“Maybe They Don't Even Know That I Exist”: Challenges Faced by Family Members and Friends of Patients with Advanced Kidney Disease

Clinical journal of the American Society of Nephrology: CJASN

Ann M. O’Hare³  Jackie Szarka⁴ 

[1] and..§§Anthropology, University of Washington, Seattle, Washington;**Veterans Affairs Westhaven and Yale University, New Haven, Connecticut;*Center of Innovation for Veteran-Centered and Value-Driven Care,..;*Center of Innovation for Veteran-Centered and Value-Driven Care,..*Center of Innovation for Veteran-Centered and Value-Driven Care,..Departments of ‡Medicine and..§Geriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington;*Center of Innovation for Veteran-Centered and Value-Driven Care,..††Center for Innovation to Implementation, Veterans Affairs Palo Alto Health Care System, Palo Alto, California;¶Department of Medicine, San Francisco Veterans Affairs Medical Center, San Francisco, California

关键词: advanced kidney disease;    qualitative;    family;    Advance Care Planning;    Chronic Disease;    Friends;    Goals;    Grounded Theory;    Humans;    kidney;    Kidney Diseases;    Patient Care;   

DOI  :  10.2215/CJN.12721216

学科分类：泌尿医学

来源: American Society of Nephrology

【 摘 要 】

Background and objectives 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.Design, setting, participants, & measurements 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.

【 授权许可】

CC BY