“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
Restricted accessResearch articleFirst published online December, 2022
“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
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.
WolffJLFreedmanVAOrnsteinKA, et al. Evaluation of hospice enrollment and family and unpaid caregivers’ experiences with health care workers in the care of older adults during the last month of life. JAMA Netw Open2020; 3: e203599.
2.
BagSMohantySDeepN, et al. Palliative and end of life care in India - current scenario and the way forward. J Assoc Physicians India2020; 68: 61–65.
3.
LingMWangXMaY, et al. A review of the current state of hospice care in China. Curr Oncol Rep2020; 22: 99.
4.
De LimaLRadbruchL. The International Association for Hospice and Palliative Care: advancing hospice and palliative care worldwide. J Pain Symptom Manag2018; 55: S96–S103.
5.
NHPCO. NHPCO facts and Figures 2020 Edition. Alexandria, VA: National Hospice and Palliative Care Organization, 2020.
6.
CagleJGLeeJOrnsteinKA, et al. Hospice utilization in the United States: a prospective cohort study comparing cancer and noncancer deaths. J Am Geriatr Soc2020; 68: 783–793.
7.
CrossSHWarraichHJ. Changes in the place of death in the United States. N Engl J Med2019; 381: 2369–2370.
8.
Weber-Raley LaHK. Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+. Washington, DC: Greenwald Research, 2020.
9.
WolffJLSpillmanBCFreedmanVA, et al. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med2016; 176: 372–379.
10.
OrnsteinKAKelleyASBollens-LundE, et al. A national profile of end-of-life caregiving in the United States. Health Aff2017; 36: 1184–1192.
11.
MichaelsJChenCAnn MeekerM. Navigating the caregiving abyss: a metasynthesis of how family caregivers manage end-of-life care for older adults at home. Palliat Med2022; 36: 81–94.
12.
WilliamsAMWangLKitchenP. Impacts of care-giving and sources of support: a comparison of end-of-life and non-end-of-life caregivers in Canada. Health Soc Care Community2016; 24: 214–224.
HughesNMNoyesJEckleyL, et al. What do patients and family-caregivers value from hospice care? A systematic mixed studies review. BMC Palliat Care2019; 18: 18.
15.
AounSMRumboldBHowtingD, et al. Bereavement support for family caregivers: the gap between guidelines and practice in palliative care. PLoS One2017; 12: e0184750.
16.
Chentsova-DuttonYShuchterSHutchinS, et al. The psychological and physical health of hospice caregivers. Ann Clin Psychiatry2000; 12: 19–27.
17.
Parker OliverDWashingtonKSmithJ, et al. The prevalence and risks for depression and anxiety in hospice caregivers. J Palliat Med2017; 20: 366–371.
18.
WashingtonKTParker OliverDSmithJB, et al. Sleep problems, anxiety, and global self-rated health among hospice family caregivers. Am J Hosp Palliat Care2018; 35: 244–249.
19.
EngbersRA. Informal caregivers’ perceptions of needs from hospice providers: an integrative review. Am J Hosp Palliat Care2019; 36: 1114–1123.
20.
KumarVAnkudaCKAldridgeMD, et al. Family caregiving at the end of life and hospice use: a national study of Medicare beneficiaries. J Am Geriatr Soc2020; 68: 2288–2296.
21.
GaoCChapagainNYScullinMK. Sleep duration and sleep quality in caregivers of patients with dementia: a systematic review and meta-analysis. JAMA Netw Open2019; 2: e199891.
22.
MaltbyKFSandersonCRLobbEA, et al. Sleep disturbances in caregivers of patients with advanced cancer: a systematic review. Palliat Support Care2017; 15: 125–140.
23.
ByunELerdalAGayCL, et al. How adult caregiving impacts sleep: a systematic review. Curr Sleep Med Rep2016; 2: 191–205.
24.
CarterPA. Caregivers’ descriptions of sleep changes and depressive symptoms. Oncol Nurs Forum2002; 29: 1277–1283.
25.
LerdalAGayCLSaghaugE, et al. Sleep in family caregivers of patients admitted to hospice: a pilot study. Palliat Support Care2014; 12: 439–444.
26.
StarrLTWashingtonKMcPhillipsMV, et al. Insomnia symptoms among hospice family caregivers: prevalence and association with caregiver mental and physical health, quality of life, and caregiver burden. Am J Hosp Palliat Care. Epub ahead of print 26 May 2022. DOI: 10.1177/10499091221105882
27.
LeeKCHsiehYLLinPC, et al. Sleep pattern and predictors of sleep disturbance among family caregivers of terminal ill patients with cancer in Taiwan: a longitudinal study. Am J Hosp Palliat Care2018; 35: 1109–1117.
28.
RavytsSGDzierzewskiJM. Sleep Disturbance, mental health symptoms, and quality of life: A structural equation model assessing aspects of caregiver burden. Clin Gerontol2020; 2020: 1–10.
29.
LeggettANMorleyMSmagulaSF. “It’s been a hard day’s night”: sleep problems in caregivers for older adults. Curr Sleep Med Rep2020; 6: 1–10.
30.
JohansenSCvancarovaMRulandC. The effect of cancer patients’ and their family caregivers’ physical and emotional symptoms on caregiver burden. Cancer Nurs2018; 41: 91–99.
31.
LuthEAMaciejewskiPKPhongtankuelV, et al. Associations between hospice care and scary family caregiver experiences. J Pain Symptom Manag2021; 61: 909–916.
32.
StarrLTBullockKWashingtonK, et al. Anxiety, depression, quality of life, caregiver burden, and perceptions of caregiver-centered communication among black and white hospice family caregivers. J Palliat Med2022; 25: 596–605.
33.
GötzeHBrählerEGanseraL, et al. Anxiety, depression and quality of life in family caregivers of palliative cancer patients during home care and after the patient’s death. Eur J Cancer Care2018; 27: e12606.
34.
Soto-RubioAPerez-MarinMTomas MiguelJ, et al. Emotional distress of patients at end-of-life and their caregivers: interrelation and predictors. Front Psychol2018; 9: 2199.
35.
GebaraMASiripongNDiNapoliEA, et al. Effect of insomnia treatments on depression: a systematic review and meta-analysis. Depress Anxiety2018; 35: 717–731.
36.
PiresGNBezerraAGTufikS, et al. Effects of acute sleep deprivation on state anxiety levels: a systematic review and meta-analysis. Sleep Med2016; 24: 109–118.
37.
CoxRCOlatunjiBO. A systematic review of sleep disturbance in anxiety and related disorders. J Anxiety Disord2016; 37: 104–129.
HeckelMSturmAStielS, et al. ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care – a mixed-methods study. Palliat Med2020; 34: 219–230.
40.
DoddMJansonSFacioneN, et al. Advancing the science of symptom management. J Adv Nurs2001; 33: 668–676.
41.
SilvaLAGPDLopesVJMercêsNNAD. Symptom management theory applied to nursing care: scoping review. Rev Bras Enferm2021; 74: e20201004.
42.
DemirisGOliverDPWashingtonK, et al. A problem-solving intervention for hospice family caregivers: a randomized clinical trial. J Am Geriatr Soc2019; 67: 1345–1352.
43.
Parker OliverDDemirisGWashingtonK, et al. Hospice family caregiver involvement in care plan meetings: a mixed-methods randomized controlled trial. Am J Hosp Palliat Care2017; 34: 849–859.
44.
MacGregorKLFunderburkJSPigeonW, et al. Evaluation of the PHQ-9 item 3 as a screen for sleep disturbance in primary care. J Gen Intern Med2012; 27: 339–344.
45.
SpitzerRLKroenkeKWilliamsJB, et al. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med2006; 166: 1092–1097.
46.
OliverDPKruseRLSmithJ, et al. Assessing the reliability and validity of a brief measure of caregiver quality of life. J Pain Symptom Manag2019; 58: 871–877.
47.
ButcherEPackhamCWilliamsM, et al. Screening male prisoners for depression and anxiety with the PHQ-9 and GAD-7 at NHS Healthcheck: patterns of symptoms and caseness threshold. BMC Psychiatry2021; 21: 446.
48.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol2006; 3: 77–101.
49.
BraunVClarkeV. One size fits all? What counts as quality practice in (reflexive) thematic analysis?Qual Res Psychol2021; 18: 328–352.
50.
BraunVClarkeV. Can I use ta? Should I use ta? Should I not use ta? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Couns Psychother Res2021; 21: 37–47.
51.
BraunVClarkeV. What can “thematic analysis” offer health and wellbeing researchers?Int J Qual Stud Health Well Being2014; 9: 26152.
52.
O’BrienBCHarrisIBBeckmanTJ, et al. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med2014; 89: 1245–1251.
53.
PanWLChangCWChenSM, et al. Assessing the effectiveness of mindfulness-based programs on mental health during pregnancy and early motherhood - a randomized control trial. BMC Pregnancy Childbirth2019; 19: 346.
54.
FalanaSDCarringtonJM. Postpartum depression: are you listening?Nurs Clin North Am2019; 54: 561–567.
55.
OkunMLMancusoRAHobelCJ, et al. Poor sleep quality increases symptoms of depression and anxiety in postpartum women. J Behav Med2018; 41: 703–710.
56.
SharmaVPalaginiLRiemannD. Should we target insomnia to treat and prevent postpartum depression?J Matern Fetal Neonatal Med2021; 2021: 1–3.
57.
CoelhoAde BritoMBarbosaA. Caregiver anticipatory grief: phenomenology, assessment and clinical interventions. Curr Opin Support Palliat Care2018; 12: 52–57.
58.
FinlaysonKCrosslandNBonetM, et al. What matters to women in the postnatal period: a meta-synthesis of qualitative studies. PLoS One2020; 15: e0231415.
59.
RatkowskiKLWashingtonKTCraigKW, et al. The stress of sadness: the most stressful symptoms for hospice family caregivers. Am J Hosp Palliat Care2015; 32: 745–749.
60.
OechsleKUllrichAMarxG, et al. Prevalence and predictors of distress, anxiety, depression, and quality of life in bereaved family caregivers of patients with advanced cancer. Am J Hosp Palliat Care2020; 37: 201–213.
61.
CoelhoAde BritoMTeixeiraP, et al. Family caregivers’ anticipatory grief: a conceptual framework for understanding its multiple challenges. Qual Health Res2020; 30: 693–703.
62.
DehpourTKoffmanJ. Assessment of anticipatory grief in informal caregivers of dependants with dementia: a systematic review. Aging Ment Health2022; 2022: 1–14.
63.
KustantiCYChuHKangXL, et al. Anticipatory grief prevalence among caregivers of persons with a life-threatening illness: a meta-analysis. BMJ Support Palliat Care. Epub ahead of print 11 February 2022. DOI: 10.1136/bmjspcare-2021-003338
64.
TestoniIFrancoCPalazzoL, et al. The Endless Grief in waiting: A qualitative study of the relationship between ambiguous loss and anticipatory mourning amongst the relatives of missing persons in Italy. Behav Sci2020; 10: E110.
65.
AxelssonLAlvarizaAHolmM, et al. Intensity of predeath grief and postdeath grief of family caregivers in palliative care in relation to preparedness for caregiving, caregiver burden, and social support. Palliat Med Rep2020; 1: 191–200.
66.
CoelhoASilvaCBarbosaA. Portuguese validation of the Prolonged Grief Disorder Questionnaire-predeath (PG-12): Psychometric properties and correlates. Palliat Support Care2017; 15: 544–553.
67.
NielsenMKNeergaardMAJensenAB, et al. Preloss grief in family caregivers during end-of-life cancer care: a nationwide population-based cohort study. Psychooncology2017; 26: 2048–2056.
68.
WashingtonKTWilkesCMRakesCR, et al. Relationships among symptom management burden, coping responses, and caregiver psychological distress at end of life. J Palliat Med2018; 21: 1234–1241.
69.
ReblinMCloyesKGCarpenterJ, et al. Social support needs: discordance between home hospice nurses and former family caregivers. Palliat Support Care2015; 13: 465–472.
70.
LewisBAGjerdingenDSchuverK, et al. The effect of sleep pattern changes on postpartum depressive symptoms. BMC Womens Health2018; 18: 12.
71.
BilginAWolkeD. Parental use of ‘cry it out’ in infants: No adverse effects on attachment and behavioural development at 18 months. J Child Psychol Psychiatry2020; 61(11): 1184-1193. doi: 10.1111/jcpp.13223. Epub 2020 Mar 10. PMID: 32155677.
Ortega-GalánÁMRuiz-FernándezMDCarmona-RegaMI, et al. The experiences of family caregivers at the end of life: suffering, compassion satisfaction and support of health care professionals: experiences of caregivers at the end of life. J Hosp Palliat Nurs2019; 21: 438–444.
74.
McPhillipsMVDicksonVVCacchionePZ, et al. Nursing home eligible, community-dwelling older adults’ perceptions and beliefs about sleep: a mixed-methods study. Clin Nurs Res2020; 29: 177–188.
75.
Fernández-PuertaLPradosGJiménez-MejíasE. Interventions that improve sleep in caregivers of adult care-recipients: a systematic review. West J Nurs Res2022; 44: 180–199.
76.
McCurrySMSongYMartinJL. Sleep in caregivers: what we know and what we need to learn. Curr Opin Psychiatry2015; 28: 497–503.
77.
UtzRLCasertaMLundD. Grief, depressive symptoms, and physical health among recently bereaved spouses. Gerontologist2012; 52: 460–471.
78.
VargasINguyenAMMuenchA, et al. Acute and chronic insomnia: what has time and/or hyperarousal got to do with it?Brain Sci2020; 10: E71.
79.
EismaMCde LangTABoelenPA. How thinking hurts: rumination, worry, and avoidance processes in adjustment to bereavement. Clin Psychol Psychother2020; 27: 548–558.
80.
OhCMKimHYNaHK, et al. The effect of anxiety and depression on sleep quality of individuals with high risk for insomnia: a population-based study. Front Neurol2019; 10: 849.
81.
de FeijterMO’ConnorMFArizmendiBJ, et al. The longitudinal association of actigraphy-estimated sleep with grief in middle-aged and elderly persons. J Psychiatr Res2021; 137: 66–72.
82.
SzuhanyKLYoungAMauroC, et al. Impact of sleep on complicated grief severity and outcomes. Depress Anxiety2020; 37: 73–80.
83.
BaoYPHanYMaJ, et al. Cooccurrence and bidirectional prediction of sleep disturbances and depression in older adults: meta-analysis and systematic review. Neurosci Biobehav Rev2017; 75: 257–273.
84.
LerdalASlåttenKSaghaugE, et al. Sleep among bereaved caregivers of patients admitted to hospice: a 1-year longitudinal pilot study. BMJ Open2016; 6: e009345.
85.
CoreyKLMcCurryMKSetharesKA, et al. Predictors of psychological distress and sleep quality in former family caregivers of people with dementia. Aging Ment Health2020; 24: 233–241.
86.
CarterPA. Bereaved caregivers’ descriptions of sleep: impact on daily life and the bereavement process. Oncol Nurs Forum2005; 32: 741.
87.
RogersJEBConstantineLAThompsonJM, et al. COVID-19 pandemic impacts on U.S. Hospice agencies: A National Survey of hospice nurses and physicians. Am J Hosp Palliat Care2021; 38: 521–527.
88.
ChiNCDemirisGPikeKC, et al. Exploring the challenges that family caregivers faced when caring for hospice patients with heart failure. J Soc Work End Life Palliat Care2018; 14: 162–176.
89.
RuiterMEDecosterJJacobsL, et al. Normal sleep in African-Americans and Caucasian-Americans: a meta-analysis. Sleep Med2011; 12: 209–214.
90.
StamatakisKAKaplanGARobertsRE. Short sleep duration across income, education, and race/ethnic groups: population prevalence and growing disparities during 34 years of follow-up. Ann Epidemiol2007; 17: 948–955.
91.
KingsburyJHBuxtonOMEmmonsKM. Sleep and its relationship to racial and ethnic disparities in cardiovascular disease. Curr Cardiovasc Risk Rep2013; 7(5): 1–15. DOI: 10.1007/s12170-013-0330-0
92.
HaleLTroxelWBuysseDJ. Sleep Health: an opportunity for public health to address health equity. Annu Rev Public Health2020; 41: 81–99.
93.
Pérez OrtegaR. Divided we sleep. Science2021; 374: 552–555.
94.
HenninkMKaiserBN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med2022; 292: 114523.
