"Ring us if you need us": The importance of reassurance to family caregivers providing home-based end-of-life care

This research explores the experience of uncertainty and reassurance from the perspective of family carers. The research draws upon Mishel’s theory of uncertainty in illness. Aim(s) and Method(s) Aim: to explore the phenomenological experience of providing end of life care for a family member with a life-limiting illness, at home. Fifty-one narrative interviews were conducted with bereaved family carers. Data was managed using NVivo 9 software and analysed using thematic structural analysis (Robichaux 2003; Riessman 2008). Uncertainty emerged as a key feature of the caregiving experience. Many carers explained they were told to ‘ring us if you need us’ by district nurses, Macmillan nurses and other community health care professionals. Many carers were aware of the work load of explained their reluctance to pick up the phone for fear of ‘bothering’ them regarding non-emergency issues. Carers expressed a wish for more contact (telephone or face-to face) from health care professionals. Carers’ experience of uncertainty may be considerably reduced through contact with health and social care professionals at the end of life. In addition to clinical care, health care professionals play and important role in providing practical and emotional support to both patients and carers at the end of life, but may be unaware of the import role that their support plays in reassuring family caregivers and improving their confidence in caring.