Clinical Scholarship Role Strain and Ease in Decision-Making to Withdraw or Withhold Life Support for Elderly Relatives Lissi Hansen, Patricia G. Archbold, Barbara J. Stewart 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 de- scriptions 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. JOURNAL OF NURSING SCHOLARSHIP , 2004; 36:3, 233-238. C 2004 SIGMA THETA TAU INTERNATIONAL. [Key words: role strain, role satisfaction, family caregiver, decision-making, life support] * * * M ore than 2 decades of research have yielded much information about role strain, stress, and burden in family care in the home (Archbold, Stewart, Greenlick, & Harvath, 1990; Given & Given, 1991) and also about satisfaction, rewards, and other positive aspects of family care (Kramer, 1997). Little is known, however, about role strain and role satisfaction that family caregivers experience as they make decisions to withdraw or withhold life support for elderly relatives in a variety of settings. The purpose of this study was to clarify two concepts from role theory—role strain and role satisfaction—in relation to fam- ily caregivers’ experiences when making such decisions. Life support is the term used in this paper. It is interchangeable with life-sustaining treatment (LST). Background Family caregivers’ involvement in making decisions to withdraw or withhold life support was conceptualized as an aspect of the family caregiving role in the ongoing con- text of family relations and family care (Burr, Leigh, Day, & Constantine, 1979). Decisions to withdraw or withhold life support are made in context and, over time, role strain and role satisfaction were examined as perceived by the family caregiver after the death of an elderly relative. Consistent with Goode’s (1960) definition, role strain was initially defined as the family caregiver’s difficulty follow- ing decisions to withdraw or withhold life support for an elderly relative. Previous family caregiving literature was focused on multiple dimensions of caregiver role strain, such as emotional, physical, financial, social, and work- related strain (Archbold et al., 1990; Given & Given, 1991), Lissi Hansen, PhD, RN, Delta Chi-at-Large, Assistant Professor; Patricia G. Archbold, RN, DNSc, FAAN, Beta Psi , Elnora E. Thomson Distinguished Professor; Barbara J. Stewart, PhD, Professor Emerita; all at School of Nursing, Oregon Health Sciences University, Portland, OR. The study was funded by grants 1F31-NR07530-01A1 and T32-NR07048-06 from the National Institute of Nursing Research, National Institutes of Health. Lissi Hansen acknowledges the John A. Hartford Foundation’s (JAHF) Building Academic Geriatric Nursing Capacity Scholarship Program for its support. Correspondence to Dr. Hansen, School of Nursing, Oregon Health Sciences University, 3181 SW Sam Jackson Park Road, Portland, OR 97201-3098. E-mail: hansenli@ohsu.edu Accepted for publication July 1, 2003. Journal of Nursing Scholarship Third Quarter 2004 233