Understanding the experiences and needs of people who care for long term primary malignant glioma survivors: A mixed methods study
Aim
This study aimed to understand the experiences and needs of people who care for patients who are living longer than expected with an aggressive brain tumour, and identify which factors were linked with caregiver psychological distress.
Outcomes
A total of 69 caregivers completed questionnaires about their experiences of being closely involved with a person living more than two years with a high grade brain tumour. Most caregivers were coping well and many reported positive aspects within the caregiving role, however one in four were experiencing higher levels of distress. Caregiver distress was not easily apparent during brief clinic appointments, but seemed to relate to how emotionally demanding the caring role was and how they perceived the quality of life of the patient.
Twelve caregivers also participated in interviews giving more detailed insights into their experiences and needs. These caregivers reported changes in the patient that were hard for others to recognise or accommodate, such as being unable to multi-task or be flexible. Caregivers found it difficult to live with constant uncertainty and grief, wondering if the patient’s tumour would return or grow, although this did help some to simplify their daily life and savour what was precious to them.
This has been important work with interest and impact on a national and international scale. It is a large study that has made the ‘voice’ of caregivers much more prominent in shaping the way both patients and caregivers are assessed and looked after.
Project Team
- Dr Beth Russell, Centre for Palliative Care, St Vincent’s Hospital Melbourne
- A/Prof Jennifer Philip , Centre for Palliative Care, St Vincent’s Hospital Melbourne
- Anna Collins, Centre for Palliative Care, St Vincent’s Hospital Melbourne
- Dr Anthony Dowling, Medical Oncology, St Vincent’s Hospital Melbourne
- A/Prof Michael Murphy, Neurosurgery, St Vincent’s Hospital Melbourne
- Dr Michael Dally, William Buckland Radiotherapy Centre, The Alfred Hospital, Melbourne
Key Contact
Name: Beth Russell
Email: beth.russell@svha.org.au
Funding Source
Victorian Palliative Medicine Training Program (VPMTP) Fellowship
Key Publications
- Russell B, Collins A, Dowling A, Dally M, Gold M, Murphy M, et al. Predicting distress among people who care for patients living longer with high-grade malignant glioma. Supportive Care in Cancer, 2016 Jan; 24(1):43-51.
- Russell, B., Collins, A., Dally, M., Dowling, A., Gold, M., Murphy, M., Philip, J. Living longer with adult high-grade glioma: setting a research agenda for patients and their caregivers. Journal of Neuro-oncology, 2014 Oct; 120(1):1-10.
- Russell B, Collins A, Dally M, Dowling A, Gold M, Murphy M, Philip J. “Living on a precipice” – the experience of caring for people living longer with high grade glioma. Palliative Medicine. 2016;30(6):NP27