Exploring the role of digital technologies for social connectedness, outcomes and experiences with the chronic obstructive pulmonary disease (COPD) community: A transformative mixed methods research study
Date
2021-10-04
Authors
Antonio, Marcy
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Abstract
Prior to the coronavirus disease-2019 (COVID-19) pandemic people with chronic obstructive pulmonary disease (COPD) were already experiencing social isolation due to the complex intersection of symptoms, and perceptions towards the illness. COPD is a chronic lung illness characterized by progressive shortness of breath, and decreasing lung function, with influenza and other respiratory illnesses more likely to have fatal consequences for this population. Societal beliefs and assumptions around behavioural risk factors, and in particular smoking, contribute to perceptions that COPD diagnosis, outcomes and experiences are self-inflicted and an individual responsibility. This is a perspective that fails to take into the account the complex contextual factors of the social determinants of health, where structural inequities result in higher smoking rates among populations with lower socioeconomic status. Further, these underlying societal values may compound the isolation experienced with COPD in which ongoing stigma towards the illness discourages people from identifying with a COPD diagnosis. The lack of identity may discourage developing a community where people can share experiences and strategies in living with COPD, and form a collective group that can advocate for change.
Digital technologies (DTs), such as Facebook and Zoom offer new avenues to support social connectedness. However, little focus has been given on how people with COPD may (or may not) be using DTs to support their illness. This study explored the role DTs could serve in addressing social connectedness and experiences and outcomes for the COPD community. The study was informed by Mertens (2003, 2007) transformative approach where the knowledge of people living with COPD was prioritized in finding out what DTs they may be using to maintain social connectedness and to support their illness. The three stage mixed methods research design consisted of interviews, patient-reported outcome measures, patient-reported experience measures and a DT survey. Bazeley's (2018) approach was used to guide the integrative mixed analysis on data collected across the three stages.
The overall findings were:
1) Participants’ experiences in living with COPD had uniquely prepared them for the COVID-19 pandemic, and it was the community that lacked capacity;
2) Dominant discourse around technology may be creating further harms to the COPD population that extend beyond the digital world;
3) Current digital health monitoring strategies for other chronic illnesses do not fully translate to the interests and needs for people living with COPD;
4) People living with COPD are using DTs, but prefer to keep their virtual world separate from their illness world; and
5) Considerations for DTs for COPD should move beyond managing outcomes, and include supporting experiences of living.
Conducted between December 2018 and July 2020, and concurrent with the COVID-19 pandemic, the study demonstrated even greater importance with the onset of the
pandemic in understanding how DTs may support social connectedness for people living with life-limiting chronic lung conditions.
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Keywords
chronic obstructive pulmonary disease (COPD), digital technologies, health equity, transformative mixed methods research, patient oriented research