1. Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework.
- Author
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Pask, Sophie, Omoruyi, Allen, Mohamed, Ahmed, Chambers, Rachel L, McFarlane, Phillippa G, Johansson, Therese, Kumar, Rashmi, Woodhead, Andy, Okamoto, Ikumi, Barclay, Stephen, Higginson, Irene J, Sleeman, Katherine E, and Murtagh, Fliss EM
- Subjects
CROSS-sectional method ,HEALTH literacy ,PATIENTS' families ,CRITICALLY ill ,PATIENTS ,QUALITATIVE research ,INDEPENDENT living ,PALLIATIVE treatment ,MEDICAL personnel ,RESEARCH funding ,MEDICAL care ,INTERVIEWING ,MEDICAL record access control ,PATIENT care ,FAMILIES ,JUDGMENT sampling ,CAREGIVERS ,TELEPHONES ,CONCEPTUAL structures ,COMMUNICATION ,RESEARCH methodology ,ADULT education workshops ,COGNITION disorders ,ELECTRONIC health records ,LEGAL status of patients ,PATIENT-professional relations ,SOCIAL support ,QUALITY assurance ,TERMINALLY ill ,HEALTH promotion ,MEDICAL practice ,PATIENT participation ,ACCESS to information - Abstract
Background: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. Design: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. Setting/participants: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. Results: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability : Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion : It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities : Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care : Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning : Sustained funding was often an issue for charitably funded organisations. Conclusions: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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