Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

Abstract Background Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs...

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Autores principales:	Eluned Price, Robyn Lucas, Jo Lane
Formato:	article
Lenguaje:	EN
Publicado:	Wiley 2021
Materias:	healthcare MS multiple sclerosis patient experience qualitative research semistructured interviews Medicine (General) R5-920 Public aspects of medicine RA1-1270
Acceso en línea:	https://doaj.org/article/cc04348402a24ffe8916f5def28c8617
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spelling	oai:doaj.org-article:cc04348402a24ffe8916f5def28c86172021-11-29T13:50:52ZExperiences of healthcare for people living with multiple sclerosis and their healthcare professionals1369-76251369-651310.1111/hex.13348https://doaj.org/article/cc04348402a24ffe8916f5def28c86172021-12-01T00:00:00Zhttps://doi.org/10.1111/hex.13348https://doaj.org/toc/1369-6513https://doaj.org/toc/1369-7625Abstract Background Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in‐depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs. Objective This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved. Methods Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically. Results Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision‐making, understanding roles and expectations, self‐directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. Conclusion Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS. Public Contribution PwMS and HCPs volunteered to be interviewed, and PwMS assisted with the development of interview content and structure.Eluned PriceRobyn LucasJo LaneWileyarticlehealthcareMSmultiple sclerosispatient experiencequalitative researchsemistructured interviewsMedicine (General)R5-920Public aspects of medicineRA1-1270ENHealth Expectations, Vol 24, Iss 6, Pp 2047-2056 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	healthcare MS multiple sclerosis patient experience qualitative research semistructured interviews Medicine (General) R5-920 Public aspects of medicine RA1-1270
spellingShingle	healthcare MS multiple sclerosis patient experience qualitative research semistructured interviews Medicine (General) R5-920 Public aspects of medicine RA1-1270 Eluned Price Robyn Lucas Jo Lane Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
description	Abstract Background Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in‐depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs. Objective This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved. Methods Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically. Results Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision‐making, understanding roles and expectations, self‐directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. Conclusion Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS. Public Contribution PwMS and HCPs volunteered to be interviewed, and PwMS assisted with the development of interview content and structure.
format	article
author	Eluned Price Robyn Lucas Jo Lane
author_facet	Eluned Price Robyn Lucas Jo Lane
author_sort	Eluned Price
title	Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
title_short	Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
title_full	Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
title_fullStr	Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
title_full_unstemmed	Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
title_sort	experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
publisher	Wiley
publishDate	2021
url	https://doaj.org/article/cc04348402a24ffe8916f5def28c8617
work_keys_str_mv	AT elunedprice experiencesofhealthcareforpeoplelivingwithmultiplesclerosisandtheirhealthcareprofessionals AT robynlucas experiencesofhealthcareforpeoplelivingwithmultiplesclerosisandtheirhealthcareprofessionals AT jolane experiencesofhealthcareforpeoplelivingwithmultiplesclerosisandtheirhealthcareprofessionals
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Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

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