Individuals in the final stages of life are often cared for by informal caregivers whose interpretation of the patient’s signs, symptoms and treatment needs and options may be incongruent with that of healthcare providers (Docherty et al., 2008). Nurses need to fully understand the scope of this disparity. The purpose of this study was to determine how Black caregivers interpreted signs, symptoms, and treatments for symptom relief during the last months of their loved one’s life. The effect on caregiver decision making was explored. This project is a secondary analysis of preexisting qualitative data. Transcripts from 5 focus groups encompassed 53 participants. All participants were Black and informal caregivers or decision makers for a loved one at their loved one’s end of life. Eighty-seven percent of caregivers were female, and a majority had a high school education. The mean age was 66. Transcripts were coded for themes independently by two researchers. To allow for the most open interpretation, no a priori set of codes was utilized. 3 main categories of signs, 4 main categories of symptoms, 4 themes of the interpretation of signs and symptoms, 4 main categories of treatments and interventions, 5 themes of the interpretation of treatments, and 3 themes describing the effect of signs, symptoms, and treatments on decision making were identified. Case examples of the caregiver interpretation process are included. Health care providers need to provide time, clear and simplified language, and additional explanation in communication. Further research combining health literacy measures and qualitative data on interpretations should be conducted.
Conner, Norma E.
Bachelor of Science in Nursing (B.S.N.)
College of Nursing
Orlando (Main) Campus
Length of Campus-only Access
Sermarini, Samantha M., "Black Caregiver Responses to and Perceptions of Signs, Symptoms, and Treatments at the End of Life" (2016). Honors Undergraduate Theses. 17.