Department of Aged Care and Rehabilitation, Concord Repatriation General Hospital, Sydney, Australia.
Department of Aged Care and Rehabilitation, Concord Repatriation General Hospital, Sydney, Australia; University of Sydney, Sydney, Australia; Centre for Education and Research on Ageing (CERA), Concord Repatriation General Hospital, Sydney, Australia.
J Geriatr Oncol. 2024 Nov;15(8):102079. doi: 10.1016/j.jgo.2024.102079. Epub 2024 Oct 15.
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.
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.
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.
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.
老年癌症患者重视重要他人及其照顾者对治疗决策的看法。了解照顾者提供的支持以及他们对参与治疗决策的看法，可以帮助我们改善与患者及其支持人员的沟通。我们旨在描述老年癌症患者照顾者的角色、负担和决策偏好。
我们在澳大利亚悉尼的三个中心对老年癌症患者（≥65 岁）的照顾者进行了横断面调查。使用李克特量表评估照顾类型、频率和对提供护理的看法。使用修改后的控制偏好量表评估治疗决策的首选和感知角色，使用 Zarit 负担量表（ZBI-12）评估照顾者负担。通过卡方检验或 t 检验比较不同组（文化和语言多样性背景 [CALD]、性别和照顾者年龄≥65 岁）之间的首选决策角色和照顾者负担。
共纳入 114 份回复调查（23 份部分完成）。照顾者特征：年龄中位数 55 岁（范围 24-90），照顾对象为患者的女性（74%）、子女（49%）和配偶（35%）。患者特征：年龄中位数 75 岁（范围 65-96），接受抗癌治疗（85%），具有 CALD 背景（44%）。照顾者经常参与沟通和信息收集（45%-80%）和支持工具性日常生活活动（IADLs）（43%-81%）多于支持基本日常生活活动（ADLs）（2-13%）。大多数（91%）希望在讨论治疗方案时在场。他们在治疗决策中的首选角色是被动（66%）、协作（30%）和主动（4%），大多数（72%）扮演他们首选的角色。首选角色与照顾者年龄（p=0.01）和 CALD 背景（p=0.04）相关，年龄较小（<65 岁）的照顾者和照顾 CALD 老年患者的照顾者更喜欢更被动的角色。照顾者负担“低”占 29%，“中等”占 31%，“高”占 39%，提供心理支持被评为最具挑战性。
老年癌症患者的照顾者扮演着各种支持角色，特别是在沟通和信息收集方面。照顾者希望在讨论治疗方案时在场，但在治疗决策中倾向于被动角色，维护患者自主权。了解照顾者的沟通偏好是支持患者选择治疗方案和护理方向时的一个重要考虑因素。
