of the day to pick up the extra care that nursing and clinical staff can’t offer. This can include practical things, but also just talking to them, and keeping them reassured and entertained.

You may need to ask hospital staff to have patience with you. Having a child in hospital can be draining for parents [4] and you may not be at your best when trying to communicate important things to the staff. When you feel that hospital staff aren’t very understanding about your experiences, it can leave you feeling unsupported, and worried about the decisions that are being made while you’re not there [5].

At times like these, you and your partner might need to make a special effort to support each other. It can be helpful to spend five or ten minutes at the end of the day, talking about what you’ve found difficult and what has gone well. This can help give you a better understanding of each other’s experiences, while getting emotional support from the person who is going through this with you. It can also give you a chance to gather your thoughts and reflect on the day.

Support while your child is in hospital


Having a child in hospital can sometimes open the door to services and support you may not have accessed before. Make sure you enquire about specialist support. Some charities work in hospitals providing condition-specific nurses, such as Roald Dahl nurses who can visit and support you, and provide follow up care when you’ve left the hospital setting.

There are also charities who take applications for financial support, like grants to families with a child in hospital. See www.contact.org.uk/general-grants for a list of grant-giving charities, or contact the helpline for a copy on 0808 808 3555 or helpline@contact.org.uk.

The hospital’s Patient Advice and Liaison Service (PALS) can offer parents confidential advice, support and information. They can help you with health-related questions and help resolve concerns or problems when you're using the NHS. You can usually find their office in or near the main entrance of the hospital.

Contact has parent advisers based at six children's hospitals across the UK, providing families with emotional and practical support. Parents can drop by the information stands or ask someone to come to the ward. Contact currently work at:

  • Birmingham Children's Hospital.
  • Royal Manchester Children's Hospital.
  • Alder Hey Children's Hospital.
  • Great North Children's Hospital.
  • The Evelina Children's Hospital.
  • Great Ormond Street Hospital.

The Contact website has details of available days and times.

Leaning on friends and family


If you are stressed, it can have an impact your child’s health and behaviour [1], so it’s important to make sure that you and your partner are well supported. One of the best ways to cope with stress is to lean on your friends and family [1] [6].

Sometimes talking to someone outside of the situation can help you let off steam in a way that talking to your partner can’t. You may also be able to ask for practical help, like lifts to or from the hospital, picking up other children from school, or helping you out with the housework for a while. It can be hard to ask for help, but try to be kind to yourself and remember that lots of people enjoy feeling needed and will be happy to support you when they know what you’re going through.

Staying with your child


If your child is having a long stay in hospital, you can help them by keeping things as normal as possible, like making sure they have access to schoolwork and home comforts [1].

If your other life commitments allow it, you may be able to stay in or near the hospital with your child. Most hospitals allow or even encourage this and some have funded schemes to offer low-cost accommodation nearby [7]. There are also centres like Ronald McDonald House which have been set up specifically to allow your family to stay together while your child is in hospital. 

Staying close to your child can take some of the worry out of the situation [7] and help you feel more confident about the care your child is receiving [2]. It may also put you in touch with other parents who are in similar situations [7].

Looking after your relationship


However you decide to manage things, you and your partner will probably have to make some compromises. Set aside some time to work things through as a couple – make a list of what needs doing and work out where it’s possible to free up time and resources to make things work.

You may be able to divide things up equally, or one of you may have to do the majority of the heavy lifting while the other keeps working. Agree a strategy that works for both of you and make a plan to review it and check if it’s working. Talking things through can help you see how each other is involved, and give you both a greater sense of fairness.

Coming home


Before your child comes home, make sure you contact the hospital social work department to arrange your child’s care needs when they are discharged. The hospital should liaise with your local authority to make sure you and your child have everything in place. If your child’s care needs have changed, be prepared to start a new routine rather than trying to recapture the old one. 

No one can pretend that having a child in hospital is anything but a stressful experience, and it’s normal for feelings of stress and worry to continue even after your child is discharged [8], so give yourselves a chance to adjust afterwards. 

References


[1] Commodari, E. (2010). Children staying in hospital: a research on psychological stress of caregivers. Italian Journal of Pediatrics, 36, 40. http://www.ijponline.net/content/36/1/40 

[2] Gumm R, Thomas E, Lloyd C, et al. (2017) Improving communication between staff and disabled children in hospital wards: testing the feasibility of a training intervention developed through intervention mapping. BMJ Paediatrics Open 2017;1:e000103. doi:10.1136/bmjpo-2017-000103

[3] Care Quality Commission (2017) NHS Patient Survey Programme.Children and young people’s inpatient and day case survey 2016: Statistical release. http://www.cqc.org.uk/sites/default/files/20171128_cyp16_statisticalrelease.pdf

[4] Care Quality Commission (2012) Health care for disabled children and young people. A review of how the health care needs of disabled children and young people are met by the commissioners and providers of health care in England. https://www.cqc.org.uk/sites/default/files/documents/health_care_for_disabled_children.pdf

[5] Hagvall, M., Ehnfors, M. and Anderzn-Carlsson, A. (2016) Experiences of parenting a child with medical complexity in need of acute hospital care. Journal of Child Health Care, 20(1), pp.68-76. DOI: 10.1177/1367493514551308

[6] Kersh, J., Hedvat, T.T., Hauser-Cram, P. and Warfield, M. E. (2006), The contribution of marital quality to the well-being of parents of children with developmental disabilities. Journal of Intellectual Disability Research, 50: 883–893. doi:10.1111/j.1365-2788.2006.00906.x

[7] Franck, L.S., Ferguson, D., Fryda, S., & Rudin, N. (2015). The child and family hospital experience: Is it influenced by family accommodation? Medical Care Research and Review, 72(4), 419-437.

[8] Wray, J., Lee, K., Dearmun, N. and Franck, L. (2011) Parental anxiety and stress during children’s hospitalisation: The StayClose study. Journal of Child Health Care, 15(3), pp.163-174. DOI: 10.1177/1367493511408632

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