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CARING FROM HOME TO HOSPICE
  1. A Dunsmore-Dawson,
  2. N King and
  3. A Rodriguez
  1. University of Huddersfield, UK

    Abstract

    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) 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. Vacillating between holding on to the familiar whilst accepting the uncertainty of the unknown, participants adjusted to entering into the carer role at home. This challenges current assumptions that the carers experience mirrors that of the patients.

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