Support roles, carer burden, and decision-making preferences of carers of older adults with cancer

Abstract

Introduction

Older adults with cancer value the perspectives of significant others and their carers regarding decision-making about treatment. Understanding the support provided by carers, and their perspectives on involvement in treatment decision-making, can help us improve our communication with patients and their supports. We aimed to describe the roles, burden, and decision-making preferences of carers of older adults with cancer.

Materials and Methods

We performed a cross-sectional survey of carers of older adults (≥65y) with cancer at three centres in Sydney, Australia. Type, frequency, and perspectives on providing care were evaluated using Likert scales. Preferred and perceived role in treatment decision-making by modified Control Preferences Scale, and carer burden by Zarit Burden Index (ZBI-12), were evaluated. Preferred role in decision-making and carer burden were compared between groups (culturally and linguistically diverse backgrounds [CALD], sex, and carer age ≥ 65) by chi-squared or t-tests.

Results

One-hundred and fourteen returned surveys were included (23 partially completed). Carer characteristics: median age 55y (range 24–90), female (74 %), child (49 %) and spouse (35 %) of the care-recipient. Care-recipient characteristics: median age 75y (range 65–96), receiving anti-cancer treatment (85 %), and CALD background (44 %). Carers were frequently involved in communication and information gathering (45 % -80 %) and supported instrumental activities of daily living (IADLs) (43 % - 81 %) more frequently than basic activities of daily living (ADLs) (2–13 %). Most (91 %) preferred to be present when treatment options were discussed. Their preferred role in treatment decision-making was passive in 66 %, collaborative in 30 %, and active in 4 %, with most (72 %) playing their preferred role. The preferred role was associated with carer age (p = 0.01) and CALD background (p = 0.04), with younger (<65y) carers and those caring for CALD older adults preferring a more passive role. Carer burden was ‘low’ in 29 %, ‘moderate’ in 31 %, and ‘high’ in 39 %, and providing psychological support was rated most challenging.

Discussion

Carers of older adults with cancer play varied support roles, particularly in communication and information gathering. Carers prefer to be present for discussions about treatment options, though favour a passive role in treatment decision-making, upholding patient autonomy. Understanding the communication preferences of carers is an important consideration when supporting the patient in deciding treatment options and direction of care.