Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources

As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help man...

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Autores principales:	Sarah-Ann Burger, Alan Poots, Anna Perris, Helen Crump, Helen Thorne, Sally Hughes, Jacob West
Formato:	article
Lenguaje:	EN
Publicado:	The Beryl Institute 2020
Materias:	continuum of care surveys and questionnaires cardiovascular diseases emotions health resources Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/4fab965c2ed34db3881cfd8db531573a
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spelling	oai:doaj.org-article:4fab965c2ed34db3881cfd8db531573a2021-11-15T04:31:27ZLiving with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources2372-0247https://doaj.org/article/4fab965c2ed34db3881cfd8db531573a2020-11-01T00:00:00Zhttps://pxjournal.org/journal/vol7/iss3/11https://doaj.org/toc/2372-0247As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help manage conditions, to inform future service provision. An online questionnaire was sent and advertised to people over 16 years old in the UK self-identifying as affected by CVD (living with CVD, had risk factors, or a carer). There were 13,885 responses. The top five challenges were: feeling down, sad, or depressed; making changes to the way or amount of exercise; anxiety, fear, and uncertainty about the future; having one member of staff to speak to about all aspects of care; and being given information on the side effects of medications. Key challenges were not restricted to a particular condition, indicated by minimal variation between types of CVD. One-quarter of respondents indicated they do not use online resources or digital technologies to help manage their health. The volume and inconsistency of online sources were reported as barriers to using these. The results highlight the psychological and physical consequences of living with CVD. Fragmented care and variable access to information and support further compound these issues. Providing holistic care needs attention; the acknowledgement of psychological needs and access to support, alongside physical challenges is necessary. Stakeholders in healthcare and information technology should work together to ensure online information and support is clear, consistent, and reliable. <strong>Experience Framework</strong> This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Innovation%20%26%20Technology%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-InnovationTechnology">Access other resources</a> related to this lens</li> </ul>Sarah-Ann BurgerAlan PootsAnna PerrisHelen CrumpHelen ThorneSally HughesJacob WestThe Beryl Institutearticlecontinuum of caresurveys and questionnairescardiovascular diseasesemotionshealth resourcesMedicine (General)R5-920Public aspects of medicineRA1-1270ENPatient Experience Journal (2020)
institution	DOAJ
collection	DOAJ
language	EN
topic	continuum of care surveys and questionnaires cardiovascular diseases emotions health resources Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	continuum of care surveys and questionnaires cardiovascular diseases emotions health resources Medicine (General) R5-920 Public aspects of medicine RA1-1270 Sarah-Ann Burger Alan Poots Anna Perris Helen Crump Helen Thorne Sally Hughes Jacob West Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
description	As death rates decrease, people affected by cardiovascular disease (CVD) continue to live with these diseases and the associated challenges, long-term. We aimed to identify the biggest challenges for people affected by CVD in the UK and explore the sources of support and information used to help manage conditions, to inform future service provision. An online questionnaire was sent and advertised to people over 16 years old in the UK self-identifying as affected by CVD (living with CVD, had risk factors, or a carer). There were 13,885 responses. The top five challenges were: feeling down, sad, or depressed; making changes to the way or amount of exercise; anxiety, fear, and uncertainty about the future; having one member of staff to speak to about all aspects of care; and being given information on the side effects of medications. Key challenges were not restricted to a particular condition, indicated by minimal variation between types of CVD. One-quarter of respondents indicated they do not use online resources or digital technologies to help manage their health. The volume and inconsistency of online sources were reported as barriers to using these. The results highlight the psychological and physical consequences of living with CVD. Fragmented care and variable access to information and support further compound these issues. Providing holistic care needs attention; the acknowledgement of psychological needs and access to support, alongside physical challenges is necessary. Stakeholders in healthcare and information technology should work together to ensure online information and support is clear, consistent, and reliable. <strong>Experience Framework</strong> This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (<a href="http://bit.ly/ExperienceFramework">http://bit.ly/ExperienceFramework</a>) <ul> <li><a href="https://www.theberylinstitute.org/page/PXSEARCH#resource-list-all/?view_28_page=1&view_28_filters=%5B%7B%22field%22%3A%22field_38%22%2C%22operator%22%3A%22in%22%2C%22value%22%3A%5B%22PXJ%20Article%22%5D%7D%2C%7B%22field%22%3A%22field_20%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%2C%7B%22field%22%3A%22field_40%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%2C%22Innovation%20%26%20Technology%22%5D%7D%2C%7B%22field%22%3A%22field_41%22%2C%22operator%22%3A%22is%22%2C%22value%22%3A%5B%22%22%5D%7D%5D">Access other PXJ articles</a> related to this lens.</li> <li><a href="https://www.theberylinstitute.org/page/Ecosystem-InnovationTechnology">Access other resources</a> related to this lens</li> </ul>
format	article
author	Sarah-Ann Burger Alan Poots Anna Perris Helen Crump Helen Thorne Sally Hughes Jacob West
author_facet	Sarah-Ann Burger Alan Poots Anna Perris Helen Crump Helen Thorne Sally Hughes Jacob West
author_sort	Sarah-Ann Burger
title	Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
title_short	Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
title_full	Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
title_fullStr	Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
title_full_unstemmed	Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources
title_sort	living with cardiovascular disease (cvd): exploring the biggest challenges for people affected by cvd in the uk, and their use (or not) of online resources
publisher	The Beryl Institute
publishDate	2020
url	https://doaj.org/article/4fab965c2ed34db3881cfd8db531573a
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Living with cardiovascular disease (CVD): Exploring the biggest challenges for people affected by CVD in the UK, and their use (or not) of online resources

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