title: Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.
abstract: BACKGROUND
  Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease.
  
  
  METHODS
  We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months' follow-up; caregivers were also interviewed postbereavement. We interviewed the patients' general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach.
  
  
  RESULTS
  We conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient's individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support).
  
  
  CONCLUSIONS
  There are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients' likely needs so they can provide appropriate support and sensitive and effective communication.
authors.affiliation: Primary Palliative Care Research Group, Centre for Population Health Sciences, General Practice Section, The University of Edinburgh Medical School, Edinburgh, UK.
authors.forename: Debbie
authors.initials: D
authors.lastname: Cavers
authors.forename: Belinda
authors.initials: B
authors.lastname: Hacking
authors.forename: Sara E
authors.initials: SE
authors.lastname: Erridge
authors.forename: Marilyn
authors.initials: M
authors.lastname: Kendall
authors.forename: Paul G
authors.initials: PG
authors.lastname: Morris
authors.forename: Scott A
authors.initials: SA
authors.lastname: Murray
mesh_terms: D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D003430:Cross-Sectional Studies; D005086:Existentialism; D005190:Family / Q000523:psychology*; D005260:Female; D005500:Follow-Up Studies; D005910:Glioma / Q000523:psychology*; D006801:Humans; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D011593:Psychology, Social; D036301:Qualitative Research; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D055815:Young Adult