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Nursing children, teenagers and young adults with cancer

The first in our series on how cancer affects different patient demographics focuses on children, teenagers and young adults 

The first in our series on how cancer affects different patient demographics focuses on children, teenagers and young adults 

Around seven young people aged between 13 and 24 are diagnosed with cancer every day in the UK, according to the Teenage Cancer Trust charity.

The latest National Cancer Patient Experience survey, commissioned by NHS England, showed that although young people scored more highly on access to specialist nurses, only 60% of those aged 16-24 understood the explanation of what was wrong with them, compared with 77% of those aged 75-84.

Spotting the signs of cancer

In July, the All party parliamentary group on children, teenagers and young adults with cancer published findings from its inquiry into patient experience and recommended compulsory lessons in secondary school on spotting the signs of cancer. It also called on the UK health departments to meet with a group of children and young people with cancer at least once a year.

‘Some nurses may also be the same age as the patients and struggle to form professional relationships’ 

73%

of young people do not think enough is being done to improve experiences of early diagnosis

(Source: All party parliamentary group on children, teenagers and young adults with cancer inquiry into patient experience – July 2018)

In 2014, the Teenage Cancer Trust produced Competencies: caring for teenagers and young adults with cancer: a competence and career framework for nursing, and Coventry University, with funding from the charity, runs an online module about teenagers and young adult cancer as well as a face-to-face course. 

Teenage Cancer Trust nurse consultant Sue Morgan says young people who have cancer face a number of challenges.

Making decisions quickly

‘Their world is turned upside down and they lose their sense of normality. They have to make a lot of decisions in a short space of time at diagnosis, which can be overwhelming.

‘Many young people go on to achieve great things in life that they often attribute to the skills they have learned throughout their cancer experience’

‘They face an uncertain future and question their mortality and sometimes friends they have made on the Teenage Cancer Trust units may die from their illness. This can be devastating for them.’

However, she adds: ‘Many young people go on to achieve great things in life that they often attribute to the skills they have learned throughout their cancer experience. They often say that it has made them see life differently and they are inspired to do well.’

She says it can be a joy to care for young people, but it can be equally distressing.

The main cancers affecting children and young people:

  • Lymphomas
  • Carcinomas
  • Germ cell tumours
  • Brain and intracranial tumours
  • Malignant melanoma
  • Leukaemias
  • Bone tumours
  • Soft tissue sarcomas

(Source: Cancer Research UK)

‘The treatment regimens are intense and complicated to deliver, and can also cause severe side effects, so young people can be sick and require intensive nursing alongside the psychological support. 

Emotional challenges

‘Working with families can be difficult as well as there are a lot of emotional challenges that come with this. Parents may want to be constantly by the side of their child, which, for the experienced nurse is often a blessing, but may be seen by a more junior nurse as a challenge. 

‘Some nurses may also be the same age as the patients and struggle to form professional relationships. The young people may see them as their peer and “friend”, which can create problems and challenges for the less experienced nurse.’

She adds that the transition from teenage and young adult services to adult services can be difficult so they need to have a planned transition, rather than a sudden transfer.

‘Young people with cancer have to suddenly make decisions about their future they may not have had to even think about before, such as sperm-banking, ovarian preservation and egg harvesting’

‘They need to have an introduction to the adult service so that they feel at ease before transitioning across, and they need a key worker and team to oversee their care. They also need documentation that follows them through and is available to all teams, so that they don’t have to keep telling their medical history. 

‘Point of contact’

‘It is also important that they have one point of contact throughout.’

73%

of parents and young people believe more needs to be done to ensure access to post-treatment support 

(Source: All party parliamentary group on children, teenagers and young adults with cancer inquiry into patient experience – July 2018)

Malignant melanoma is the fifth most common cancer among young people aged 15-24 years, accounting for 11% of the total cancers in this age group, according to Cancer Research UK.

Lecturer in child health and cancer nursing at Edinburgh Napier University Wendy McInally has written extensively about this particular cancer and says that despite improvements in survival rates, the cancer prognosis is known to be poor if diagnosis is delayed.

She is developing initiatives to help equip healthcare professionals with the knowledge, skills and expertise to care for children and young people with cancer.

‘It is also important nurses get to the bottom of any concerns they may be having that can affect treatment’

‘Research suggests that young people with cancer need autonomy and peer support, yet they also require protection and need their family to support them through this journey,’ says Ms McInally. ‘Further research is required to understand this area better, particularly in relation to what makes an efficient and effective transition to adult services if needed.’ 

Concerns affecting treatment

Helen Pearson, advanced nurse practitioner, solid tumours at the children and young people's unit at the Royal Marsden NHS Foundation Trust in London, says: ‘Young people with cancer have to suddenly make decisions about their future they may not have had to even think about before, such as sperm-banking, ovarian preservation and egg harvesting.

‘It is also important nurses get to the bottom of any concerns young people may be having that can affect treatment.

‘As a nurse it is hard. You could be supporting the same patient for six to eight months or it could be two or three years. You really get to know the patients’

‘We had one teenager who was opposed to treatment. We noticed he had quite a long journey from home for his treatment and seemed to be waiting a long time once he arrived before treatment, which added to his anxiety.

Psychological support

‘We made sure his treatment times were changed so he arrived at a time when it wasn’t busy so he could be seen quickly.’

Ms Pearson is often involved in treating teenagers with solid tumours where the prognosis may not be good, and advocates nurses accessing any psychological support offered by their employers.

‘We know we are in a safe place and can air our views’

‘As a nurse it is hard. You could be supporting the same patient for six to eight months or it could be two or three years. You really get to know the patients.’

Ms Pearson says nurses at the trust have access to psychological pastoral support in the form of monthly group advanced nurse practitioner meetings or one to one support.

‘We may discuss how we feel about a time when we were short-staffed, a disagreement with a colleague or when something has worked well. We know we are in a safe place and can air our views.

‘With teenagers it is a fine balance for nurses to be realistic and also offer hope.’

‘Take things one stage at a time’

In 2014, when Kira Noble was 11, a mass was found in her abdomen and she was diagnosed with neuroblastoma – a cancer that affects around 100 children each year in the UK. Kira underwent a course of chemotherapy and major abdominal surgery and went into remission in 2015.

But the cancer has returned twice since. An appeal launched on Kira’s behalf raised more than £500,000 and she had specialised treatment in New York to remove a tumour in May.

Her mother Aud praises the collaboration between healthcare professionals at the Royal Hospital for Sick Children in Edinburgh and the Memorial Sloan Kettering Cancer Center in New York for Kira’s treatment.

‘Despite the surgeons’ best efforts in Edinburgh – they operated for nine hours – they couldn’t get the tumour out. I heard of a surgeon in New York who was a specialist in this area. He operated and it was 100% successful,’ says Mrs Noble.

‘Best possible outcome’

‘The oncology team in Edinburgh has backed us and they are working together for the best possible outcome. Nurses have been so important during our cancer journey as they are the health professionals who spend the most time with us.

‘If our nurses are happy, kind and compassionate it gives us such a positive experience and we look to them to be proactive rather than reactive and to anticipate your needs.’

As Kira explains: ‘The main challenges have been when you’re stuck in hospital isolated from normal life. Losing your hair, eyebrows and eyelashes can affect your identity. Friends from school don’t always understand, but I have made friends who have been going through similar experiences.

‘I would always advise other young people to take things one stage at a time. As much as you don’t want to be in hospital, nurses do become your family.

‘Nurses are awesome. They are our heroes in our journey against cancer and do such an amazing job.’



Further information

How cancer affects different patient demographics – the other articles in this Cancer Nursing Practice series

References

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