Objective - The purpose was to investigate end of life decision-making from the perspective of people with chronic illness particularly concerning: the completion of ADs, the meaning of ADs for them, and their experiences with, attitudes toward, and perceived needs related to ADs. Design - Qualitative Population, Sample, Setting - Theoretical sample of 73 people with varying chronic illness recruited from 16 different support groups representing 10 different chronic illnesses. Investigators visited support group, presented an AD education program, explained the study and recruited volunteers to participate in the study. Concept or Variables Studied Together -Advance directives, perceptions and needs related to end of life decisions. Methods -Data were collected via 23 semi-structured individual interviews and 9 focus groups. Grounded theory method of analysis was used. Atlas.ti, a computerized software program was used to assist the investigators with data analysis. Findings - The major categories that emerged from the analysis are: importance of learning about ADs, role of past experiences related to end of life decision-making, confusion over understanding and completing ADs, personal and societal issues affecting AD completion, and the role of health care providers in assisting patients to understand and complete ADs. Conclusions - People with chronic illnesses do not have a good understanding of ADs. Health care proxy was a mechanism that was easier to understand than living wills. Health care providers are not assisting people with serious chronic illnesses to understand or complete ADs. Implications - Future intervention studies should focus on mechanisms to help individuals to understand and complete ADs in a way that does not depend on their health care provider initiating the process. The intervention should provide specific knowledge related to ADs, a mechanism to complete ADs and the ability of persons to ask questions and clarify their understanding of AD completion.
Back to Accepted Posters
Back to 37th Biennial Convention - Scientific Session
Sigma Theta Tau International