Exploring the views and experiences of under-represented groups in using digital health to self-manage Parkinson’s and the impact of COVID-19 on access to care

Problem

Digital health is thought to enable people to better manage chronic conditions. However, little is known about how people from under-represented groups with complex chronic conditions use digital health to self-manage their condition. Parkinson’s is a chronic progressive condition, where individuals can experience a range of hard to manage symptoms. Using Parkinson’s as an exemplar complex long-term condition, our aims were to explore in under-represented groups:1. Experiences of people with Parkinson’s and family carers in using digital health to self-manage Parkinson’s2. Expectations from digital healthcare support, and potential adaptations for optimal use3. The impact of the COVID-19 pandemic on access to care.

Approach

Semi-structured interviews (n=32) were conducted remotely with 24 people with Parkinson’s and 12 family carers in 2020-2021. Participants were purposively sampled from under-represented groups: ethnic minority, non-English first language, or significant physical, sensory or cognitive impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Team members with lived experience of a chronic condition, including Parkinson’s, and from an under-represented group contributed throughout, including at conception, study design and interpretation of results.

Findings

Initial findings from our ongoing analysis show people with Parkinson’s and family carers most valued healthy living support, e.g. exercise classes, to improve self-management. Some people used digital health resources, most commonly NHS/Parkinson’s UK websites. Digital literacy appeared to be the biggest barrier to using digital health, regardless of background, often relating to previous occupation and confidence. However, with support, most participants were willing to try a digital support tool. No ethnic minority participant thought race or culture alters self-management and all believed there was no need for digital health interventions to be tailored to an individual’s race or culture, since Parkinson’s can affect anyone and therefore advice should be universal. Most participants had experienced remote consultations due to the pandemic, more often by telephone than video. Telephone and video calls were acceptable during the pandemic as it reduced travel and infection risk. Overall, those who had experience using digital health were more comfortable and prepared to use video to access care during the pandemic. Those with hearing impairment had difficulty accessing telephone consultations. Those with significant physical, sensory and cognitive impairments were heavily reliant on caregiver support for these consultations.

Consequences

Findings will inform the development of digital health interventions for people with complex health conditions, who may have difficulties engaging with technology. Further, we identified important considerations for optimising remote healthcare consultations to be accessible for all. Healthcare Services must ensure technology does not create barriers in these groups.