“There’s no manual for being a carer” A phenomenological study of becoming a carer from home to hospice care

Carers of people with cancer and other life limiting conditions often fail to appreciate the scale of the caring task and frequently do not identify with the label of carer. This is especially true when care takes place in the home and the patient is their spouse. When caring in the home is no longer workable, patients are offered palliative care as an inpatient at a hospice. This juncture in caring has been identified at policy level as a significant life event for carers which impacts on carers in idiosyncratic ways (Duggleby et al, 2010). As they realign themselves to a changed reality, they are faced with negotiating their position in their lived space as well as the new illness setting.

The process of caring and the carers’ task of aligning themselves to a changed reality and renegotiating their place in the two settings has been conceptualised in a variety of ways. Because their experience unfolds in a medical arena, support for carers has been coordinated in line with their response to the patient’s illness. I would prefer to see support for carers that recognises their experience as being separate from that of the patient and which would correspond more closely to the carers’ unfolding experience. This could be achieved by support staff getting to know the distinctive historical and cultural influences that impact on the carer and the patient when they face the distressing impact of moving between care settings at end of life.

Influenced by the work of van Manen (1990), this research utilises interpretive phenomenological analysis (Smith and Eatough 2006) and is supported by template analysis (King and Horrocks 2010) to illuminate salient features of the move into hospice care from home care that were pertinent to seven different carers from two hospices.

This study uncovers the fragile and changeable quality of the carer’s world when adjusting to caring for a family member when from the familiar setting of home to the unknown care surroundings of a hospice.