John G Cagle1, Kathleen T Unroe2, Morgan Bunting3, Brittany L Bernard2, Susan C Miller4. 1. University of Maryland, Baltimore, Maryland, USA. Electronic address: jcagle@ssw.umaryland.edu. 2. Indiana University Center for Aging Research, Indianapolis, Indiana, USA; Regenstrief Institute, Inc., Indianapolis, Indiana, USA. 3. University of Maryland, Baltimore, Maryland, USA. 4. Brown University School of Public Health, Providence, Rhode Island, USA.
Abstract
CONTEXT: Nursing homes are an important site for end-of-life care, yet little is known about the perspectives of the frontline staff who provide a majority of this care. OBJECTIVE: To describe, from the staff perspective, positive/negative experiences related to caring for dying residents. METHODS: Qualitative analysis using survey data from staff working in 52 Indiana nursing homes. RESULTS: A total of 707 frontline staff who provide nursing, nurse aide, and social work services responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method. Respondents were largely female (93%), white (78%), 31-50 years (42%), and 53% had >5 years of nursing home work experience. Experiences were described from three perspectives: 1) first-hand experiences, 2) observed experiences of dying patients, and 3) observed experiences of family members. Selected themes for positive experiences include the following: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences consisted of the following: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. CONCLUSION: Findings reveal the richness and many complexities of providing end-of-life care in nursing homes and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients.
CONTEXT: Nursing homes are an important site for end-of-life care, yet little is known about the perspectives of the frontline staff who provide a majority of this care. OBJECTIVE: To describe, from the staff perspective, positive/negative experiences related to caring for dying residents. METHODS: Qualitative analysis using survey data from staff working in 52 Indiana nursing homes. RESULTS: A total of 707 frontline staff who provide nursing, nurse aide, and social work services responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method. Respondents were largely female (93%), white (78%), 31-50 years (42%), and 53% had >5 years of nursing home work experience. Experiences were described from three perspectives: 1) first-hand experiences, 2) observed experiences of dying patients, and 3) observed experiences of family members. Selected themes for positive experiences include the following: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences consisted of the following: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. CONCLUSION: Findings reveal the richness and many complexities of providing end-of-life care in nursing homes and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients.
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