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Neurological Sciences

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01-10-2020 | Affective Disorder | Original Article

Caregivers of people with disorders of consciousness: which burden predictors?

Authors: Francesca G. Magnani, Matilde Leonardi, Davide Sattin

Published in: Neurological Sciences | Issue 10/2020

Abstract

Objectives

Caregivers of patients diagnosed with disorders of consciousness (DoCs) play a pivotal role in the care pathway of these patients. Due to the high costs of care, among other symptoms and disorders previously described in the literature, they can manifest also mood and stress-related disorders which greatly impact their life and increase their burden. It is noteworthy to identify which factors are better related to the manifestation of mood and stress-related disorders to care for the caregivers in time. However, no studies have explored which factors are related to the manifestation of these disorders within this population yet.

Materials and methods

We explored with different questionnaires whether patient-, caregiver-, and caregiving environment-related factors are associated with mood and stress-related disorders on 114 caregivers of patients with DoCs.

Results

Our results showed that female caregivers manifested higher levels of both depression and prolonged grief disorder; furthermore, the presence of economic problems increased the levels of depression. Moreover, different levels of caregivers’ depression, anxiety, anger expression, and prolonged grief disorder were closely linked to the degree of behavioural responsiveness of the patients.

Conclusions

Our results highlighted the need to consider also caregivers’ mood and stress-related disorders when defining the care pathway of patients with DoCs; indeed, caregivers constitute the main environment of DoC patients and they need tailored interventions aimed at reducing their burden due to caregiving.

Available only for authorised users

The subcategories MCS+ and MCS- better define the complexity of MCS patients’ behaviours. Patients in MCS+ show high-level behavioural responses, such as command following and verbalization or non-functional communication, whilst patients in MCS− show low-level behavioural responses, such as stimuli localization and visual pursuit [39].

Wittenberg E, James LP, Prosser LA (2019) Spillover effects on caregivers’ and family members’ utility: a systematic review of the literature. Pharmacoeconomics. 37(4):475–499. https://doi.org/10.1007/s40273-019-00768-7CrossRefPubMed

Soeterik SM, Connolly S, Playford ED, Duport S, Riazi A (2017) The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies. Clin Rehabil 31(10):1374–1385. https://doi.org/10.1177/0269215517695372CrossRefPubMed

Gerrard P, Zafonte R, Giacino JT (2014) Coma Recovery Scale–Revised: evidentiary support for hierarchical grading of level of consciousness. Arch Phys Med Rehabil 95(12):2335–2341. https://doi.org/10.1016/J.APMR.2014.06.018CrossRefPubMed

Ennis N, Rosenbloom BN, Canzian S, Topolovec-Vranic J (2013) Depression and anxiety in parent versus spouse caregivers of adult patients with traumatic brain injury: a systematic review. Neuropsychol Rehabil 23(1):1–18CrossRef

Leonardi M, Giovannetti AM, 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 Inj 26(10):1201–1210. https://doi.org/10.3109/02699052.2012.667589CrossRefPubMed

Rando T (2000) Clinical dimensions of anticipatory mourning: theory and practice in working with the dying, their loved ones, and their caregivers. Res Press

Giovannetti AM, Covelli V, Sattin D, Leonardi M (2015) Caregivers of patients with disorder of consciousness: burden, quality of life and social support. Acta Neurol Scand 132(4):259–269. https://doi.org/10.1111/ane.12392CrossRefPubMed

Boss P (1999) Ambiguous loss: learning to live with unresolved grief. Harvard Press, Cambridge

Zaksh Y, Yehene E, Elyashiv M, Altman A (2019) Partially dead, partially separated: establishing the mechanism between ambiguous loss and grief reaction among caregivers of patients with prolonged disorders of consciousness. Clin Rehabil 33(2):345–356. https://doi.org/10.1177/0269215518802339CrossRefPubMed

10.

World Health Organization (2018) International Classification of Diseases for Mortality and Morbidity Statistics 11th Revision

11.

Chiambretto P, Moroni L, Guarnerio C, Bertolotti G, Prigerson HG (2010) Prolonged grief and depression in caregivers of patients in vegetative state. Brain Inj 24(4):581–588. https://doi.org/10.3109/02699051003610490CrossRefPubMed

12.

Pagani M, Giovannetti AM, 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. Clin Psychol Psychother 21(5):420–426. https://doi.org/10.1002/cpp.1848CrossRefPubMed

13.

Cipolletta S, Gius E, Bastianelli A (2014) How the burden of caring for a patient in a vegetative state changes in relation to different coping strategies. Brain Inj 28(1):92–96. https://doi.org/10.3109/02699052.2013.857789CrossRefPubMed

14.

Ferrario SR, Baiardi P, Zotti AM (2004) Update on the family strain questionnaire: a tool for the general screening of caregiving-related problems. Qual Life Res 13(8):1425–1434. https://doi.org/10.1023/B:QURE.0000040795.78742.72CrossRef

15.

Giovannetti AM, Leonardi M, Pagani M, Sattin D, Raggi A (2013) Burden of caregivers of patients in vegetative state and minimally conscious state. Acta Neurol Scand 127(1):10–18. https://doi.org/10.1111/j.1600-0404.2012.01666.xCrossRefPubMed

16.

Corallo F, Bonanno L, Lo Buono V et al (2015) Psychological distress of family members of vegetative and minimally conscious state patients. Acta Medica Mediterr 31(2):297–302

17.

Sattin D, Minati L, Rossi D, Covelli V, Giovannetti AM, Rosazza C, Bersano A, Nigri A, Leonardi M (2015) The Coma Recovery Scale Modified Score. Int J Rehabil Res 38(4):350–356. https://doi.org/10.1097/MRR.0000000000000135CrossRefPubMed

18.

Sattin D, Lovaglio P, Brenna G, Covelli V, Rossi Sebastiano D, Duran D, Minati L, Giovannetti AM, Rosazza C, Bersano A, Nigri A, Ferraro S, Leonardi M (2017) A comparative study on assessment procedures and metric properties of two scoring systems of the Coma Recovery Scale-Revised items: standard and modified scores. Clin Rehabil 31(9):1226–1237. https://doi.org/10.1177/0269215517694225CrossRefPubMed

19.

Beck AT, Steer RA, Brown GK (1996) Manual for the Beck Depression Inventory-II. Psychological Corporation, San Antonio 78(2):490–498

20.

Predabissi L, Santinello M (1989) Spielberger’s State-Trait Anxiety Inventory (orm Y) Italian version. Giunti OS, Firenze

21.

Comunian A (2004) STAXI-2, State-Trait Anger Expression Inventory-2. Giunti OS, Firenze

22.

Chiambretto P, Moroni L, Guarnerio C, Bertolotti G (2008) Italian validation of the prolonged grief disorder questionnaire (PG-12). G Ital Med Lav Ergon 30(1 Suppl A):A105–A110PubMed

23.

Burridge LH, Barnett AG, Clavarino AM (2009) The impact of perceived stage of cancer on carers’ anxiety and depression during the patients’ final year of life. Psychooncology. 18(6):615–623. https://doi.org/10.1002/pon.1435CrossRefPubMed

24.

Lutzky S, Knight B (1994) Explaining gender differences in caregiver distress: the roles of emotional attentiveness and coping styles. Psychol Aging 9(4):513–519CrossRef

25.

Chiu YW, Yin SM, Hsieh HY, Wu WC, Chuang HY, Huang CT (2011) Bereaved females are more likely to suffer from mood problems even if they do not meet the criteria for prolonged grief. Psychooncology. 20(10):1061–1068. https://doi.org/10.1002/pon.1811CrossRefPubMed

26.

Mathias K, Kermode M, San Sebastian M, Davar B, Goicolea I (2019) An asymmetric burden: experiences of men and women as caregivers of people with psycho-social disabilities in rural North India. Transcult Psychiatry 56(1):76–102. https://doi.org/10.1177/1363461518792728CrossRefPubMed

27.

Ma M, Dorstyn D, Ward L, Prentice S (2018) Alzheimers’ disease and caregiving: a meta-analytic review comparing the mental health of primary carers to controls. Aging Ment Health 22(11):1395–1405. https://doi.org/10.1080/13607863.2017.1370689CrossRefPubMed

28.

Costa-Requena G, Cristófol R, Cañete J (2012) Caregivers’ morbidity in palliative care unit: predicting by gender, age, burden and self-esteem. Support Care Cancer 20(7):1465–1470. https://doi.org/10.1007/s00520-011-1233-6CrossRefPubMed

29.

Chan A, Ofstedal MB, Hermalin AI (2002) Changes in subjective and objective measures of economic well-being and their interrelationship among the elderly in Singapore and Taiwan. Soc Indic Res 57(3):263–300. https://doi.org/10.1023/A:1014787712820CrossRef

30.

Pinquart M, Sörensen S (2007) Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol B Psychol Sci Soc Sci 62(2):P126–P137CrossRef

31.

Vellone E, Piras G, Talucci C, Cohen MZ (2008) Quality of life for caregivers of people with Alzheimer’s disease. J Adv Nurs 61(2):222–231. https://doi.org/10.1111/j.1365-2648.2007.04494.xCrossRefPubMed

32.

Sun F, Hilgeman MM, Durkin DW, Allen RS, Burgio LD (2009) Perceived income inadequacy as a predictor of psychological distress in Alzheimer’s caregivers. Psychol Aging 24(1):177–183. https://doi.org/10.1037/a0014760CrossRefPubMedPubMedCentral

33.

Covelli V, Sattin D, Giovannetti AM, Scaratti C, Willems M, Leonardi M (2016) Caregiver’s burden in disorders of consciousness: a longitudinal study. Acta Neurol Scand 134(5):352–359. https://doi.org/10.1111/ane.12550CrossRefPubMed

34.

Norup A, Petersen J, Mortensen EL (2015) Relatives of patients with severe brain injury: growth curve analysis of anxiety and depression the first year after injury. Brain Inj 29(7–8):822–829. https://doi.org/10.3109/02699052.2015.1016451CrossRefPubMed

35.

Norup A, Siert L, Lykke Mortensen E (2010) Emotional distress and quality of life in relatives of patients with severe brain injury: the first month after injury. Brain Inj 24(2):81–88. https://doi.org/10.3109/02699050903508200CrossRefPubMed

36.

Corallo F, Bonanno L, Lo Buono V, de Salvo S, Allone C, Palmeri R, la Gattuta E, Rifici C, Alagna A, Todaro A, Bramanti P, Marino S (2017) Evolution of psychological condition in caregivers of patients with disorders of consciousness: a longitudinal study. Neurol Sci 38(7):1249–1253. https://doi.org/10.1007/s10072-017-2941-6CrossRefPubMed

37.

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 Inj 29(4):466–472. https://doi.org/10.3109/02699052.2014.989402CrossRefPubMed

38.

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. Clin Rehabil 28(7):717–725. https://doi.org/10.1177/0269215514521826CrossRefPubMed

39.

Bruno MA, Vanhaudenhuyse A, Thibaut A, Moonen G, Laureys S (2011) From unresponsive wakefulness to minimally conscious PLUS and functional locked-in syndromes: recent advances in our understanding of disorders of consciousness. J Neurol 258(7):1373–1384. https://doi.org/10.1007/s00415-011-6114-xCrossRefPubMed

Title: Caregivers of people with disorders of consciousness: which burden predictors?
Authors: Francesca G. Magnani
Matilde Leonardi
Davide Sattin
Publication date: 01-10-2020
Publisher: Springer International Publishing
Keywords: Affective Disorder
Affective Disorder
Anxiety
Published in: Neurological Sciences / Issue 10/2020
Print ISSN: 1590-1874
Electronic ISSN: 1590-3478
DOI: https://doi.org/10.1007/s10072-020-04394-6

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Caregivers of people with disorders of consciousness: which burden predictors?

Abstract

Objectives

Materials and methods

Results

Conclusions

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Objectives

Materials and methods

Results

Conclusions

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