title: "A monster that lives in our lives": experiences of caregivers of people with motor neuron disease and identifying avenues for support.
abstract: BACKGROUND
  A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.
  
  
  OBJECTIVE
  This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.
  
  
  METHODS
  A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.
  
  
  METHODS
  Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.
  
  
  RESULTS
  15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.
  
  
  CONCLUSIONS
  Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.
  
  
  BACKGROUND
  ACTRN12615000120572, pre-results.
authors.affiliation: School of Nursing & Midwifery, Deakin University, Geelong, Victoria, Australia.|Centre for Palliative Care, St Vincent's Hospital Melbourne, Melbourne, Victoria, Australia.
authors.forename: Nicole Hennessy
authors.initials: NH
authors.lastname: Anderson
authors.affiliation: Psychology Department, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia.
authors.forename: Cathy
authors.initials: C
authors.lastname: Gluyas
authors.affiliation: Neurology Department, Calvary Health Care Bethlehem, Melbourne, Victoria, Australia.
authors.forename: Susan
authors.initials: S
authors.lastname: Mathers
authors.affiliation: Centre for Palliative Care, St Vincent's Hospital Melbourne, Melbourne, Victoria, Australia.|Department of Palliative Care, Queen's University, Belfast, Ireland.
authors.forename: Peter
authors.initials: P
authors.lastname: Hudson
authors.affiliation: School of Nursing & Midwifery, Deakin University, Geelong, Victoria, Australia.|Cancer Information and Support Service, Cancer Council Victoria, Melbourne, Victoria, Australia.
authors.forename: Anna
authors.initials: A
authors.lastname: Ugalde
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001315:Australia; D017028:Caregivers / Q000523:psychology*; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D016472:Motor Neuron Disease / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support
keywords: amyotrophic lateral sclerosis; burden; carers; motor neuron disease; qualitative