DAY IN THE LIFE: PAEDIATRIC ONCOLOGY OUTREACH NURSE SPECIALIST AND PAEDIATRIC ONCOLOGY RESEARCH NURSE

The piece below is designed to highlight different nursing roles within childhood cancer care. The aim here is twofold: firstly to show how nurses work in different roles within the interdisciplinary team to improve care of children with cancer across care settings, but also to showcase some potential career opportunities for children’s nurses.

Day in the life of a Paediatric Oncology Outreach Nurse Specialist (POONS)

As Paediatric Macmillan Nurse Specialists we are based in the Royal Belfast Hospital for Sick Children. As one of the UK’s specialist children’s cancer treatment centres we have approximately 52 new diagnoses a year in Northern Ireland. Our service is based on a paediatric outreach model from the regional unit out into the community where the child resides; between us we cover the whole province which is a large geographical area. Our involvement begins with children and families at diagnosis and continues through various stages of the child’s illness, through to and including bereavement care for families whose child sadly dies.

There is no such thing as a normal day as the job is very varied.  While we may have key clinical activities planned for the coming day or week this can change; this will require me to prioritise our workload, be flexible and collaborate with the many teams we are part of.

My normal working hours are Monday to Friday 9–5pm; however, the team provides a 24hr on-call service during the end stages of a child’s illness if the child is at home. This means that we may be on-call for phone advice or even a home visit out of hours, for example if a child’s condition deteriorates. This is one of the most challenging aspects of the job; as the child’s key worker we will co-ordinate the day to day care and support of the child and their family at this time.

Typically on a Monday we attend the grand ward round at 9am – this gives the opportunity to get an update on current patients on the ward, admissions and discharges over the weekend or any problems that have arisen. After the ward round we usually visit the ward and speak with the ward nursing staff, parents and children. Some patients may be having chemotherapy; others are acutely ill or recovering from infections or are newly diagnosed. The diagnosis of childhood cancer is one of the most devastating things that can happen to a child and family and a key aspect of my role is the provision of emotional support to them. We work very much as part of the multidisciplinary team, which comprises medical and nursing staff, as well as social workers, allied health professionals and others.

On the way to my office we usually call in the outpatients department. This affords the opportunity to speak with parents and catch up on the child’s progress and how the wider family are coping with the challenges.

Later in the morning we make any necessary phone calls to liaise with children’s community team members, GPs and other statutory and voluntary agencies. This ensures the transition from hospital to home is as seamless as possible and that the child and family receive on-going support at home.

After lunch we may have home visits to undertake (nursing students often accompany me on home visits) – every visit to a patient’s home is different. One day may involve administering IV chemotherapy to patients on treatment for leukaemia, or teaching parents how to care for their child’s central line.  If a child is returning to school we will visit the school and give advice to the teaching staff.  It is important to be able to spend time with each family in their home as here they are often more relaxed and are keen to discuss their worries and concerns.

 When not in work it is important to make a conscious effort to try and switch off. This is necessary in order to perform as best as possible in my professional role for children and families.

Day in the life of a Paediatric Oncology Research Nurse – Julie Evans, Leeds Children’s Hospital

Research has been the foundation for advancing and improving paediatric oncology treatments over the past few decades. Clinical trials have allowed us to compare existing treatments with new ones and investigate new drugs.

The research team in a paediatric oncology centre is central to co-ordinating care received by patients involved in a clinical trial. Leeds Children’s Hospital has one of the biggest paediatric oncology research teams in the country allowing us to be involved in a variety of local, national and international trials. These include ‘early phase’ studies investigating correct doses for children, to trials comparing cancer treatments and ways of minimising side effects of these.

A day in the life of a research nurse is very varied depending on which patients are in hospital that day.  An ability to prioritise and be organised is needed. One of us attends the outpatient clinic and the inpatient wards each day. There may be patients coming for routine visits or new patients. If we identify new patients we highlight to the rest of the multidisciplinary team which trials they may be eligible for. Once the family have been told the child’s diagnosis, we aim to offer all our families the opportunity to participate in a clinical trial, if they wish to. Our unit is very research focussed and alongside the doctors some of our time is spent ensuring the families and patients are fully informed regarding what participating in a trial will involve. This will include discussing treatment plans and investigations needed.

Once a patient decides they wish to be involved in a clinical trial, strict guidelines govern how we deliver treatment and collect the information needed to provide the data the researchers need. The research nurse is responsible for ensuring these guidelines are followed.

Our clinical involvement with the children and their families varies depending on the intensity of the trial. This is usually determined by what phase it is. A phase 3 trial usually compares standard treatment to a new combination of drugs. This treatment is delivered by the ward/clinic staff but our role involves teaching staff about the trial and collecting information about side effects potentially caused by the drugs given. A phase 1 trial investigating brand new drugs given to children involves more direct care. Often more investigations are needed and more detailed information recorded. The research nurse will need to spend more time teaching the ward staff about the drugs and ensuring they are given correctly. The safety of the patient is paramount and the research nurse must assess the patient each visit to monitor side effects and ensure they are fit to continue treatment.

The research nurse must have a variety of skills. Good communication skills are essential;  from discussing treatment with the family, liaising with the rest of the hospital team and negotiating contracts with sponsors.

Accurate data collection is an important part of clinical trials. Part of our role is verifying and entering data into report forms. This is more increasingly via an electronic form; good information technology skills are essential for research nurses.

New trials are being designed every week and ensuring we are able to offer our patients the chance to participate in a variety of research locally is important. The setting up and opening of paediatric oncology trials takes years from the design to implementation and the research nurse can be involved in all the stages through national and international interest groups.