Providing Informal Care in Terminal Illness

Abstract

The trend for terminally ill patients to receive much of their end-of-life care at home necessitates the design of services to facilitate this. Care at home also requires that informal care be provided by family members and friends. This study investigated informal carers' preferences for support services to aid the development of end-of-life health care services. This cross-sectional study used 2 discrete choice experiments to ascertain the preferences of carers supporting patients with different levels of care need, determined by the assistance needed with personal care and labeled High Care (HC) and Low Care (LC). The sample included 168 informal carers of people receiving palliative care at home from 2 palliative care services in Sydney, Australia. Data were collected in face-to-face interviews; carers chose between 2 hypothetical plans of support services and their current services. Data were analyzed with generalized multinomial logit models that were used to calculate the impact of each attribute on the probability of a carer choosing a service plan. Preferred support included nursing services; the probability of choosing a plan increased significantly if it included nurse home visits and phone advice (P < 0.001). HC carers also wanted doctor home visits, home respite, and help with personal care (P < 0.05), and LC carers wanted help with household tasks, transport, and a case coordinator (P < 0.001). On average, both groups of carers preferred their current services, but this varied with characteristics of the carer and the caregiving situation. The most valued services are those that support carers in their caregiving role; however, supportive care preferences vary with the different circumstances of patients and carers.