title: Family Caregivers of Patients With a High-Grade Glioma: A Qualitative Study of Their Lived Experience and Needs Related to Professional Care.
abstract: BACKGROUND
  The poor prognosis and disabling symptoms of a high-grade glioma (HGG) affect not only the patient but place high demands on family caregivers.
  
  
  OBJECTIVE
  The objective of this study was to explore the experience of family caregivers of patients with HGG and their needs related to professional care.
  
  
  METHODS
  A qualitative research using semistructured interviews was conducted. Sixteen family caregivers of patients with an HGG who were treated or in follow-up at a Belgian hospital were interviewed.
  
  
  RESULTS
  Family caregivers reported experiencing loss of their old life and the patient's old self. They were saddened to see the patient's disabilities and the change in their relationship, which in turn contributed to feelings of loneliness. At the same time, they reported a strong commitment and determination to provide the patient with the best possible care. Many, however, felt unprepared to do so, and they reported feeling insecure. Caregivers expressed the need for information and for consideration and support.
  
  
  CONCLUSIONS
  The diagnosis of an HGG is disruptive to the life of family caregivers. They strongly commit but at the same time struggle to care for the patient.
  
  
  CONCLUSIONS
  Professional caregivers should be aware of the subtle balance between family caregivers' wish to care and the burden of caregiving. Professional caregivers can be of great value to family caregivers by providing guidance and assistance for this new caregiving role while being considerate of their commitment and their grief.
authors.affiliation: Author affiliations: Department of General Medical Oncology, University Hospitals Leuven (Ms Coolbrandt, Ms Sterckx, Dr Clement, Ms Borgenon, Dr Decruyenaere, Ms Mees); Center for Health Services & Nursing Research, Katholieke Universiteit Leuven (Ms Coolbrandt, Dr Dierckx de Casterlé); and Department of Neurosurgery, University Hospitals Leuven (Dr de Vleeschouwer), Belgium.
authors.forename: Annemarie
authors.initials: A
authors.lastname: Coolbrandt
authors.forename: Wendy
authors.initials: W
authors.lastname: Sterckx
authors.forename: Paul
authors.initials: P
authors.lastname: Clement
authors.forename: Sonja
authors.initials: S
authors.lastname: Borgenon
authors.forename: Marleen
authors.initials: M
authors.lastname: Decruyenaere
authors.forename: Steven
authors.initials: S
authors.lastname: de Vleeschouwer
authors.forename: Anne
authors.initials: A
authors.lastname: Mees
authors.forename: Bernadette
authors.initials: B
authors.lastname: Dierckx de Casterlé
mesh_terms: D000328:Adult; D000368:Aged; D001932:Brain Neoplasms / Q000473:pathology / Q000523:psychology / Q000628:therapy*; D017028:Caregivers / Q000523:psychology* / Q000706:statistics & numerical data; D005260:Female; D005910:Glioma / Q000473:pathology / Q000523:psychology / Q000628:therapy*; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D060787:Neoplasm Grading; D036301:Qualitative Research