Empowerment-Based Physical Activity Intervention for People with Advanced Dry Age-Related Macular Degeneration: Mixed-Methods Protocol

Abstract

Age-related macular degeneration (AMD) is the most common cause of incurable visual impairment and impacts daily life. These impacts include loss of social activities, decreased functional independence, and reduced physical activity. This protocol aims to describe a prospective, mixed-methodology for studying a population with AMD before, during, and after an empowerment-based physical activity intervention (EPI). A study framework was also developed for EPI. The intervention will include 20 older individuals (age 65+ years) with AMD recruited in Sweden. The intervention period is six months and comprises adapted physical activity and social activities in a group twice a week and individual health coaching on three occasions. The quantitative pre-test and three follow-ups include physical functional tests, an accelerometer that monitors physical activity continuously for one week, and questionnaires. Individual and focus-group interviews and ethnographic observations will explore the experience of living with AMD and what it means to participate in the EPI for individuals with AMD. The chosen methodology offers a structured way for researchers to explore the experiences and factors that may provide insights into the potential of creative supervised, adapted physical activity in groups, health coaching, and socialising that are significant to enable well-being among older individuals with AMD.

Perpetuating ability to live life as usual: a grounded theory study of persons living with age-related macular degeneration

“…The sample included nine women and three men aged 65–87 with advanced dry AMD and a median age of 81 years. The informants were contacted by phone by the first author (JK) with an invitation to participate in the project including the individual interviews taking place before the intervention [ 24 ] and informed that participation is voluntary and can be interrupted without explanation and without affecting the participants’ continued care. Participants also received information about personal data management according to General Data Protection Regulation (GDPR), namely how the participants’ confidentiality would be ensured, how the data would be managed, and that no one outside the research group would have access to the data.…”

“…This study is the Swedish part of a cross-border collaboration between Sweden and Denmark called “Can you see the future.” The project took place within a community in the southwest of Sweden with about 100 000 inhabitants [ 24 ]. It was designed to achieve a sustainable community that obtains health and well-being despite vision loss caused by advanced dry AMD.…”