ENCEPHALOS 56, 36-48, 2019

Summary

Literature suggests that the care of patients withmajor mental disorders can place a significant bur-den on caregivers. Aim of this study was to assessburden and sense of family support in caregivers ofpatients with major mental disorders in relation todisease severity and level of functionality. The ZaritBurden Interview and the Family Support Scale(FSS) were administered in a sample of 152 primarycaregivers of a corresponding number of patientshospitalized in a Psychiatric Department of aGeneral Hospital during one year, diagnosed withschizophrenia or mood disorder according to ICD-10. Patients’ functionality was assessed with GlobalAssessment of Functioning Scale (GlobalAssessment of Functioning, GAF). Individual anddemographic variables of patients and their care-givers along with clinical variables from the psychi-atric history of patients were recorded. Parents ascaregivers (p=0.02), unemployed caregivers (t=2.99,p=0.003), caregivers of patients diagnosed withschizophrenia compared with caregivers of patientsdiagnosed with mood disorders (t=2.4, p=0.018) andof patients who were hospitalized under compulsoryadmission (t=3.18, p=0.002), stated higher burdenlevels. Disease duration (r=0.188, p=0.002), numberof hospitalizations (r=0.329, p=0.000) and caregiv-er’s age (r=0.239, p=0.003) correlated positivelywith scores on burden scale. Negative correlationswere observed between scores on burden scale andfamily support scale (r= -0.337, p=0.000), andbetween the burden scale and scores on GlobalAssessment of Functioning Scale (r= -0.511,p=0.000). Therefore, increased disease severity,patient’s reduced level of functionality and theadvanced caregiver’s age, emerge as importantvariables predicting high rates of caregivers’ burden.Family support, as a protective factor, appears tomoderate the burdensome consequences of care.

Keywords: burden, family support, major mentaldisorders, primary caregiver

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Research PaperFactors Affecting Burden on Caregivers of Patients with Major Mental Disorders:The Role of Patients’ Functionality and Caregivers’ Sense of Family Support

A. EVMOLPIDI, A. TSELEBIS, A. PACHI, K. GIOTAKIS, D. BRATIS, D. LEKKA, A. KARKANIAS, G. MOUS-SAS

Psychiatric Department, “Sotiria” General Hospital of ChestDisease, Athens, Greece

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Introduction

Major mental illnesses, mainly schizophreniaand affective disorders, are usually expected to run achronic course with varying trajectories, sometimesin the form of a steady or gradually deterioratingcourse and other times with improvements and acuteexacerbations with unpredictable effects on out-come1,2. These disorders are associated with a sub-stantial degree of distress and daily functional impair-ment, since the combination of symptoms that apatient exhibits alters thoughts, feelings, and behav-iors in distinct ways3,4.

Psychiatric symptoms listed in mental disor-ders display significant heterogeneity amongpatients, sometimes affecting behavior in varyingdegrees and causing mild to very severe functionalimpairment in different areas of life (work, interper-sonal relations). Often patients exhibit disorganizedbehavior and related symptoms that have disruptiveconsequences for the patient and lead to negativerepercussions in the family, as they affect all aspectsof life (self-care, vocational, social, family relation-ships, lack of autonomy)5,6.

Taking care of a relative with mental illnessraises all sorts of feelings in caregivers who usuallybelong to the care recipient’s immediate family7. Inthis way families are overwhelmingly the primary andoften the major source of support for their familymember with mental disorder, who exerts a stronginfluence upon other family members8. Family bur-den implies the negative outcomes of the home caresituation. Studies more or less agree about the dif-ferent aspects of burden and most of them makesome distinction in objective and subjective conse-quences9. Objective consequences include anyagent disrupting family life due to problems associat-ed with taking care of the patient. These agentsimpact on family finances, interpersonal relations,members’ health, social life, work, leisure time.Subjective consequences arise from the psychologi-cal distress that caregivers experience while copingwith these caregiving tasks and problems. Most fre-quently reported feelings experienced by caregiversare sadness, anger, embarrassment, frustration,despair, shame, guilt.

Literature suggests that the termprimary- informal caregiver10 is assigned to relativesor friends or even people beyond the immediate fam-ily, who are caring for a patient with a severe diseaseand chronic care needs (dementia, cancer, braindamage, mental illness). In other words, caregivers

are those who bear the entire burden of care, so werelate the meaning of caregiving with the concept ofburden. The term burden signifies what is difficult toendure either physically or emotionally.

As one result of deinstitutionalization policyover the last 60 years, most of the care for peoplewith serious mental illnesses now resides with infor-mal caregivers, who are often required to compen-sate for the lack of community resources. Availabledata show that 40-90% of patients with severe men-tal illnesses live with their families11, often served asan extension of the mental health system. As aresult, families constitute the basic source for receiv-ing support and feedback, while also appearing tofunction protectively against stressful events12.Family environments play a central role as modera-tors of the course of severe psychiatric illnesses,even if the direct causal role of family factors cannotbe established13. Alternatively stated, underlyingdisturbances in family systems may be evoked bythe emergence of illness symptoms in one or morefamily members, but these disturbances have recur-sive effects on the course of the individual’s disorder.The lack of a family network or the existence of dis-turbed relations inside the nuclear or extended familyenvironment appears to relate with higher stress lev-els and depression, impacting family caregivers14.On the other hand, a high degree of sense of familysupport that a caregiver receives from the membersof his family appears to alleviate the burden15.

The mental and physical health implicationsof caregiving depend on the characteristics of recipi-ents of care and their disease (age, gender, severityand type of symptoms, number of episodes), theirown characteristics (gender, proximity to patient, per-sonality characteristics, socioeconomic and culturalcharacteristics, subjective beliefs and atti-tudes)16,17, and other external factors (social andfamily support, stigma, accessibility to health servic-es)18.

Research indicates that 19, classification ofmental disorder, type and severity of psychiatricsymptoms20, duration and course of the disorder,aberrant behavior (aggressive, disorganized, bizarrebehavior)21, functional impairment22, insight,degree of caregiver- patient mutual contact23, a sup-portive environment, the adequacy of mental healthservices25 and accessibility to them26 along with thestigma associated with mental illness27, are all fac-tors that contribute to the burden of care.

Previously, caregivers’ burden has beenstudied for determining the feasibility of discharging

ENCEPHALOS 56, 36-48, 2019

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a patient into community, usually under the family’sprotection, considering that the majority of thesepatients remain functionally impaired with inter-episodic symptoms. Afterwards, the scientific interesthas been broadened to involve the physical, psycho-logical, social, and financial problems experiencedby families caring for a relative with a chronic or men-tal illness28. In recent years, there is a global move-ment toward enhancing the positive and protectivefactors that could medicate or moderate caregiverburden or ways to promote caregivers’ resilience29.Family and social support appears to be an importantprotective factor counteracting family burdens indiverse cultures30,31.

Aim

Purpose of the study is to evaluate burdenand sense of family support in caregivers ofpatients diagnosed with major mental disorders, inrelation to disease severity and level of functionality.Secondary purpose is to answer the followingresearch questions:

Is there any correlation between burden or sense of1family support in caregivers of patients with mentalillnesses and severity of mental illness?

Is there any correlation between the hospital admis-2sion process (voluntary or compulsory) and burdenor sense of family support?

Is there any correlation with demographic or clinical3variables (e.g. illness duration) and the relationshipbetween patient and kinship caregiver?

Are there any predictors of burden and number of4hospitalizations among available variables and whatis the relative contribution to their variation while con-trolling for other predictors?

Method

Sample

The study included patients diagnosed withschizophrenia or mood disorder according to ICD-10,hospitalized in a psychiatric clinic of a GeneralHospital, from 1/1/2017 until 31/12/20017, and theircaregivers who had the main responsibility for theircare. Only one caregiver was recruited per patient.Selection criteria for the caregivers were:

Having the most frequent contact withathe patient from all other family mem-bers.Having the primary responsibility for theb

care of the patient for at least one year.Does not exhibit any kind of psychiatriccillness, physical or mental disability orsubstance- related disorder, situationsthat hinder the caregiver’s ability to pro-vide care.

Excluded from the study were individualswith a low level of credibility in terms of their ability torespond to interviews and filling in the questionnaires(insufficient knowledge of the Greek language), notconsenting caregivers and patients who did not fulfillthe criteria for the diagnosis of schizophrenia ormood disorders according to ICD-10.

Instruments

Sociodemographic and clinical variables.Sociodemographic characteristics of the participants,both patients and their caregivers were recorded,such as age, gender, employment status, relation-ship of the caregiver to the patient, along withpatient’s legal status at admission (voluntary or com-pulsory) and number of hospitalizations.Zarit Burden Interview (ZBI). To assess the degree ofsubjective burden a 22-item questionnaire32 wasadministered to the primary caregiver during theevaluation interview. The questions covered theareas most frequently mentioned by caregivers asproblems in providing care for patients with chronicmental illness, including caregiver’s health, psycho-logical well-being, finances, social life and the rela-tionship between the caregiver and the impaired per-son. The 22 statements reflect the feelings of burdenreported by primary caregivers about the impact ofthe patient’s disabilities on their lives and for eachitem participants are asked to indicate how often theyfelt that way. The responses are rated on a Likertscale of 0 (never) to 4 (almost always) with a totalscore of 0–88. The Burden Interview is scored byadding the numbered responses of the individualitems. Higher scores indicate higher levels of care-giver burden. Clinical cut-off scores graded ZBIseverity as mild (range 0–20), mild to moderate (21–40), moderate to severe (41–60) and severe (61–88).Though the ZBI was initially developed to assesscaregiver burden in dementia, it has also shown sat-isfactory psychometric properties in assessing care-giver burden in schizophrenia33 and bipolar disor-der34. ZBI has been translated and validated inGreek in a sample of caregivers of patients with men-tal disabilities35. Family Support Scale (FSS). To evaluate perception

ENCEPHALOS 56, 36-48, 2019

39ENCEPHALOS 56, 36-48, 2019

of family support we used the family support scalewhich aims to record the sense of support that asubject receives from the members of his/her family(with whom he/she lives). The scale consists of 13items, which are answered on a Likert scale, rang-ing from 1 “I disagree a lot” to 5 “I agree a lot”. Thescale is self-administered and it is not recommend-ed to be given to individuals that live alone, since allof the items focus on the interrelations of individualsthat live together. High scores correspond to anincreased sense of family support. The particularscale has been translated and standardized inGreek language 36. Global Assessment of Functioning (GAF). Patients’level of functioning was assessed during their hospi-talization with the Global Assessment of Functioningscale of DSM-IV37. This is a numerical scale (1-100) used by mental health specialists to measurethe social, occupational and psychological function-ing of adults38 30. The GAF is the modified versionof the Global Assessment Scale38, which hasproven validity and reliability in Greek language39.

Procedure

The study protocol was approved by theethics committee of the Hospital and all participantsgave written informed consent. Their participation inthe survey was voluntary. Patients were interviewedby a psychiatrist and evaluated on the severity oftheir disorder and other clinical variables. Caregiverscompleted the Zarit burden interview and the FamilySupport Scale between the 3rd and 5th day afterpatients’ admission to the hospital, so that relief forcaregivers from hospitalization does not interferewith results. The study was cross-sectional and con-ducted between January 2017 and December 2017.

Statistical Analysis

SPSS software, version 24, was used for thestatistical analysis. All variables were assessed withthe use of descriptive statistics and values wereexpressed as the mean ± standard deviation for con-tinuous variables. Statistical significance was set at p< 0.05 (two-tailed).

Results

Sociodemographic profile of caregiversThe study included 152 primary- informal

caregivers with a mean age of 54.87 ±12.84 years,

predominantly females (54 men, 98 women). Themajority of the caregivers were parents (48%), thenspouses of patients (21.1%), siblings (18.4%), off-springs (5.3%) and neighbors or friends (7.3%).Regarding employment status 44.7% of caregiversreported being employed and the rest (55.3%) wereinvolved in housekeeping (table 1).

Sociodemographic and clinical variables of patientsA total of 152 patients participated in the

study, 73 men and 79 women, with a mean age of41.03 ± 13.14 years. The vast majority stated beingunemployed (83.4%) whereas only 16.6% reportedhaving a job. Mean duration of illness was 11.21 ±10.34 years and average number of hospital admis-sions was 3.09 ± 2.59. 46.1% of patients were invol-untary admitted and the rest (53.9%) were voluntaryadmitted. Regarding patients’ diagnosis 58.6% werediagnosed with schizophrenia and 41.4% with mooddisorders (table 2).

Scores on outcome variablesThe mean scores of the caregivers on Zarit

Burden Interview and the Family Support Scale were39.05 ± 15.179 and 48.06 ± 11.569, respectively.8.6% of the caregivers expressed severe burden,35.5% moderate to severe, 44.7% mild to moderateand 11.2% little or no burden. Female caregiversstated reduced sense of family support comparedwith males (45.55±11.094 versus 52.06±11.283,t=3.198, p=0.002), results that do not differ signifi-cantly from the reference values in the general pop-ulation (Summary independent t-test p>0.05)36.Mean GAF scores of our patients were 54.97 ±16.04.

Differences on outcome variables as to sociodemo-graphic characteristics and the illness profile ofpatients

As to caregiver’s gender no differences wereobserved on Zarit Burden Interview scores, but care-giver’s relationship to patients revealed significantdifferences on burden scores (one-way ANOVA,p=0.02). Parents as caregivers stated higher burdenscores compared with children (t=2.027, p=0.046)and friends (t=2.49, p=0.015), (ANOVA Bonferroni).Unemployed caregivers reported higher burdenscores (t=2.99, p= .003) and reduced sense of familysupport (t= -2.012, p=0.046).

Caregivers of patients with schizophreniacompared with caregivers of patients with mood dis-orders had significantly higher burden scores (t=2.4,

40 ENCEPHALOS 56, 36-48, 2019

p=0.018) and reduced sense of family support (t= -2.262, p=0.026). No differences were observed asto sociodemographic characteristics (age, gender,relationship with patients, employment status)among caregivers of patients diagnosed with schiz-ophrenia and caregivers of patients diagnosed withmood disorder, indicating that the differences in thecaregiving experience and sense of family supportbetween the two groups could not be accounted forby these variables.

Patients with schizophrenia were youngercompared with patients with mood disorder(38.14±12.69 versus 44.86±12.82, t= -3.19, p=.002), but no other differences in sociodemographiccharacteristics (gender, employment status) wereobserved. As to clinical characteristics, there was nosignificant difference in duration of illness, butpatients with schizophrenia were significantly moreoften hospitalized under compulsory admissioncompared with patients with mood disorder(x2=14.624, p= .001). Also, patients with the diagno-sis of schizophrenia compared with patients diag-nosed with mood disorder had a significantly lowerlevel of functioning (t= -3.40, p= .001).

Caregivers of patients who were involuntaryadmitted stated higher burden scores (t=3.18,p=0.002) and compulsory admitted patients com-pared with voluntary admitted patients had a signifi-cantly lower level of functioning (t= -2.85, p=0.005).

Correlations among continues variablesScores on Zarit Burden Interview correlated

positively with total duration of patient illness(r=0.188, p=0.002), number of hospital admissions(r=0.329, p=0.000) and number of compulsoryadmissions (r=0,290, p=0.000). Also, the age ofcaregiver correlated positively with burden scores(r=0.239, p=0.003).

Negative correlations were observed amongscores on Zarit Burden Interview and scores onFamily Support Scale (r=0,337, p=0,000) indicatingthat poor family support was associated with higherburden scores. Total number of admissions (r= -0.195, p=0.028) and compulsory admissions (r= -0.263, p=0.003) were negatively associated with thesense of family support. Finally, scores on GlobalAssessment of Functioning scale correlated nega-tively with scores on Zarit Burden Interview (r= -.511, p= .000) and positively with scores on FamilySupport Scale (r=0.257, p=0.004).

Differences on illness course (number of hospital-izations) as to burden and family support

In order to give some indication of the mag-nitude of the difference between high and low familysupport and burden, we contrasted patients aboveand below the median value of scores on familysupport and burden scales. In this way patients withcaregivers defined as high on family support hadsignificantly less compulsory admissions thanpatients with caregivers defined as low on familysupport (0.61±1.2 versus 1.41±1.8, t=2.885,p=0.005). As expected, patients with caregiversreporting high burden had significantly more totaladmissions (3.73±2.9 versus 2.55±2.16, t= -2.791,p=0.006), and more compulsory admissions(1.57±1.86 versus 0.72±1.39, t= -3.136, p=0.002),than patients with caregivers reporting low burden.

Predictors for burden Stepwise multiple regression analysis was

conducted to identify the best predictors of thedependent variable ‘scores on Zarit BurdenInterview’ among the independent variables thatshowed significant relationships in the correlationanalyses (scores on Global Assessment ofFunctioning, scores on family support scale, totalhospital admissions, compulsory admissions, care-givers’ age and illness duration) and to examinetheir contribution to the variation (expressed as R2)in the dependent variable. The final regressionmodel showed that from all variables entered intothe equation, ‘scores on Global Assessment ofFunctioning’, ‘scores on family support scale’ and‘age of caregiver’ were significant predictors of‘scores on Zarit Burden Interview’, explaining 36.3%of the variance (F3,121=23.024, p=0.000). ‘Scoreson Global Assessment of Functioning’ explained25.1% of the variance (β coefficient -0.411, p=0.000), ‘scores on family support scale’explained 8.1% (Beta coefficient -0.298, p=0.000), and ‘age of caregiver’ accountedfor an additional 3.1% of the variance of ZaritBurden Interview scores (Beta coefficient 0.177,p=0.017), (table 3).

Predictors for number of compulsory admissions On the basis of the results of the bivariate

analyses, a stepwise multiple regression test wasperformed to identify the best predictors of thedependent variable ‘number of compulsory admis-sions’ among the independent variables that

showed significant relationships (scores on GlobalAssessment of Functioning, scores on burden scaleand family support scale and illness duration) and toexamine their contribution to the variation(expressed as R2) in the dependent variable. Thefinal regression model showed that from all vari-ables entered into the equation, ‘scores on GlobalAssessment of Functioning’, and ‘scores on familysupport scale’ were significant predictors of ‘numberof compulsory admissions’ explaining 21% of thevariance (F2,122=16.228, p=0.000). ‘Scores onGlobal Assessment of Functioning’ explained 18.4%(Beta coefficient -0.386, p=0.000) and ‘scores onfamily support scale’ accounted for an additional2.6% (Beta coefficient -0.168, p=0.046), (table 4).

Again, on the basis of the results of thebivariate analyses, a stepwise multiple regressiontest was conducted to determine the best predictorsof ‘number of compulsory admissions’, for the schiz-ophrenic patients of our sample, using scores onGlobal Assessment of Functioning, scores on bur-den scale and family support scale as predictor vari-ables. The results indicated that ‘scores on GlobalAssessment of Functioning’ and ‘scores on familysupport scale’ together accounted for 20.9% of thevariance (F2,71=9.363, p=0.000). Of these variables‘Scores on Global Assessment of Functioning’explained 14.3% (Beta coefficient -0.38, p=0.001)and ‘scores on family support scale’ accounted foran additional 6.6% (Beta coefficient -0.256,p=0.018). Scores on burden scale did not contributesignificantly to the regression model, (table 5).

Discussion

The present study confirms that patients’general functionality was the strongest predictor ofcaregivers’ burden among the various factorsassessed40. Raising levels of functionality and com-petence reduces the caregiver burden41. Suicidal orviolent behavior, unjustified or irrational demands,the presence of hallucinations, delusions or disor-ganization and lack of cooperation42, along withgreater severity of negative symptoms, persistentdepressive symptoms and deficiency in managingbasic life skills43, are the two behavior-relateddomains associated with increased caregiver bur-den. Patients’ severity of psychopathology andreduction of psychosocial functioning were identifiedas important determinants of family functioning inmajor mental illness and as contributing factors that

affect caregivers’ burden and psychological dis-tress44,45. Inversely, caregiver burden adds stressto the living environment and can negatively influ-ence the functioning of the patient46.

Furthermore, our research revealed thenegative correlation between caregiver burden andsense of family support. When caregivers sensedless family support in managing their patients, theyexperienced and reported greater burden. Strongfamily values in Mediterranean families contribute tothe sense of concern and obligation that familymembers have to care for their identified patient47.Within families of individuals with mental illnessextremes in conflict, occupational and financial diffi-culties, illnesses, losses and changes in familystructure are frequently observed (48). Studies indi-cate that negative emotions and stigma issues cre-ate a morbid family environment found to have asignificant impact on patient and on the rest of fami-ly members, affecting intrafamilial relationships andraising the levels of burden49,50.

Family dynamics and roles have to beadjusted to accommodate the illness. The study ofintrafamilial transactions, focusing on cohesion, flex-ibility and communication of the members to thefamilies of people with severe psychiatric disorders,is of paramount importance and can set the founda-tion for understanding the interaction and communi-cation patterns in families of these patients.Literature suggests that unbalanced levels of familycohesion and flexibility are associated with a highlycritical attitude toward the patient, which, in turn,may lead to greater burden and higher levels of psy-chological distress for caregivers51. Thereafter,caregiver-patient relationship seems to shape thebidirectional association between caregiver burdenand patient distress52,53.

The demographic characteristics of oursample resemble those of other surveys conductedin caregivers54, 55. Female caregivers constitutedthe majority in our study (64.5%), possibly reflectingthe fact that according to sociocultural expectationsmostly females assume the care of patients56. As tocaregiver’s gender no differences were observed onburden scores, although literature reports thatfemale caregivers are likely to face increasing levelsof burden57. However, our data indicated that theage of caregiver correlated positively with burdenscores58. In other words caregiver burden increas-es with advancing age of the caregiver. Literaturesuggests both results; either that older caregivers

41ENCEPHALOS 56, 36-48, 2019

display increased levels of burden mainly due to lim-ited physical strength, or that they report feeling lessburdened as they usually face the problem of caringfor a patient with mental illness for longer and haveprobably adapted to the demands of the situa-tion59. Other research supports that younger care-givers are more likely to experience caregiverstress9. It is worth mentioning that the sense of sub-jective burden mainly depends on the meaningattributed by the caregivers themselves, as well ason certain characteristics of their personality60-63.

From the patient-related factors, the numberof hospitalizations had a positive association withcaregiver burden. The higher the burden for care-givers, the more frequent the hospitalizations for thepatients, most of times against their will64,65.Usually the long- term process of the diseaseincreases the burden on families rendering themunable to provide adequate care for the patient. Thedemanding work of caregiving can put caregivers atrisk of engaging in neglect or constantly seekingsupport from health-care system usually resulting infrequent hospital readmissions 66. According to ourdata, sense of family support independently predict-ed the number of compulsory admissions, especiallyin patients with schizophrenia. Whether this is theresult of reduced severe relapses or increased abili-ty to respond to them when there is adequate familysupport, without the need for involuntary hospitaliza-tions, is a matter of debate that cannot be confirmedby our study. A possible mediator between the effectof family support and the outcome might be thedegree of compliance with medication67. In thisregard, family support has an important predictiverole in the outcome of the treatment process68.

Caregivers of patients who were involuntaryadmitted stated reduced sense of family support andhigher levels of burden. This is possibly justified bythe lower level of functioning and the grossly disor-ganized behavior displayed by patients hospitalizedunder compulsory admission. These patients arealso characterized by medication non adherenceand lack of insight. Research indicates that the needfor involvement of caregivers in the decision oninvoluntary hospitalization causes feelings of anxi-ety, guilt, shame and self-reproach69.

Regarding patients’ diagnosis, the extent ofburden among caregivers of schizophrenic patientswas significantly more than those of mood disor-der70,71. Isolated studies offer contradictory evi-dence as to whether a caregiver’s burden is associ-ated with the patient’s psychiatric diagnosis72. A

large number of studies have demonstrated thatalthough the extent of burden in terms of scales andscores may be somewhat stronger in schizophrenia,the nature of the burden is largely similar in the twodisorders73,74. Other studies suggested that it wasnot the diagnosis that was linked to the burden, butthe patient’s degree of impairment in daily life75, 76.Similarly, in our study, this quantitative differencebetween the two diagnoses was probably due to theincreased functional impairment seen in patientswith schizophrenia compared to patients with amood disorder and to the fact that schizophrenicpatients were hospitalized mostly under compulsoryadmission, indicating increased severity of symp-toms. However, this approach in terms of increasedclinical severity characterizing patients with schizo-phrenia is frequently challenged and contrary toexpectations caregivers’ burden appears to beincreased with regard to violent and suicidal behav-iors of patients with a mood disorder diagnosis inacute phase53. In addition, a recovery model ofmental illness does not necessarily imply a return topremorbid level of functioning, which is also true forpatients with bipolar disorder who sometimesremain functionally impaired with inter-episodicsymptoms46.

Finally, significant differences wereobserved across levels of burden with respect tocaregiver occupational status. In our study unem-ployed caregivers stated higher levels of burdencompared with employed caregivers77,78. Probablythe amount of burden experienced by unemployedcaregivers is their reaction against the exclusivecare of the patient in combination with the absenceof occupational or social life and therefore lack of ameaningful role54. Studies indicate that the majorityof caregivers may become overwhelmed by thedemands associated with the tasks involved in ren-dering care to a patient79,80. Regardless of amountof care provided, caregivers may become increas-ingly more distressed if they are unable to partici-pate in valued activities and interests, due to theneed for constant surveillance and monitoring thepatient’ s behavior. Feelings of loneliness and isola-tion, fearfulness, and being easily bothered, as thedemands of caregiving limit their personal time, incombination with concerns about patients’ long-term outcome and fewer financial resources to meetcare demands, cause particular distress for care-givers. On the other hand, employment providessome caregivers respite from ongoing care activitiesand serves as a buffer to distress34. Employed

42 ENCEPHALOS 56, 36-48, 2019

caregivers probably have higher self-esteembecause of their occupation and they experiencefewer negative reactions in their social settings as aconsequence of the illness of their family member,but according to other studies81,82 attempting tobalance caregiving with other activities often alsoresults in an increased sense of burden.

In general, the burden on caregivers impos-es negative consequences not only upon them-selves but also upon their recipients of care and, byextension, upon health services. Identification andmoderation of aggravating factors, as well as theenhancement of protective factors (family and socialsupport, caregiver’s skills) can reduce the burdenand the negative impact on caregivers and at thesame time improve patient outcomes. Where appro-priate, clinical counseling (identifying burden, psy-choeducation, supportive psychotherapy), or morecomplex interventions (family psychotherapy)reduce the burden and improve the quality of life forcaregivers. Therefore, better understanding of care-giver burden may lead to the development of a moreefficient and more effective health care system83-85.

Conclusions

Severe mental illnesses often cause signifi-cant functional impairment and loss of autonomy,usually leading family members to assume the care-giving role. Family caregivers experience seriousadverse physical and mental health consequencesfrom their physically and emotionally demandingwork as caregivers and reduced attention to theirown health and health care.

Psychotic-spectrum disorders are complexbiopsychosocial conditions, and family issues areimportant determinants of prognosis. The involve-ment of the family in the overall treatment plan is ofgreat importance86, 87, since sense of family sup-port serves as a buffer, mitigating burden. Mentalhealthcare providers are often confronted withrequests for family support and information on theavailability of services for patients and caregivers88.

Multicomponent interventions for patientsand caregivers offer psychological support, counsel-ing sessions, psycho-educational programs (aboutthe nature of the disorder, the available therapies,the hospital admission process, early signs ofrelapse, seek medical help in time), psychotherapy,problem-solving, and coping skills89,90.Psychotherapeutic interventions for caregivers91

and psychosocial treatments for patients92,93reduce burden, relapses and hospital admissionsand increase sense of family support and patients’level of functioning. Improve access to healthcare services94, fight the stigma around mental ill-ness and above all the psychosocial rehabilitation ofpsychiatric patients95 are all issues included in thehealth policy agenda, lagging behind possibly due tolimited resources both human and financial.

Limitations

The cross-sectional design of the study pre-cluded us from making inferences about causality.There may be a selection bias because readmis-sions were not included in the sample and onlycaregivers of inpatients were included who may bemore burdened than caregivers of outpatients. Alsothe instrument used to assess caregivers’ burdenonly measured subjective burden.

Conflict of Interest: The authors declare that theyhave no competing interests.

ENCEPHALOS 56, 36-48, 2019 43

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