Older adults value the perspectives of significant others and carers regarding decision-making about cancer treatment. The support provided by carers of older adults with cancer, and carer perspectives on treatment decision-making, requires evaluation.
To describe the roles, experiences, and decision-making preferences of carers of older adults with cancer.
Carers of older adults (≥65y) with cancer at three centres completed an anonymous survey. Carer preferred and perceived role in treatment decision-making was assessed by modified Control Preferences Scale, and carer burden by Zarit Burden Index. Comparison of roles and burden between groups (Culturally and Linguistically Diverse background, gender, and carer age) were made by Chi- or T-tests.
Eighty-four surveys were returned (15 partial responses). Carer characteristics: median age 54y, female (75%), child (51%) and spouse (34%) of care-recipient. Care-recipient characteristics: median age 75y, receiving anti-cancer treatment (88%), diagnosis of haematological (22%), and colorectal (18%) cancer. About half (46%) of care-recipients were CALD. Carers more frequently supported instrumental (42%-76%) over personal activities of daily living (3–12%) and were often involved in communication and information gathering (43%-79%). Carer burden was ‘low’ in 39%, ‘moderate’ in 24%, and ‘high’ in 37%. Most carers (91%) preferred to be present for treatment-related discussions. Preferred role in decision-making was passive in 63%, collaborative in 34%, and active in 3%. Most (72%) played their preferred role. There were no associations between (i) carer burden or (ii) preferred decision-making role and CALD background or gender. Younger carers (<65y) preferred a passive role compared to older carers (71% v 46%, p=0.04). There was no significant difference in preferred decision-making roles between spousal and filial carers (p=0.14).
Carers of older adults with cancer play varied support roles. Carers prefer to be present for discussions about treatment options, though favour playing a passive or collaborative role in treatment decision-making.