Caring for the person with variant Creutzfeldt-Jakob disease within the hospice service

• Main Author: de Vries, Kay
• Published: University of Surrey 2006
• Subjects: 362.19685
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.430005

This thesis explores the experience of caring for people with the new diseases of variant Creutzfeldt-Jakob disease (CJD) by hospice services. The experiences of the hospice staff and carers of five people, who had died, or were dying, as a result of variant CJD, at three different hospice sites in the South of England were explored. Data from four focus groups and 11 interviews, with hospice staff (included health care assistants, nurses, doctors and social workers) and family members, plus hospice patient records were analysed. Media material was also examined and used to inform the study. The thesis offers a theoretical explanation of these experiences developed through grounded theory methodology using an emergent fit design. It describes the event of the admission into the hospice service of a person with a new disease, that of variant CJD, and how the dying experience of these people was managed by both in-house and community hospice teams, 'Open systems' theory is used to assist in analysis and interpretation of the participant experiences, and as a means of 'contextualising' the hospice service. The hospice is presented as a metaphorical container within which dying is processed, and where the primary task of the organisation had a different emphasis and focus, depending on individual perspectives of participants. A theory of 'dealing with the unknown' was developed to explain the impact of this new disease on system equilibrium. The disease was a novelty and influenced admissions into the service and responses to the disease by others. It engendered the need for staff to use controlling practices to maintain the system balance. There were paradoxes between the practices of in-house and community teams, and between in- house and family member 'understanding' of how care was managed. The experience of caring for people with variant CJD was also profoundly humbling for participants. Humility was identified as a response to the realisation of limitations in relieving the suffering of people with variant CJD and their families. The study demonstrated change over time, where hospice staff moved from not knowing to becoming knowledgeable about managing the care of the person with variant CJD. The theory is complimented by and builds on existing theories of hospice practice.