Being diagnosed with brain or head and neck cancer is distressing as it is often life threatening, and has a large impact on people physically and/or mentally. Hence, it is essential that education and support programs are developed and tested to reduce distress and unmet needs for people diagnosed with these cancers and their carers. Two programs have been developed:
1. Radiotherapy Prepare program
This program focuses on preparing people for radiotherapy. Little research has been conducted in this area. This team's work in preparing people diagnosed with breast cancer for radiotherapy is recognised internationally; however, this program needs to be refined for people with other cancers. Receiving radiotherapy for brain cancer or head and neck cancer may cause distress due to the head mask they must wear to stop them moving and side effects they might experience. People receiving radiotherapy for head and neck cancer are at risk of severe skin reactions, dry mouth, oral discomfort, mouth ulcers, infections, difficulty chewing and swallowing, impaired taste and extreme weight loss. People receiving radiotherapy for brain cancer may fear side effects such as headaches, hair loss, nausea, extreme tiredness, hearing loss, skin changes, speech difficulties and seizures. Education and support provided by the radiotherapy team before treatment is likely to reduce their anxiety and help them manage side effects. Research methods for this program will include interviews, development and testing of the education packages and a large scale clinical trial. Main outcomes will include anxiety and distress, concerns and knowledge about radiotherapy and how prepared they feel for treatment.
2. Carer's Education and Support Program
This program focuses on improving a carer's confidence to look after their loved one after a cancer diagnosis and reducing their level of distress. This research focuses on carers of patients diagnosed with brain cancer or head and neck cancer because these groups would benefit most from extra support. If carers are unable to support their loved one, it is likely that the person with cancer may need additional emergency room visits or hospital admissions. During the program a nurse conducts a telephone assessment, visits the carer at home, provides an individualised resource manual and regular telephone follow-up for 12 months. This program is currently being tested in a randomised controlled trial with carers of people with brain cancer. It needs to be adapted and tested for carers of people with head and neck cancer. Research into these two programs is essential to improve the education and support provided to individuals and their carers following a diagnosis with either brain cancer or head and neck cancer. The team will also determine the cost of providing these programs and the impact they have on overall healthcare costs.