Exploring the experiences of people and family carers from under-represented groups in self-managing Parkinson's disease and their use of digital health to do this

Abstract

Introduction Digital health is thought to enable people to better manage chronic conditions, such as Parkinson's. However, little is known about how people from under-represented groups with chronic conditions use digital health to self-manage. Objective The objective of our study was to explore the experiences of people and family carers from under-represented groups in self-managing Parkinson's, including their use of digital health to do this. Methods Semi-structured interviews (n = 18, including four dyadic) were conducted remotely, with 16 people with Parkinson's and six family carers in 2020–2021. Participants were purposively sampled from under-represented groups: belong to an ethnic minority, or having significant physical or sensory impairment. Interviews were audio-recorded, transcribed and analysed using thematic analysis. Results Three main themes of importance were developed: ‘self-management support’, ‘digital health use to support self-management’ and ‘identity, attitudes and characteristics’. Participants received medical, psychological, social and practical self-management support. Some participants used digital health resources, e.g., Parkinson's UK website. Digital literacy was the biggest barrier to using digital health, regardless of background, often dependant on previous occupation and confidence. Few ethnic minority participants thought race or culture alters self-management ability and most believed there was no need for digital health interventions to be tailored to an individual's race or culture. Some felt inclusivity was important in terms of diverse images of people. A range of considerations were identified to optimise digital health, such as assistive equipment for people with sensory impairment. Conclusions Barriers to using digital health for self-management were primarily dependent on personal factors including digital literacy and attitudes but rarely race or culture. We recommend the optimisation of digital health interventions by providing assistive technology at low cost, and visual inclusiveness should be promoted by including images of people from diverse backgrounds.

A qualitative exploration of the barriers and facilitators to self‐managing multiple long‐term conditions amongst people experiencing socioeconomic deprivation

“…Obtaining health‐related information relies on adequate health literacy but as the development of digital health services grows, the skillset required for accessing such services becomes more complex, 32 creating an even greater need for effective strategies of support. The ability to process information and engage in digital services as well as having access to technology are some of the key domains necessary to use digital health resources; a deficit in any area can cause health inequalities 33 . Low digital literacy amongst participants revealed challenges around self‐management due to limited digital skills/education and limited access to digital resources because of financial restrictions.…”

“…The ability to process information and engage in digital services as well as having access to technology are some of the key domains necessary to use digital health resources; a deficit in any area can cause health inequalities. 33 Low digital literacy amongst participants revealed challenges around self‐management due to limited digital skills/education and limited access to digital resources because of financial restrictions. Difficulties (including financial restrictions) in accessing digital/electronic health information intersect with experiences of low health and financial literacy, but also with ethnicity since participants from minority ethnic backgrounds were evidenced as less technologically able to self‐educate or access health apps.…”

“…The ability to process information and engage in digital services as well as having access to technology are some of the key domains necessary to use digital health resources; a deficit in any area can cause health inequalities. 33 35 Access to social capital is also of great importance for utilising healthcare services and supports individuals' capacity to manage their conditions. While access to socioeconomic resources can limit health options, a lack of social capital affects the extent to which individuals and their networks can capture, possess and mobilise social resources while also trying to navigate the structures around them.…”

How can we improve Comprehensive Geriatric Assessment for older people living with frailty in primary care and community settings? A qualitative study

“…Regardless of the complexity and diversity of the needs of older people with frailty, some face inequities in access to interventions which may help to maintain or improve their independence. 3 For example, while telemedicine can beneficial, cost-effective and acceptable to older people, 13 there are concerns about digital exclusion 14 and risks that important signs and symptoms could be missed. 15 Improving the effectiveness and efficiency of CGA 11 requires exploration of how individual components may work and how the overall intervention can be enhanced.…”

Impact of digital technologies on self-efficacy in people with Parkinson’s: a scoping review protocol

“…It has been suggested that an operational definition of self-management is needed as this can heavily influence the records review on such interventions, this might also be true when reviewing self-efficacy interventions due to their shared complexity 21. Earlier reviews which have explored self-management interventions for PwP from qualitative and quantitative perspectives have not examined digital interventions which promote self-efficacy in PwP 4 8 22 23…”