Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework

• Published in: Palliative medicine Vol. 38; no. 5; pp. 555 - 571
• Main Authors: 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, Murtagh, Fliss EM
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.05.2024; Sage Publications Ltd
• Subjects: Access; Caregivers; Commissioning; Computerized medical records; Confusion; Domiciliary visits; Frame analysis; Health care access; Illnesses; Independent living; Information sharing; Integrated care; Interviews; Medical personnel; Medical records; Medicin och hälsovetenskap; Original; Out of working hours; Palliative care; Patient education; Qualitative research; Telemedicine; Terminal illnesses; Palliative care; out-of-hours; community-based care; qualitative research; telephone advice lines
• ISSN: 0269-2163; 1477-030X; 1477-030X
• DOI: 10.1177/02692163241242329

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.