Living with cystic fibrosis during the COVID-19 pandemic: a social connectedness perspective

Abstract

Purpose This study explores the concept of social connectedness for adults with Cystic Fibrosis (CF), generally and during the onset of the COVID-19 pandemic, to help inform contemporary CF healthcare. Social connectedness is an essential component of belonging and refers to an individual’s sense of closeness with the social world. Unique disease factors make exploration of social connectedness pertinent, added to by COVID-19, with the CF population potentially facing increased risk for severe illness. Methods Seventeen adults with CF in Western Australia undertook interviews, with findings categorized as overarching themes. Results In a general sense, participants described social connectedness challenges caused by CF, despite which they reported meaningful connections that benefits their mental and physical health. Within a COVID-19 specific context, participants demonstrated resilience in the face of adversity, highlighted the importance of empathy in relation to the pandemic, and described how social support is both an outcome and enhancer of social connectedness. Conclusions This study contributes to limited social connectedness literature within CF and chronic illness in general, highlighting the importance of social connectedness awareness raising, assessments and interventions in CF healthcare inside and outside the COVID-19 pandemic.

“What Are the Applications for Remote Rehabilitation Management in Cystic Fibrosis?”: A Scoping Review Protocol

“…The pandemic has substantially increased the use of tools for remote monitoring for these patients: of 74 titles recovered in PubMed (Dec 2020) with the term “cystic fibrosis” and “telemedicine or telehealth”, 30% of them were published in 2020 [ 9 ]; most of the US and the UK CF clinics, therefore, went completely virtual, implementing systems to support remote care [ 10 , 11 ]. There is also growing acceptance among patients that they can be followed remotely during rehabilitation [ 12 ]. Despite this growing interest in the subject, the last systematic revision about this topic dates back to 2012 and it concluded that there is insufficient evidence to reach a firm conclusion about the benefits of telehealth in people with CF [ 13 ].…”