To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.
Methods:
Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient’s discharge or death at specialist inpatient palliative care ward.
Results:
Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of “bodily pain” and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.
Conclusion:
Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
World Health Organization. National Cancer Control Programmes: Policies and Managerial Guidelines. Geneva, Switzerland: World Health Organization; 2002.
2.
HudsonPPayneS. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14(7):864–869.
3.
CandyBJonesLDrakeRLeurentBKingM. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database Syst Rev. 2011;(6):CD007617.
4.
WilliamsA-LMcCorkleR. Cancer family caregivers during the palliative, hospice, and bereavement phases: a review of the descriptive psychosocial literature. Palliat Support Care. 2011;9(3):315–325.
5.
DiGiacomoMHatanoYPhillipsJLewisJAbernethyAPCurrowDC. Caregiver characteristics and bereavement needs: findings from a population study. J Palliat Med. 2017;31(5):465–474.
6.
YamamotoSAraoHMasutaniE, et al.Decision making regarding the place of end-of-life cancer care: the burden on bereaved families and related factors. J Pain Symptom Manage. 2017;53(5):862–870.
7.
RosenbergerCHöckerACartusMSchulz-KindermannFHaerterMMehnertA. Outpatient psycho-oncological care for family members and patients: access, psychological distress and supportive care needs. J Psychother Psychosom Med. 2012;62(5):185–194.
8.
HalkettGKLobbEAShawT, et al.Distress and psychological morbidity do not reduce over time in carers of patients with high-grade glioma. J Support Care Cancer. 2017;25(3):887–893.
9.
AounSMRumboldBHowtingDBolleterABreenLJ. Bereavement support for family caregivers: the gap between guidelines and practice in palliative care. PLoS One. 2017;12(10):e0184750.
10.
GrandeGEAustinLEwingGO’LearyNRobertsC. Assessing the impact of a Carer Support Needs Assessment Tool (CSNAT) intervention in palliative home care: a stepped wedge cluster trial. BMJ Support Palliat Care. 2017;7(3):326–334.
11.
GötzeHBrählerEGanseraLSchnabelAGottschalk FleischerAKöhlerN. 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 Care. 2018;27(2):e12606.
12.
Gottschalk-FleischerAKöhlerNBrählerEMehnertAGoetzeH. Aftermath of death of a seriously ill family member: online survey of psychological distress and care satisfaction of relatives. Gesundheitswesen. 2019;81(2):106–112.
13.
KuoSCChouWCChenJS, et al.Longitudinal changes in and modifiable predictors of the prevalence of severe depressive symptoms for family caregivers of terminally ill cancer patients over the first two years of bereavement. J Palliat Med. 2017;20(1):15–22.
14.
CasertaMUtzRLundDSupianoKDonaldsonG. Cancer caregivers’ preparedness for loss and bereavement outcomes: do preloss caregiver attributes matter?[Epublished ahead of print 2017, January, 1.]Omega (Westport). 2017. doi:10.1177/0030222817729610.
15.
HatanoYAoyamaMMoritaT, et al.The relationship between cancer patients’ place of death and bereaved caregivers’ mental health status. Psychooncology. 2017;26(11):1959–1964.
16.
MoriMYoshidaSShiozakiM, et al.“What i did for my loved one is more important than whether we talked about death”: a nationwide survey of bereaved family members. J Palliat Med. 2018;21(3):335–341.
17.
YamaguchiTMaedaIHatanoY, et al.Effects of end-of-life discussions on the mental health of bereaved family members and quality of patient death and care. J Pain Symptom Manage. 2017;54(1):17–26. e11.
18.
HeckelMBussmannSWeberMOstgatheCStielS. Interference between family caregivers’ mental disorders and their estimates of quality of dying and death (QODD) of their loved ones. J Palliat Care. 2017;32(1):34–39.
19.
ShafferKMKimYCarverCSCannadyRS. Depressive symptoms predict cancer caregivers’ physical health decline. J Cancer. 2017;123(21):4277–4285.
20.
PernerAKoehlerNBraehlerEGoetzeH. Quality of life and satisfaction of family caregivers in palliative care-results of postmortem interviews with bereaved family members. Z Psychosom Med Psychother. 2012;58(3):267–281.
21.
ShiozakiMHiraiKDohkeR, et al.Measuring the regret of bereaved family members regarding the decision to admit cancer patients to palliative care units. Psychooncology. 2008;17(9):926–931.
22.
National Comprehensive Cancer Center Network (NCCN). Distress management. Clinical practice guidelines. J Natl Compr Canc Netw. 2003;1(3):344–374.
23.
SpitzerRLKroenkeKWilliamsJBLöweB. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166:1092–1097.
24.
KroenkeKSpitzerRLWilliamsJB. The PHQ-9: validity of a brief depression severity measure. J Gen Int Med. 2001;16(9):606–613.
25.
WareJEKosinskiMDeweyJEGandekB. How to Score and Interpret Single-Item Health Status Measures: A Manual for Users of the SF-8 Health Survey. Lincoln, RI: Quality Metric Incorporated; 2001.
26.
MehnertAMüllerDLehmannCKochU. The German version of the NCCN distress thermometer: validation of a screening instrument for assessment of psychosocial distress in cancer patients. Z Psychiat Psych Psychother. 2006;54(3):213–223.
27.
ZwahlenDHagenbuchNCarleyMIRecklitisCJBuchiS. Screening cancer patients’ families with the distress thermometer (DT): a validation study. Psychooncology. 2008;17(10):959–966.
28.
UllrichAAscherfeldLMarxGBokemeyerCBergeltCOechsleK. Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients. BMC Palliat Care. 2017;16(1):31.
29.
LöweBDeckerOMüllerS, et al.Validation and standardization of the Generalized Anxiety Disorder Screener (GAD-7) in the general population. Med Care. 2008;46(3):266–274.
30.
KocaleventR-DHinzABrählerE. Standardization of the depression screener patient health questionnaire (PHQ-9) in the general population. J Gen Hosp Psychiat. 2013;35(5):551–555.
31.
BeierleinVMorfeldMBergeltCBullingerMBraehlerE. Measuring health-related quality of life with the SF-8: German norms from a representative self-administered survey. Diagnostica. 2012;58(3):145–153.
32.
AounSBirdSKristjansonLJCurrowD. Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care. J Palliat Med. 2010;24(7):674–681.
33.
SewtzCMuscheitesWKriesenU, et al.Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting—German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal. Ann Palliat Med. 2018;7(4):420–426.
34.
SchenkLBauA-MBordeT, et al.Mindestindikatorensatz zur Erfassung des Migrationsstatus. Bundesgesundheitsbla. 2006;49(9):853–860.
35.
WinklerJStolzenbergH. Social class index in the Federal Health Survey. [Article in German]. Gesundheitswesen. 1999;61:S178–S183.
36.
WinklerJStolzenbergH. Adjustment of the social class index for application in the German health interview and examination survey for children and adolescents (KiGGS). Wismar, Germany: HWS-Hochschule Wismar; 2009.
37.
DalgardOSBjSTambsK. Social support, negative life events and mental health. Brit J Psychiatry. 1995;166(1):29–34.
38.
MeltzerH. Developing common instruments for health surveys. In: NosikovAGudexC, eds. EUROHIS: Development of a Common Instrument for Mental Health. Amsterdam, the Netherlands: IOS Press; 2003: 35–60.
39.
von ElmEAltmanDGEggerM, et al.The strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61(14):344–349.
40.
LaiCLucianiMGalliF, et al.Persistent complex bereavement disorder in caregivers of terminally ill patients undergoing supportive-expressive treatment: a pilot study. J Mental Health. 2017;26(2):111–118.
41.
TsaiWIPrigersonHGLiCYChouWCKuoSCTangST. Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient’s death. Palliat Med. 2016;30(5):495–503.
42.
LaiCLucianiMGalliF, et al.Persistent complex bereavement disorder in caregivers of terminally ill patients undergoing supportive-expressive treatment: a pilot study. J Mental Health. 2017;26(2):111–118.
