"It Was Terrible, I Didn't Sleep for Two Years": A Mixed Methods Exploration of Sleep and Its Effects Among Family Caregivers of In-home Hospice Patients at End-of-life

Overview

Journal Palliat Med

Publisher Sage Publications

Specialty Critical Care

Date 2022 Sep 24

PMID 36151698

Authors

Lauren T Starr

Karla T Washington

Miranda V McPhillips

Kyle Pitzer

George Demiris

Debra Parker Oliver

Affiliations

Soon will be listed here.

Abstract

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 "" sleep and frequent night-waking due to "" "" 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, = 0.08), higher mean anxiety scores (7.7 vs 3.3, = 0.06), and lower mean QOL scores (24.8 vs 33.6, < 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.

Citing Articles

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis.

Yang X, Li X, Jiang S, Yu X JMIR Mhealth Uhealth. 2024; 12:e54244.

PMID: 38602303 PMC: 11024400. DOI: 10.2196/54244.

Insomnia Symptoms Among Hospice Family Caregivers: Prevalence and Association with Caregiver Mental and Physical Health, Quality of Life, and Caregiver Burden.

Starr L, Washington K, McPhillips M, Pitzer K, Demiris G, Parker Oliver D Am J Hosp Palliat Care. 2022; 40(5):517-528.

PMID: 35620797 PMC: 9699902. DOI: 10.1177/10499091221105882.

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