Lockdown life - experiences of partners of individuals with an acquired brain injury during the COVID-19 pandemic: a qualitative study
Erin M. Beal
A
B Department of Primary Care and Mental Health,
C
Abstract
The present study sought to investigate the experience of individuals living with their partner with an acquired brain injury (ABI) during the first lock down period of the COVID-19 pandemic.
Semi-structured interviews were conducted with seven partners of individuals who had sustained a range of ABIs. Interviews were transcribed verbatim and thematic analysis was carried out by two of the researchers exploring the unique narratives.
ABI occurs within a relational framework, which means that it has repercussions not only for the individual but also the entire family system. COVID-19 prevented family systems (living separately) from coming together which negatively impacted them; however, it also slowed life down, with many people working from home with flexible arrangements in place which participants found to be beneficial. Three main themes emerged from the interview data: partner focus, slowing down and support networks. The narratives identified the struggles of having to continue their partner’s rehabilitation when face to face services could not visit the home, the importance of establishing routine, the positives of a slower paced life (due to COVID-19) that enabled them to build stronger relationships with their partners, and the difficulties of being separated from family and loved ones.
This research suggests that it is imperative to consider individual experiences and choices. Some families benefited from reduced treatment and a slowed pace of life, whilst others may find this overwhelming and burdensome. The study makes recommendations for supporting couples after an ABI during the ongoing pandemic.
Keywords: COVID-19 lock down, thematic analysis, qualitative research, acquired brain injury, partner research.
References
Abrahamson, V., Jensen, J., Springett, K., Sakel, M. (2017) Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study. Disability and Rehabilitation 39(17), 1683-1694.
| Crossref | Google Scholar |
Ackroyd, K., Fortune, D. G., Price, S., Howell, S., Sharrack, B., Isaac, C. L. (2011) Adversarial growth in patients with multiple sclerosis and their partners: relationships with illness perceptions, disability and distress. Journal of Clinical Psychology in Medical Settings 18(4), 372-379.
| Crossref | Google Scholar |
Braine, M. E. (2011) The experience of living with a family member with challenging behavior post acquired brain injury. Journal of Neuroscience Nursing 43(3), 156-164.
| Crossref | Google Scholar |
Braun, V., Clarke, V. (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77-101.
| Crossref | Google Scholar |
Brooks, D. N. (1991) The head-injired family. Journal of Clinical and Experimental Neuropsychology 13(1), 155-188.
| Crossref | Google Scholar |
Brunsden, C., Kiemle, G., Mullin, S. (2017) Male partner experiences of females with an acquired brain injury: an interpretative phenomenological analysis. Neuropsychological Rehabilitation 27(6), 937-958.
| Crossref | Google Scholar |
Buckland, S., Kaminskiy, E., Bright, P. (2020) Individual and family experiences of loss after acquired brain injury: a multi-method investigation. Neuropsychological Rehabilitation 31(4), 531-551.
| Crossref | Google Scholar |
Checklin, M., Fernon, D., Soumilas, J., Stephens, D. (2020) What is it like to have your loved one with a severe brain injury come to rehabilitation? The experiences of significant others. Disability and Rehabilitation 42(6), 788-797.
| Crossref | Google Scholar |
Cheng, H. Y., Chair, S. Y., Chau, J. P. C. (2014) The effectiveness of psychosocial interventions for stroke family caregivers and stroke survivors: a systematic review and meta-analysis. Patient Education and Counseling 95(1), 30-44.
| Crossref | Google Scholar |
Clark, A. M., Lissel, S. L., Davis, C. (2008) Complex critical realism: tenets and application in nursing research. Advances in Nursing Science 31(4), E67-E79.
| Crossref | Google Scholar |
Couchman, G., McMahon, G., Kelly, A., Ponsford, J. (2014) A new kind of normal: qualitative accounts of Multifamily Group Therapy for acquired brain injury. Neuropsychological Rehabilitation 24(6), 809-832.
| Crossref | Google Scholar |
Engström, å., Söderberg, S. (2004) The experiences of partners of critically ill persons in an intensive care unit. Intensive and Critical Care Nursing 20(5), 299-308.
| Crossref | Google Scholar |
Frias, C. E., Garcia-Pascual, M., Montoro, M., Ribas, N., Risco, E., Zabalegui, A. (2020) Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: a systematic review. Journal of Advanced Nursing 76(3), 787-802.
| Crossref | Google Scholar |
Fugard, A. J. B., Potts, H. W. W. (2015) Supporting thinking on sample sizes for thematic analyses: a quantitative tool. International Journal of Social Research Methodology 18(6), 669-684.
| Crossref | Google Scholar |
Grace, J. J., Kinsella, E. L., Muldoon, O. T., Fortune, D. G. (2015) Post-traumatic growth following acquired brain injury: a systematic review and meta-analysis. Frontiers in Psychology 6, 1162).
| Crossref | Google Scholar |
Guest, G., Bunce, A., Johnson, L. (2006) How many interviews are enough?: an experiment with data saturation and variability. Field Methods 18(1), 59-82.
| Crossref | Google Scholar |
Holloway, M., Orr, D., Clark-Wilson, J. (2019) Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Injury 33(4), 401-411.
| Crossref | Google Scholar |
Jackson, D., Turner-Stokes, L., Murray, J., Leese, M., McPherson, K. M. (2009) Acquired brain injury and dementia: a comparison of carer experiences. Brain Injury 23(5), 433-444.
| Crossref | Google Scholar |
Jumisko, E., Lexell, J., Söderberg, S. (2007) Living with moderate or severe traumatic brain injury: the meaning of family members’ experiences. Journal of Family Nursing 13(3), 353-369.
| Crossref | Google Scholar |
Kratz, A. L., Sander, A. M., Brickell, T. A., Lange, R. T., Carlozzi, N. E. (2017) Traumatic brain injury caregivers: a qualitative analysis of spouse and parent perspectives on quality of life. Neuropsychological Rehabilitation 27(1), 16-37.
| Crossref | Google Scholar |
Leathem, J., Heath, E., Woolley, C. (1996) Relatives’ perceptions of role change, social support and stress after traumatic brain injury. Brain Injury 10(1), 27-38.
| Crossref | Google Scholar |
Liang, P., Chan, M. Y., Ibrahim, M. (2022) Caring for a family member with stroke during the COVID-19 pandemic. Archives of Physical Medicine and Rehabilitation 103(12), e159.
| Crossref | Google Scholar |
Lyon, I., Fisher, P., Gracey, F. (2020) Putting a new perspective on life. Disability and Rehabilitation 43(22), 3225-3233.
| Crossref | Google Scholar |
Morse, J. M. (2015) Critical analysis of strategies for determining rigor in qualitative inquiry. Qualitative Health Research 25(9), 1212-1222.
| Crossref | Google Scholar |
Muenchberger, H., Kendall, E., Neal, R. (2008) Identity transition following traumatic brain injury: a dynamic process of contraction, expansion and tentative balance. Brain Injury 22(12), 979-992.
| Crossref | Google Scholar |
National Institute for Health and Care Excellence (UK) (2013). Stroke rehabilitation in adults, In NICE Clinical Guidelines (Issue 12 June), www.nice.org.uk/guidance/cg162,
National Institute for Health and Care Excellence (UK) (2014). Head injury: assessment and early management Clinical guideline. Retrieved from www.nice.org.uk/guidance/cg176,
öhman, M., Söderberg, S. (2004) The experiences of close relatives living with a person with serious chronic illness. Qualitative Health Research 14(3), 396-410.
| Crossref | Google Scholar |
Riley, G. A., Keeble, H. S., Yasmin, N., Hagger, B. F. (2020) Relationship continuity and person-centred care: an exploratory mixed-methods investigation of spousal partners’ responses to the challenging care needs of those with acquired brain injury. Neuropsychological Rehabilitation 30(6), 1169-1189.
| Crossref | Google Scholar |
Sofaer, S. (1999) Qualitative methods: what are they and why use them? Health Services Research 34(5 Pt 2), 1101-1118 http://www.ncbi.nlm.nih.gov/pubmed/10591275.
| Google Scholar |
Tam, S., McKay, A., Sloan, S., Ponsford, J. (2015) The experience of challenging behaviours following severe TBI: a family perspective. Brain Injury 29(7-8), 813-821.
| Crossref | Google Scholar |
Tang, X., Wu, C., Li, X., Song, Y., Yao, X., Wu, X., Lu, J. (2020) On the origin and continuing evolution of SARS-CoV-2. National Science Review 7(6), 1012-1023.
| Crossref | Google Scholar |
Tedeschi, R. G., Calhoun, L. G. (1996) The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. Journal of Traumatic Stress 9(3), 455-471.
| Crossref | Google Scholar |
Tong, A., Sainsbury, P., Craig, J. (2007) Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 19(6), 349-357.
| Crossref | Google Scholar |
Verhaeghe, S., Defloor, T., Van Zuuren, F., Duijnstee, M., Grypdonck, M. (2005) The needs and experiences of family members of adult patients in an intensive care unit: a review of the literature. Journal of Clinical Nursing 14(4), 501-509.
| Crossref | Google Scholar |
World Health Organization, & Mission China Joint (2020) Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19). The WHO-China Joint Mission on Coronavirus Disease 2019(February), 16-24 https://www.who.int/docs/default-source/coronaviruse/who-china-joint-mission-on-covid-19-final-report.pdf.
| Google Scholar |