What the study is about

High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress.


What we are doing

We conducted a randomised controlled trial. Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The Care-IS intervention included four components:

  1. initial telephone assessment of carer unmet needs;
  2. tailored hard-copy resource folder;
  3. home visit; and,
  4. monthly telephone support for up to 12 months.

Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. 


What we found

We randomised 188 carers (n=98 intervention, n=90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months and all follow-up timepoints including 12 months, compared to the control group.  However, there was no difference between groups in carer distress or any secondary outcomes.


What are our next steps

This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating and progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice. 

We are currently preparing publications resulting from this work.

Our research is now being used to inform development of the BRAINS portal for patients and carers.

Additionally the resources developed for Care-IS informed the development of the Online Intervention for Carers of People with High-Grade Glioma which is currently being trialled.


For more information about this study

For more information about the Caring for the Caregiver project, please see here: