American journal of respiratory and critical care medicine
Authors: Mak ACY, White MJ, Eckalbar WL, Szpiech ZA, Oh SS, Pino-Yanes M, Hu D, Goddard P, Huntsman S, Galanter J, Wu AC, Himes BE, Germer S, Vogel JM, Bunting KL, Eng C, Salazar S, Keys KL, Liberto J, Nuckton TJ, Nguyen TA, Torgerson DG, Kwok PY, Levin AM, Celedón JC, Forno E, Hakonarson H, Sleiman PM, Dahlin A, Tantisira KG, Weiss ST, Serebrisky D, Brigino-Buenaventura E, Farber HJ, Meade K, Lenoir MA, Avila PC, Sen S, Thyne SM, Rodriguez-Cintron W, Winkler CA, Moreno-Estrada A, Sandoval K, Rodriguez-Santana JR, Kumar R, Williams LK, Ahituv N, Ziv E, Seibold MA, Darnell RB, Zaitlen N, Hernandez RD, Burchard EG, NHLBI Trans-Omics for Precision Medicine (TOPMed) Consortium
Thorax
Authors: Neophytou AM, Oh SS, White MJ, Mak ACY, Hu D, Huntsman S, Eng C, Serebrisky D, Borrell LN, Farber HJ, Meade K, Davis A, Avila PC, Thyne SM, Rodríguez-Cintrón W, Rodríguez-Santana JR, Kumar R, Brigino-Buenaventura E, Sen S, Lenoir MA, Williams LK, Benowitz NL, Balmes JR, Eisen EA, Burchard EG
Journal of the American Society of Nephrology : JASN
Authors: Ishida JH, McCulloch CE, Steinman MA, Grimes BA, Johansen KL
GigaScience
Authors: Sun X, Gao J, Jin P, Eng C, Burchard EG, Beaty TH, Ruczinski I, Mathias RA, Barnes K, Wang F, Qin ZS, CAAPA consortium
Pharmacogenomics
Authors: Turner S, Francis B, Wani N, Vijverberg S, Pino-Yanes M, Mukhopadhyay S, Tavendale R, Palmer C, Burchard EG, Merid SK, Melén E, Maitland-van der Zee AH, The Pharmacogenomics In Childhood Asthma Consortium OBO
American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons
Authors: Singer JP, Diamond JM, Anderson MR, Katz PP, Covinsky K, Oyster M, Blue T, Soong A, Kalman L, Shrestha P, Arcasoy SM, Greenland JR, Shah L, Kukreja J, Blumenthal NP, Easthausen I, Golden JA, McBurnie A, Cantu E, Sonett J, Hays S, Robbins H, Raza K, Bacchetta M, Shah RJ, D'Ovidio F, Venado A, Christie JD, Lederer DJ
Social science & medicine (1982)
Authors: Rice WS, Logie CH, Napoles TM, Walcott M, Batchelder AW, Kempf MC, Wingood GM, Konkle-Parker DJ, Turan B, Wilson TE, Johnson MO, Weiser SD, Turan JM
MedEdPORTAL : the journal of teaching and learning resources
Authors: Rivera J, de Lisser R, Dhruva A, Fitzsimmons A, Hyde S, Reddy S, Tsourounis C, Adler SR
Critical care medicine | Volume 46 of Issue 5
Authors: Li L, Nelson JE, Hanson LC, Cox CE, Carson SS, Chai EJ, Keller KL, Tulsky JA, Danis M
OBJECTIVES
Family members commonly make medical decision for patients with chronic critical illness. This study examines how family members approach this decision-making role in real time.
DESIGN
Qualitative analysis of interviews with family members in the intervention arm of a randomized controlled communication trial.
SETTINGS
Medical ICUs at four U.S. hospitals.
PARTICIPANTS
Family members of patients with chronic critical illness (adults mechanically ventilated for ≥ 7 d and expected to remain ventilated and survive for ≥ 72 hr) who participated in the active arm of a communication intervention study.
INTERVENTIONS
Family members participated in at least two content-guided, informational, and emotional support meetings led by a palliative care physician and nurse practitioner.
MEASUREMENTS AND MAIN RESULTS
Grounded theory was used for qualitative analysis of 66 audio recordings of meetings with 51 family members. Family members perceived their role in four main ways: voice of the patient, advocate for the patient, advocate for others, and advocate for oneself. Their decision-making was characterized by balancing goals, sharing their role, keeping perspective, remembering previous experiences, finding sources of strength, and coping with various burdens.
CONCLUSIONS
Family members take a multifaceted approach as they participate in decision-making. Understanding how surrogates perceive and act in their roles may facilitate shared decision-making among clinicians and families during critical care.
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Journal of general internal medicine
Authors: Shi Y, Fung KZ, John Boscardin W, Ngo S, Freedland SJ, Wong ML, Walter LC
