“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

IntroductionThe 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).MethodsSemi-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.Results25 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.ConclusionThese 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.

A randomised, controlled, feasibility trial of an online, self-guided breathlessness supportive intervention (SELF-BREATHE) for individuals with chronic breathlessness due to advanced disease

“…SELF-BREATHE is a complex, transdiagnostic, supportive digital breathlessness intervention codeveloped with patients following the IDEAS and MRC frameworks [ 19 , 23 ], theoretically underpinned by Leventhal's Common-Sense Model of Self-Regulation [ 24 – 26 ].…”

“…An increase in internet access and digital literacy in people with chronic respiratory disease has been observed in the UK during the COVID-19 pandemic [ 18 ]. Those living with chronic breathlessness due to advanced disease and who have internet access are willing to use online breathlessness self-management interventions, if available [ 19 ].…”

“…SELF-BREATHE is a complex, transdiagnostic, supportive breathlessness digital intervention co-developed with patients following the Integrate, Design, Assess and Share (IDEAS) and Medical Research Council (MRC) frameworks [ 19 , 23 ], theoretically underpinned by Leventhal's Common-Sense Model of Self-Regulation [ 24 – 26 ]. SELF-BREATHE aims to build capacity and resilience within health services to improve the lives of people living with chronic breathlessness using nonpharmacological self-management approaches [ 19 , 23 ].…”

Ageing with Interstitial lung disease: preserving health and well being

“…Screening for loneliness and social isolation can lead to interventions for social and emotional support that are positively associated with improved well being and a reduced risk of premature mortality [139 ▪▪ ]. The COVID-19 pandemic has spurred skills and general confidence in digital communication among the ageing, with online exercise and community classes and remote connectivity to family mitigating the degree or effects of physical isolation [155 ▪▪ ,156,157 ▪▪ ,158 ▪▪ ]. Hybrid options continue to hold promise of inclusivity for people with ILD to engage in health and community-promoting programs such as pulmonary rehabilitation, educational conferences and online Singing for Lung Health [157 ▪▪ ,158 ▪▪ ].…”

“The whole of humanity has lungs, doesn't it? We are not all the same sort of people”: patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE

“…Development of an online breathlessness intervention would address an unmet clinical need, as patients with advanced disease living with chronic breathlessness who have access to the internet are motivated and willing to use online interventions if given the opportunity, skills and confidence to do so [ 18 ]. When attempting to develop an online self-guided breathlessness intervention, inclusion of patients in all aspects of this iterative process is key, as patient choice and preferences influence whether they engage with interventions [ 19 , 20 ].…”