Role strain and ease in decision-making to withdraw or withhold life support for elderly relatives

Abstract

Purpose: To describe the concepts of role strain and role satisfaction (renamed ease in decision-making following analysis) experienced by family caregivers when making decisions to withdraw or withhold life support for elderly relatives in a variety of settings.

Methods: Semi-structured interviews were conducted with 17 family caregivers to obtain descriptions of their experiences when making decisions about life support for elderly relatives. Content analysis was used to analyze the data.

Findings: Role strain was complex, dynamic, and multidimensional, and it evolved over time before, during, and after decision-making about life support. Role satisfaction, the concept name used at the beginning of the study, did not match descriptions or the experience of family caregivers, and a revised name, ease in decision-making, was selected.

Conclusions: The concepts of role strain and ease in decision-making have not previously been used in studies of decisions about life support. Both role strain and ease in decision-making augment the existing literature on role strain in family care by providing a more complete picture of caregivers' responses during their experience of making life-support decisions. Research focused on the measurement of strain and ease in decision-making is needed to understand their interrelationship as well as their association with such variables as caregiver grief and health.