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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

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 expl...

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Autores principales: Nimmons, Danielle, Armstrong, Megan, Pigott, Jennifer, Walters, Kate, Schrag, Anette, Ogunleye, Della, Dowridge, Wesley, Read, Joy, Davies, Nathan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9149607/
https://www.ncbi.nlm.nih.gov/pubmed/35651731
http://dx.doi.org/10.1177/20552076221102261
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author Nimmons, Danielle
Armstrong, Megan
Pigott, Jennifer
Walters, Kate
Schrag, Anette
Ogunleye, Della
Dowridge, Wesley
Read, Joy
Davies, Nathan
author_facet Nimmons, Danielle
Armstrong, Megan
Pigott, Jennifer
Walters, Kate
Schrag, Anette
Ogunleye, Della
Dowridge, Wesley
Read, Joy
Davies, Nathan
author_sort Nimmons, Danielle
collection PubMed
description 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.
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spelling pubmed-91496072022-05-31 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 Nimmons, Danielle Armstrong, Megan Pigott, Jennifer Walters, Kate Schrag, Anette Ogunleye, Della Dowridge, Wesley Read, Joy Davies, Nathan Digit Health Original Research 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. SAGE Publications 2022-05-26 /pmc/articles/PMC9149607/ /pubmed/35651731 http://dx.doi.org/10.1177/20552076221102261 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by-nc-nd/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 License (https://creativecommons.org/licenses/by-nc-nd/4.0/) which permits non-commercial use, reproduction and distribution of the work as published without adaptation or alteration, without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Research
Nimmons, Danielle
Armstrong, Megan
Pigott, Jennifer
Walters, Kate
Schrag, Anette
Ogunleye, Della
Dowridge, Wesley
Read, Joy
Davies, Nathan
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
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9149607/
https://www.ncbi.nlm.nih.gov/pubmed/35651731
http://dx.doi.org/10.1177/20552076221102261
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