Hostname: page-component-78c5997874-dh8gc Total loading time: 0 Render date: 2024-11-05T04:24:44.127Z Has data issue: false hasContentIssue false
  • English
  • Français

Emotional Burden, Quality of Life, and Coping Styles in Care Givers of Patients with Disorders of Consciousness Living in Italy: Preliminary Data

Published online by Cambridge University Press:  06 December 2016

Caterina Romaniello ,
Chiara Simoni ,
Marina Farinelli ,
Erik Bertoletti ,
Vincenzo Pedone  and
Georg Northoff
Caterina Romaniello*
Affiliation:
Santa Viola Hospital, Bologna, Italy Clinical Psychology Service, Villa Bellombra Rehabilitation Hospital, Bologna, Italy
Chiara Simoni
Affiliation:
Villa Bellombra Rehabilitation Hospital, Bologna, Italy
Marina Farinelli
Affiliation:
Clinical Psychology Service, Villa Bellombra Rehabilitation Hospital, Bologna, Italy
Erik Bertoletti
Affiliation:
Santa Viola Hospital, Bologna, Italy
Vincenzo Pedone
Affiliation:
Santa Viola Hospital, Bologna, Italy Villa Bellombra Rehabilitation Hospital, Bologna, Italy
Georg Northoff
Affiliation:
Mind, Brain Imaging and Neuroethics, Institute of Mental Health Research, University of Ottawa, ON, Canada
*
Address for correspondence: Dr. Caterina Romaniello, Ospedale Privato Accreditato Santa Viola, Via della Ferriera, 10, 40133 Bologna, Italy. E-mail: [email protected]
Get access

Abstract

The literature about the care givers of patients with Disorders of Consciousness (DOCs) has highlighted the impact on both mental and physical dimensions of quality of life. This study aimed to: (1) describe emotional burden, quality of life, and coping styles in care givers of hospitalized patients with DOCs, compared to Italian normative data; (2) explore the relationships between these variables and their associations with socio-demographic features; and (3) describe their changes over time.

Fifteen care givers of patients with DOCs, mostly middle-aged women, were assessed using the Family Strain Questionnaire, the SF-36 Health Survey, and the Coping Orientation to Problems Experienced – Nuova Versione Italiana. Eleven subjects were also assessed after 6 and 12 months. Data were analysed through descriptive statistics, correlations, and nonparametric tests of group differences.

Compared to the Italian normative data, our sample showed a worse outcome in mental health, social functioning, global mental component, and emotional role functioning. Furthermore, subjects with high emotional burden had more thoughts of death compared to subjects with low emotional burden. Follow-up analyses revealed no variables changed over time.

These results highlight the need for psychological interventions and support, since care givers represent an important part of an all-embracing support and care network for patients with DOCs.

Keywords

care-giver burdendisorders of consciousnesscopingemotional distressquality of lifevegetative stateminimally conscious state
Type
Articles
Information
Brain Impairment , Volume 17 , Issue 3 , December 2016 , pp. 254 - 264
Copyright
Copyright © Australasian Society for the Study of Brain Impairment 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Apolone, G., Boldrini, P., Avesani, R., De Tanti, A., Fogar, P., Gambini, M.G., & Taricco, M. (2007) Report of National Consensus Conference of 10-11 June 2005: Bisogni riabilitativi ed assistenziali delle persone con disabilità da grave cerebrolesioni acquisite (GCA) e delle loro famiglie, nella fase post-ospedaliera. Italian Journal of Rehabilitation Medicine, 21, 29–51-Retrieved from http://www.snlg-iss.it/cms/files/CC%20Verona.pdf.Google Scholar
Apolone, G., & Mosconi, P. (1998). The Italian SF-36 health survey: Translation, validation and norming. Journal of Clinical Epidemiology, 51 (11), 1025–1036.Google Scholar
Bastianelli, A., Gius, E., & Cipolletta, S. (2016). Changes over time in the quality of life, prolonged grief and family strain of family caregivers of patients in vegetative state: a pilot study. Journal of Health Psychology, 21 (5), 844–852.Google Scholar
Bedini, L.A., & Guinan, D.M. (1996). “If I could just be selfish. . .”: Caregivers’ perceptions of their entitlement to leisure. Leisure Sciences, 18 (3), 227–239.Google Scholar
Bedini, L.A., & Phoenix, T.L. (2004). Perceptions of leisure by family caregivers: A profile. Therapeutic Recreation Journal, 38 (4), 366–381.Google Scholar
Chiambretto, P., Rossi Ferrario, S., & Zotti, A.M. (2001). Patients in a persistent vegetative state: Caregiver attitudes and reactions. Acta Neurologica Scandinavica, 104 (6), 364–369.Google Scholar
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 (Suppl. 1), 15–21.Google Scholar
Corallo, F., Bonanno, L., De Salvo, S., Giorgio, A., Rifici, C., Buono, V.L., & Marino, S. (2015). Effects of counseling on psychological measures in caregivers of patients with disorders of consciousness. American Journal of Health Behavior, 39 (6), 772–778.Google Scholar
Crawford, D.W., Jackson, E.L., & Godbey, G. (1991). A hierarchical model of leisure constraints. Leisure Sciences, 13 (4), 309–320.CrossRefGoogle Scholar
Cruzado, J.A., & Elvira de la Morena, M.J. (2013). Coping and distress in caregivers of patients with disorders of consciousness. Brain Injury, 27 (7-8), 793–798.Google Scholar
Elvira de la Morena, M.J., & Cruzado, J.A. (2013). Caregivers of patients with disorders of consciousness: Coping and prolonged grief. Acta Neurologica Scandinavica, 127 (6), 413–418.Google Scholar
Feeney, B.C., & Collins, N.L. (2003). Motivations for caregiving in adult intimate relationships: Influences on caregiving behavior and relationship functioning. Personality and Social Psychology Bulletin, 29 (8), 950–968.Google Scholar
Ferro, S., & Mazza, L. (2015, February). Quanto costa la presa in carico delle persone con DOC in Italia? Presented at the National Conference: Results of the National Project INCARICO: Cure and Care Pathways for Patients with Disorders of Consciousness, Italian Ministry of Health, Rome, Italy.Google Scholar
Folkman, S., Lazarus, R.S., Dunkel-Schetter, C., DeLongis, A., & Gruen, R.J. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50 (5), 992.Google Scholar
Giacino, J.T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D.I., . . . Zasler, N.D. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58 (3), 349–353.Google Scholar
Giacino, J.T., & Kalmar, K. (2005). Diagnostic and prognostic guidelines for the vegetative and minimally conscious states. Neuropsychological Rehabilitation, 15 (3-4), 166–174.CrossRefGoogle ScholarPubMed
Giovannetti, A.M., Covelli, V., Sattin, D., & Leonardi, M. (2015). Caregivers of patients with disorder of consciousness: Burden, quality of life and social support. Acta Neurologica Scandinavica, 132 (4), 259–269.Google Scholar
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.CrossRefGoogle ScholarPubMed
Italian Ministry of Health. (2011). Linee di indirizzo per l'assistenza alle persone in stato vegetativo e stato di minima coscienza. Retrieved from http://www.salute.gov.it/imgs/C_17_pubblicazioni_1535_allegato.pdf.Google Scholar
Kim, Y., Carver, C.S., Deci, E.L., & Kasser, T. (2008). Adult attachment and psychological well-being in cancer caregivers: The mediational role of spouses' motives for caregiving. Health Psychology, 27 (Suppl. 2), S144–S154.CrossRefGoogle ScholarPubMed
Lazarus, R.S., & Folkman, S. (1984). Stress, appraisal, and coping. New York: Springer.Google Scholar
Leonardi, M., Giovannetti, A.M., Pagani, M., Raggi, A., & Sattin, D.M. (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.CrossRefGoogle ScholarPubMed
Leonardi, M., Sattin, D., Raggi, A., & Italian National Consortium on Functioning Disability in DOCs patients (2013). An Italian population study on 600 persons in vegetative state and minimally conscious state. Brain Injury, 27 (4), 473–484.Google Scholar
McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2005). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 36 (10), 2181–2186.Google Scholar
Moretta, P., Estraneo, A., De Lucia, L., Cardinale, V., Loreto, V., & Trojano, L. (2014). A study of the psychological distress in family caregivers of patients with prolonged disorders of consciousness during in-hospital rehabilitation. Clinical Rehabilitation, 28 (7), 717–725.Google Scholar
Multi-Society Task Force on PVS (1994). Medical aspects of the persistent vegetative state. The New England Journal of Medicine, 330, 1572–79.Google Scholar
Nalder, E., Fleming, J., Cornwell, P., & Foster, M. (2012). Linked lives: The experiences of family caregivers during the transition from hospital to home following traumatic brain injury. Brain Impairment, 13 (01), 108–122.Google Scholar
National Statistical Institute, Income of Italian families. Retrieved from http://dati.istat.it/Index.aspx?DataSetCode=DCCV_SPEMMFAM#.Google Scholar
Navaie-Waliser, M., Spriggs, A., & Feldman, P.H. (2002). Informal caregiving: Differential experiences by gender. Medical Care, 40 (12), 1249–1259 CrossRefGoogle ScholarPubMed
Pagani, M., Giovannetti, A.M., Covelli, V., Sattin, D., Raggi, A., & Leonardi, M. (2014). Physical and mental health, anxiety and depressive symptoms in caregivers of patients in vegetative state and minimally conscious state. Clinical Psychology & Psychotherapy, 21 (5), 420–426.Google Scholar
Pinquart, M., & Sörensen, S. (2003). Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis. Psychology and Aging, 18 (2), 250–267.Google Scholar
Pinquart, M., & Sörensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61 (1), 33–45.Google Scholar
Pinquart, M., & Sörensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 62 (2), 126–137.CrossRefGoogle ScholarPubMed
Quinn, C., Clare, L., & Woods, R.T. (2010). The impact of motivations and meanings on the wellbeing of caregivers of people with dementia: A systematic review. International Psychogeriatrics, 22 (01), 43–55.CrossRefGoogle ScholarPubMed
Romaniello, C., Farinelli, M., Matera, N., Bertoletti, E., Pedone, V., & Northoff, G. (2015). Anxious attachment style and hopelessness as predictors of burden in caregivers of patients with disorders of consciousness: A pilot study. Brain Injury, 29 (4), 466–472.CrossRefGoogle ScholarPubMed
Rossi Ferrario, S., Bacchetta, M., Omarini, G., & Zotti, A.M. (1998). Il family strain questionnaire: Una proposta per il Caregiving assessment. Psicologia della Salute, 2 (3), 119–127.Google Scholar
Rossi Ferrario, S., Baiardi, P., & Zotti, A.M. (2004). Update the family strain questionnaire: A tool for the general screening of the caregiving-related problems. Quality of Life Research, 13 (8), 1425–34.Google Scholar
Rossi Ferrario, S., Zotti, A.M., Zaccaria, S., & Donner, C.F. (2001). Caregiver strain associated with tracheostomy in chronic respiratory failure. CHEST Journal, 119 (5), 1498–1502.Google Scholar
Schölzel-Dorenbos, C.J., Draskovic, I., Vernooij-Dassen, M.J., & Rikkert, M.G.O. (2009). Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Disease & Associated Disorders, 23 (2), 171–177.Google Scholar
Serrano-Aguilar, P.G., Lopez-Bastida, J., & Yanes-Lopez, V. (2006). Impact on health-related quality of life and perceived burden of informal caregivers of individuals with Alzheimer's disease. Neuroepidemiology, 27 (3), 136–142.Google Scholar
Sica, C., Magni, C., Ghisi, M., Altoe’, G., Sighinolfi, C., Chiri, L.R., & Franceschini, S. (2008). Coping orientation of problem experienced − Nuova versione italiana (COPE-NVI): Uno strumento per la misura degli stili di coping. Psicoterapia Cognitiva e Comportamentale, 14 (1), 27–53.Google Scholar
Stern, J.M., Sazbon, L., Becker, E., & Costeff, H. (1988). Severe behavioural disturbance in families of patients with prolonged coma. Brain Injury, 2 (3), 259–262.Google Scholar
Taricco, M., De Tanti, A., Boldrini, P., & Gatta, G. (2006). Report of National Consensus Conference of 20-21 June 2000: The rehabilitation management of traumatic brain injury patients during the acute phase: criteria for referral and transfer from intensive care units to rehabilitative facilities. Europa Medicophysica, 42 (1), 73.Google Scholar
Turner, B., Fleming, J., Parry, J., Vromans, M., Cornwell, P., Gordon, C., & Ownsworth, T. (2010). Caregivers of adults with traumatic brain injury: The emotional impact of transition from hospital to home. Brain Impairment, 11 (03), 281–292.Google Scholar
Ware, J.E., & Gandek, B. (1998). Overview of the SF-36 health survey and the international quality of life assessment (IQOLA) project. Journal of Clinical Epidemiology, 51 (11), 903–912.Google Scholar
Wicks, M.N., Milstead, E.J., Hathaway, D.K., Cetingok, M., Hickey, J.V., & Currier, H. (1997). Subjective burden and quality of life in family caregivers of patients with end stage renal disease. ANNA Journal, 24 (5), 527–539.Google Scholar
Wynaden, D., Ladzinski, U., Lapsley, J., Landsborough, I., Butt, J., & Hewitt, V. (2006). The caregiving experience: How much do health professionals understand?. Collegian, 13 (3), 6–10.Google Scholar