Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings

Richard Harding; José Miguel Carrasco; Jordi Serrano-Pons; Jeannine Lemaire; Eve Namisango; Emmanuel Luyirika; Terrymize Immanuel; Anil Kumar Paleri; Lulu Mathews; Dickson Chifambe; Lovemore Mupaza; Cristina Lasmarías Martínez; Ludoviko Zirimenya; Marie-Charlotte Bouësseau; Eric L. Krakauer

doi:10.1016/j.jpainsymman.2020.09.045

Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings

Richard Harding, José Miguel Carrasco, Jordi Serrano-Pons, Jeannine Lemaire, Eve Namisango, Emmanuel Luyirika, Terrymize Immanuel, Anil Kumar Paleri, Lulu Mathews, Dickson Chifambe, Lovemore Mupaza, Cristina Lasmarías Martínez, Ludoviko Zirimenya, Marie-Charlotte Bouësseau, Eric L. Krakauer

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

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

20 Citations (Scopus)

Abstract

Context Mobile health (mhealth) provides an opportunity to utilise internet coverage in low and middle income countries (LMICs) to improve palliative care access and quality. Objectives This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods A co-design process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N=149 caregivers participated and uploaded n=837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n=355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) A need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion An outcomes-focused app and data dashboard are acceptable to caregivers and health care professionals. They are beneficial in identifying, monitoring and communicating patient outcomes, and in allocating staff resource to those most in need.

Original language	English
Journal	Journal of Pain and Symptom Management
Early online date	24 Nov 2020
DOIs	https://doi.org/10.1016/j.jpainsymman.2020.09.045
Publication status	E-pub ahead of print - 24 Nov 2020

Keywords

Mobile health
palliative care
global health
low income country
community health worker

UN SDGs

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

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10.1016/j.jpainsymman.2020.09.045

http://www.sciencedirect.com/science/article/pii/S0885392420308939

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Harding, R., Carrasco, J. M., Serrano-Pons, J., Lemaire, J., Namisango, E., Luyirika, E., Immanuel, T., Paleri, A. K., Mathews, L., Chifambe, D., Mupaza, L., Martínez, C. L., Zirimenya, L., Bouësseau, M.-C., & Krakauer, E. L. (2020). Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings. Journal of Pain and Symptom Management. Advance online publication. https://doi.org/10.1016/j.jpainsymman.2020.09.045

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title = "Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings",

abstract = "Context Mobile health (mhealth) provides an opportunity to utilise internet coverage in low and middle income countries (LMICs) to improve palliative care access and quality. Objectives This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods A co-design process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N=149 caregivers participated and uploaded n=837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n=355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) A need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion An outcomes-focused app and data dashboard are acceptable to caregivers and health care professionals. They are beneficial in identifying, monitoring and communicating patient outcomes, and in allocating staff resource to those most in need.",

keywords = "Mobile health, palliative care, global health, low income country, community health worker",

author = "Richard Harding and Carrasco, {Jos{\'e} Miguel} and Jordi Serrano-Pons and Jeannine Lemaire and Eve Namisango and Emmanuel Luyirika and Terrymize Immanuel and Paleri, {Anil Kumar} and Lulu Mathews and Dickson Chifambe and Lovemore Mupaza and Mart{\'i}nez, {Cristina Lasmar{\'i}as} and Ludoviko Zirimenya and Marie-Charlotte Bou{\"e}sseau and Krakauer, {Eric L.}",

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Harding, R, Carrasco, JM, Serrano-Pons, J, Lemaire, J, Namisango, E, Luyirika, E, Immanuel, T, Paleri, AK, Mathews, L, Chifambe, D, Mupaza, L, Martínez, CL, Zirimenya, L, Bouësseau, M-C & Krakauer, EL 2020, 'Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings', Journal of Pain and Symptom Management. https://doi.org/10.1016/j.jpainsymman.2020.09.045

TY - JOUR

T1 - Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings

AU - Harding, Richard

AU - Carrasco, José Miguel

AU - Serrano-Pons, Jordi

AU - Lemaire, Jeannine

AU - Namisango, Eve

AU - Luyirika, Emmanuel

AU - Immanuel, Terrymize

AU - Paleri, Anil Kumar

AU - Mathews, Lulu

AU - Chifambe, Dickson

AU - Mupaza, Lovemore

AU - Martínez, Cristina Lasmarías

AU - Zirimenya, Ludoviko

AU - Bouësseau, Marie-Charlotte

AU - Krakauer, Eric L.

PY - 2020/11/24

Y1 - 2020/11/24

N2 - Context Mobile health (mhealth) provides an opportunity to utilise internet coverage in low and middle income countries (LMICs) to improve palliative care access and quality. Objectives This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods A co-design process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N=149 caregivers participated and uploaded n=837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n=355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) A need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion An outcomes-focused app and data dashboard are acceptable to caregivers and health care professionals. They are beneficial in identifying, monitoring and communicating patient outcomes, and in allocating staff resource to those most in need.

AB - Context Mobile health (mhealth) provides an opportunity to utilise internet coverage in low and middle income countries (LMICs) to improve palliative care access and quality. Objectives This study aimed to design a mobile phone application (app) to enable or improve communication between family caregivers, community caregivers, and palliative care teams; to evaluate its acceptability, processes, and mechanisms of action; and to propose refinements. Methods A co-design process entailed collaboration between a Project Advisory Group and collaborators in India, Uganda and Zimbabwe. We then trained community and family caregivers to use an app to communicate patient-reported outcomes to their palliative care providers each week on a data dashboard. App activity was monitored, and qualitative in-depth interviews explored experience with the app and its mechanisms and impact. Results N=149 caregivers participated and uploaded n=837 assessments of patient-reported outcomes. These data were displayed to the palliative care team on an outcomes dashboard on n=355 occasions. Qualitative data identified: 1) high acceptability and data usage; 2) improved understanding by team members of patient symptoms and concerns; 3) A need for better feedback to caregivers, for better prioritisation of patients according to need, for enhanced training and support to use the app, and for user-led recommendations for ongoing improvement. Conclusion An outcomes-focused app and data dashboard are acceptable to caregivers and health care professionals. They are beneficial in identifying, monitoring and communicating patient outcomes, and in allocating staff resource to those most in need.

KW - Mobile health

KW - palliative care

KW - global health

KW - low income country

KW - community health worker

U2 - 10.1016/j.jpainsymman.2020.09.045

DO - 10.1016/j.jpainsymman.2020.09.045

M3 - Article

SN - 0885-3924

JO - Journal of Pain and Symptom Management

JF - Journal of Pain and Symptom Management

ER -

Design and evaluation of a novel mobile phone application to improve palliative home-care in resource-limited settings

Abstract

Keywords

UN SDGs

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