“It’s a waiting game” a qualitative study of the experience of carers of patients who require an alternate level of care

BACKGROUND: Delayed hospital discharge (also known as Alternate Level of Care or ALC) is a global health care quality issue with negative implications for people (e.g., functional decline) and the health care system (e.g., costly interruptions in hospital flow and procedures). ALC disproportionately impacts people with cognitive impairment, and insight into the needs and experiences of this specific sub population and their carers is lacking. The purpose of this study was to understand the hospital experience of carers (e.g., family members) of patients with ALC and cognitive impairment who were waiting for long-term care from the hospital. METHODS: This is a qualitative descriptive study entailing 12 semi-structured interviews with 15 carers of patients with ALC from three hospitals in Northwestern Ontario. Interviews were conducted between October 2015 and February 2016. Two reviewers thematically analyzed the interview data. RESULTS: Five core themes were identified from the interview data: patient over person, uncertain and confusing process, inconsistent quality in care delivery, carers addressing gaps in the system, and personalization of long-term care. CONCLUSIONS: Waiting for long-term care from the hospital is a stressful and uncertain time for family carers. ALC is an ‘in-between’ phase when patients and carers may be at their most vulnerable yet receive the least care from the formal care system. Carers provide critical insight into the needs and behaviors of patients as well as processes that need to be improved to enhance their experience. Such insights will help health systems internationally as they grapple with the issue of ALC whilst trying to optimize engagement with patients and their families. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-017-2272-6) contains supplementary material, which is available to authorized users.