title: "Maybe They Don't Even Know That I Exist": Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease.
abstract: OBJECTIVE
  Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease.
  
  
  METHODS
  As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes.
  
  
  RESULTS
  The following three themes emerged from interviews with patients' family members and friends: (1) their roles in care and planning were fluid over the course of the patient's illness, shaped by the patients' changing needs and their readiness to involve those close to them; (2) their involvement in patients' care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient.
  
  
  CONCLUSIONS
  Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients' care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.
authors.affiliation: Center of Innovation for Veteran-Centered and Value-Driven Care.|Hospital and Specialty Medicine Service, and.|Departments of Medicine and.
authors.forename: Ann M
authors.initials: AM
authors.lastname: O'Hare
authors.affiliation: Center of Innovation for Veteran-Centered and Value-Driven Care.
authors.forename: Jackie
authors.initials: J
authors.lastname: Szarka
authors.affiliation: Center of Innovation for Veteran-Centered and Value-Driven Care.
authors.forename: Lynne V
authors.initials: LV
authors.lastname: McFarland
authors.affiliation: Geriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington.|Departments of Medicine and.
authors.forename: Elizabeth K
authors.initials: EK
authors.lastname: Vig
authors.affiliation: Department of Medicine, San Francisco Veterans Affairs Medical Center, San Francisco, California.
authors.forename: Rebecca L
authors.initials: RL
authors.lastname: Sudore
authors.affiliation: Veterans Affairs Westhaven and Yale University, New Haven, Connecticut.
authors.forename: Susan
authors.initials: S
authors.lastname: Crowley
authors.affiliation: Center of Innovation for Veteran-Centered and Value-Driven Care.|Hospital and Specialty Medicine Service, and.
authors.forename: Lynn F
authors.initials: LF
authors.lastname: Reinke
authors.affiliation: Center for Innovation to Implementation, Veterans Affairs Palo Alto Health Care System, Palo Alto, California; and.|Department of Psychiatry and Behavioral Sciences, Stanford University, Palo Alto, California.
authors.forename: Ranak
authors.initials: R
authors.lastname: Trivedi
authors.affiliation: Anthropology, University of Washington, Seattle, Washington.
authors.forename: Janelle S
authors.initials: JS
authors.lastname: Taylor
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology*; D003220:Conflict, Psychological; D017281:Cost of Illness; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D033062:Friends / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D007674:Kidney Diseases / Q000523:psychology* / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D011368:Professional-Family Relations; D036301:Qualitative Research; D006435:Renal Dialysis; D014861:Washington
keywords: Advance Care Planning; Chronic Disease; Friends; Goals; Grounded Theory; Humans; Kidney Diseases; Patient Care; advanced kidney disease; family; kidney; qualitative