Life after lockdown: loneliness, exclusion and the impact of hidden disability

Chloe Bradbury; Abbey Fletcher; Stephen Dunne

doi:10.1071/IB23111

RESEARCH ARTICLE (Open Access)

Previous Contents Vol 25(3)

Life after lockdown: loneliness, exclusion and the impact of hidden disability

Chloe Bradbury

^A , Abbey Fletcher

^B and Stephen Dunne

^A ^*

+ Author Affiliations

- Author Affiliations

^A Department of Psychology, Faculty of Health and Life Sciences, Northumbria University, Newcastle upon Tyne, UK.

^B School of Psychology, University of Sunderland, Sunderland, UK.

^* Correspondence to: stephen.dunne@northumbria.ac.uk

Handling Editor: Jennifer Fleming

Brain Impairment 25, IB23111 https://doi.org/10.1071/IB23111

Submitted: 6 October 2023 Accepted: 14 May 2024 Published: 14 June 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution 4.0 International License (CC BY).

Abstract

Background

Stroke survivors are a population at increased risk of experiencing loneliness, thus exploring the effect of lockdown measures on stroke survivors is of paramount importance. We explored the personal experiences of loneliness among stroke survivors during lockdown in the COVID-19 pandemic and the lessons that can be learned from these experiences.

Methods

Seventeen stroke survivors from across the United Kingdom (10 females, 7 males; 45–83 years old; M_age = 63.47) participated in semi-structured interviews. Reflexive thematic analysis was employed in the interpretation of the data.

Results

Three overarching themes were constructed: (1) hidden struggles, isolated lives; (2) divergent experiences and adaptations; and (3) rebuilding after lockdown. These themes explore survivors’ experiences of loneliness generally after stroke and how this loneliness was assuaged with online video conferencing and other technological solutions. They also chronicle how these feelings changed during lockdown and survivors’ feelings regarding society returning to ‘normal’ and the associated apprehension and anxiety this brings.

Conclusions

We recommend a focus on improving understanding of the challenges faced after stroke to reduce stigma, increase empathy and promote inclusive attitudes within society, alongside better pandemic preparedness through engagement with hybrid support solutions.

Keywords: COVID-19, hidden disability, loneliness, qualitative methods, social integration, social isolation, stroke, thematic analysis.

References

Alzueta E, Perrin P, Baker FC, Caffarra S, Ramos‐Usuga D, Yuksel D, Arango‐Lasprilla JC (2021) How the COVID‐19 pandemic has changed our lives: a study of psychological correlates across 59 countries. Journal of Clinical Psychology 77, 556-570.
| Crossref | Google Scholar | PubMed |

Bietzk E, Davies R, Floyd A, Lindsay A, Greenstone H, Symonds A, Greenfield S (2012) FAST enough? The UK general public’s understanding of stroke. Clinical Medicine 12, 410-415.
| Crossref | Google Scholar | PubMed |

Braun V, Clarke V (2021) One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology 18, 328-352.
| Crossref | Google Scholar |

Braun V, Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3, 77-101.
| Crossref | Google Scholar |

Bu F, Steptoe A, Fancourt D (2020) Who is lonely in lockdown? Cross-cohort analyses of predictors of loneliness before and during the COVID-19 pandemic. Public Health 186, 31-34.
| Crossref | Google Scholar | PubMed |

Coetzer R, Bichard H (2020) The challenges and opportunities of delivering clinical neuropsychology services during the Covid-19 crisis of 2020. Panamerican Journal of Neuropsychology 14(1), 29-34.
| Google Scholar |

Dawson DL, Golijani-Moghaddam N (2020) COVID-19: psychological flexibility, coping, mental health, and wellbeing in the UK during the pandemic. Journal of Contextual Behavioral Science 17, 126-134.
| Crossref | Google Scholar | PubMed |

De Silva DA, Tan IF, Thilarajah S (2020) A protocol for acute stroke unit care during the COVID-19 pandemic. Journal of Stroke and Cerebrovascular Diseases 29, 105009.
| Crossref | Google Scholar | PubMed |

Dunne S, Close H, Richards N, Ellison A, Lane AR (2020) Maximizing Telerehabilitation for Patients With Visual Loss After Stroke: Interview and Focus Group Study With Stroke Survivors, Carers, and Occupational Therapists. Journal of Medical Internet Research 22, e19604.
| Crossref | Google Scholar | PubMed |

Dunne S, Fletcher A, Bradbury C (2024) Life after lockdown: loneliness, exclusion, and the impact of hidden disability. Available at http://doi.org/10.17605/OSF.IO/MYFH4

Earnshaw VA, Quinn DM (2012) The Impact of Stigma in Healthcare on People Living with Chronic Illnesses. Journal of Health Psychology 17, 157-168.
| Crossref | Google Scholar | PubMed |

Falkenberg HK, Mathisen TS, Ormstad H, Eilertsen G (2020) “Invisible” visual impairments. A qualitative study of stroke survivors’ experience of vision symptoms, health services and impact of visual impairments. BMC Health Services Research 20, 302.
| Crossref | Google Scholar | PubMed |

Ford A, Douglas J, O’Halloran R (2022) The experience of close personal relationships after stroke: scoping review and thematic analysis of qualitative literature. Brain Impairment 23, 231-261.
| Crossref | Google Scholar |

Hammel J, Magasi S, Heinemann A, Gray DB, Stark S, Kisala P, Carlozzi NE, Tulsky D, Garcia SF, Hahn EA (2015) Environmental Barriers and Supports to Everyday Participation: A Qualitative Insider Perspective From People With Disabilities. Archives of Physical Medicine and Rehabilitation 96, 578-588.
| Crossref | Google Scholar | PubMed |

Hawkley LC, Hughes ME, Waite LJ, Masi CM, Thisted RA, Cacioppo JT (2008) From Social Structural Factors to Perceptions of Relationship Quality and Loneliness: The Chicago Health, Aging, and Social Relations Study. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 63, S375-S384.
| Crossref | Google Scholar | PubMed |

Hendry G, Wilson C, Orr M, Scullion R (2022) “I Just Stay in the House So I Don’t Need to Explain”: A Qualitative Investigation of Persons with Invisible Disabilities. Disabilities 2, 145-163.
| Crossref | Google Scholar |

Jefferson LJ, Dunne S (2023) ‘They think we’re just in God’s waiting room’: a discursive study on identity aloneness in stroke survivors. Available at osf.io/preprints/psyarxiv/pfvx9

Jia R, Ayling K, Chalder T, Massey A, Broadbent E, Coupland C, Vedhara K (2020) Mental health in the UK during the COVID-19 pandemic: cross-sectional analyses from a community cohort study. BMJ Open 10, e040620.
| Crossref | Google Scholar | PubMed |

Lowe N, Crawley L, Wilson C, Waldron B (2021) ‘Lonely in my head’: the experiences of loneliness in individuals with brain injury. British Journal of Health Psychology 26, 444-463.
| Crossref | Google Scholar | PubMed |

Maguire R, Hanly P, Maguire P (2021) Living well with chronic illness: how social support, loneliness and psychological appraisals relate to well-being in a population-based European sample. Journal of Health Psychology 26, 1494-1507.
| Crossref | Google Scholar | PubMed |

Morin D, Rivard M, Crocker AG, Boursier CP, Caron J (2013) Public attitudes towards intellectual disability: a multidimensional perspective. Journal of Intellectual Disability Research 57, 279-292.
| Crossref | Google Scholar | PubMed |

Mosher CE, Lepore SJ, Wu L, Austin J, Valdimarsdottir H, Rowley S, Isola L, Redd WH, Rini C (2012) Social correlates of distress following hematopoietic stem cell transplantation: exploring the role of loneliness and cognitive processing. Journal of Health Psychology 17, 1022-1032.
| Crossref | Google Scholar | PubMed |

Norlander A, Carlstedt E, Jönsson A-C, Lexell EM, Ståhl A, Lindgren A, Iwarsson S (2016) Long-Term Predictors of Social and Leisure Activity 10 Years after Stroke. PLoS One 11, e0149395.
| Crossref | Google Scholar | PubMed |

Northcott S, Hilari K (2011) Why do people lose their friends after a stroke?: friendship loss post stroke. International Journal of Language & Communication Disorders 46, 524-534 PMISD: 21899670.
| Crossref | Google Scholar |

O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA (2014) Standards for Reporting Qualitative Research: A Synthesis of Recommendations. Academic Medicine 89, 1245-1251.
| Crossref | Google Scholar | PubMed |

Poyade M, Morris G, Taylor I, Portela V (2017) Using mobile virtual reality to empower people with hidden disabilities to overcome their barriers. In ‘Proceedings of the 19th ACM International Conference on Multimodal Interaction’. pp. 504–505. (ACM: Glasgow UK) 10.1145/3136755.3143025

Rokach A, Lechcier-Kimel R, Safarov A (2006) Loneliness of people with physical disabilities. Social Behavior and Personality: An International Journal 34(6), 681-700.
| Crossref | Google Scholar |

Rowe F, VIS Group UK (2013) Symptoms of stroke-related visual impairment. Strabismus 21, 150-154.
| Crossref | Google Scholar | PubMed |

Salter K, Hellings C, Foley N, Teasell R (2008) The experience of living with stroke: a qualitative meta-synthesis. Journal of Rehabilitation Medicine 40, 595-602.
| Crossref | Google Scholar | PubMed |

Santuzzi AM, Waltz PR, Finkelstein LM, Rupp DE (2014) Invisible Disabilities: Unique Challenges for Employees and Organizations. Industrial and Organizational Psychology 7, 204-219.
| Crossref | Google Scholar |

Verdonschot MML, De Witte LP, Reichrath E, Buntinx WHE, Curfs LMG (2009) Impact of environmental factors on community participation of persons with an intellectual disability: a systematic review. Journal of Intellectual Disability Research 53, 54-64.
| Crossref | Google Scholar | PubMed |

Walsh RS, Muldoon OT, Gallagher S, Fortune DG (2015) Affiliative and “self-as-doer” identities: relationships between social identity, social support, and emotional status amongst survivors of acquired brain injury (ABI). Neuropsychological Rehabilitation 25, 555-573.
| Crossref | Google Scholar | PubMed |

Yang K, Armstrong N, Diamond C, Lane AR, Dunne S (2022) The meaning of loneliness to stroke survivors: a qualitative study in Northeast England. Journal of Health Psychology 27, 2539-2548.
| Crossref | Google Scholar | PubMed |