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

TY - JOUR

T1 - Telephone advice lines for adults with advanced illness and their family carers

T2 - a qualitative analysis and novel practical framework

AU - Pask, Sophie

AU - Omoruyi, Allen

AU - Mohamed, Ahmed

AU - Chambers, Rachel L.

AU - McFarlane, Phillippa G.

AU - Johansson, Therese

AU - Kumar, Rashmi

AU - Woodhead, Andy

AU - Okamoto, Ikumi

AU - Barclay, Stephen

AU - Higginson, Irene J.

AU - Sleeman, Katherine E.

AU - Murtagh, Fliss E.M.

N1 - Publisher Copyright: © The Author(s) 2024.

PY - 2024/5

Y1 - 2024/5

N2 - 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.

AB - 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.

KW - community-based care

KW - out-of-hours

KW - Palliative care

KW - qualitative research

KW - telephone advice lines

UR - https://www.scopus.com/pages/publications/85190435832

U2 - 10.1177/02692163241242329

DO - 10.1177/02692163241242329

M3 - Article

C2 - 38600058

AN - SCOPUS:85190435832

SN - 0269-2163

VL - 38

SP - 555

EP - 571

JO - Palliative Medicine

JF - Palliative Medicine

IS - 5

ER -