The challenges and suffering of caring for people with primary malignant glioma: Qualitative perspectives on improving current supportive and palliative care practices

Anna Collins, Carrie Lethborg, Caroline Brand, Michelle Gold, Gaye E Moore, Vijaya Sundararajan, Michael Murphy, Jennifer Philip

Research output: Contribution to journalArticleResearchpeer-review

26 Citations (Scopus)

Abstract

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.

Original languageEnglish
Pages (from-to)68-76
Number of pages9
JournalBMJ Supportive and Palliative Care
Volume4
Issue number1
DOIs
Publication statusPublished - Mar 2014

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