title: Contending with advanced illness: patient and caregiver perspectives.
abstract: BACKGROUND
  Despite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used.
  
  
  OBJECTIVE
  To investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care.
  
  
  METHODS
  This was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study.
  
  
  RESULTS
  Participants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness.
  
  
  CONCLUSIONS
  Findings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions.
authors.affiliation: University at Buffalo, The State University of New York, Buffalo, New York, USA. Electronic address: meeker@buffalo.edu.
authors.forename: Mary Ann
authors.initials: MA
authors.lastname: Meeker
authors.affiliation: University at Buffalo, The State University of New York, Buffalo, New York, USA.
authors.forename: Deborah P
authors.initials: DP
authors.lastname: Waldrop
authors.affiliation: University at Buffalo, The State University of New York, Buffalo, New York, USA.
authors.forename: Jaclyn
authors.initials: J
authors.lastname: Schneider
authors.affiliation: University at Buffalo, The State University of New York, Buffalo, New York, USA; VA Western New York Healthcare System, Buffalo, New York, USA.
authors.forename: Amy A
authors.initials: AA
authors.lastname: Case
mesh_terms: D000328:Adult; D000368:Aged; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D010865:Pilot Projects; D036301:Qualitative Research; D013727:Terminal Care / Q000523:psychology*; D019452:Terminally Ill / Q000523:psychology*; D055815:Young Adult
keywords: Advanced life-limiting illness; grounded theory; palliative care; transition