Caring from home to hospice.

Introduction Caring in the community for a person with a life limiting condition has consequences for the essential structure of the carer’s life. Changes arising from this experience are processed by carers in idiosyncratic ways. Despite being accepted as care recipients in their own right, carers’ experiences are often conceptualised as occurring alongside the illness experience of the patient. This study challenges the notion that the carer’s experience mirrors the patients.
Aim(s) and Method(s) Aims: To explore the lived experiences of informal carers of patients .at home and in the transition to hospice.
Method: Semi-structured interviews with seven bereaved informal carers. All had provided care in the home prior to hospice admission. An interpretive phenomenological approach was used, focusing on the uniqueness of each carer’s account.
Results Carers actively maintained a sense of ‘at homeness’; taking ownership of their environment by setting and maintaining personal boundaries. Working with professionals in their home had the effect of de-medicalizing the illness setting. Nevertheless, interaction between carers and professionals was shaped by the carer’s own level of awareness or avoidance of illness or death related topics.
Conclusion(s) In orienting themselves between the position of care provider and care user, carers described a sliding reality with an ever present awareness of living near to death. The balance between holding on to the familiar and accepting the uncertainty of the unknown influenced how participants adjusted to entering the carer role at home. Carers’ own needs did not simply follow a trajectory defined by the progress of the patient’s illness. 70 words.
In orienting themselves between the position of care provider and care user, carers described a sliding reality with an ever present awareness of living near to death. Vacillating between holding on to the familiar whilst accepting the uncertainty of the unknown, participants adjusted to entering the carer role at home. This challenges current assumptions that the carers experience mirrors the patients.