Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers.
BACKGROUND
Managing medications is a complex responsibility of family caregivers caring for end-of-life patients. This study characterizes caregivers with and without formal/informal support managing medications for patients who receive end-of-life care at home.


OBJECTIVE
To explore factors related to caregivers' support with managing medications for end-of-life home hospice patients.


METHODS
A convenience-sampled, cross-sectional telephone survey.


METHODS
Computer-assisted telephone interviews were administered to 120 caregivers managing medications, who were referred by five Chicago-based home hospice services. We measured caregivers' additional formal (paid) and informal (unpaid) support with managing medications, and caregiver/patient socio-demographic, relational, and health characteristics.


RESULTS
While 47 (39%) had no additional support with managing medications, 27 (22.5%) had formal support, 37 (31%) informal, and 9 (7.5%) both. Seven caregivers (19%) with formal and 13 (31%) with informal support reported disagreements concerning treatment plans. Caregivers lacking formal support tended to be racial/ethnic minorities, live with the patient in their home, or report greater emotional burden. Caregivers with formal support tended to report higher education/income, lower mutuality, or care for a patient with over 6 months' hospice enrollment. Caregivers lacking informal support tended to be spousal caregivers, live with the patient, or have experience caring for another dying person.


CONCLUSIONS
Our study suggests that high proportions of caregivers may not have support managing medications for patients receiving hospice care at home. More research should examine whether the observed variations in obtaining support indicate disparities or unmet needs among caregivers. Disagreement about treatment with formal/informal support also warrants further investigation.
Division of Epidemiology and Biostatistics, School of Public Health, University of Illinois, Chicago, IL, USA.
Brian T
BT
Joyce
Leonard Schanfield Research Institute, CJE SeniorLife, Chicago, IL, USA.
Rebecca
R
Berman
Division of Health Care Statistics, National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, MD, USA Department of Pharmacy Systems, Outcomes and Policy, College of Pharmacy, University of Illinois, Chicago, IL, USA DLau1@cdc.gov.
Denys T
DT
Lau
D000328:Adult; D000368:Aged; D000704:Analysis of Variance; D017028:Caregivers / Q000523:psychology; D002641:Chicago; D003430:Cross-Sectional Studies; D005260:Female; D006701:Home Nursing / Q000458:organization & administration / Q000592:standards*; D017051:Hospice Care / Q000458:organization & administration / Q000592:standards; D006801:Humans; D008297:Male; D054539:Medication Therapy Management / Q000458:organization & administration*; D008875:Middle Aged; D012944:Social Support; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000592:standards*
Hospices; caregivers; medication therapy management; social support