Sample
Our sample is composed of the caregivers of patients treated in a Community Mental Health Center (CMHC), during the three-month period of study, in accordance at our inclusion and exclusion criteria.
We selected caregivers in accordance with the definition of Martinez-Martin [42]: person who is not a professional caregiver, who lives with or close to the assisted patient and is directly involved in the treatment and caring of the patient's health problem.
Inclusion criteria:
Caregivers of patients diagnosed with schizophrenia spectrum disorders treated in local CMHC for at least 1 year.
Caregivers and their assisted patients who provide valid informed consent to participate in the study.
Exclusion criteria:
Caregivers of patients diagnosed with other disorders or not treated in local CMHC or treated for period less 1 than year.
Assisted patients not able to provide valid study consent due cognitive decline previously diagnosed by CMHC psychiatrists.
Caregivers and/or their assisted patients who refused valid study consent.
Caregivers involved in this study did not receive any payment for their assistance; professional caregivers, such as community mental health nurses or workers who receive a salary for giving patient assistance, were excluded.
Design and period of the study
This observational study is aimed at evaluating the caring burden and empathy in caregivers by administering two scales: Zarit Burden Interview (ZBI) [13] and Balanced Emotional Empathy Scale (BEES) [43].
The study period of data collection and analysis lasted three months from 21 July to 11 October 2019. The data collection period was dedicated to identification of suitable caregivers who accepted to participate in the study, and to whom the two scales were subsequently administered.
Scales
1) Zarit Burden Interview (ZBI) [13] is a scale which can be autonomously completed, initially consisting of 29 items and currently reduced to 22 items. Each part of the scale is composed of statements which correspond to 5 preferences, ranging from 0 (never) to 4 (almost always), depending on the level of distress. Scores ranging from zero to one are evaluated as negative, while scores from two to four are regarded as positive. The ZBI has a score ranged between 0 and 88.
The ZBI 22-item version is one of the most used scale for measuring caregiver burden, which includes physical, mental, social, and economic aspects of caregiving. Originally developed to evaluate the burden of dementia patient caregivers, the ZBI has been widely applied in measuring caregiver burden of patients affected by mental illnesses. ZBI has shown good reliability and validity [44,45].
Authors who performed factor analysis of ZBI highlighted the two-factor model, which addresses “personal” and “role” tension. With this model, the most certain information is provided regarding the reliability and validity of the questionnaire, with a Cronbach’s alpha coefficient of 0.92 [46]. The two-factor model provided results that were not related to age, gender, language, marital status, life situation or employment status and, therefore, ZBI can be used in various populations.
The ZBI score obtained determines four different conditions based on the severity of the emotional load:
<21 not present or mild burden
22-40 mild to moderate burden
41-60 moderate to severe burden
> 60 severe burden.
The Italian version of ZBI was validated in 273 caregivers of patients with dementia [47]. We used the Italian version of ZBI which is not under license as reported by the authors who had previously used it [45,47].
2) Balanced Emotional Empathy Scale (BEES) is a scale used to quantify the level of emotional empathy, i.e. the degree of involvement in others’ emotions, the ability to emotionally understand the other in his uniqueness and originality. The BEES, is a unidimensional measure of affective or emotional empathy.
The BEES is a scale, which can be autonomously completed. It is a self-reported measure of one’s ability to experience another individual’s emotions or to feel what someone else feels. The BEES was developed from the Emotional Empathic Tendency Scale and, as reported by Mehrabian (1996), who constructed the scale, the data pertaining to the process of validation relative to the BEES largely refer to the process of validation in the Emotional Empathic Tendency Scale [43]. It is composed of 30 items, of which 15 items expressed by affirmations with positive orientation and the other 15 with negative orientation. The participants must express their degree of agreement/disagreement in a scale of 7-point Likert, with a score ranged between 0 (completely disagree) and 6 (completely agree). The BEES has been validated in the Italian version [48]. We obtained the BEES use license after purchasing the scale from the Giunti Psychometrics S.r.l. Publisher.
BEES investigates the following five dimensions:
- "Impermeability to the emotional feelings of others", where high scores in this dimension denote a difficulty in empathizing, higher scores of two standard deviations than the average are characteristic of subjects who are described as cold, distant or insensitive;
- "Susceptibility to the emotional feelings of others", this dimension is opposite to the previous one; in fact high scores indicate very empathic subjects, who lack the distinction between themselves and the other, while very low scores denote people with characteristics hardness and insensitivity;
- "Emotional spread responsiveness", is composed of items that are negatively oriented with respect to the construct measured. Therefore, very high scores indicate closure towards experiences potentially capable of arousing emotions that are difficult to manage and the tendency to avoid moving situations, while low scores indicate individuals with a strong imagination and propensity to fantasize and get excited;
- "Susceptibility to emotional involvement with people nearby", in which the items describe emotional situations denoted by the actual presence of the other; high scores indicate the presence of characteristics closer to emotional contagion, on the contrary, low scores denote coldness, detachment or cruelty;
- "Tendency to avoid emotional involvement with fragile people", measures the specific difficulty of empathizing with the emotional experiences of the elderly and children; high scores indicate emotionally immature, self-centred individuals, while low scores indicate individuals suitable for caring for children and the elderly, even if they are handicapped or disabled.
Cronbach's alpha of the total BEES varies between 0.83 and 0.87 [43,48].
The total score of BEES indicates, if above average (M: 32.0; SD: 18.0 in a range between 7 and 56.5 in general population), individuals with high emotional empathy, who are able to respond empathically to the emotions and behaviour of others, while, if below average, it indicates individuals who have difficulty empathizing.
BEES has been used to evaluate empathy level in different kinds of populations [49,50,51]. In particular, BEES has been used to score the level of empathy in caregivers of patients affected by cancer [52], showing that patient’s physical pain can be correlated with caregiver’s distress. To date, there are no known studies that have used the BEES scale to assess the level of empathy in caregivers of patients diagnosed with schizophrenia.
Modality of data collection
The questionnaires were administered by the same researcher, who was not involved in the patient's care and treatment. Over the three months of data collection, the same researcher asked to each caregiver who went to CMHC during opening hours from Monday to Saturday to take part in the study, providing adequate information. The decision of caregivers to voluntarily participate in the study was respected.
If caregiver decided to participate in the study, he/she was asked to sign the informed consent and the privacy form and, subsequently, ZBI and BEES were administered. Caregivers autonomously completed the two scales. Those who were not independently able to fill them out were helped to compile the scales by the researcher.
Subsequently, the same researcher filled in the form with the demographic and clinical data of the caregiver and the relative assisted patient, after having obtained the assisted patient’s consent.
Selected variables
The following socio-demographic variables of caregivers were collected: age, gender, relationship with assisted patient (son, father, mother, etc.), schooling, work, daily time spent in caregiving.
The following clinical variables of patients assisted by our caregivers were collected: age, gender, psychiatric diagnoses in accordance with ICD-9-CM [53], organic comorbidity, substance use, period of treatment in CMHC, number of psychiatric hospitalizations, Global Assessment of Functioning (GAF) and Clinical Global Impression-Severity (CGI-S) scores, therapeutic adherence. For each patient, the variables were collected retrospectively from the medical charts and informatics system of the CMHC.
Statistical analysis
We performed descriptive statistical variable analysis: mean and Standard Deviation (SD) for continuous variables; percentages for categorical variables. Cronbach's alpha coefficient was used to highlight the internal consistency of both ZBI and BEES. We correlated the two scale scores through the Spearman correlation test. The ZBI score and total and 5 dimensions BEES scores were correlated with the selected variables by means of multiple linear regression. We used the backward stepwise selection, considering variables to be removed from the model if their p-value was ≥ 0.2, considering for re-entry the variables previously deleted with a p-value was < 0.1. We adopted the probability statistic level of significance ranging between p < 0.05 and two-sided alpha level of 0.05. The statistical analysis was conducted with the STATA 12 software program version (2011).