‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Authors: Portch, E., Moseley, R.L., Wignall, L., Turner-Cobb, J.M., Taylor, Z. and Gondelle, M.

Journal: Psychology and Health

Volume: 39

Issue: 12

Pages: 1727-1744

eISSN: 1476-8321

ISSN: 0887-0446

DOI: 10.1080/08870446.2023.2220009

Abstract:

Objectives: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society. Methods and Measures: Thirty semi-structured interviews were conducted in pwME/CFS between June–July, 2020. Responses were qualitatively analysed using an experiential, thematic framework. Results: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population’s limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample. Conclusions: Our findings suggest that future work may fruitfully examine whether our participant’s predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

https://eprints.bournemouth.ac.uk/39685/

Source: Scopus

'Welcome to my world': a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown.

Authors: Portch, E., Moseley, R.L., Wignall, L., Turner-Cobb, J.M., Taylor, Z. and Gondelle, M.

Journal: Psychol Health

Volume: 39

Issue: 12

Pages: 1727-1744

eISSN: 1476-8321

DOI: 10.1080/08870446.2023.2220009

Abstract:

OBJECTIVES: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society. METHODS AND MEASURES: Thirty semi-structured interviews were conducted in pwME/CFS between June - July, 2020. Responses were qualitatively analysed using an experiential, thematic framework. RESULTS: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population's limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample. CONCLUSIONS: Our findings suggest that future work may fruitfully examine whether our participant's predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

https://eprints.bournemouth.ac.uk/39685/

Source: PubMed

'Welcome to my world': a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Authors: Portch, E., Moseley, R.L., Wignall, L., Turner-Cobb, J.M., Taylor, Z. and Gondelle, M.

Journal: PSYCHOLOGY & HEALTH

Volume: 39

Issue: 12

Pages: 1727-1744

eISSN: 1476-8321

ISSN: 0887-0446

DOI: 10.1080/08870446.2023.2220009

https://eprints.bournemouth.ac.uk/39685/

Source: Web of Science (Lite)

‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Authors: Portch, E., Moseley, R., Wignall, L., Turner-Cobb, J., Taylor, Z. and Gondelle, M.

Journal: Psychology & Health

DOI: 10.1080/08870446.2023.2220009

Abstract:

Objectives We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society.

Methods and Measures Thirty semi-structured interviews were conducted in pwME/CFS between June – July, 2020. Responses were qualitatively analysed using an experiential, thematic framework.

Results While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population’s limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample.

Conclusions Our findings suggest that future work may fruitfully examine whether our participants' predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

https://eprints.bournemouth.ac.uk/39685/

Source: Manual

'Welcome to my world': a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown.

Authors: Portch, E., Moseley, R.L., Wignall, L., Turner-Cobb, J.M., Taylor, Z. and Gondelle, M.

Journal: Psychology & health

Volume: 39

Issue: 12

Pages: 1727-1744

eISSN: 1476-8321

ISSN: 0887-0446

DOI: 10.1080/08870446.2023.2220009

Abstract:

Objectives

We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society.

Methods and measures

Thirty semi-structured interviews were conducted in pwME/CFS between June - July, 2020. Responses were qualitatively analysed using an experiential, thematic framework.

Results

While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population's limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample.

Conclusions

Our findings suggest that future work may fruitfully examine whether our participant's predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

https://eprints.bournemouth.ac.uk/39685/

Source: Europe PubMed Central

‘Welcome to my world’: a thematic analysis of the lived experiences of people with Myalgic Encephalomyelitis during the UK COVID-19 lockdown

Authors: Portch, E., Moseley, R.L., Wignall, L., Turner-Cobb, J.M., Taylor, Z. and Gondelle, M.

Journal: Psychology and Health

Issue: May

Pages: 1-18

ISSN: 0887-0446

Abstract:

Objectives: We explore the experiences of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (pwME/CFS) during the first UK COVID-19 lockdown period. We specifically probe perceived commonalities and departures in experience between government- and health-imposed lockdowns, application of coping strategies for social isolation, and predictions for inclusion of the chronically ill in post-pandemic society. Methods and Measures: Thirty semi-structured interviews were conducted in pwME/CFS between June–July, 2020. Responses were qualitatively analysed using an experiential, thematic framework. Results: While participants reported enhancements in digital accessibility during lockdown, they perceived this as an unintentional benefit from changes designed to cater universally. Similarly, their expectation was that the general population’s limited experience of restriction would not engender greater understanding for those who would continue to experience health-imposed lockdowns, post-pandemic. Participants described numerous strategies for coping with restriction and isolation, developed during prior health-imposed lockdowns and applied to this novel circumstance, highlighting the presence of acceptance and resilience in the sample. Conclusions: Our findings suggest that future work may fruitfully examine whether our participant’s predictions for post-pandemic societal inclusion have been met, and how resilience and acceptance might be developed and nurtured in chronically ill populations through times of adversity.

https://eprints.bournemouth.ac.uk/39685/

Source: BURO EPrints