Factors affecting stress experienced by surrogate decision makers for critically ill patients: implications for nursing practice.

Objectives: This study explores surrogate decision-makers' (SDMs) challenges making decisions related to the care of patients in critical care, to (1) characterise the SDM stress, (2) identify personal, social, care-related factors influencing stress and (3) consider implications of findings to improving critical care practice.

Methodology: Semi-structured interviews were conducted with SDMs of critically ill patients receiving care in two tertiary care institutions. Transcripts were analysed using a grounded theory approach.

Critical illness research involving collection of genomic data: the conundrum posed by low levels of genomic literacy among surrogate decision makers for critically ill patients.

Critical illness clinical trials that entail genomic data collection pose unique challenges. In this qualitative study, we found that surrogate decision makers (SDMs) for critically ill individuals, such as those who would be approached for study participation, appeared to have a limited grasp of genomic principles. We argue that low levels of genomic literacy should neither preclude nor be in conflict with the conduct of ethically rigorous clinical trials.

Perspectives of surrogate decision makers for critically ill patients regarding gene variation research.

Purpose: We undertook this investigation to explore the manner in which surrogate decision makers for critically ill patients perceived genetic data collected in the context of clinical investigation.

Methods: Surrogate decision makers for critically ill patients cared for in intensive care units of two urban hospitals participated in focus groups designed to explore perceptions regarding gene variation research.

Results: Surrogate decision makers were generally familiar with genetic concepts and reported that they could provide an informed opinion regarding permitting (or declining) the participation of their loved ones in gene variation research.

Real-time perspectives of surrogate decision-makers regarding critical illness research: findings of focus group participants.

Objective: We undertook the current investigation to explore how the pressures of serving as a surrogate decision-maker (SDM) for an acutely ill family member influence attitudes regarding clinical investigation.

Methods: We conducted a prospective study involving SDMs for critically ill patients cared for in the ICUs of two urban hospitals. Measurements included participation in focus groups designed to explore perceptions of ICU care and clinical research.

Considerations in the construction of an instrument to assess attitudes regarding critical illness gene variation research.

Clinical studies conducted in intensive care units are associated with logistical and ethical challenges. Diseases investigated are precipitous and life-threatening, care is highly technological, and patients are often incapacitated and decision-making is provided by surrogates. These investigations increasingly involve collection of genetic data.