The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices
- Anna Collins1,
- Carrie Lethborg2,
- Caroline Brand3,4,
- Michelle Gold5,
- Gaye Moore6,
- Vijaya Sundararajan7,8,
- Michael Murphy9 and
- Jennifer Philip1
- 1Centre for Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia
- 2Department of Social Work, St Vincent's Hospital, Melbourne, Victoria, Australia
- 3Centre for Research Excellence in Patient Safety, Monash University, Melbourne, Victoria, Australia
- 4Melbourne EpiCentre, University of Melbourne and Melbourne Health, Melbourne, Victoria, Australia
- 5Palliative Care Service, Alfred Health, Melbourne, Victoria, Australia
- 6Department of Psychiatry, St Vincent's Hospital, Melbourne, Victoria, Australia
- 7Department of Medicine, Monash University, Melbourne, Victoria, Australia
- 8Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia
- 9Department of Neurosurgery, St Vincent's Hospital, Melbourne, Australia
- Correspondence to Anna Collins, Centre for Palliative Care, St Vincent's Hospital Melbourne, 6 Gertrude St, Fitzroy, VIC 3065, Australia;
Objectives Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected.
Methods This prospective qualitative study undertook in-depth interviews with 23 current and bereaved carers of adults with PMG. Carers were recruited from outpatient and inpatient services of two Australian metropolitan hospitals, including neurosurgery, oncology and palliative care. Thematic analysis was conducted by three independent researchers, using methods informed by grounded theory.
Results Carers described significant needs in relation to three distinct domains: the challenge of caring; the lack of support available to carers and the suffering of caring. The need for care coordination was highlighted as it may enable a series of recommendations for improved care, including: navigation between health providers, individualised, staged information; routine, proactive telephone needs-assessment and emotional support; and early routine integration of palliative care services.
Conclusions The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.
- Received 22 November 2012.
- Revision received 3 May 2013.
- Accepted 7 May 2013.
- Published Online First 31 May 2013
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions