Acta Neurol Scand DOI: 10.1111/ane.12392

© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd ACTA NEUROLOGICA SCANDINAVICA

Caregivers of patients with disorder of consciousness: burden, quality of life and social support Giovannetti AM, Covelli V, Sattin D, Leonardi M. Caregivers of patients with disorder of consciousness: burden, quality of life and social support. Acta Neurol Scand: DOI: 10.1111/ane.12392. © 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd. Objective – To evaluate quality of life (QoL) and its predictors, psychological burden and level of perceived social support in caregivers of patients with disorder of consciousness. Materials & Methods – World Health Organization Quality of Life-Bref (WHOQOL-BREF), State Trait Anxiety Inventory-Y (STAI-Y), Beck Depression Inventory (BDI-II), Prolonged Grief Disorder Questionnaire, Coping Orientations to Problem Experiences, StateTrait Anger Expression Inventory-2 (STAXI-2), and the Medical Outcome Study Social Support Survey (MOS-SSS) were administered. One-sample t-tests were performed to compare WHOQOL-BREF, STAI-Y and STAXI-2 mean scores to the respective normative sample (NS). Pearson correlation was calculated between time dedicated to patient’s care, WHOQOL-BREF, BDI-II, STAI-Y and MOS-SSS scores. Hierarchical multiple regression analyses were performed to evaluate which variables have predictive power on QoL. Results – A total of 129 caregivers, 68.2% female, mean age 52.8 years, were enrolled. Three WHOQOL-BREF domains were significantly lower. Anxiety and anger were in line with NS. 28.7% of the sample reported high level of depressive symptoms; 20.9% satisfied the prolonged grief disorder criteria. No differences emerged between caregivers and chronic ill patients’ scores at MOS-SSS. STAI-Y, BDIII and WHOQOL-BREF scores positively correlated. MOS-SSS domains inversely correlate with BDI-II scores. BDI-II results the most relevant predictor of QoL. Conclusions – Study results provided innovative information about caregivers’ poor QoL, difficulties in social support and high levels of burden. Time dedicated to care is not strictly related to burden, while social support perceived is highly associated with caregivers’ depressive symptoms that are strong predictor of poor QoL. Supportive intervention able to integrate psychological, social and environmental levels is needed.

Introduction

Patients with severe brain damage may have different outcomes after coma, from death to a complete recovery of consciousness. When the complete recovery of consciousness is not reached, patients may present a disorder of consciousness (DOC), a clinical condition that may include either vegetative state (VS) or minimally conscious state (MCS) (1). DOC may be transitory and

A. M. Giovannetti1, V. Covelli2, D. Sattin1, M. Leonardi1 1 Neurology, Public Health and Disability Unit and Coma Research Centre, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, Milan, Italy; 2 Universita degli Studi eCampus, Via Isimbardi, 10 - 22060, Novedrate (CO), Italy

Key words: anger; anxiety; burden; caregivers; depression; minimally conscious state; perceived social support; quality of life; vegetative state A. M. Giovannetti, Neurology, Public Health, Disability Unit and Coma Research Centre, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, Via Celoria 11 – 20133 – Milan, Italy Tel.: +39 02 2394 2188 Fax: +39 02 2394 2442 e-mail: [email protected] Accepted for publication February 17, 2015

precede recovery of cognitive function or may last indefinitely. Recent Italian studies on patients in VS or MCS reported a life expectancy over 15 years, demonstrating that these can be a chronic conditions that require long-term care and assistance (2–4). Patients in VS do not show any sign of sustained, reproducible, voluntary behavioural response to sensory and environmental stimuli, and they are unaware of themselves and their environment, 1

Giovannetti et al. but they have their eyes open and often sleep– wake cycles (5). Some patients evolve from this condition to MCS. They are wakeful and show minimally, but reproducible signs of awareness such as following simple commands, or providing response to sensory or visual stimuli (5). Parallel to patients’ assessment of behavioural responses, recent studies evaluated levels of functioning and disability taking into consideration the role of environmental factors in both adult and children with DOC. Environmental factors, particularly caregivers and family members, demonstrated to play a crucial role in patient’s level of functioning (6, 7), as well as during the assessment of patients with DOC, as it was highlighted in a recent article (8). The biopsychosocial prospective defines disability as the result of the interaction of patient’s health condition and environment; thus, it becomes of primary importance to study not only patients’ condition, but also their informal caregivers, in particular their quality of life and health status (9). Including studies on caregivers is particularly relevant considering that caring for children or adults with DOC has been demonstrated to be burdensome and highly demanding, in terms of psychosocial and financial difficulties, resulting in limited social relationships as well as of indoor and outdoor interests (10–12), with the largest sample of informal caregivers of patients with DOC ever interviewed, reporting high unfulfilled needs for information and communication (11). A new study investigated the relation between needs expression, level of burden and anxiety or depressive symptoms. In both the models – with anxiety or depressive symptoms, the general level of burden (encompassing the following dimensions: emotional burden, problems in social involvement, need for knowledge about the disease, satisfaction with family relationships and thoughts about death) mediated the relation between those symptoms and needs expressed. In particular, higher burden accentuates and lower burden mitigates the needs expressed by caregivers. These results suggest to carefully evaluate caregivers’ burden to properly answer to caregivers’ needs, especially in case of need for information and communication (13). In this regard, a recent study demonstrated that preoccupied attachment style and hopelessness together play a relevant role in predicting burden variability (14). Gender differences have been detected, particularly men caregivers have a better mental health state in comparison with female caregivers, whereas physical health was not different across 2

gender. High levels of anxiety symptoms were related to negative mental health outcomes in both genders, whereas depressive symptoms impact on female’s health only (15). These studies highlighted the complexity of burden and distress experienced by caregivers of patients with DOC. As reported above, informal caregivers dedicate a large amount of hours to care for their relative (10, 11), and this is significantly associated with the overall level of burden perceived by caregivers, while diagnosis (VS or MCS) and patients’ functioning (DRS score) are not clearly associated with high levels of burden (16); hence, no comparison between caregivers of persons in VS or in MCS has been performed in this study. Some studies have variously investigated the relation between coping strategies and caregivers’ burden (10, 11, 17–19). Higher levels of anxiety, depression, family strain and prolonged grief seem to be related to a more frequent use of avoidance strategies (17). Coherently with these findings, other studies showed that acceptance is highly protective, whereas denial, self-blame and emotion-focused strategies may have a negative effect (18, 19). These findings are supported also by one qualitative study that identified acceptance and focus on positive emotions and values as the means through which wives of men in VS construct meaning of their lived experience (20). In recent years, there is an increasing attention on the psychological burden of informal caregivers of patients with DOC, demonstrated by the increased number of publications particularly focussing on psychological efforts needed to react to such an unexpected event. A recent qualitative study went deeper into the comprehension of caregivers’ experience finding that the major effort is due to the difficulties in integrating past, present and future, so that the authors defined it as a ‘time gap experience’ (21). Another qualitative study revealed that a key psychological feature of being in relationship with a person with DOC is the ambiguity of loss, described as a condition without finality or resolution in which ‘a loved one is physically present but psychologically absent’ (22). No studies assessed anger in caregivers of patients with DOC, while this emotion has always been taken into consideration in all the studies on caregivers of patients with several other conditions. Usually, all range of emotions such as sadness, anger, guilt, regret, anxiety, loneliness, fatigue, shock, physical and emotional numbness are evaluated so as to provide proper support to caregivers too (23, 24). Beside lack of studies on anger, to date, no studies have provided specific information on

Psychological burden, QoL, social support of DOCs caregivers quality of life (QoL) of caregivers of patients with DOC although QoL is becoming more and more a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The only exception is a recent study that evaluates changes over time in QoL, prolonged grief and family strain of family caregivers, but it is focused only on caregivers of patients in VS (25). We believe QoL, defined as person’s perception of his/her own position in life in the context of the culture and value systems in which his/her lives and in relation to his/her own goals, expectations, standards and concerns, an important indicator to plan intervention aimed at supporting carers (26). Social support may greatly impact on caregivers’ QoL, but most of the studies focus on caregivers of patients with neurological diseases such as dementia (27, 28). In addition, when this dimension is taken into account with caregivers of patients with DOC (10–12), no specific assessment instruments have been used and there are no studies specifically aimed at assessing perceived social support in informal caregivers of patients with DOC. Hence, aim of this study is two folded: first, to evaluate caregivers’ QoL, psychological burden and level of perceived social support and second, to assess which variables may act as predictors of QoL. To our knowledge, this is the first study that assesses all these variables together. Moreover, it is the first time that the dimension of anger has been taken into consideration among psychological variables and that social support perceived by informal caregivers of patient with DOC has been measured trough a specific instrument, the Medical Outcome Study Social Support Survey. Materials and Methods

This observational study was conducted at the Coma Research Centre, between January 2011 and May 2013. The Coma Research Centre is a week services for diagnostic and prognostic evaluation of patient with DOCs, aimed at assessing nervous system conditions as well as neurobehavioural levels of response to external stimuli of patients with DOC, through the use of advanced technologies. Another aim of the Centre is to assess and monitor caregivers’ burden and QoL according to a biopsychosocial approach. Respondents were informal caregivers of adult patients in VS or MCS hospitalized at the neurological institute at the moment of the interview.

Caregivers were invited to participate to the study and consecutively enrolled, only if they were the main caregivers, it means the person mainly involved in terms of time dedicated to patient for informal caring and felt responsible for the relative with DOC (29). The protocol included a brief introduction on assessment instruments, modalities and aims of the study. It was composed of a socio-demographic questionnaire, with questions on financial details, and of seven self-reported questionnaires aimed at evaluating caregivers’ burden, QoL and social supports. All interviews were conducted by expert psychologists of the centre. Caregivers who agreed to participate signed an informed consent, and confidentiality was guaranteed so as to allow participants to freely express their opinions and feelings. The study was approved by the ethical committee of the Neurological Institute. Assessment protocol

To assess caregivers’ QoL, psychological burden (in terms of anxiety, depressive symptoms, prolonged grief disorder, coping strategies and anger) and level of perceived social support, the following questionnaires were selected: The World Health Organization Quality of Life-Bref (WHOQOL-BREF) (30, 31); State Trait Anxiety Inventory-Y (STAI-Y) (32, 33), Beck Depression Inventory (BDI-II) (34, 35), Prolonged Grief Disorder Questionnaire (PG-12) (36, 37), Coping Orientations to Problem Experiences (COPE) (38, 39), State-Trait Anger Expression Inventory-2 (STAXI-2) (40, 41) and the Medical Outcome Study Social Support Survey (MOS-SSS) (42, 43). The WHOQOL-BREF is a self-administered questionnaire aimed at evaluating QoL and it comprises 26 items, one item from each of the 24 facets of QoL, plus two items from the general facet on overall QoL and general health (not included in the scoring). Items assess ‘how much’, ‘how completely’, ‘how often’, ‘how good’ or ‘how satisfied’ the respondent felt in the last 15 days; a 5-point scale is always present, but different response scales are distributed across the domains (44). This self-administered questionnaire measures the following domains: physical health, psychological health, social relationships and environment. Scores are transformed on a scale from 0 to 100 to enable comparison between them (30, 31). The STAI-Y was used to evaluate feelings of apprehension, tension, nervousness and worry. It is composed of two factors namely state and trait 3

Giovannetti et al. anxiety. ‘State anxiety’ refers to emotions and feelings that develop in response to a particular situation, characterized by a temporary condition of worries and tension, and ‘trait anxiety’ is instead a more general and long-standing quality of stress that is characteristic of an individual’s personality. The STAI-Y is composed of 40 items ranging from 1 to 4 and both trait and state anxiety scores range from 20 to 80. Higher scores indicate higher levels of anxiety (32, 33). The BDI-II is 21-item self-report inventory able to assess low mood and depressive symptoms. Two different components contribute to its total score ‘cognitive factor’ that measures manifestations of pessimism, guilt, self-criticism and selfesteem and ‘somatic–affective factor’ that assesses symptoms such as loss of interest, loss of energy, changes in appetite and sleep, agitation and crying. BDI-II total score ranges from 0 to 63, where higher scores reveal more severe symptoms. BDI-II row scores are transformed into percentile as indicated by Ghisi et al. (35) to allocate participants in four categories of severity: low (less than 85), mild (85–90), moderate (91–95) and severe (more than 95). The PG-12 is a 12-item questionnaire helpful to diagnose the so-called prolonged grief disorder by detecting the presence of a pattern of specific symptoms of grief in people who have experienced an important loss. The questionnaire is divided into three sections: separation distress focusing on concerns about relative’s health condition; cognitive, emotional and behavioural symptoms (such as confusion about his/her role in life; difficulty in accepting the loss; inability to trust others and numbness since the loss); and reduction in occupational, social or other important activities because of the patient’s health condition (36, 37). COPE is a 60-item scale that evaluates 15 different coping strategies, to assess frequency of styles of coping in stressful situations. Each coping strategy score is composed of four items (score range from 4 to 16). The 15 coping strategies can be additionally organized in 5 factors: ‘problem oriented’, ‘social support’, ‘avoidance’, ‘positive attitude’ and ‘religion’. Higher scores suggest higher frequency of strategy utilization (38, 39). Anger was the other variable we wanted to evaluate in detail so as to have a full psychological profile of our caregivers. STAXI-2 is a 57-item inventory which measures intensity of anger experience, expression and control, using a 4-point scale (from ‘not at all’ to ‘almost always’). The instrument is composed of three parts: State-Anger, 4

Trait-Anger and Anger Expression Index (AXIndex). Hence, STAXI-2 provides an overall measure of total anger expression, six scales and five subscales. The State Anger Scale (S-Ang) assesses the intensity of anger as an emotional state at a particular time. It has three subscales composed of five items each: State Anger/Feeling (S-Ang/ F); State Anger/Verbal (S-Ang/V); and State Anger/Physical (S-Ang/P). The Trait Anger Scale (T-Ang) assesses how often angry feelings are experienced over time. It has two subscales of four items each: Trait Anger/Temperament (T-Ang/T); Trait Anger/Reaction (T-Ang-R). The Anger Expression and Anger Control scales assess four relatively independent traits every of which is composed of 8 items: Anger Expression-Out (AX-O) measures the expression of angry feelings towards other persons or objects in the environment; the Anger Expression-In (AX-I) evaluates holding in or suppressing angry feelings; the Anger Control-Out (AC-O) reports how person controls angry feelings by preventing their expression; and the Anger Control-In (AC-I) assesses how a person control angry feelings by calming down or cooling off. Row scores have to be transformed in T scores, based on age and gender, as reported in the manual (40, 41). Finally, the measurement of social support was carried out with MOS-SSS, a 19-item scale for measuring social support focusing on the perceived availability, if necessary, of various component of functional support. Item score ranges from 1 to 5 and total score (Overall Index) may range between 19 and 95. It includes multiple dimensions of support: ‘Emotional and Informational Support’ (EMI), measuring the expression of positive affect, empathetic understanding, and encouragement feeling expression and the provisions of advice; ‘Tangible Support’ (TAN), measuring the offering of material aid or behavioural assistance; ‘Affectionate Support’ (AFF), measuring the expressions of love and affection; ‘Positive Social Interaction’ (POS), measuring the availability of other persons to do fun things with you. Linear transformation (mean score-MIN)/ (MAX–MIN) 9 100) was used with both factors and overall scores so that the transformed scores range from 0 to 100 (42, 43). Statistical analysis

Frequencies and percentage were calculated to illustrate socio-demographic and financial characteristics of the sample. Descriptive statistics were also provided for WHOQOL-BREF, BDI-II, STAIY, PG-12, STAXI-2, COPE and MOS-SSS.

Psychological burden, QoL, social support of DOCs caregivers One-sample t-tests were performed to compare WHOQOL-BREF, STAI-Y and STAXI-2 mean scores to the respective normative sample and MOS-SSS to the sample of patients with chronic condition (42). Two-tailed Pearson’s correlations were calcula-ted between time dedicated to care for the patie-nts, MOS-SSS and scores at BDI-II, STAI-Y, WHOQOL-BREF. As suggested by Cohen (45), the following criteria were used for the interpretation of the correlation coefficients: 0.00– 0.10 = trivial; 0.10–0.30 = small; 0.30–0.50 = moderate; and >0.50 = large. Significance level a = 0.05 was adopted and Bonferroni’s correction was used to limit the 1st type error when multiple comparisons are made. A series of hierarchical multiple regression analyses were performed to evaluate the extent to which psychological variables, social support perceived, time from the event, age and educational level of the caregiver have predictive power on WHOQOLBREF domains. Variables were entered into the hierarchical regression in four blocks. Coping strategies were entered in the first block, depressive symptoms, level of anxiety and anger in the second, social support perceived as measured with MOSSSS as third, time from the event, age and educational level of the caregiver as fourth. All statistical analyses were performed using SPSS ver. 18.0 (IBM, Armonk, NY, USA). Results

A total of 129 caregivers, with a mean age of 52.81 (DS 13.05), accepted to take part in the study. They were mainly females and partners of the person with DOC. Considering caregivers’ years of school, the median is 13 (DS 4.63). The mean hours per day dedicated to care for the patients is 6. Focusing on working caregivers, 75% of the full time employed, and 52.9% of those with a part-time job dedicated more than 3 h per day in caring activities. At the moment of the hospitalization at the Coma Research Centre, 64.3% were caregivers of patient in VS. The majority of patients (75.2%) are hosted in long-term care, 14% in post-acute centres and 10.8% lived at home. The mean time from the event is 40 months. Patients were mainly male (68.9%), with a mean age of 49 years (SD 14.1). Only 13.2% of caregivers were members of lay associations of families with a relative in VS or MCS. Details are provided in Table 1. After Bonferroni’s correction for multiple comparisons, level of significance was a = 0.0011.

Table 1 Socio-demographic data on the sample of 129 caregivers

Number of caregivers

N = 129 n (%)

Gender Female 88 (68.2) Male 41 (31.8) Scholarity Primary or Middle school 60 (46.5) High school 48 (37.2) Degree 19 (14.7) Postgraduated 2 (1.6) Marital status Single 17 (13.2) Married 100 (77.5) Separated/divorced 7 (5.5) Widow 5 (3.9) Relationship to patient (the caregiver is..) Partner/spouse 61 (47.3) Son/daughter 18 (13.9) Parent 28 (21.7) Other 22 (16.4) Care hours Daytime care (

Caregivers of patients with disorder of consciousness: burden, quality of life and social support.

To evaluate quality of life (QoL) and its predictors, psychological burden and level of perceived social support in caregivers of patients with disord...
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