Journal Articles

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    Family caregivers' sense-making of the results of functional neurodiagnostics for patients with Prolonged Disorders of Consciousness.
    (Taylor and Francis Group, 2024-01-17) Cruse D; Ragazinskaite K; Chinner A; Bareham C; Roberts N; Banner R; Chennu S; Villa D
    Functional neuroimaging and electrophysiological assessments can identify evidence of residual consciousness and cognition in patients with prolonged disorders of consciousness (PDOC) who are otherwise behaviourally unresponsive. These functional neurodiagnostics are increasingly available in clinical settings and are recommended by international clinical guidelines to reduce diagnostic and prognostic uncertainty, and thereby assist family caregivers in their best-interests decision-making. Nevertheless, little is known about how family caregivers make sense of the results of these state-of-the-art functional neurodiagnostics. By applying Interpretative Phenomenological Analysis (IPA) to interviews with family caregivers of patients with diagnoses of PDOC who had received a functional neurodiagnostic assessment, we identify three primary themes of sense-making: The special significance of "brain scans"; A dynamic sense-making process; Holding on to hope and holding on to the person. These themes highlight the challenges of helping family caregivers to balance the relative importance of functional neurodiagnostic results with other clinical assessments and identify an ability of family caregivers to hold a contradiction in which they hope for recovery but simultaneously express a rational understanding of evidence to the contrary. We offer several recommendations for the ways in which family caregivers can be better supported to make sense of the results of functional neurodiagnostics.
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    Single cases from multiple perspectives: a qualitative study comparing the experiences of patients, patients’ caregivers, surgeons, and nurses when bad news is delivered about cancer
    (Wolters Kluwer Health Inc, 2020-10) Matthews T; Baken D; Ross K
    Background: Qualitative literature on the experiences of those delivering and receiving bad news about cancer has revealed what these parties consider important during the process across many different patient cases. The current study aims to add to this understanding by employing a “linked case" study design to directly compare the perspectives of patients, their caregivers, and health care professionals (HCPs) involved in a series of single-patient cases of breaking bad news. Method: Semistructured interviews were conducted with 13 participants (5 patients, 4 caregivers, 2 surgeons, and 2 nurses) who formed 5 linked cases. Interviews were analyzed using interpretative phenomenological analysis and directly compared within each linked case. Results: Analyses identified 2 main superordinate themes. The first labeled “accurately perceiving and responding to needs," included HCPs recognizing and responding to patients’ and caregivers’ individual emotional and informational needs. The second labeled “carers fulfilling necessary roles," identified the various roles HCPs and patients’ caregivers took to satisfactorily meet patients’ needs. Conclusions: The findings suggest the importance of HCPs accurately perceiving and responding to patients’ and caregivers’ various needs and caregivers ability and willingness to fulfilling support roles in a way that aligns with their own resources and patients’ needs. This highlights the value of HCPs developing and applying interpersonal skills within bad news encounters, working as a team, and exploring caregivers’ resources for patient support.