Background Approximately 500,000 carers support relatives and loved ones at the end of life. Around 90% of those with incurable illness spend the majority of the last year of life at home, often with limited support; the prevalence of anxiety and burden for carers increases in the last year of life (Ramirez et al., 1998).
Aims and objectives To raise the profile of carers’ needs; to develop effective carer/staff partnerships; to respect carer experience and expertise; to enable and support carers to remain carers for as long as they wish; to develop services independently and with local partners; to develop a strategy based on service user and staff experience to take forward in meeting the needs of carers in the future.
Design Formation of a hospice steering group; workshops with current and bereaved carers; workshops with clinical and non-clinical hospice staff; thematic coding analysis; presentation and consultation of findings with participants. Development of task and finish groups to take forward recommendations made.
Findings key themes identified include the external image of hospices as places to die; variable knowledge of hospice services in the acute sector, particularly amongst medical staff; transition challenges from cure to palliation; carers’ needs not always acknowledged; the physical and emotional impact of being a carer; the end of life heralds a challenging phase for carers.
Conclusion Carer needs in end-of-life care are not formally assessed and carers can experience physical and emotional problems without intervention. We are working to raise awareness of the hospice role and services available, which include local publicity campaigns, carer assessments and a number of carer-tailored support strategies including practical sessions and advice on emotional and physical wellbeing for carers, and the introduction of a volunteer ‘carer companion’ role to support carers both before and during bereavement.
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