342
Views
1
CrossRef citations to date
0
Altmetric
Reviews

Being a caregiver of a relative with a prolonged disorder of consciousness living at home: A scoping review

ORCID Icon & ORCID Icon
Pages 718-744 | Received 07 Oct 2021, Accepted 09 Feb 2022, Published online: 23 Feb 2022

References

  • Andrews, K. (1996). International working party on the management of the vegetative state: Summary report. Brain Injury, 10(11), 797–806. https://doi.org/10.1080/026990596123918
  • Andrews, K. (1999). The vegetative state− clinical diagnosis.
  • Barczyk, D., & Kredler, M. (2019). Long-term care across Europe and the United States: The role of informal and formal care. Fiscal Studies, 40(3), 329–373. https://doi.org/10.1111/1475-5890.12200
  • Bender, A., Jox, R. J., Grill, E., Straube, A., & Lulé, D. (2015). Persistent vegetative state and minimally conscious state: A systematic review and meta-analysis of diagnostic procedures. Deutsches Ärzteblatt International, 112(14), 235. https://doi.org/10.3238/arztebl.2015.0235
  • Berrol, S. (1986). Considerations for management of the persistent vegetative state. Archives of Physical Medicine and Rehabilitation, 67(5), 283–285. https://doi.org/10.1001/jama.1986.03380200124041
  • Boissel, A., Leblond, F., Pinel-Jacquemin, S., Petit, P., Tasseau, F., & Vérin, É. (2021). Les proches aidants des personnes en état de conscience altérée: ruptures et continuité dans les relations. L’Évolution Psychiatrique, 86(1), 25–46. [English version: Caregivers of people with disorders of consciousness: relationship continuity and rupture (Online April 2022)]. https://doi.org/10.1016/j.evopsy.2020.10.009
  • Campbell, A. (1984). Children in a persistent vegetative state. British medical journal (Clinical research ed.), 289(6451), 1022–1023. https://doi.org/10.1136/bmj.289.6451.1022
  • Chiambretto, P., & Vanoli, D. (2006). Family reactions to the vegetative state: A follow-up after 5 years. Giornale Italiano di Medicina del Lavoro ed Ergonomia, 28(1 Suppl 1), 15–21.
  • Chinner, A., Pauli, R., & Cruse, D. (2021). The impact of prolonged disorders of consciousness on family caregivers’ quality of life–A scoping review. Neuropsychological Rehabilitation, 1–24. https://doi.org/10.1080/09602011.2021.1922463
  • Cipolletta, S., Pasi, M., & Avesani, R. (2014). Vita tua, mors mea: The experience of family caregivers of patients in a vegetative state. Journal of Health Psychology, 21(7), 1197–1206. https://doi.org/10.1177/1359105314550348
  • Covelli, V., Cerniauskaite, M., Leonardi, M., Sattin, D., Raggi, A., & Giovannetti, A. M. (2014). A qualitative study on perceptions of changes reported by caregivers of patients in vegetative state and minimally conscious state: The “time gap experience”. Thescientificworldjournal, 2014, 657321. https://doi.org/10.1155/2014/657321
  • Covelli, V., Sattin, D., Giovannetti, A. M., Scaratti, C., Willems, M., & Leonardi, M. (2016). Caregiver's burden in disorders of consciousness: a longitudinal study. Acta Neurologica Scandinavica, 134(5), 352–359. http://doi.org/10.1111/ane.2016.134.issue-5
  • Dincer, M., & Torun, N. (2018). Living with the patient who has persistence vegetative state : A qualitative study. Journal of Turgut Ozal Medical Center, 25(1), 1–7. https://doi.org/10.1080/10376178.2018.1492350
  • Giacino, J. T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D. I., Kelly, J. P., Rosenberg, J. H., Whyte, J., & Zafonte, R. D. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58(3), 349–353. https://doi.org/10.1212/WNL.58.3.349
  • Giacino, J. T., Katz, D., Schiff, N., Whyte, J., Ashman, E., Ashwal, S., Barbano, R., Hammond, F. M., Laureys, S., Ling, G. S. F., Nakase-Richardson, R., Seel, R. T., Yablon, S., Getchius, T. S. D., Gronseth, G. S., & Armstrong, M. J. (2018a). Practice guideline update: disorders of consciousness. Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology.
  • Giacino, J. T., Katz, D. I., Schiff, N. D., Whyte, J., Ashman, E. J., Ashwal, S., Barbano, R., Hammond, F. M., Laureys, S., Ling, G. S. F., Nakase-Richardson, R., Seel, R. T., Yablon, S., Getchius, T. S. D., Gronseth, G. S., & Armstrong, M. J. (2018b, September 4). Practice guideline update recommendations summary: Disorders of consciousness. Neurology, 91(10), 450–460. https://doi.org/10.1212/WNL.0000000000005926
  • Giovannetti, A. M., Černiauskaitė, M., Leonardi, M., Sattin, D., & Covelli, V. (2015a). Informal caregivers of patients with disorders of consciousness: Experience of ambiguous loss. Brain Injury, 29(4), 473–480. https://doi.org/10.3109/02699052.2014.990514
  • Giovannetti, A. M., Covelli, V., Sattin, D., & Leonardi, M. (2015b). Caregivers of patients with disorder of consciousness: Burden, quality of life and social support. Acta Neurologica Scandinavica, 132(4), 259–269. https://doi.org/10.1111/ane.12392
  • Giovannetti, A. M., Leonardi, M., Pagani, M., Sattin, D., & Raggi, A. (2013). Burden of caregivers of patients in vegetative state and minimally conscious state. Acta Neurologica Scandinavica, 127(1), 10–18. https://doi.org/10.1111/j.1600-0404.2012.01666.x
  • Gonzalez-Lara, L. E., Munce, S., Christian, J., Owen, A. M., Weijer, C., & Webster, F. (2020). The multiplicity of caregiving burden: A qualitative analysis of families with prolonged disorders of consciousness. Brain Injury, 35(2), 200–208. https://doi.org/10.1080/02699052.2020.1865565
  • Gooshki, H. S., Kalkhoran, S. H. A., Ahmadi, S. M. M., Farahani, A. J., & Mahmoudi, N. (2019). The experience and reactions reported by family caregivers of vegetative patients: Qualitative content analysis. International Journal of Ayurvedic Medicine, 10(2), 162–170. https://doi.org/10.47552/ijam.v10i2.1205
  • Goudarzi, F., Abedi, H., & Zarea, K. (2020). Information seeking experiences of family caregivers of patients with persistent vegetative state: A qualitative study. Iranian Journal of Nursing and Midwifery Research, 25(5), 393–400. https://doi.org/10.4103/ijnmr.IJNMR_187_18
  • Goudarzi, F., Abedi, H., Zarea, K., & Ahmadi, F. (2015). Multiple victims: The result of caring patients in vegetative state. Iranian Red Crescent Medical Journal, 17(6), 1–7. https://doi.org/10.5812/ircmj.23571
  • Goudarzi, F., Abedi, H., Zarea, K., Ahmadi, F., & Hosseinigolafshani, S. Z. (2018). The resilient care of patients with vegetative state at home: A grounded theory. Journal of Caring Sciences, 7(3), 163–175. https://doi.org/10.15171/jcs.2018.026
  • Imani-Goghary, Z., & Ghaljeh, M. (2020). The experience of family caregivers caring for a patient with chronic disorders of consciousness: A qualitative content analysis. International Journal of Palliative Nursing, 26(6), 301–309. https://doi.org/10.12968/ijpn.2020.26.6.301
  • Imani-Goghary, Z., Noohi, E., Peyrovi, H., & Kazemi, M. (2016). Exploring the role of spirituality in coping process of family caregivers of patients in vegetative state. Journal of Advances in Medicine and Medical Research, 26(6), 301–309. https://doi.org/10.9734/BJMMR/2016/26300
  • Imani-Goghary, Z., Peyrovi, H., Nouhi, E., & Kazemi, M. (2017). The role of nurses in coping process of family caregivers of vegetative patient : A qualitative study. International Journal of Community Based Nursing and Midwifery, 5(1), 70.
  • Jennett, B. (2002). The vegetative state. Journal of Neurology. Neurosurgery & Psychiatry, 73(4), 355–357. https://doi.org/10.1136/jnnp.73.4.355
  • Jennett, B., & Plum, F. (1972). Persistent vegetative state after brain damage: A syndrome in search of a name. The Lancet, 299(7753), 734–737. https://doi.org/10.1016/S0140-6736(72)90242-5
  • Leonardi, M., Giovannetti, A. M., Pagani, M., Raggi, A., & Sattin, D. (2012). Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: Results from a national study. Brain Injury, 26(10), 1201–1210. https://doi.org/10.3109/02699052.2012.667589
  • Løvstad, M., Solbrække, K. N., Kirkevold, M., Geard, A., Hauger, S. L., & Schanke, A.-K. (2018). It gets better. It cań t be worse than what we have been through.” Family accounts of the minimally conscious state. Brain Injury, 32(13-14), 1659–1669. https://doi.org/10.1080/02699052.2018.1539244
  • Magnani, F. G., Leonardi, M., & Sattin, D. (2020). Caregivers of people with disorders of consciousness: Which burden predictors? Neurological Sciences, 41(10), 2773–2779. https://doi.org/10.1007/s10072-020-04394-6
  • Mauri, A., Schmidt, S., Falchero, S., Baruffi, C., Rebuffi, S., Spinella, N., & Paccagnella, A. (2012). Quality of life of primary caregivers of patients in a vegetative state receiving home enteral nutrition. Nutritional Therapy and Metabolism, 30(3), 144–153. https://doi.org/10/5301/NTM.2012.9703
  • Munce, S. E. P., Webster, F., Christian, J., Gonzalez-Lara, L. E., Owen, A. M., & Weijer, C. (2021). Experiences of family of individuals in a locked in, minimally conscious state, or vegetative state with the health care system. Brain Injury, 35(1), 8–14. https://doi.org/10.1080/02699052.2020.1858494
  • Noohi, E., Peyrovi, H., Imani, G. Z., & Kazemi, M. (2016). Perception of social support among family caregivers of vegetative patients: A qualitative study. Consciousness and cognition. An International Journal, 41, 150–158. https://doi.org/10/1016/j.concog.2016.015
  • Pagani, M., Giovannetti, A. M., Covelli, V., Sattin, D., & Leonardi, M. (2014). Caregiving for patients in vegetative and minimally conscious states: Perceived burden as a mediator in caregivers’ expression of needs and symptoms of depression and anxiety. Journal of Clinical Psychology in Medical Settings, 21(3), 214–222. https://doi.org/10.1007/s10880-014-9399-y
  • Pauline, B., & Boss, P. (2009). Ambiguous loss: Learning to live with unresolved grief. Harvard University Press.
  • Peters, M. D. J., Godfrey, C., McInerney, P., Munn, Z., Tricco, A. C., & Khalil, H. (2020). Chapter 11: Scoping reviews (2020 version). In E. Aromataris, & Z. Munn (Eds.), JBI Manual for Evidence Synthesis. JBI. Available from https://synthesismanual.jbi.global https://doi.org/10.46658/JBIMES-20-12.
  • Peters, M. D. J., Marnie, C., Tricco, A. C., Pollock, D., Munn, Z., Alexander, L., McInerney, P., Godfrey, C. M., & Khalil, H. (2020). Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Synthesis, 18(10), 2119–2126. http://doi.org/10.11124/JBIES-20-00167
  • Peters, M. D. J., Marnie, C., Tricco, A. C., Pollock, D., Munn, Z., Alexander, L., McInerney, P., Godfrey, C. M., & Khalil, H. (2021). Updated methodological guidance for the conduct of scoping reviews. JBI Evidence Implementation, 19(1), 3–10. https://doi.org/10.1097/XEB.0000000000000277
  • Pinel-Jacquemin, S., Althaus, V., & Boissel, A. (2021). Patients in permanent vegetative or minimally conscious states : A literature review of the psychological and health impacts on healthcare personnel. Work, Preprint, 1–14. https://doi.org/10.3233/WOR-203414
  • Prigerson, H. (2004). Complicated grief: When the path of adjustment leads to a dead-end. Bereavement Care, 23(3), 38–40. https://doi.org/10.1080/02682620408657612
  • Sattin, D., Morganti, L., De Torres, L., Dolce, G., Arcuri, F., Estraneo, A., Cardinale, V., Piperno, R., Zavatta, E., & Formisano, R. (2017). Care pathways models and clinical outcomes in disorders of consciousness. Brain and Behavior, 7(8), e00740. https://doi.org/10.1002/brb3.740
  • Soeterik, S. M., Connolly, S., Playford, E. D., Duport, S., & Riazi, A. (2017). The psychological impact of prolonged disorders of consciousness on caregivers: A systematic review of quantitative studies. Clinical Rehabilitation, 31(10), 1374–1385. https://doi.org/10.1177/0269215517695372
  • Steppacher, I., & Kissler, J. (2018). A problem shared is a problem halved ? Comparing burdens arising for family caregivers of patients with disorders of consciousness in institutionalized versus at home care. BMC Psychology, 6(1), 1–33. https://doi.org/10.1186/s40359-018-0272-x
  • WHOQOL Group. (1998). Development of the world health organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558. https://doi.org/10.1017/S0033291798006667
  • Yousefzadeh-Chabok, S., Emamhadi, M., Alijani, B., Cheragh Sepehr, M., & Khodadadi-Hassankiadeh, N. (2018). Psychopathological symptoms in caregivers of patients with vegetative state. Caspian Journal of Neurological Sciences, 4(2), 57–63. https://doi.org/10.29252/CJNS.4.13.57
  • Zucchella, C., Di Santis, M., Ciccone, B., Pelella, M., Scappaticci, M., Badalassi, G., Lavezzi, S., & Bartolo, M. (2018). Is telemonitoring useful for supporting persons with consciousness disorders and caregivers? A preliminary observational study in a real- life population. Journal of Telemedicine and Telecare, 24(1), 56–62. https://doi.org/10.1177/1357633X16673273

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.