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

Sophie Pask; Allen Omoruyi; Ahmed Mohamed; Rachel L. Chambers; Phillippa G. McFarlane; Therese Johansson; Rashmi Kumar; Andy Woodhead; Ikumi Okamoto; Stephen Barclay; Irene J. Higginson; Katherine E. Sleeman; Fliss E.M. Murtagh

doi:10.1177/02692163241242329

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

Sophie Pask^*, Allen Omoruyi, Ahmed Mohamed, Rachel L. Chambers, Phillippa G. McFarlane, Therese Johansson, Rashmi Kumar, Andy Woodhead, Ikumi Okamoto, Stephen Barclay, Irene J. Higginson, Katherine E. Sleeman, Fliss E.M. Murtagh

^*Corresponding author for this work

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Research output: Contribution to journal › Article › peer-review

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.

Original language	English
Pages (from-to)	555-571
Number of pages	17
Journal	Palliative Medicine
Volume	38
Issue number	5
Early online date	10 Apr 2024
DOIs	https://doi.org/10.1177/02692163241242329
Publication status	Published - May 2024

Keywords

community-based care
out-of-hours
Palliative care
qualitative research
telephone advice lines

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1177/02692163241242329

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Pask, S., Omoruyi, A., Mohamed, A., Chambers, R. L., McFarlane, P. G., Johansson, T., Kumar, R., Woodhead, A., Okamoto, I., Barclay, S., Higginson, I. J., Sleeman, K. E., & Murtagh, F. E. M. (2024). Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework. Palliative Medicine, 38(5), 555-571. https://doi.org/10.1177/02692163241242329

@article{68fa75fa45fa46499f6a29b1adef0ca9,

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

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.",

keywords = "community-based care, out-of-hours, Palliative care, qualitative research, telephone advice lines",

author = "Sophie Pask and Allen Omoruyi and Ahmed Mohamed and Chambers, {Rachel L.} and McFarlane, {Phillippa G.} and Therese Johansson and Rashmi Kumar and Andy Woodhead and Ikumi Okamoto and Stephen Barclay and Higginson, {Irene J.} and Sleeman, {Katherine E.} and Murtagh, {Fliss E.M.}",

note = "Publisher Copyright: {\textcopyright} The Author(s) 2024.",

year = "2024",

month = may,

doi = "10.1177/02692163241242329",

language = "English",

volume = "38",

pages = "555--571",

journal = "Palliative Medicine",

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Pask, S, Omoruyi, A, Mohamed, A, Chambers, RL, McFarlane, PG, Johansson, T, Kumar, R, Woodhead, A, Okamoto, I, Barclay, S, Higginson, IJ , Sleeman, KE & Murtagh, FEM 2024, 'Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework', Palliative Medicine, vol. 38, no. 5, pp. 555-571. https://doi.org/10.1177/02692163241242329

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.

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

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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 -

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

Abstract

Keywords

UN SDGs

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