I don't know what to do or where to go". Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: a qualitative study in Bradford, UK.

Sarah Baz; Chao Fang; JD Carpentieri; Laura Sheard

doi:10.1111/hex.13687

I don't know what to do or where to go". Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: a qualitative study in Bradford, UK.

Sarah Baz, Chao Fang, JD Carpentieri , Laura Sheard

Research output: Contribution to journal › Article › peer-review

38 Citations (SciVal)

Abstract

Background: In October 2022 it was estimated 2.3 million people in the UK have self-reported Long 9 Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC.

Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC.

Design and participation: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis.

Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorised the healthcare access experiences of participants into five main types: 1) being unable to access primary care 2) accessing primary care but receiving (perceived) inadequate support 3) extreme persistence 4) alternatives to mainstream healthcare 5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macro structural issues further exacerbated by the pandemic.

Conclusion: To better support people with LC the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to GP access are required; especially as GPs are the first line of support for people living with LC.

Patient and public involvement: A PPI group is engaged at regular intervals in the project.

Original language	English
Journal	Health Expectations
DOIs	https://doi.org/10.1111/hex.13687
Publication status	Published - 13 Dec 2022

Funding

The authors would like to thank the Born in Bradford cohort, researchers at Bradford Institute for Health Research who supported the study and recruitment process (particularly Dagmar Waiblinger, Zenam Bi and Shahid Islam), the PPI group at the University of West England and Andy Gibson, John Kellas and Sophie Taysom who facilitated PPI workshops. A special thank you to all of the participants who took part in this study and shared their experiences. Characterization, determinants, mechanisms and consequences of the long‐term effects of COVID‐19: providing the evidence base for healthcare services (CONVALESCENCE) was funded by NIHR (COV‐LT‐0009). This research team is working on the Qualitative component of the work package, reported here are findings from the Bradford sample of a nationally representative longitudinal qualitative study.

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10.1111/hex.13687Licence: CC BY

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title = "I don't know what to do or where to go{"}. Experiences of accessing healthcare support from the perspectives of people living with Long Covid and healthcare professionals: a qualitative study in Bradford, UK.",

abstract = "Background: In October 2022 it was estimated 2.3 million people in the UK have self-reported Long 9 Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC.Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and participation: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis.Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorised the healthcare access experiences of participants into five main types: 1) being unable to access primary care 2) accessing primary care but receiving (perceived) inadequate support 3) extreme persistence 4) alternatives to mainstream healthcare 5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macro structural issues further exacerbated by the pandemic.Conclusion: To better support people with LC the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to GP access are required; especially as GPs are the first line of support for people living with LC.Patient and public involvement: A PPI group is engaged at regular intervals in the project.",

author = "Sarah Baz and Chao Fang and JD Carpentieri and Laura Sheard",

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doi = "10.1111/hex.13687",

language = "English",

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AU - Carpentieri , JD

AU - Sheard, Laura

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N2 - Background: In October 2022 it was estimated 2.3 million people in the UK have self-reported Long 9 Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC.Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and participation: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis.Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorised the healthcare access experiences of participants into five main types: 1) being unable to access primary care 2) accessing primary care but receiving (perceived) inadequate support 3) extreme persistence 4) alternatives to mainstream healthcare 5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macro structural issues further exacerbated by the pandemic.Conclusion: To better support people with LC the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to GP access are required; especially as GPs are the first line of support for people living with LC.Patient and public involvement: A PPI group is engaged at regular intervals in the project.

AB - Background: In October 2022 it was estimated 2.3 million people in the UK have self-reported Long 9 Covid (LC). Many people have reported not receiving adequate healthcare support. There is a lack of research which provides an in-depth exploration of the barriers faced by people with LC in accessing healthcare support. It is important to understand these barriers to provide better support, care and advice for those experiencing LC.Objective: To understand the barriers faced in accessing primary, secondary and specialist healthcare support for people with LC. Design and participation: 40 interviews were conducted with people living with LC in Bradford alongside 12 interviews with healthcare professionals (HCPs) providing LC support in Bradford healthcare settings. Interviews were analysed using reflexive thematic analysis.Results: People living with LC had a large degree of difficulty in accessing healthcare services for LC support. We categorised the healthcare access experiences of participants into five main types: 1) being unable to access primary care 2) accessing primary care but receiving (perceived) inadequate support 3) extreme persistence 4) alternatives to mainstream healthcare 5) positive experiences. There was a severe lack of access to specialist LC services. Ethnic minority participants faced a further barrier of mistrust and fear of services deterring them from accessing support. HCPs discussed systemic barriers to delivering services. Experiences were embedded in macro structural issues further exacerbated by the pandemic.Conclusion: To better support people with LC the barriers faced in accessing healthcare support must be addressed. Of significance, improvements to GP access are required; especially as GPs are the first line of support for people living with LC.Patient and public involvement: A PPI group is engaged at regular intervals in the project.

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