Best practice in stoma care for neonates, children and young people

Global Paediatric Stoma Nurses Advisory Board has issued guidelines for stoma care

Global Paediatric Stoma Nurses Advisory Board has issued guidelines for stoma care to inform clinicians and help them achieve consistent best practice

Baby with stoma
Reproduced with permission of University Hospitals Bristol NHS Trust. Picture with consent.

According to figures from NHS Digital (2018), 6,643 colostomy and ileostomy procedures were carried out in England in 2017-18 and 562 of these procedures were performed on patients aged 0-18 years.

Many people are unaware that neonates and children can have stomas, and even fewer recognise the special challenges involved in their stoma care.

Despite the life-changing effect of a colostomy or an ileostomy, particularly in early life, paediatric stoma care is overlooked in clinical research and guidance. As a result, many stoma care nurses who work with adults do not feel comfortable or confident caring for children and babies, and may require additional training and support.

In response to this issue, I collaborated in 2018 with six colleagues of the Global Paediatric Stoma Nurses Advisory Board to establish a set of global best practice guidelines for paediatric stoma care.

These international guidelines are a resource for healthcare professionals to ensure consistent best practice in caring for neonates, children and teenagers with stomas. They cover all aspects of stoma care, from indications for a stoma, and the characteristics of neonatal skin and stoma care, to child and family education, and the emotional impact of stomas on children.

Psychosocial aspects of care

Caring for children with stomas goes beyond clinical care as patients and families may require emotional support throughout their treatment pathways.

The guidelines cover many aspects of psychosocial care, and provide insights into how to build therapeutic relationships with younger patients and how to support teenagers with changing body image.

They also make recommendations on how to offer holistic care based on a range of factors, including age and family beliefs.

Supporting the mental well-being of patients is a priority for all clinicians. However, a recent study by the Children’s Commissioner for England found that children’s access to mental health services varies, despite a 17% annual increase in spending in this area.

It is crucial, therefore, that stoma nurses have access to resources, such as best practice guidelines, so that they can make informed decisions, and provide effective support to children with issues such as anxiety and body confidence, and their carers.

Stoma nurses are also essential in the educational process because they are the first point of call for children and their families who want to learn how to live with a stoma.

The guidelines also include advice on how families can adapt to their new circumstances, adjust to a daily routine and prevent exclusion, as well as undertake everyday activities, such as going to school, playing a sport and going on sleepovers.

Clinical aspects of care

Treating children with stomas requires a different approach from the treatment of adults. The guidelines therefore aim to be a handbook to inform clinicians and help them achieve consistent best practice.

They outlined the practical basics of paediatric stoma care, and the fundamental medical differences between caring for adults and children.

The guidelines include guidance on different types of stomas and information on potential complications. Because neonates have thin and oily skin, which can affect stoma product choice and application, the guidelines also highlight skin care.

Knowledge of variations in medical practice is indispensable because, without it, the risk of harm is significant, especially in the selection of stoma-supporting products whose chemical components could be absorbed through neonatal skin.

Introducing best practice

Paediatric care has come under extreme pressure for some time, with neonatal units having to close temporarily due to staffing shortages and increasing demand.

At the same time, there has been little progress on filling paediatric training posts in medicine and the number of preterm births continues to rise.

The NHS Long Term Plan recognises the importance of the care of children, and makes commitments to increase the number of neonatal nurses and introduce care coordinators in all clinical neonatal networks in England. It also recognises the need for faster funding growth for children’s mental health.

These commitments are welcome, but as nurses in front-line practice know all too well, the acute nature of the challenges mean that a far more radical increase in investment in the workforce is needed.

For us to provide high-quality children’s care, and enable children and babies to have the best start in their new lives, a sense of urgency is needed. We need to commission more specialist stoma care nurses who have been trained in neonatal support to work in multidisciplinary teams. Only then can we begin to improve services.

New ways of working

The Topol Review proposes new ways of working and training in the NHS to complement clinicians’ skills and enhance their competencies. These new ideas need to be embraced and spread widely as it will take time for them to be embedded in the system.     

Applying the recommendations from our new guidelines may sometimes be difficult, but stoma nurses can improve care simply by adjusting their decision-making process and adopting the best available advice.

I therefore encourage healthcare professionals to make full use of these new guidelines and help the NHS to take the long-awaited step forward on paediatric stoma care.

Conflict of interest statement

  • The development of the Global Best Practice Guidelines for Neonates, Children and Teenagers was sponsored by Coloplast, but all content was developed exclusively by the Global Paediatric Stoma Nurses Advisory Board with no involvement from Coloplast


About the author

Claire Bohr

Claire Bohr is a paediatric stoma and bowel nurse specialist at Bristol Royal Hospital for Children, Bristol


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