TY - JOUR
T1 - “It was terrible, I didn’t sleep for two years”
T2 - A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life
AU - Starr, Lauren T.
AU - Washington, Karla T.
AU - McPhillips, Miranda V.
AU - Pitzer, Kyle
AU - Demiris, George
AU - Oliver, Debra Parker
N1 - Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Data analyzed in this study were collected from clinical trial NCT03712410 (PISCES: A Problem Solving Intervention for Hospice Caregivers) and from clinical trial NCT02929108 (ACCESS: Access for Cancer Caregivers for Education and Support for Shared Decision Making). Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number 2R01NR012213 and the National Cancer Institute of the National Institutes of Health under Award Number 7R01CA203999. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. In addition, Dr. Starr is supported by the Ruth L. Kirschstein National Research Service Award training program in Individualized Care for At Risk Older Adults at the University of Pennsylvania, National Institute of Nursing Research (T32NR009356). Dr. McPhillips is supported by the National Institute of Nursing Research (K23NR018487).
Publisher Copyright:
© The Author(s) 2022.
PY - 2022/12
Y1 - 2022/12
N2 - Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.
AB - Background: Due to overnight caregiving demands; exacerbation of high rates of anxiety, depression, and distress; and inadequate support, millions of family caregivers of patients receiving in-home hospice are at risk of poor sleep and negative health effects. Aim: To describe sleep experiences of family caregivers of in-home hospice patients and perceptions of these experiences on caregivers’ wellbeing in the context of caregiver health and live-in status. Design: Developed using the Symptom Management Model, this mixed methods study featured a concurrent nested design prioritizing qualitative reflexive thematic analysis. Setting/participants: About 47 family caregivers of in-home hospice patients from two randomized clinical trials (NCT03712410, NCT02929108) were interviewed (United States, 2021). Anxiety (GAD-7), depression (PHQ-9), quality-of-life (QOL) (CQLI-R), and self-rated health and energy were reported prior to interviews. Results: Qualitative analysis revealed three themes: compromised sleep quality, factors influencing sleep, effects of sleep. 72.5% of hospice family caregivers described “fair” or “poor” sleep quality, with “interrupted” sleep and frequent night-waking due to “on-call” “vigilance” and anxiety. Negative effects included exhaustion, mental and physical health decline, and reduced caregiver function. Live-in caregivers reported higher mean depression scores (8.4 vs 4.3, p = 0.08), higher mean anxiety scores (7.7 vs 3.3, p = 0.06), and lower mean QOL scores (24.8 vs 33.6, p < 0.001) than live-out caregivers. Anxiety, depression, and QOL worsened as self-reported caregiver sleep quality decreased. Few caregivers had adequate support. Conclusion: End-of-life family caregivers experience disrupted sleep with negative effects and inadequate support. Clinicians must assess sleep, offer sleep interventions, and provide more supports to hospice family caregivers.
KW - Hospices
KW - caregivers
KW - cognitive behavioral therapy
KW - death
KW - family
KW - health status disparities
KW - mixed methods
KW - sleep
KW - social support
UR - http://www.scopus.com/inward/record.url?scp=85138759689&partnerID=8YFLogxK
U2 - 10.1177/02692163221122956
DO - 10.1177/02692163221122956
M3 - Article
C2 - 36151698
AN - SCOPUS:85138759689
SN - 0269-2163
VL - 36
SP - 1504
EP - 1521
JO - Palliative Medicine
JF - Palliative Medicine
IS - 10
ER -