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Review

The impact of prolonged disorders of consciousness on family caregivers’ quality of life – A scoping review

ORCID Icon, & ORCID Icon
Pages 1643-1666 | Received 12 Mar 2021, Accepted 22 Apr 2021, Published online: 04 Jun 2021

References

  • Anderson, M. I., Parmenter, T. R., & Mok, M. (2002). The relationship between neurobehavioural problems of severe traumatic brain injury (TBI), family functioning and the psychological well being of the spouse/caregiver: Path model analysis. Brain Injury, 16(9), 743–757. https://doi.org/10.1080/02699050210128906
  • Arksey, H., & O'Malley, L. (2005). Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology: Theory & Practice, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616
  • Boschen, K., Gargaro, J., Gan, C., Gerber, G., & Brandys, C. (2007). Family interventions after acquired brain injury and other chronic conditions: A critical appraisal of the quality of the evidence. NeuroRehabilitation, 22(1), 19–41. https://doi.org/10.3233/NRE-2007-22104
  • Boss, P. (2007). Ambiguous loss theory: Challenges for scholars and practitioners. Family Relations, 56(2), 105–110. https://doi.org/10.1111/j.1741-3729.2007.00444.x
  • Carers UK. (2011). Half a million voices: Improving support for BAME carers. Retrieved from Carers UK.
  • Carver, C. S. (1997). You want to measure coping but your protocol's too long: Consider the brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100. https://doi.org/10.1207/s15327558ijbm0401_6
  • Chan, J., Parmenter, T., & Stancliffe, R. (2009). The impact of traumatic brain injury on the mental health outcomes of individuals and their family carers. Australian e-Journal for the Advancement of Mental Health, 8(2), 155–164. https://doi.org/10.5172/jamh.8.2.155
  • 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. https://doi.org/10.1111/ane.12550
  • Crow, L. (2006). Extreme measures: A personal story of letting go. Death Studies, 30(2), 177–186. https://doi.org/10.1080/07481180500455657
  • Daudt, H. M., van Mossel, C., & Scott, S. J. (2013). Enhancing the scoping study methodology: A large, inter-professional team's experience with Arksey and O'Malley's framework. BMC Medical Research Methodology, 13(1), 48. https://doi.org/10.1186/1471-2288-13-48
  • DeJong, G., Batavia, A., & Williams, J. (1990). Who is responsible for the lifelong well-being of a person with a head injury? Journal of Head Trauma Rehabilitation, 5(1), 9–22. https://doi.org/10.1097/00001199-199003000-00004
  • Derogatis, L. R., & Savitz, K. L. (1999). The SCL-90-R, brief symptom inventory, and matching clinical rating scales. In M. E. Maruish (Ed.), The use of psychological testing for treatment planning and outcomes assessment (pp. 679–724). Lawrence Erlbaum Associates Publishers.
  • Division of Clinical Psychology. (2011). Good practice guidelines on the use of psychological formulation. Leicester. British Psychological Society.
  • Fahrenberg, J., Myrtek, M., Schumacher, J., & Brahler, E. (2000). Fragebogen zur lebenszufriedenheit (FLZ): handanweisung. Hogrefe.
  • Giacino, J. T., Fins, J. J., Laureys, S., & Schiff, N. D. (2014). Disorders of consciousness after acquired brain injury: The state of the science. Nature Reviews Neurology, 10(2), 99–114. https://doi.org/10.1038/nrneurol.2013.279
  • 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), e23571. https://doi.org/10.5812/ircmj.23571
  • Graham, M., Weijer, C., Peterson, A., Naci, L., Cruse, D., Fernandez-Espejo, D., Gonzalez-Lara, L., & Owen, A. M. (2015). Acknowledging awareness: Informing families of individual research results for patients in the vegetative state. Journal of Medical Ethics: Journal of the Institute of Medical Ethics, 41(7), 534–538. https://doi.org/10.1136/medethics-2014-102078
  • Hamama-Raz, Y., Zabari, Y., & Buchbinder, E. (2013). From hope to despair, and back: Being the wife of a patient in a persistent vegetative state. Qualitative Health Research, 23(2), 231–240. https://doi.org/10.1177/1049732312467537
  • Kitzinger, C., & Kitzinger, J. (2014). Grief, anger and despair in relatives of severely brain injured patients: Responding without pathologising. Clinical Rehabilitation, 28(7), 627–631. https://doi.org/10.1177/0269215514527844
  • Larkin, M., Henwood, M., & Milne, A. (2018). Carer-related research and knowledge: Findings from a scoping review. Health & Social Care in the Community, 27(1), 55–67. https://doi.org/10.1111/hsc.12586
  • Levac, D., Colquhoun, H., & O'Brien, K. K. (2010). Scoping studies: Advancing the methodology. Implementation Science, 5(1), 69. https://doi.org/10.1186/1748-5908-5-69
  • Magnani, F. G., Leonardi, M., & Sattin, D. (2020). Caregivers of people with disorders of consciousness: Which burden predictors? Neurological Sciences, https://doi.org/10.1007/s10072-020-04394-6
  • Mar, J., Arrospide, A., Begiristain, J. M., Larranaga, I., Sanz-Guinea, A., & Quemada, I. (2011). Quality of life and burden of carers of patients with acquired brain injury. Revista Espanola de Geriatria y Gerontologia, 46(4), 200–205. https://doi.org/10.1016/j.regg.2011.01.010
  • Martone, M. (2000). Making health care decisions without a prognosis: Life in a brain trauma unit. The Annual of the Society of Christian Ethics, 20, 309–327. https://doi.org/10.5840/asce20002021
  • McGill, P., Bradshaw, J., Smyth, G., Hurman, M., & Roy, A. (2014). Capable environments. Retrieved from https://www.kcl.ac.uk/scwru/news/2014/newsfolder/McGill-et-al-Capable-environments.pdf
  • Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & Group, P. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. BMJ, 339(Jul 21 1), b2535. https://doi.org/10.1136/bmj.b2535
  • Moroni, L., Sguazzin, C., Filipponi, L., Bruletti, G., Callegari, S., Galante, E., Giorgi, I., Majani, G., & Bertolotti, G. (2008). Caregiver need assessment: A questionnaire for caregiver demand. Giornale Italiano di Medicina del Lavoro ed Ergonomia, 30(3 Suppl B), B84–B90. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/19288782
  • National Institute for Health and Care Excellence. (2014). Head injury: assessment and early management (Clinical Guideline 176). Retrieved from https://www.nice.org.uk/guidance/cg176
  • Oliveira, J. d. S., Rocha, R. M., Nery, A. A., & Constancio, J. F. (2020). Repercussions of motocyclical accident in the life of workers and their families. Revista De Pesquisa-Cuidado E Fundamental Online, 12, 95–101. https://doi.org/10.9789/2175-5361.rpcfo.v12.7074
  • Pelentsov, L. J., Laws, T. A., & Esterman, A. J. (2015). The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disability and Health Journal, 8(4), 475–491. https://doi.org/10.1016/j.dhjo.2015.03.009
  • Peters, M., Godfrey, C., McInerney, P., Munn, Z., Tricco, A., & Khalil, H. (2020). Chapter 11: Scoping reviews (2020 version). In E Aromataris, & Z Munn (Eds.), JBI manual for evidence synthesis. Joanna Briggs Institute.
  • Prigerson, H., Vanderwerker, L., & Maciejewski, P. (2008). Prolonged grief disorder: A case for inclusion. In D. S. M.-V. In H, R. Stroebe M, H. Schut, & W. Stroebe (Eds.), Handbook of bereavement research and practice: 21st century perspectives (pp. 165–186). American Psychological Association Press.
  • Rossi Ferrario, S., Bacchetta, M., Omarini, G., & Zotti, A. (1998). Il family Strain Questionnaire: Una proposta per il caregiving assessment. Psicologia Salute, 2(3), 119–127.
  • Royal College of Physicians. (2020). Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines. RCP.
  • Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing and Health, 23(4), 334–340. https://doi.org/10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G
  • Sica, C., Novara, C., Dorz, S., & Sanavio, E. (1997). Coping orientation to problems experienced (COPE): traduzione e adattamento italiano. Bollettino Di Psicologia Applicata, 223, 25–34.
  • Soeterik, S. (2017). The experience of families and healthcare professionals supporting people with prolonged disorders of consciousness. [PhD Dissertation]. Royal Holloway, University of London. Retrieved from https://pure.royalholloway.ac.uk/portal/files/29836788/2017_Soeterik_SM_PhD.pdf
  • Soeterik, S., Connolly, S., Playford, 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
  • Soeterik, S., Connolly, S., & Riazi, A. (2018). Neither a wife nor a widow": An interpretative phenomenological analysis of the experiences of female family caregivers in disorders of consciousness. Neuropsychological Rehabilitation, 28(8), 1392–1407. https://doi.org/10.1080/09602011.2018.1529603
  • Vidotto, G., Ferrario, S. R., Bond, T. G., & Zotti, A. M. (2010). Family Strain Questionnaire - Short form for nurses and general practitioners. Journal of Clinical Nursing, 19(1–2), 275–283. https://doi.org/10.1111/j.1365-2702.2009.02965.x
  • Wade, D. (2018). How many patients in a prolonged disorder of consciousness might need a best interests meeting about starting or continuing gastrostomy feeding? Clinical Rehabilitation, 32(11), 1551–1564. https://doi.org/10.1177/0269215518777285
  • Ware, J., Kosinski, M., & Keller, S. D. (1996). A 12-item short-form health survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233. https://doi.org/10.1097/00005650-199603000-00003
  • 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