• Eleanor Wilson, Glenys Caswell, and Kristian Pollock.
• Nottingham Centre for the Advancement of Research in End of Life Care, School of Health Sciences, University of Nottingham Medical School, Queen's Medical Centre, Nottingham, UK.
• Palliat Med. 2021 Dec 1; 35 (10): 194119501941-1950.

BackgroundManaging medications can impose difficulties for patients and families which may intensify towards the end of life. Family caregivers are often assumed to be willing and able to support patients with medications, yet little is known about the challenges they experience or how they cope with these.AimTo explore patient and family caregivers' views of managing medications when someone is seriously ill and dying at home.DesignA qualitative design underpinned by a social constructionist perspective involving interviews with bereaved family caregivers, patients and current family caregivers. A thematic analysis was undertaken.Setting/ParticipantsTwo English counties. Data reported in this paper were generated across two data sets using: (1) Interviews with bereaved family caregivers (n = 21) of patients who had been cared for at home during the last 6 months of life. (2) Interviews (n = 43) included within longitudinal family focused case studies (n = 20) with patients and current family caregivers followed-up over 4 months.ResultsThe 'work of managing medications' was identified as a central theme across the two data sets, with further subthemes of practical, physical, emotional and knowledge-based work. These are discussed by drawing together ideas of illness work, and how the management of medications can substantially add to the burden placed on patients and families.ConclusionsIt is essential to consider the limits of what it is reasonable to ask patients and families to do, especially when fatigued, distressed and under pressure. Focus should be on improving support via greater professional understanding of the work needed to manage medications at home.

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