How It Started, By Julie Barnet
There have been many advances in the treatment of childhood cancer, which in turn has led to increased survival rates. However, many of the side effects of cancer treatment are unpleasant and parents need education on when to seek medical help, once they have gone home. Meaning the provision of information to parents of children with cancer prior to the initial discharge from the oncology ward is essential.
I moved to Rainbow ward from general paediatrics and as I began to learn more about the speciality, I noted that everyone did “the going home talk” differently. If parents are not provided with adequate information then the child is more at risk from infections, fever, nutritional problems and unplanned hospital admissions. I noticed that the information provided to parents was sometimes rushed and often inconsistent. I also discovered there were no national standards available.
Parents of children with cancer must commit to numerous demands placed upon them including; attending appointments, administration of medication (including chemotherapy), monitoring side effects, planned and unplanned hospital admission, monitoring of fluid and diet intake, mouth care, central line hygiene and the general health of their child. In short, it is really hard!
During the cancer journey, relationships between health care workers and parents change and evolve over time as parents grasp a better understanding about the disease and treatments. I feel passionately that nurses must deliver parent information that ensures informed decisions can be made. This in turn creates a partnership with the patient, family and the nursing team. I decided to write my dissertation on the information needs of the parents of a child with cancer, prior to first discharge from hospital. This is when my idea of a going home booklet of information developed. I was supported in producing this by the wider team on Rainbow ward and the first one was printed in 2015. I then recruited Claire to help me and it has since been updated in 2018 and 2023, again with the wider support of the Rainbow team. We are always looking at ways to improve and update things. We wanted this version to be available digitally, colourful, include more pictures and be available in English and Welsh. This version is particularly special as one of our lovely patients (Mia) has completed some excellent artwork for us. I feel passionate about this booklet and love how it has turned out!
To access a hard copy please contact Rainbow ward or the LATCH office.
