UNLABELLED: Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored. METHOD: Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital. RESULTS: Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were placed on the treating team. Psychosocial support was valued. Communication: Timing, honest and clear discussions were important. Engagement with palliative care service: Increased palliative care. Unmet needs: The emotional burden of caring for dying patients/families and balancing hope against death was a challenge. CONCLUSIONS: Opportunities exist to improve care.
UNLABELLED: Palliative care is not well understood in CF. Unmet needs of patients with CF, their families and staff were explored. METHOD: Focus groups and interviews with forty-two participants (12 patients, 10 family members and 20 staff) were conducted at a university teaching hospital. RESULTS: Thematic analysis identified six themes. Knowledge: Patients and families felt their knowledge of palliative care was limited. Psychological frame: Hope and a positive psychological frame was essential to coping, however, this was a hindrance to the acquisition of information. Denial as a coping strategy resulted in a lack of preparation for declining health. Treating team: High expectations were placed on the treating team. Psychosocial support was valued. Communication: Timing, honest and clear discussions were important. Engagement with palliative care service: Increased palliative care. Unmet needs: The emotional burden of caring for dying patients/families and balancing hope against death was a challenge. CONCLUSIONS: Opportunities exist to improve care.
Authors: Mara R Hobler; Ruth A Engelberg; J Randall Curtis; Kathleen J Ramos; Miriam I Zander; Shacole S Howard; Christopher H Goss; Moira L Aitken Journal: J Palliat Med Date: 2018-01-03 Impact factor: 2.947
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