title: The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices.
abstract: OBJECTIVE
  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.
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.
authors.forename: Anna
authors.initials: A
authors.lastname: Collins
authors.forename: Carrie
authors.initials: C
authors.lastname: Lethborg
authors.forename: Caroline
authors.initials: C
authors.lastname: Brand
authors.forename: Michelle
authors.initials: M
authors.lastname: Gold
authors.forename: Gaye
authors.initials: G
authors.lastname: Moore
authors.forename: Vijaya
authors.initials: V
authors.lastname: Sundararajan
authors.forename: Michael
authors.initials: M
authors.lastname: Murphy
authors.forename: Jennifer
authors.initials: J
authors.lastname: Philip
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001315:Australia; D001932:Brain Neoplasms / Q000523:psychology / Q000628:therapy*; D017028:Caregivers / Q000523:psychology*; D005260:Female; D005910:Glioma / Q000523:psychology / Q000628:therapy*; D006801:Humans; D007407:Interviews as Topic / Q000379:methods; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000379:methods* / Q000523:psychology; D011446:Prospective Studies; D036301:Qualitative Research; D012944:Social Support; D013727:Terminal Care / Q000379:methods* / Q000523:psychology; D055815:Young Adult
keywords: Carers; End of life care; Malignant glioma; Service evaluation; Supportive care