Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

ABSTRACT:

Background

At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality.

Methods

Mortality follow-back postal survey.

Setting

Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco).

Participants

Informal carers (ICrs) of decedents who had received palliative care.

Data

ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG).

Analysis

All costs (formal, informal) were calculated by multiplying repo

SUBMITTER: Higginson IJ 

PROVIDER: S-EPMC7606031 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature