Caregiving in the COVID-19 pandemic: Family adaptations following an intensive care unit hospitalisation

Sheria G Robinson-Lane, Amanda N Leggett, Florence U Johnson, Natalie Leonard, Alicia G Carmichael, Grace Oxford, Tanbirul Miah, Johnny J Wright, Amanda C Blok, Theodore J Iwashyna, Richard Gonzalez, Sheria G Robinson-Lane, Amanda N Leggett, Florence U Johnson, Natalie Leonard, Alicia G Carmichael, Grace Oxford, Tanbirul Miah, Johnny J Wright, Amanda C Blok, Theodore J Iwashyna, Richard Gonzalez

Abstract

Aim and objective: To identify how family caregivers adapt to the caregiving role following a relative's COVID-19-related intensive care unit (ICU) hospitalisation.

Background: Family caregiving is often associated with poor health amongst caregivers which may limit their capacity to effectively support patients. Though severe COVID-19 infection has necessitated increasing numbers of persons who require caregiver support, little is known about these caregivers, the persons they are caring for, or the strategies used to effectively adjust to the caregiving role.

Design: A qualitative descriptive study design was adopted, and findings are reported using COREQ.

Methods: A secondary analysis of transcripts from semi-structured interviews conducted with recently discharged ICU patients who had COVID-19 (n = 16) and their family caregivers (n = 16) was completed using thematic analysis. MAXQDA 2020 and Miro were used to organise data and complete coding. Analysis involved a structured process of open and closed coding to identify and confirm themes that elucidated adaptation to family caregiving.

Results: Six themes highlight how family caregivers adapt to the caregiving role following an ICU COVID-19-related hospitalisation including (1) engaging the support of family and friends, (2) increased responsibilities to accommodate caregiving, (3) managing emotions, (4) managing infection control, (5) addressing patient independence and (6) engaging support services. These themes were found to be congruent with the Roy adaptation model.

Conclusions: Family caregiving is a stressful transition following a patient's acute hospitalisation. Effective adaptation requires flexibility and sufficient support, beginning with the care team who can adequately prepare the family for the anticipated challenges of recovery.

Relevance to clinical practice: Clinical teams may improve post-hospitalisation care outcomes of patients by preparing families to effectively adjust to the caregiver role-particularly in identifying sufficient support resources.

Patient or public contribution: Participation of patients/caregivers in this study was limited to the data provided through participant interviews.

Keywords: caregiver; coronavirus; family; follow-up studies; inpatients; psychological adaptation; qualitative research.

Conflict of interest statement

The authors have no conflict of interest to report.

© 2022 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.

Figures

FIGURE 1
FIGURE 1
Family caregiving within the Roy adaptation model

References

    1. AARP . (2014). State law to help family caregivers. Politics & Society/Advocacy. Support Caregivers.
    1. AARP, & National Alliance for Caregiving . (2020). Caregiving in the U.S.
    1. Administration for Community Living . (2021). Recognize, assist, include, support, & engage (RAISE) family caregivers act: Initial report to congress.
    1. Archer, J. , Reiboldt, W. , Claver, M. , & Fay, J. (2021). Caregiving in quarantine: Evaluating the impact of the COVID‐19 pandemic on adult child informal caregivers of a parent. Gerontology & Geriatric Medicine, 7, 2333721421990150. 10.1177/2333721421990150
    1. Bauer, M. , Fitzgerald, L. , Haesler, E. , & Manfrin, M. (2009). Hospital discharge planning for frail older people and their family. Are we delivering best practice? A review of the evidence. Journal of Clincal Nursing, 18(18), 2539–2546. 10.1111/j.1365-2702.2008.02685.x
    1. Beach, S. R. , Schulz, R. , Donovan, H. , & Rosland, A. M. (2021). Family caregiving during the COVID‐19 pandemic. Gerontologist, 61(5), 650–660. 10.1093/geront/gnab049
    1. BioSocial Methods Collaborative and Heart Research Project Team . (2020). COVID‐19 patient & caregiver collaborative care workbook. Michigan Medicine. 10.3998/2027.42/163715
    1. Braun, V. , & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. 10.1191/1478088706qp063oa
    1. Bull, M. J. , Hansen, H. E. , & Gross, C. R. (2000). Differences in family caregiver outcomes by their level of involvement in discharge planning. Applied Nursing Research, 13(2), 76–82. 10.1016/s0897-1897(00)80004-x
    1. Capistrant, B. D. (2016). Caregiving for older adults and the caregivers' health: An epidemiologic review. Current Epidemiology Reports, 3(1), 72–80. 10.1007/s40471-016-0064-x
    1. Centers for Disease Control and Prevention . (2021a). COVID‐Net Laboratory‐Confirmed COVID‐19 hospitalizations (COVID Data Tracker, Issue). Retrieved January 19, 2022, from
    1. Centers for Disease Control and Prevention . (2021b, September 16). Post‐COVID conditions. U.S. Department of Health & Human Services. Retrieved January 19, 2022, from
    1. Centers for Disease Control and Prevention . (2022). Characteristics of COVID‐19‐associated hospitalizations from the COVID‐NET network. [Data Set]. Department of Health and Human Services, CDC; Retrieved June 9, 2022, from
    1. Chang, H.‐Y. , Chiou, C.‐J. , & Chen, N.‐S. (2010). Impact of mental health and caregiver burden on family caregivers' physical health. Archives of Gerontology and Geriatrics, 50(3), 267–271. 10.1016/j.archger.2009.04.006
    1. Chopra, V. , Flanders, S. A. , O'Malley, M. , Malani, A. , & Prescott, H. C. (2020, November 11). Sixty‐day outcomes among patients hospitalized with COVID‐19. Annals of Internal Medicine, 174, 576–578. 10.7326/M20-5661
    1. Crook, H. , Raza, S. , Nowell, J. , Young, M. , & Edison, P. (2021). Long covid—Mechanisms, risk factors, and management. BMJ, 374, n1648. 10.1136/bmj.n1648
    1. Czekanski, K. (2017). The experience of transitioning to a caregiving role for a family member with Alzheimer's disease or related dementia. The American Journal of Nursing, 117(9), 24–32. 10.1097/01.Naj.0000524517.60352.84
    1. Fox, J. (2022). Experiences of being cared‐for: The perspective of an expert‐by‐experience in mental health. Frontiers in Psychiatry, 13, 824542. 10.3389/fpsyt.2022.824542
    1. Grice, J. (2020). Transitional care involving family caregivers of older adults with complex health conditions (publication number 28154514) [Ph.D., northcentral university]. ProQuest Dissertations & Theses Global. Ann Arbor, MI.
    1. Halpin, S. J. , Mclovor, C. , Whyatt, G. , Adams, A. , Harvey, O. , Mclean, L. , Walshaw, C. , Kemp, S. , Corrado, J. , Singh, R. , Collins, T. , O'Connor, R. J. , & Sivan, M. (2020). Postdischarge symptoms and rehabilitation needs in survivors of COVID‐19 infection: A cross‐sectional evaluation. Journal of Medical Virology, 93(2), 1013–1022. 10.1002/jmv.26368
    1. Hauschildt, K. E. , Seigworth, C. , Kamphuis, L. A. , Hough, C. L. , Moss, M. , McPeake, J. M. , Harrod, M. , Iwashyna, T. J. , & for the Prevention and Early Treatement of Acute Lung Injury (PETAL) Network . (2021). Patients' adaptations after acute respiratory distress syndrome: A qualitative study. American Journal of Critical Care, 30(3), 221–229. 10.4037/ajcc2021825
    1. Jack‐Ide, I. O. , Uys, L. R. , & Middleton, L. E. (2013). Caregiving experiences of families of persons with serious mental health problems in The Niger Delta region of Nigeria. International Journal of Mental Health Nursing, 22(2), 170–179. 10.1111/j.1447-0349.2012.00853.x
    1. Leggett, A. N. , Carmichael, A. , Leonard, N. , Jackson, J. , Kirch, M. , Solway, E. , Kullgren, J. T. , Singer, D. , Malani, P. N. , & Gonzalez, R. (2021). Care challenges due to COVID‐19 and mental health among caregivers of U.S. adults with a chronic or disabling condition. Innovation in Aging, 5(3), igab031. 10.1093/geroni/igab031
    1. Lincoln, Y. , & Guba, E. (1985). Naturalistic inquiry. Sage Publications.
    1. Lloreda, C. L. (2021). COVID‐19 kept families and caregivers out of hospitals. Some doctors think that shouldn't happen again. STAT News.
    1. Mandal, S. , Barnett, J. , Brill, S. E. , Brown, J. S. , Denneny, E. K. , Hare, S. S. , Heightman, M. , Hillman, T. E. , Jacob, J. , Jarvis, H. C. , Lipman, M. C. I. , Naidu, S. B. , Nair, A. , Porter, J. C. , Tomlinson, G. S. , & Hurst, J. R. (2021). ‘Long‐COVID’: A cross‐sectional study of persisting symptoms, biomarker and imaging abnormalities following hospitalisation for COVID‐19. Thorax, 76(4), 396–398. 10.1136/thoraxjnl-2020-215818
    1. Mendez‐Luck, C. A. , Kennedy, D. P. , & Wallace, S. P. (2009). Guardians of health: The dimensions of elder caregiving among women in a Mexico City neighborhood. Social Science & Medicine, 68(2), 228–234. 10.1016/j.socscimed.2008.10.026
    1. Miro . (2020).
    1. Naylor, M. D. , Shaid, E. C. , Carpenter, D. , Gass, B. , Levine, C. , Li, J. , Malley, A. , McCauley, K. , Nguyen, H. Q. , Watson, H. , Brock, J. , Mittman, B. , Jack, B. , Mitchell, S. , Callicoatte, B. , Schall, J. , & Williams, M. V. (2017). Components of comprehensive and effective transitional care. Journal of the American Geriatric Society, 65(6), 1119–1125. 10.1111/jgs.14782
    1. Nightingale, F. (1924). Notes on nursing. Harrison & Sons.
    1. Ogoina, D. , James, H. I. , & Ogoinja, S. Z. (2021). Post‐discharge symptoms among hospitalized COVID‐19 patients in Nigeria: A single‐center study. The American Journal of Tropical Medicine and Hygiene, 105(3), 731–736. 10.4269/ajtmh.21-0509
    1. Parotto, M. , Myatra, S. N. , Munblit, D. , Elhazmi, A. , Ranzani, O. T. , & Herridge, M. S. (2021). Recovery after prolonged ICU treatment in patients with COVID‐19. The Lancet, 9(8), 812–814. 10.1016/S2213-2600(21)00318-0
    1. Parse, R. R. (2001). Qualitative inquiry: The path of sciencing. Jones and Bartlett Publishers.
    1. Picardi, A. , Miniotti, M. , Leombruni, P. , & Gigantesco, A. (2021). A qualitative study regarding COVID‐19 inpatient family caregivers' need for supportive care. Clinical Practice & Epidemiology in Mental Health, 17, 161–169. 10.2174/1745017902117010161
    1. Powers, B. A. D. R. N. P. , & Knapp, T. R. D. E. (2010). Dictionary of nursing theory and research: Fourth Edition. Springer Publishing Company.
    1. Rahimi, T. , Dastyar, N. , & Rafati, F. (2021). Experiences of family caregivers of patients with COVID‐19. BMC Family Practice, 22(137), 1–10. 10.1186/s12875-021-01489-7
    1. Research Center for Group Dynamics . (2021). HEART: Health enhanced by adjusting and recovering together. University of Michigan. Retrieved October 4, 2022, from
    1. Robinson‐Lane, S. G. , Sutton, N. R. , Chubb, H. , Yeow, R. Y. , Mazzara, N. , DeMarco, K. , Kim, T. , & Chopra, V. (2021). Race, ethnicity, and 60‐day outcomes after hospitalization with COVID‐19. Journal of the American Medical Directors Association, 22, 2245–2250. 10.1016/j.jamda.2021.08.023
    1. Robinson‐Lane, S. G. , Zhang, X. , & Patel, A. (2021). Coping and adaptation to dementia family caregiving: A pilot study. Geriatric Nursing, 42(1), 256–261. 10.1016/j.gerinurse.2020.08.008
    1. Roth, A. , Chan, P. S. , & Jonas, W. (2021). Addressing the long COVID crisis: Integrative health and long COVID. Global Advances in Health and Medicine, 10, 21649561211056597. 10.1177/2164956121105659
    1. Roth, A. R. (2020). Informal caregiving and social capital: A social network perspective. Research on Aging, 42(9–10), 272–280. 10.1177/0164027520912659
    1. Roy, C. (2008). The Roy adaptation model (3rd ed.). Pearson.
    1. Schulz, R. , Beach, S. R. , Czaja, S. J. , Martire, L. M. , & Monin, J. K. (2020). Family caregiving for older adults. Annual Review of Psychology, 71(1), 635–659. 10.1146/annurev-psych-010419-050754
    1. Schulz, R. , & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. The American Journal of Nursing, 108(9 Suppl), 23–27. 10.1097/01.NAJ.0000336406.45248.4c
    1. Slatyer, S. , Aoun, S. M. , Hill, K. D. , Walsh, D. , Whitty, D. , & Toye, C. (2019). Caregivers' experiences of a home support program after the hospital discharge of an older family member: A qualitative analysis. BMC Health Services Research, 19(1), 220. 10.1186/s12913-019-4042-0
    1. Snyder, C. M. , Fauth, E. , Wanzek, J. , Piercy, K. W. , Norton, M. C. , Corcoran, C. , Rabins, P. V. , Lyketsos, C. G. , & Tschanz, J. T. (2015). Dementia caregivers' coping strategies and their relationship to health and well‐being: The Cache County study. Aging & Mental Health, 19(5), 390–399. 10.1080/13607863.2014.939610
    1. 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. 10.1093/intqhc/mzm042
    1. Tschanz, J. T. , Piercy, K. , Corcoran, C. D. , Fauth, E. , Norton, M. C. , Rabins, P. V. , Tschanz, B. T. , Deberard, M. S. , Snyder, C. , Smith, C. , Lee, L. , & Lyketsos, C. G. (2013). Caregiver coping strategies predict cognitive and functional decline in dementia: The Cache County dementia progression study. The American Journal of Geriatric Psychiatry, 21(1), 57–66. 10.1016/j.jagp.2012.10.005
    1. Vaismoradi, M. , Turunen, H. , & Bondas, T. (2013). Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nursing & Health Science, 15(3), 398–405. 10.1111/nhs.12048
    1. VERBI Software . (2019). MAXQDA 2020. VERBI Software.
    1. World Health Organization . (2022, September 19). World Coronavirus (COVID‐19) Dashboard. World Health Organization. Retrieved September 19, 2022, from
    1. Zwar, L. , König, H.‐H. , & Hajek, A. (2020). Psychosocial consequences of transitioning into informal caregiving in male and female caregivers: Findings from a population‐based panel study. Social Science & Medicine, 264, 113281. 10.1016/j.socscimed.2020.113281

Source: PubMed

Sponsorzy i współpracownicy

Warunki medyczne

Interwencje lekowe

3
Subskrybuj