Respiratory Self-Care

Abstract

Chronic respiratory conditions (CRCs) are life-long diseases affecting millions of people worldwide. They have a huge impact on individuals' everyday lives, resulting in a number of physical and emotional challenges. Self-management interventions for CRCs are thought to provide empowerment and improve quality of life. However, despite the number of people living with CRCs, most self-management tools in previous HCI work have been designed without the insight of those affected by the conditions. In this paper, we contribute to the literature by investigating the experiences and everyday challenges faced by those with CRCs, through the involvement of 156 participants via interviews and an anonymous survey. Our findings reveal the self-care challenges of CRCs and the reactive management approaches taken by participants. We conclude by providing a set of design implications that support the design of future self-management tools for CRCs. CCS CONCEPTS• Human-centered computing → Human computer interaction (HCI); Interaction design process and methods; User centered design

Am I Coughing More Than Usual?

“…Several patients mentioned not being able to recognize the onset of an exacerbation. Many self-management tools provide data access, and try to help patients identify triggers for exacerbations, but even then there are underpinning behavioral challenges, which inhibit patient reflection [28] (e.g. exhaustion, immobility, anxiety.…”

“…While looking at data does not constitute reflection in Fleck & Fitzpatricks' levels, representations are a prerequisite to support higher reflective levels [10] and taking readings and reflecting emerged as a prominent self-management technique in Tendedez et al's. study on people with chronic respiratory conditions [28]. Interactive visualisations of data can support exploration and gaining insights [5,16] if built with health numeracy and storytelling taken into account [12].…”

“…Previous studies have shown poor self-management among COPD patients, for example that patients did not act on early warning signs [3,15,29]. The telehealth literature provided little insight on how the user interfaces of telehealth systems concretely supported patients in their monitoring efforts, reflecting on their data, and taking appropriate actions [28]. To shape our research into concrete user needs and interaction design of COPD telehealth, we relied on insights from the personal informatics literature.…”

Exploring Human-Data Interaction in Clinical Decision-making Using Scenarios: Co-design Study (Preprint)

“…It causes nonreversible chronic obstruction of the airways, resulting in breathlessness, fatigue, and frequent chest infections [6][7][8]. These symptoms can make it difficult to engage in daily activities, such as leaving home, socializing, and getting dressed [9,10]. Exposure to respiratory infections, physical exertion, smoke inhalation, and environmental factors such as air pollution can worsen symptoms [4,[11][12][13].…”

'The Issue with that sort of Data?'

“…Past work has shown that patients believe that sharing their self-tracking data with their clinicians can help to create personalized self-management plans [1,2] and can help them to seek help when they are struggling to manage [5]. However, for clinicians, many challenges can arise when engaging with patient generated data and patient monitoring technology.…”