“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic

Charles C. Reilly; Katherine Bristowe; Anna Roach; Matthew Maddocks; Irene J. Higginson

doi:10.1183/23120541.00557-2021

“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic

Charles C. Reilly^*, Katherine Bristowe, Anna Roach, Matthew Maddocks, Irene J. Higginson

^*Corresponding author for this work

Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

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

5 Citations (Scopus)

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Abstract

Introduction The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). Methods Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47–86) years and Medical Research Council dyspnoea score 3 (2–5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. Conclusion These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.

Original language	English
Article number	00557-2021
Journal	ERJ Open Research
Volume	8
Issue number	1
Early online date	21 Feb 2022
DOIs	https://doi.org/10.1183/23120541.00557-2021
Publication status	E-pub ahead of print - 21 Feb 2022

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You can do it_REILLY_Publishedonline21Feb2022_GOLD VoR (CC BY NC)Final published version, 450 KBLicence: CC BY-NC

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Reilly, C. C., Bristowe, K., Roach, A., Maddocks, M., & Higginson, I. J. (2022). “You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic. ERJ Open Research, 8(1), Article 00557-2021. Advance online publication. https://doi.org/10.1183/23120541.00557-2021

@article{fb4aa18b90e3465aacb0f8c8d06edb93,

title = "“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic",

abstract = "Introduction The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). Methods Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47–86) years and Medical Research Council dyspnoea score 3 (2–5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. Conclusion These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.",

author = "Reilly, {Charles C.} and Katherine Bristowe and Anna Roach and Matthew Maddocks and Higginson, {Irene J.}",

note = "Funding Information: Conflict of interest: An NIHR Clinical Lectureship (ICA-CL-2018-04-ST2-001) supports C.C. Reilly, which funds all aspects of this research. In addition, and unrelated to the present research, they declare funding to their institution from “King{\textquoteright}s Together: Multi and Interdisciplinary research scheme” (GBP 19 000) and from Royal Brompton Hospital–King{\textquoteright}s Health Partnership Transformation (GBP 75000). K. Bristowe declares research grants to their institution from the National Institute for Health Research, Medical Research Council, Health Education England, European Commission and Marie Curie, in the 36 months prior to manuscript submission. A. Roach declares no competing interests. M. Maddocks declares a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017–10-009), and an infrastructure grant from the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King{\textquoteright}s College Hospital NHS Foundation Trust, in the 36 months prior to manuscript submission. I.J. Higginson declares research grants from the National Institute for Health Research, UK Research & Innovation, Cicely Saunders International and Marie Curie, in the 36 months prior to manuscript submission. Funding Information: Support statement: A National Institute for Health Research (NIHR) Clinical Lectureship (ICA-CL-2018–04-ST2–001) supports C.C. Reilly. M. Maddocks is supported by an NIHR Career Development Fellowship (CDF-2017–10– 009). M. Maddocks and I.J. Higginson are supported by the NIHR Applied Research Collaboration South London. This publication presents independent research funded by the NIHR. The views expressed in this publication are those of the authors, and not necessarily those of the National Health Service, NIHR or the Dept of Health and Social Care. Funding information for this article has been deposited with the Crossref Funder Registry. Publisher Copyright: {\textcopyright} 2022, European Respiratory Society. All rights reserved.",

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language = "English",

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Reilly, CC , Bristowe, K, Roach, A, Maddocks, M & Higginson, IJ 2022, '“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic', ERJ Open Research, vol. 8, no. 1, 00557-2021. https://doi.org/10.1183/23120541.00557-2021

“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic. / Reilly, Charles C.; Bristowe, Katherine; Roach, Anna et al.
In: ERJ Open Research, Vol. 8, No. 1, 00557-2021, 21.02.2022.

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

TY - JOUR

T1 - “You can do it yourself and you can do it at your convenience”

T2 - internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic

AU - Reilly, Charles C.

AU - Bristowe, Katherine

AU - Roach, Anna

AU - Maddocks, Matthew

AU - Higginson, Irene J.

N1 - Funding Information: Conflict of interest: An NIHR Clinical Lectureship (ICA-CL-2018-04-ST2-001) supports C.C. Reilly, which funds all aspects of this research. In addition, and unrelated to the present research, they declare funding to their institution from “King’s Together: Multi and Interdisciplinary research scheme” (GBP 19 000) and from Royal Brompton Hospital–King’s Health Partnership Transformation (GBP 75000). K. Bristowe declares research grants to their institution from the National Institute for Health Research, Medical Research Council, Health Education England, European Commission and Marie Curie, in the 36 months prior to manuscript submission. A. Roach declares no competing interests. M. Maddocks declares a National Institute for Health Research (NIHR) Career Development Fellowship (CDF-2017–10-009), and an infrastructure grant from the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust, in the 36 months prior to manuscript submission. I.J. Higginson declares research grants from the National Institute for Health Research, UK Research & Innovation, Cicely Saunders International and Marie Curie, in the 36 months prior to manuscript submission. Funding Information: Support statement: A National Institute for Health Research (NIHR) Clinical Lectureship (ICA-CL-2018–04-ST2–001) supports C.C. Reilly. M. Maddocks is supported by an NIHR Career Development Fellowship (CDF-2017–10– 009). M. Maddocks and I.J. Higginson are supported by the NIHR Applied Research Collaboration South London. This publication presents independent research funded by the NIHR. The views expressed in this publication are those of the authors, and not necessarily those of the National Health Service, NIHR or the Dept of Health and Social Care. Funding information for this article has been deposited with the Crossref Funder Registry. Publisher Copyright: © 2022, European Respiratory Society. All rights reserved.

PY - 2022/2/21

Y1 - 2022/2/21

N2 - Introduction The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). Methods Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47–86) years and Medical Research Council dyspnoea score 3 (2–5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. Conclusion These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.

AB - Introduction The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). Methods Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47–86) years and Medical Research Council dyspnoea score 3 (2–5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. Conclusion These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.

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DO - 10.1183/23120541.00557-2021

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Reilly CC , Bristowe K, Roach A, Maddocks M , Higginson IJ. “You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic. ERJ Open Research. 2022 Feb 21;8(1):00557-2021. Epub 2022 Feb 21. doi: 10.1183/23120541.00557-2021

“You can do it yourself and you can do it at your convenience”: internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic

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