Psychological status and role of caregivers in the neuro-rehabilitation of patients with severe Acquired Brain Injury (ABI)

References

• Arciniegas DB, Wortzel HS. Emotional and behavioral dyscontrol after traumatic brain injury. Psychiatr Clin North Am. 2014 Mar;37(1):31–53. doi:10.1016/j.psc.2013.12.001.
   PubMed Web of Science ®Google Scholar
• Ciurli P, Formisano R, Bivona U, Cantagallo A, Angelelli P. Neuropsychiatric disorders in persons with severe traumatic brain injury: prevalence, phenomenology, and relationship with demographic, clinical, and functional features. J Head Trauma Rehabil. 2011 Mar;26(2):116–26. doi:10.1097/HTR.0b013e3181dedd0e.
   PubMed Web of Science ®Google Scholar
• Levin HS.Neurobehavioral outcome of Closed head injury: implications for clinical trials. J Neurotrauma. 1995;12(4):601–10. doi:10.1089/neu.1995.12.601.
   PubMed Web of Science ®Google Scholar
• Silver Jonathan M, McAllister TW, Yudofsky Stuart C. Textbook of traumatic brain injury. J Head Trauma Rehabil. 2011;21:89–90.
   Google Scholar
• Dikmen SS, Machamer JE, Powell JM, Temkin NR.Outcome 3 to 5 years after moderate to severe traumatic brain injury. Arch Phys Med Rehabil. 2003;84(10):1449–57. doi:10.1016/S0003-9993(03)00287-9.
   PubMed Web of Science ®Google Scholar
• Rapoport MJ, Mccullagh S, Streiner D, Feinstein A.The clinical significance of major depression following mild traumatic brain injury. Psychosomatics. 2003;44(1):31–37. doi:10.1176/appi.psy.44.1.31.
   PubMed Web of Science ®Google Scholar
• Lezak MD.Brain damage is a family affair. J Clin Exp Neuropsychol Off J Int Neuropsychol Soc. 1988;10(1):111–23. doi:10.1080/01688638808405098.
   PubMed Web of Science ®Google Scholar
• Spoorenberg SL, Uittenbroek RJ, Middel B, Kremer BP, Reijneveld SA, Wynia K.Embrace, a model for integrated elderly care: study protocol of a randomized controlled trial on the effectiveness regarding patient outcomes, service use, costs, and quality of care. BMC Geriatr. 2013;13(1):62. doi:10.1186/1471-2318-13-62.
   PubMed Web of Science ®Google Scholar
• Farnese ML, Girardi G, Fida R, Bivona U, Bartolo M, De Tanti A, Intiso D, Scarponi F, Antonucci G. Caregivers’ engagement during in‐hospital care of sABI’s patients: evaluation of informal co‐production from the health providers’ perspective. Health Soc Care Commun. 2020. doi:10.1111/hsc.13019.
   PubMed Web of Science ®Google Scholar
• Segev E, Levinger M, Hochman Y.“Shared destiny”: the dynamics of relationships in families of patients with brain injury. Qual Health Res. 2018;28(1):112–25. doi:10.1177/1049732317737310.
   PubMed Web of Science ®Google Scholar
• Perel PA, Olldashi F, Muzha I, Filipi N, Lede R, Copertari P, et al. Predicting outcome after traumatic brain injury: practical prognostic models based on large cohort of international patients. BMJ. 2008;336:425–29.
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Rapport LJ, Marwitz JH, Harrison-Felix C, Hart T, Glenn M, Hammond F. Caregivers’ well-being after traumatic brain injury: a multicenter prospective investigation. Arch Phys Med Rehabil. 2009;90(6):939–46. doi:10.1016/j.apmr.2009.01.010.
   PubMed Web of Science ®Google Scholar
• Schulz R, Sherwood PR. Physical and mental health effects of family caregiving. Am J Nurs. 2008 Sep;108(9):23–27. doi:10.1097/01.NAJ.0000336406.45248.4c.
   PubMed Web of Science ®Google Scholar
• Coe NB, Van Houtven CH.Caring for mom and neglecting yourself? The health effects of caring for an elderly parent. Health Econ. 2009;18(9):991–1010. doi:10.1002/hec.1512.
   PubMed Web of Science ®Google Scholar
• Van Houtven CH, Friedemann-Sánchez G, Clothier B, Levison D, Taylor BC, Jensen AC, Phelan SM, Griffin JM. Is policy well-targeted to remedy financial strain among caregivers of severely injured U.S. service members? Inq J Health Care Organ Provision Financ. 2012;49(4):339–51. doi:10.5034/inquiryjrnl_49.04.01.
   PubMed Web of Science ®Google Scholar
• Van Houtven CH, Coe NB, Skira MM. The effect of informal care on work and wages. J Health Econ. 2013 Jan;32(1):240–52. doi:10.1016/j.jhealeco.2012.10.006.
   PubMed Web of Science ®Google Scholar
• Zarit SH, Reever KE, Bach-Peterson J.Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55. doi:10.1093/geront/20.6.649.
   PubMed Web of Science ®Google Scholar
• Rohlman DS, Anger WK, Lein PJ, Jamal GA, Hansen S, Pilkington A, et al. A double-blind trial of bupropion versus desipramine for bipolar depression. J Clin Psychiatry. 1994;55:391–93.
   PubMed Web of Science ®Google Scholar
• Turner B, Fleming J, Cornwell P, Worrall L, Ownsworth T, Haines T, Kendall M, Chenoweth L. A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers. Brain Inj. 2007;21(11):1119–30. doi:10.1080/02699050701651678.
   PubMed Web of Science ®Google Scholar
• D’Ippolito M, Aloisi M, Azicnuda E, Silvestro D, Giustini M, Verni F, Formisano R, Bivona U. Changes in caregivers lifestyle after severe acquired brain injury: a preliminary investigation. Biomed Res Int. 2018;2018(1):1–14. doi:10.1155/2018/2824081.
   Web of Science ®Google Scholar
• Formisano R, De Laurentiis S, Accetta N, Di Cosimo MR, Massicci R, Ciurli P, et al. Quality of life as perceived by the patients with TBI and their caregivers. J Neurol Sci. 2015;38(2):279–86. doi:10.1007/s10072-016-2755-y.
   Web of Science ®Google Scholar
• Perlesz A, Kinsella G, Crowe S. Psychological distress and family satisfaction following traumatic brain injury: injured individuals and their primary, secondary, and tertiary carers. J Head Trauma Rehabil. 2000 Jun;15(3):909–29. doi:10.1097/00001199-200006000-00005.
   PubMed Web of Science ®Google Scholar
• Tverdov AH, McClure KS, Brownsberger MG, Armstrong SL.Family needs at a post-acute rehabilitation setting and suggestions for supports. Brain Inj. 2016;30(3):324–33. doi:10.3109/02699052.2015.1113566.
   PubMed Web of Science ®Google Scholar
• Serio CD, Kreutzer JS, Witol AD.Family needs after traumatic brain injury: A factor analytic study of the family needs questionnaire. Brain Inj. 1997;11(1):1–9. doi:10.1080/026990597123764.
   PubMed Web of Science ®Google Scholar
• Lefebvre H, Levert MJ.The close relatives of people who have had a traumatic brain injury and their special needs. Brain Inj. 2012;26(9):1084–97. doi:10.3109/02699052.2012.666364.
   PubMed Web of Science ®Google Scholar
• Bivona U, Antonucci G, Contrada M, Rizza F, Leoni F, Zasler ND, Formisano R. A biopsychosocial analysis of sexuality in adult males and their partners after severe traumatic brain injury. Brain Inj. 2016;30(9):1082–95. doi:10.3109/02699052.2016.1165867.
   PubMed Web of Science ®Google Scholar
• Bivona U, Formisano R, De Laurentiis S, Accetta N, M.R. Di Cosimo M, Massicci R, Ciurli P, Azicnuda E, Silvestro D, Sabatini U, et al. Theory of mind impairment after severe traumatic brain injury and its relationship with caregivers’ quality of life. Restor Neurol Neurosci. 2015;33(3):335–45. doi:10.3233/RNN-140484.
   PubMed Web of Science ®Google Scholar
• Leach LR, Frank RG, Bouman DE, Farmer J.Family functioning, social support and depression after traumatic brain injury. Brain Inj. 1994;8(7):599–606. doi:10.3109/02699059409151012.
   PubMed Web of Science ®Google Scholar
• Dharma KK, Damhudi D, Yardes N, Haeriyanto S.Increase in the functional capacity and quality of life among stroke patients by family caregiver empowerment program based on adaptation model. Int J Nurs Sci. 2018;5(4):357–64. doi:10.1016/j.ijnss.2018.09.002.
   PubMed Web of Science ®Google Scholar
• Sander AM, Maestas KL, Sherer M, Malec JF, Nakase-Richardson R.Relationship of caregiver and family functioning to participation outcomes after postacute rehabilitation for traumatic brain injury: A multicenter investigation. Arch Phys Med Rehabil. 2012;93(5):842–48. doi:10.1016/j.apmr.2011.11.031.
   PubMed Web of Science ®Google Scholar
• Vangel SJ, Rapport LJ, Hanks RA.Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury. J Head Trauma Rehabil. 2011;26(1):20–29. doi:10.1097/HTR.0b013e318204a70d.
   PubMed Web of Science ®Google Scholar
• Shepherd-Banigan ME, Shapiro A, McDuffie JR, Brancu M, Sperber NR, Van Houtven CH, Kosinski AS, Mehta NN, Nagi A, Williams JW, et al. Interventions that support or involve caregivers or families of patients with traumatic injury: a systematic review. J Gen Intern Med. 2018;33(7):1177–86. doi:10.1007/s11606-018-4417-7.
   PubMed Web of Science ®Google Scholar
• Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J.An inventory for measuring depression. Arch Gen Psychiatry. 1961;4(6):561–71. doi:10.1001/archpsyc.1961.01710120031004.
   PubMed Web of Science ®Google Scholar
• Wang YP, Gorenstein C.Psychometric properties of the beck depression inventory-II: a comprehensive review. Rev Bras Psiquiatr. 2013;35(4):416–31. doi:10.1590/1516-4446-2012-1048.
   PubMed Web of Science ®Google Scholar
• Leonardi M, Giovannetti AM, Pagani M, Raggi A, Sattin D.Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: results from a national study. Brain Inj. 2012;26(10):1201–10. doi:10.3109/02699052.2012.667589.
   PubMed Web of Science ®Google Scholar
• Grabler MR, Weyen U, Juckel G, Tegenthoff M, Mavrogiorgou-Juckel P.Death anxiety and depression in amyotrophic lateral sclerosis patients and their primary caregivers. Front Neurol. 2018;9(1035):1–6. doi:10.3389/fneur.2018.01035.
   PubMed Web of Science ®Google Scholar
• Ghisi M, Flebus G, Montano A, Sanavio E, Sica C. Beck depression inventory II Italian version. Firenze: O.S. Giunt; 2006.
   Google Scholar
• Spielberger CD, Gorsuch RL, Lushene RE, Vagg PR, Jacobs GA. Manual for the state–trait anxiety inventory. Palo Alto: CA: Consulting Psychologist Press; 1983.
   Google Scholar
• Predrabissi L, Santinello M. Spielberger’s state-trait anxiety inventory (Form Y) Italian Version. Firenze: O.S. Giunt; 1989.
   Google Scholar
• Kiely DK, Prigerson H, Mitchell SL.Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. Am J Geriatr Psychiatry. 2008;16(8):664–73. doi:10.1097/JGP.0b013e3181784143.
   PubMed Web of Science ®Google Scholar
• Corallo F, Bonanno L, Lo Buono V, De Salvo S, Allone C, Palmeri R, La Gattuta E, Rifici C, Alagna A, Todaro A, et al. Evolution of psychological condition in caregivers of patients with disorders of consciousness: a longitudinal study. Neurol Sci. 2017;38(7):1249–53. doi:10.1007/s10072-017-2941-6.
   PubMed Web of Science ®Google Scholar
• Lai C, Luciani M, Galli F, Morelli E, Moriconi F, Penco I, Aceto P, Lombardo L. Persistent complex bereavement disorder in caregivers of terminally ill patients undergoing supportive-expressive treatment: a pilot study. J Ment Health. 2017;26(2):111–18. doi:10.3109/09638237.2016.1167855.
   PubMed Web of Science ®Google Scholar
• Chiambretto P, Moroni L, Guarniero C, Bertolotti G. Validazione Italiana del questionario Prolonged Grief Disorder (PG-12). G Ital Med Lav Suppl A Psicol. 2008;30:105–10.
   PubMedGoogle Scholar
• Novak M.Application of a multidimensional caregiver burden inventory. Gerontologist. 1989;29(6):798–803. doi:10.1093/geront/29.6.798.
   PubMed Web of Science ®Google Scholar
• Lee GB, Woo H, Lee SY, Cheon SM, Kim JW.The burden of care and the understanding of disease in Parkinson’s disease. PLoS One. 2019;14(5):1–9.
   Web of Science ®Google Scholar
• Wibawa P, Zombor R, Dragovic M, Hayhow B, Lee J, Panegyres PK, et al. Anosognosia is associated with greater caregiver burden and Poorer executive function in huntington disease. J Geriatr Psychiatry Neurol. 2019;14–20.
   Web of Science ®Google Scholar
• Kelley E, Sullivan C, Loughlin JK, Hutson L, Dahdah MN, Long MK, Schwab KA, Poole JH. Self-awareness and neurobehavioral outcomes, 5 years or more after moderate to severe brain injury. J Head Trauma Rehabil. 2014;29(2):147–52. doi:10.1097/HTR.0b013e31826db6b9.
   PubMed Web of Science ®Google Scholar
• Marvardi M, Mattioli P, Spazzafumo L, Mastriforti R, Rinaldi P, Polidori C, Cherubini A, Quartesan R, Bartorelli L, Bonaiuto S, et al. The caregiver burden inventory in evaluating the burden of caregivers of elderly demented patients: results from a multicenter study. Aging Clin Exp Res. 2005;17:46–53.
   PubMed Web of Science ®Google Scholar
• Ferrario SR, Baiardi P, Zotti AM.Update on the family strain questionnaire: a tool for the general screening of caregiving-related problems. Qual Life Res. 2004;13(8):1425–34. doi:10.1023/B:QURE.0000040795.78742.72.
   PubMed Web of Science ®Google Scholar
• Ferrario SR, Vitaliano P, Zotti AM, Galante E, Fornara R.Alzheimer’s disease: usefulness of the family strain questionnaire and the screen for caregiver burden in the study of caregiving-related problems. Int J Geriatr Psychiatry. 2003;18(12):1110–14. doi:10.1002/gps.1021.
   PubMed Web of Science ®Google Scholar
• Mazzotti E, Sebastiani C, Antonini Cappellini GC, Marchetti P.Predictors of mood disorders in cancer patients’ caregivers. Support Care Cancer. 2013;21(2):643–47. doi:10.1007/s00520-012-1663-9.
   PubMed Web of Science ®Google Scholar
• Rappaport M, Hall KM, Hopkins K, Belleza T, Cope DN.Disability rating scale for severe head trauma: coma to community. Arch Phys Med Rehabil. 1982;63(3):118–23.
   PubMed Web of Science ®Google Scholar
• Hagen C, Malkmus D, Durham P. Levels of cognitive functioning. Downey, CA: Rancho de los Amigos Hospital; 1972.
   Google Scholar
• Smith JE, Smith DL.No map, no guide: family caregivers’ perspectives on their journeys through the system. Care Manage J. 2000;2(1):27–33.
   PubMedGoogle Scholar
• Brooks N, Campsie L, Symington C, Beattie A, McKinlay W.The effects of severe head injury on patient and relative within seven years of injury. J Head Trauma Rehabil. 1987;2(3):1–2. doi:10.1097/00001199-198709000-00003.
   Google Scholar
• Gillen R, Tennen H, Affleck G, Steinpreis R.Distress, depressive symptoms, and depressive disorder among caregivers of patients with brain injury. J Head Trauma Rehabil. 1998;13(3):31–43. doi:10.1097/00001199-199806000-00004.
   PubMed Web of Science ®Google Scholar
• Kreutzer JS, Gervasio AH, Camplair PS.Primary caregivers’ psychological status and family functioning after traumatic brain injury. Brain Inj. 1994;8(3):197–210. doi:10.3109/02699059409150973.
   PubMed Web of Science ®Google Scholar
• Livingston MG, Brooks DN, Bond MR.Patient outcome in the year following severe head injury and relatives’ psychiatric and social functioning. J Neurol Neurosurg Psychiatry. 1985;48(9):876–81. doi:10.1136/jnnp.48.9.876.
   PubMed Web of Science ®Google Scholar
• Trujillo M, Perrin PB, Doser K, Norup A.Using personality traits to construct linear growth models of mental health in family members of individuals with severe brain injury. Rehabil Psychol. 2016;61(4):389–96. doi:10.1037/rep0000108.
   PubMed Web of Science ®Google Scholar
• Verhaeghe S, Defloor T, Grypdonck M.Stress and coping among families of patients with traumatic brain injury: A review of the literature. J Clin Nurs. 2005;14(8):1004–12. doi:10.1111/j.1365-2702.2005.01126.x.
   PubMed Web of Science ®Google Scholar
• Rivera P, Elliott TR, Berry JW, Grant JS, Oswald K.Predictors of caregiver depression among community-residing families living with traumatic brain injury. NeuroRehabilitation. 2007;22(1):3–8. doi:10.3233/NRE-2007-22102.
   PubMed Web of Science ®Google Scholar
• Field A. Discovering statistics using IBM SPSS statistics. Sage; 2013.
   Google Scholar