Perceptions of a Home Hospice Crisis: An Exploratory Study of Family Caregivers. Academic Article uri icon

Overview

abstract

  • Background: Crises that occur in home hospice care affect family caregivers' satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined. Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization. Measurements: Participants were asked to identify any crisis-defined as a time of intense distress due to a physical, psychological, and/or spiritual cause-they or the patient experienced, while receiving home hospice care. Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis. Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.

publication date

  • March 28, 2019

Research

keywords

  • Adaptation, Psychological
  • Caregivers
  • Family
  • Hospice Care
  • Nurses, Community Health
  • Quality of Health Care

Identity

PubMed Central ID

  • PMC6735312

Scopus Document Identifier

  • 85072057623

Digital Object Identifier (DOI)

  • 10.1089/jpm.2018.0511

PubMed ID

  • 30920337

Additional Document Info

volume

  • 22

issue

  • 9