High grade gliomas (HGG) are invariably terminal brain tumours, leading to a rapid decline in function with patients requiring a high level of care. Carers of patients with HGG report high levels of distress and feel inadequately prepared for their caring role.
Aims: This randomised controlled trial evaluates a nurse-led education and support program to improve carer preparedness and quality of life; reduce anxiety and depression; and decrease unplanned health service use. The aim of this preliminary analysis is to explore what support nurses are providing to carers who are randomised to the intervention group. Data on the support provided to 10 carers following nursing assessment up to 12 months will be presented.
Methods: The carer education program consists of 1) Telephone assessment of needs; 2) Nurse-led home visit; 3) Tailored resource manual and 4) 12 months ongoing telephone support. Ten carers were randomly selected for analysis. Nursing assessment data for each of these participants over the duration of their enrolment in the study were analysed descriptively to determine presenting issues; contacts made to other health professionals to assist with management and recommendations.
Results: 156 carers have been recruited. The most common presenting issues of the 10 participants that were reviewed focused on carer strain, managing care recipients’ behaviours, mobility and side effects related to chemotherapy. During their involvement in the study the nurse made an average of 5 contacts per carer to other health professionals, including the involved medical oncologist. On average, 17 recommendations were made providing educational and emotional support for carers during telephone assessments and other contacts. The most common nurse recommendations were to the resource manual, community support services, the GP, Cancer Nurse Coordinator and a psychologist. One carer was advised to present to the emergency department with chest pains and a second carer presented to the emergency department for stress related concerns.
Conclusions: Carers were provided with a range of supports which altered as the patients’ disease progressed. We hypothesise that this ongoing support will reduce care distress, increase carer preparation, improve carer outcomes and reduce patient healthcare resource utilisation and costs.