Video diaries by people living with COPD: A novel method to explore lived experience and create representative educational content

Background: Chronic Obstructive Pulmonary Disease (COPD) symptoms include breathlessness, cough, fatigue and anxiety. Understanding how symptoms impact daily living and self-management is often captured by researcher-led interviews and focus groups. Aim: To explore lived experiences of people with COPD using a novel self-recorded video diary technique whilst generating content for IPCRG patient education materials www.ipcrg.org/copdmagazine. Method: 15 participants living with COPD [age 67-88] were recruited by the IPCRG network in four countries (Netherlands, USA, England and Portugal). Seven Participants completed 14 self-recorded consecutive daily videos based on specified topics. Data were analysed using the visual-verbal video analysis model (VVVA). Adapted from multimodal, ethnographic and visual grounded theory, to analyse the verbal (spoken) data, alongside visual and multimodal characteristics providing additional insights into emotions and transmission of messages. Results: Three superordinate themes included lifestyle, healthcare and mental health, offering representative strategies and advice for others with COPD. However, the participants’ digital use and engagement dominated all themes making their experiences of living with COPD and comorbidities, more manageable from shopping online and communicating with health professionals to accessing social support and advocacy opportunities. Considering the transmission of emotions, participants displayed happiness; excitement using technology; sadness, melancholy for activities and occupations they could no longer undertake due to COPD. Conclusion: These findings offer new insight into the complexities of, and opportunities for, self-management living with COPD in a digital era, whilst providing educational content representative of people with COPD. The effectiveness of performing daily activities, well-being and managing symptoms were supported by engaging with digital and health technologies. The digital competence of participants was an unexpected finding, compared with literature showing inconsistencies and problems with digital interaction. Findings suggest that exploring digital preferences and competencies and offering support with digital engagement, may help ease the physical and mental health burden of COPD.