Factors associated with burden in primary caregivers of mentally ill patients

\ PERGAMON

International Journal of Nursing Studies 25 "0888# 62Ð72

Factors associated with burden in primary caregivers of mentally ill patients N[ Ricarda\\ J[!P[ Boninb\ H[ Ezerc b

a Faculte des sciences in_rmieres\ Universite de Montreal\ Montreal\ Canada Centre de recherche Fernand!Se`uin\ Ho¼pital Louis!H[ Lafontaine\ Montreal\ Canada c School of Nursin`\ McGill University\ Montreal\ Canada

Received 3 September 0886^ received in revised form 05 July 0887^ accepted 10 July 0887

Abstract The objectives of this study are to describe caregivers| subjective burden and to identify the predictors of burden in primary caregivers of mentally ill outpatients recruited from eight hospitals in Montreal\ Quebec\ Canada[ Patient and primary caregiver variables\ were regressed on perceived burden using hierarchical regression analysis[ The variables describing the patient|s current state contributed the most to explaining variance in subjective burden[ The variables related to psychiatric history and to outpatient treatment also explained a signi_cant proportion of the variance in the burden scores[ Better understanding of the factors associated with subjective burden will enable researchers and practitioners to identify those caregivers that are at greater risk for higher levels of burden\ and to develop more focused and appropriate interventions[ Þ 0888 Elsevier Science Ltd[ All rights reserved[ Keywords] Caregivers^ Burden^ Mental disorders

0[ Introduction Over the last 29 years\ changes in approach in the _eld of mental health\ the emergence of community!based methods of treatment\ and the decrease in economic resources have led to a shift in the responsibility for the care of the ill individual from the institution to the family[ Having once been identi_ed as the source of the illness\ blamed and excluded from involvement in care\ families are now seen as a principal source of support and an important partner in the rehabilitation of the mentally ill[ The changes in the mental health system have had a number of important consequences[ They have resulted in an increase in the families| daily responsibilities and sources of stress at a time when they are also dealing with the uncertainty and stigma associated with a chronic psychiatric illness in a close relative[ The responsibilities

 Corresponding author[ Tel[] 990 232 5268^ fax] 990 403 232 1295^ e!mail] ricardnÝscinf[umontreal[ca[

are most often assumed by the mother\ wife or daughter of the ill person\ who\ in becoming the primary caregiver\ carries the heaviest part of the family burden "Cook\ 0877^ Chafetz and Barnes\ 0878^ Coward and Dwyer\ 0889^ McGilloway et al[\ 0886^ St Onge and Lavoie\ 0883\ 0886#[ It is within this context that the results of a cross! sectional correlational study of subjective burden in fam! ily members caring for the mentally ill at home is presented[ Subjective burden is de_ned as the emotional response of the caregiver to the behavioural and social di.culties of the ill person\ and to the consequences of the presence of the ill person on the household[ The objectives of this study are to describe the caregivers| subjective burden and to identify those characteristics of the patient and caregiver\ which a}ect the level of car! egiver burden[ Better understanding of the factors associ! ated with subjective burden enables us to identify those caregivers who are most likely to experience greater burden\ to decide for whom interventions should be directed\ and to o}er a more appropriate professional intervention[

9919Ð6378:88:, ! see front matter Þ 0888 Elsevier Science Ltd[ All rights reserved PII] S 9 9 1 9 Ð 6 3 7 8 " 8 7 # 9 9 9 5 9 Ð 0

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1[ Review of literature 1[0[ The concept of family burden] conceptual and oper! ational de_nitions Generally\ the term family burden has most often been used to re~ect the impact of mental illness on the whole family\ even though the evaluation of burden is usually carried out with the principal family caregiver[ Hoenig and Hamilton "0855# were the _rst to di}erentiate between objective burden and subjective burden[ Objec! tive burden was de_ned in terms of the negative e}ects of the illness on the family and the disruptive behaviours of the patient[ Subjective burden was de_ned as the feel! ings of the family towards the presence and the be! haviours of the patient\ and the general feeling of being burdened[ Despite the fact that this de_nition of burden has been used in the literature\ the conceptual distinction between subjective and objective burden remains unclear and results in di.culties in operationalisation and measure! ment[ The lack of a clear conceptual basis for the de_! nition of burden has interfered with the development of knowledge in this _eld "Maurin and Barmann!Boyd\ 0889^ Shene et al[\ 0883#[ As an example\ in some studies "Noh and Turner\ 0876^ Shene\ 0889# patients| behav! ioural symptoms or problems in social functioning are considered as dimensions of objective burden\ despite Platt|s suggestion "0874# that patient characteristics should be clearly di}erentiated from objective burden[ In fact\ measures of burden frequently give a total score and do not distinguish between dimensions of burden related to the condition of the patient\ the demands of caring for him\ or the consequences of the situation on the caregiver or the family "Gwyther and George\ 0875^ Poulshock and Deimling\ 0873^ Zarit et al[\ 0875#[ Platt et al[ "0879# and Platt "0874# highlight the need to systematically and speci_cally evaluate the emotional reactions of caregivers "subjective burden# to the behav! ioural disturbances of the patient\ to the patient|s social performance\ and to the consequences of the illness on social activities and on family and professional life[ This study has followed these recommendations[ 1[1[ Evolution of studies on burden Earlier studies of burden were descriptive in nature and sought to evaluate the intensity and incidence of this phenomenon[ These studies demonstrated that there are multiple demands on primary caregivers that have nega! tive consequences on family\ conjugal and social relations\ and which increase the vulnerability of the fam! ily caregiver to health problems[ More recent studies have placed greater emphasis on the factors associated with burden and have evaluated the impact of certain caregiver and patient factors on burden[

1[2[ Psychosocial characteristics of family caregivers associated with caregiver burden In studies of burden\ characteristics of caregivers most frequently studied include sociodemographic features\ the nature of their relationship to the patient\ the living arrangements and their psychosocial resources[ Several studies have shown that female caregivers experience more distress than their male counterparts and that this _nding persists even after controlling for the in~uence of the other variables such as income and education "Cook\ 0877^ Noh and Turner\ 0876^ Noh and Avison\ 0877^ Wine_eld and Harvey\ 0882#[ However\ no consistent relationship has been found between the nature of the relationship between the caregiver and the patient and the caregiver|s perception of burden[ Three studies "Liptzin et al[\ 0877^ Tessler and Gamache\ 0883^ Wasow\ 0874# found that caregiver burden is associated with the nature of the relationship\ while two studies "Gibbons et al[\ 0873^ Gubman et al[\ 0876# found no such association[ While these inconsistent _ndings may be related to the fact that burden varies as a function of whether or not the caregiver lives with the patient\ none of the literature reviewed has taken both these factors into consideration[ In studies of burden where living arrangement had been considered\ two studies "Chakrabarti et al[\ 0881^ Jacob et al[\ 0876# indicated that living with the patient con! tributes to burden\ while one "Tessler and Gamache\ 0883# concluded that co!habitation had an e}ect on burden only when the patient had no professional follow! up in the community[ Several studies have examined the in~uence of certain psychosocial characteristics of the caregiver\ such as social support\ coping and personal control on the level of burden[ Potasznik and Nelson "0873# found that sat! isfaction with the support network was inversely related to objective and subjective measures of burden[ However\ the results of other studies "Noh and Turner\ 0876^ Noh and Avison\ 0877# did not show that social support was a signi_cant predictor of burden[ They noted that among the resources available to the caregiver\ the sense of mas! tery emerged as the most important predictor of sub! jective burden[ Rauktis et al[ "0884# found that negative social interactions were more important predictors of burden than social interaction[ As for the coping vari! ables\ Solomon and Draine "0884# found that perceptions of self!e.cacy\ mastery and satisfaction with coping responses were predictors of lower levels of burden[ In contrast\ Hobbs "0886# found no signi_cant relationship between coping and burden in caregiving mothers of adult schizophrenics[ Finally\ in a study by Bibou!Nakou et al[ "0886#\ most of the dimensions of subjective burden were signi_cantly correlated with perceived control on behalf of the caregivers with the sense of personal control being higher in those caregivers were burdened most[ In summary\ although psychosocial resources may diminish

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

the level of burden\ our understanding of the e}ects of these resources on caregiver roles remains limited[ 1[3[ Psychosocial characteristics of the patient associated with caregiver burden Characteristics of the patient that are most frequently examined in studies of caregiver burden are those related to the history and to the severity of illness\ to patient|s behavioural disturbances\ and to the nature of treatment[ In the majority of studies there is little association found between socio!demographic characteristics of the patient and burden\ with the exception of patient|s age and sex[ The results for these two variables are inconsistent and suggest that there may be possible interaction e}ects between age and sex of the caregiver and patient charac! teristics "Gopinath and Chaturvedi\ 0881^ Gibbons et al[\ 0873^ Grad and Sainsbury\ 0857^ Hoenig and Hamilton\ 0855^ Jones et al[\ 0884^ Wine_eld and Harvey\ 0882#[ As for factors related to the history of illness\ the results are contradictory[ On the one hand\ some studies suggest that the number of hospitalisations "Chakrabarti et al[\ 0881^ Grad and Sainsbury\ 0857^ Hoening and Hamilton\ 0855] Thompson and Doll\ 0871# and the length of the illness "Chakrabarti et al[\ 0881^ Grad and Sainsbury\ 0857^ Hoenig and Hamilton\ 0855# are those most frequently associated with burden in caregivers[ On the other hand\ Solomon and Draine|s study "0884# did not _nd a relationship between subjective burden and such illness variables as] diagnosis of schizophrenia\ the number of hospitalizations\ length of illness\ duration of illness\ the current acute episode and patient|s current function[ With respect to treatment\ studies suggest that com! munity!based care is less e}ective than institutional care in reducing caregivers| subjective burden "Grad and Sainsbury\ 0857^ Carpentier et al[\ 0881#[ In addition\ Tessler and Gamache "0883# found that follow!up care following hospitalisation was not signi_cantly related to a decrease in subjective burden[ In contrast\ Test and Stein "0879#\ found a decrease in global burden in families receiving an experimental assertive community treatment program at four months after the onset of treatment[ The authors attribute this change to the important support services that were a part of the experimental program[ Similarly\ in a study comparing specialized hospital treat! ment with outreach treatment of patients with serious mental illness and mental retardation\ the burden on caregivers did not increase signi_cantly during the out! reach treatment "Van Minnen et al[\ 0886#[ Two additional studies suggested that home treatment "Wasylenky et al[\ 0886# and care provided by an inte! grated services agency "Chandler et al[\ 0885# to clients with mental illness were associated with less family burden[ Finally\ across all the patient characteristics that were

64

studied\ the seriousness of the psychopathology or the behavioural disturbances\ and not the diagnosis\ were the predictors most frequently associated with burden "Coyne et al[\ 0876^ Creer et al[\ 0871^ Gibbons et al[\ 0871^ Gubman et al[\ 0876^ Hirsh et al[\ 0868^ Mueser et al[\ 0885^ Noh and Turner\ 0876^ Potasznick and Nelson\ 0873^ Song et al[\ 0886^ Thompson and Doll\ 0871^ Wine_eld and Harvey\ 0882#[ However\ the behavioural disturbances reported most frequently were not always di}erentiated from the ones that were the most di.cult to handle[ For example\ Hoenig and Hamilton "0855# identi_ed unusual behaviours such as hostility\ behav! iours requiring observation\ and excessive withdrawal as the most disturbing[ In summary\ with the exception of the sex of the care! giver and the level of behavioural disturbances of the patient\ few patterns emerge from previous studies that would suggest which caregivers are overburdened[ Prob! lems of conceptual clarity in the de_nition of burden and lack of consistency between the de_nitions and the operational measures of the concept may explain these results[ In fact\ certain studies have carried out a global evaluation of burden\ and few have identi_ed the respec! tive contributions of patient and caregiver characteristics to explaining caregiver burden[ Other limitations include the small size and representativeness "e[g[ parents in sup! port groups # of the samples studied[ In a review of the literature\ Loukissa "0884# underlines that most research studies evaluated only caregivers of patients with diag! noses of schizophrenia[ Finally\ in a number of studies\ little information is available on living arrangements of the patient and caregiver\ despite the potential import! ance of this factor in explaining caregiver burden[ The cross!sectional correlational study described here was undertaken with a view to remedying the limitations of previous studies with respect to the measurement of caregiver burden\ to sample selection\ and to the selection and measurement of the study variables[ To this end\ and as recommended by Maurin and Barmann!Boyd "0889#\ the Social Behavioural Assessment Scale "SBAS^ Platt et al[\ 0872# was used to di}erentiate between and measure subjective and objective burden[ From their extensive review of instruments measuring family or caregiver burden\ Shene et al[ "0883#\ found the SBAS to be rel! evant for conducting a theoretically sound study of burden[ In addition\ this study attempts to address the problem of restricted samples of previous studies by examining a representative sample of 248 primary car! egivers of patients with psychiatric illness from a rela! tively broad geographical region[

2[ Purpose of the study The purpose of this study is to describe the subjective burden of primary caregivers of mentally ill patients

65

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

3[ Methods

number of subjects to 248\ for a participation rate of 25[2)[ It was impossible for us to determine whether those persons who had refused and those who were unable to be contacted di}ered from the caregivers in our _nal sample\ because we were unable to get access to _les once the patient refused that their caregiver be contacted[

3[0[ Sample

3[1[ Measures

Subjects for this study were recruited from the psy! chiatric outpatient clinics of eight hospitals in Montreal "Quebec\ Canada# which together serve _ve of the six psychiatric catchment areas of the region "approximately 0\999\999 inhabitants#[ The hospitals were chosen on the basis of the number of beds reserved for short!term psy! chiatric care and for the predominantly French speaking population treated there[ All health and social services in the province of Quebec are provided by the state and are accessible to all residents[ Also\ because psychiatric services are sectorized\ sampling one catchment area means covering all patients served by public services in that area[ Patient _les were _rst randomly selected using a sampling strategy strati_ed by geographically de_ned area[ These _les were examined and the treating thera! pists were consulted in order to identify subjects who met the inclusion criteria[ In order to be eligible for the study\ patients had to be under treatment at the outpatient clinic\ that is they had to have been seen by a health professional at least once in the last three months^ in addition\ they had to be living in the same household with one or more persons likely to assume the role of primary caregiver\ and must not have received a primary diagnosis of alcoholism\ drug abuse or mental de_ciency[ For primary caregivers\ the eligibility criteria were as follows] age between 07 and 64 years^ living at least six months in the same home with a person su}ering from a mental disorder^ identi_ed by the patient as the person who most often provides help in times of di.culty^ not have been hospitalized in a psy! chiatric facility or received outpatient psychiatric treat! ment in the last three years^ capable of speaking and understanding French[ Eligible patients were sent a letter informing them of the purpose of the study and then contacted by telephone to request a meeting with a person with whom they lived and who provided them with help when needed[ If the patient agreed to participate in the study\ the primary caregiver was contacted by telephone in order to obtain his or her consent[ Of the 0529 _les selected\ 273 subjects "12[4)# proved ineligible for the study at the time of _rst contact\ 196 _les "01[5)# contained a wrong address or telephone number\ and 40 patients "2[0)# could not be reached[ Based on the _nal sample of 877 subjects\ a total of 399 interviews were conducted by a nurse at the caregiver|s home[ Forty!one questionnaires were sub! sequently discarded as incomplete which brought the

Data were collected using a semi!structured interview conducted by trained nurses at the caregivers| homes[ Subjective burden was assessed by the Social Behavior Assessment Scale "SBAS^ Platt et al[\ 0872#[ Other vari! ables related to the primary caregiver and those variables related to the patient were evaluated by 23 closed!ended questions developed for the purpose of the study[ These questionnaires were pre!tested on a sample of 19 car! egivers who did not take part in this study[ The SBAS is a standardized semi!structured interview used to investigate the perceptions of primary caregivers regarding patient disorders and the caregiver|s subjective and objective burden[ In this study\ only three of the six sections of the original instrument were retained[ The three sections dealt with] the assessment of the primary caregiver|s subjective burden relative to patient|s behav! iour disturbances "13 items#^ the patient|s social per! formance dysfunctions "01 items#^ and the adverse e}ects of patient|s behaviour on others "05 items#[ For each of these three dimensions of the SBAS\ two scores were obtained[ The _rst score\ ranging from 9[9 to 1[9\ was based on assessments of the presence and severity of behaviour disturbances\ of de_cits in social per! formance and of the adverse e}ects of patient behaviour on the household[ The second score re~ected the assess! ment of subjective burden i[e[ the level of distress created by each problem presented by the patient or existing within the household[ Subjective burden was scored on a three!point scale according to whether it was non!existent "9[9#\ moderate "0[9# or high "1[9#[ A zero was scored when the caregiver did not report any unpleasant emotional response related to a patient|s problem or when this problem was evaluated as absent or rarely present by the caregiver[ A moderate distress score of 0\ indicated that the caregiver reported some feelings of depression\ stress\ or irritation when dealing with a pat! ient|s problem[ High levels of distress were scored when the caregiver felt overwhelmed or unable to tolerate the patient|s problem any longer[ A mean score was com! puted for each of the three dimensions of the SBAS\ and a total score for subjective burden was calculated from the mean scores of each dimension[ The total score for subjective burden varied from 9[9 to 1[9[ As a measure of the reliability of the instrument\ Platt et al[ "0879# report intraclass correlation coe.cients ranging from 9[81 to 9[88 for the six subscales[ Gibbons et al[ "0873# tape!recorded 29 interviews that were rated by two inter!

living at home\ and to identify which patient and car! egiver characteristics contribute most to explaining vari! ance in the subjective burden of the caregivers[

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

viewers and found weighted ks between 9[72 and 9[87 for the six subscales[ With the permission of the authors\ the questionnaire was translated into French\ and back translated into English[ Adjustments were made to increase the clarity and precision of the French version of the questionnaire[ Figure 0 presents the categories of caregiver and pati! ent factors that were examined in relation to subjective burden[ Three categories of caregiver factors were selec! ted] socio!demographic characteristics\ role\ and objec! tive burden[ Four groups of patient factors were studied] socio!demographic characteristics\ psychiatric history\ aspects of outpatient treatment and current state of

66

illness[ As indicated earlier\ most of those variables were assessed by a questionnaire designed for this study[ 3[2[ Data analysis Descriptive statistics were used to examine aspects of burden[ Preliminary analyses including simple cor! relation "Pearson|s r# were used to determine the relation! ship between patient and caregiver variables and between these variables and subjective burden[ Only variables sig! ni_cantly related to one of the subscales of subjective burden were retained for further analyses[ Furthermore\ two variables\ relationship with the patient and marital

Fig[ 0[ Categories of caregiver and patient factors examined in relation to subjective burden\ Asterisk "#  variables included in regression analysis[

67

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

status\ were dropped from the regression analyses because of collinearity with other independent variables[ As a result the number of variables was reduced from 27 to 11[ Figure 0 presents those variables that were retained and that were eliminated from the regressions[ Binomial variables were transformed into dummy variables[ The three subjective burden scores were combined as sug! gested by Platt "0874#[ Six sets of variables were intro! duced into the regression using the chronological {enter| method suggested by Maurin and Boyd "0889#[ The _rst set of factors consisted of seven primary caregiver vari! ables\ the second consisted of three patient demographic characteristics\ the third included three variables related to the psychiatric history of the patient and the fourth set included four variables related to outpatient treat! ment[ The _fth and sixth sets of variables included four variables related to the current state of the patient\ and two related to the caregivers objective burden[ The vari! ables from each set that were retained in the regression analysis are identi_ed by an asterisk in Fig[ 0[

4[ Results 4[0[ Primary caregiver characteristics The sample of primary caregivers was almost evenly split between men "38)# and women "40)#\ and only 07) of the subjects were other than French!Canadian in ethnic origin[ Their mean age was 40 years "SD  03[0#[ The largest proportion of caregivers "12)# earned from ,29\999 "CDN# to ,38\888 "CDN# annually[ More than three!quarters of them were married or living in a com! mon!law relationship "66)#[ Most of the primary care! givers who agreed to participate in the study were spouses of patients "59)#[ The mean duration of cohabitation indicated that the majority of primary caregivers "45)# had lived with the patient for more than 19 years "X  19\ SD  02[6#[ Furthermore\ while one!third of the primary caregivers declared experiencing di.culties in their role of caregiver and being in need of complementary pro! fessional assistance\ only 02[3) actually had recourse to this kind of help[ 4[1[ Patient characteristics As for the patients\ women made up a higher pro! portion of the subjects "44)# than men "34)#\ and their mean age was 33[3 years "SD  00[8#[ Education showed a similar distribution among patients and among care! givers\ with those having completed high school com! prising the largest proportion "38[9) and 40[1) respec! tively#[ Only 10[1) of the patients in the sample were employed full!time in the community[ With regard to psychiatric diagnosis\ over one!third of the patients "24)# had been diagnosed with a schizo!

phrenic disorder or with some other psychosis\ and a comparable proportion were diagnosed with an a}ective disorder[ The last third of the sample had anxiety or personality disorders[ The mean age of the patients at the onset of illness was 17 years "SD  01[7#[ Over the course of the previous two years\ almost two thirds of the pat! ients had not been hospitalized\ one quarter had been hospitalized once\ and 02[5) had been hospitalized on two occasions or more[ Nearly one!quarter of the patients had never been hospitalized[ 4[2[ Description of subjective burden Only 01) of the primary caregivers reported no sub! jective burden in dealing with one or more sources of di.culties presented by the patient[ The burden scores related to the behaviour disturbances of the patient\ social performance\ and adverse e}ects of the patient|s presence on household were 9[75 "SD  9[42#\ 9[36 "SD  9[41#\ and 9[72 "SD  9[64#[ Subjective burden related to behaviour disturbances created more distress for the caregiver\ closely followed by the adverse e}ects of the patient on household[ According to Platt "0874#\ the evaluation of subjective burden allows a distinction to be made between the fre! quency of the problems created by patients| behaviours and the degree of subjective burden that these behaviours create[ As shown in Table 0\ certain problems which occur less frequently are associated with very high levels

Table 0 Percentage frequency of subjective burden for some behaviour disturbances\ social performance and adverse e}ects on the household and mean scores for subjective burden "N  248#

Behaviours and dysfunctions

) Mean Freq[

Patient|s behaviours Misery Withdrawal Underactivity Irritability O}ensive behaviour Violence Parasuicide

0[2 0[0 9[8 0[0 0[4 0[3 0[3

45 26 30 23 19 02 09

Patient|s social performance Sexual relationship Informant!patient relationship] support Spare time activities

9[6 9[5 9[5

39 39 27

Adverse a}ects on household Households relationships Informant|s social life Informant|s work:education performance

0[4 9[8 0[1

12 29 10

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of burden\ while others which occur more frequently are associated with more moderate levels of burden[ O}ens! ive behaviours\ violence or parasuicides are infrequent but generate a very high level of burden in caregivers[ However\ among the behaviour disturbances that occurred the most frequently in this patient sample\ misery\ withdrawal\ underactivity and irritability resulted in moderately high burden levels[ Patients| social performance generates a lot less sub! jective burden\ while the incapacity of the patient to sup! port the caregiver\ although occurring less frequently\ created more subjective burden for the caregivers[ However\ it was the patients| di.culties in assuming their role as sexual partner that were most frequently reported and that created the most burden[ Among the adverse e}ects of the patient|s mental ill! ness on the household\ con~ict between family members was the aspect which generated the highest level of sub! jective burden[ Other negative and frequently occurring consequences were on the caregivers| social life and on their work and were also very disturbing for them[ 4[3[ Factors associated with subjective burden in primary caregivers Patient and primary caregiver variables together accounted for 60) of the variance in total subjective burden "Table 1#[ Of the six sets of variables\ the one describing the current state of the patient "set 4# con! tributed most to explaining the variance in total sub! jective burden scores "R1 change  39)#[ Three out of the four variables in this set obtained signi_cant b coe.cients\ with symptomatic behaviours and social per! formance dysfunction leading the set "b  9[35 and 9[22 respectively\ P  9[999#[ The set of variables related to objective burden also explained an important part "04)# of the variance in subjective burden[ The set of variables related to psychiatric history "set 2# and the set related to outpatient treatment "set 3# explained 4) and 7 ) respectively[ The b coe.cients of the variables in these last two sets were not signi_cant once subsequent sets were entered[ This is likely due to the correlations between variables in these two sets and others that had already entered the regression analysis[ As a whole\ the contribution of the patient and caregiver socio!demo! graphic variables was not signi_cant\ however one vari! able*female sex of caregiver*yielded a signi_cant b coe.cient "P ³ 9[94# at the last stage of the analysis[

5[ Discussion 5[0[ Study limitations The random and appreciably large sample used in this study made it possible to analyse a wider variety of pri!

68

mary caregiver situations than has been reported in pre! vious research[ However the relatively high refusal rate in this study limits the generalizability of the results[ The high number of refusals may be explained by the respondent|s recruitment strategy\ the double consent to be obtained and the nature of the phenomenon being studied[ Although the approach used to study burden in this study is recognized for its usefulness and validity "Maurin and Boyd\ 0889^ Schene et al[\ 0883#\ it also has its limi! tations[ First\ despite its attempt to di}erentiate between subjective burden\ objective burden\ and patient|s prob! lems\ the structure of the SBAS makes it di.cult to mea! sure subjective burden completely independently of the patient|s behaviour disturbances\ social performance and e}ects on the household[ Second\ it is not possible to determine if a caregiver who experiences a moderate level of burden as a consequence of a few patient behaviour disturbances experiences more subjective burden than one who reports a moderate level of burden as a result of several symptomatic behaviours or social de_cits in the patient[ While it is possible to identify the sources of burden using this modular approach\ the procedure for scoring the multiple!item subscales does not distinguish between caregivers reporting high levels of burden from those reporting more moderate levels[ Consequently\ results using SBAS should be interpreted with caution\ while at the same time\ recognising that there is no avail! able standard or criterion measure of either objective or subjective burden[ This problem has also been identi_ed by Shene et al[ "0883# who suggest that there are too many burden instruments and none that is really accepted as a criterion measure[ They recommend that researchers interested in burden work together to develop a few stan! dardized instruments with acceptable psychometric properties[ It should also be noted that cross!sectional studies do not always manage to capture the changing nature of stress[ In order to redress this shortcoming\ longitudinal studies are needed to explore the burden brought on by new episodes of illness in addition to the burden related to the ongoing demands of living with an ill individual[ 5[1[ Findings Despite its limitations\ this study has some important and signi_cant _ndings[ Speci_c behaviour disturbances which generated the greatest burden were not frequently reported but were those which re~ected deviance and were a threat to the security of the caregiver and of the patient[ In addition\ behaviours more frequently reported and those creating high levels of burden seem to be a subgroup of behaviours related to the depressive state or a}ect of the patients which made the caregivers daily contacts with them more di.cult[ These _ndings support those from earlier studies " Gibbons et al[\ 0873^

79

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72 Table 1 Hierarchical regression of total burden score on sets of variables "N  177# R1

Variables sets

r

b

Step 0 Caregiver|s variables Ethnic origin Age Income Occupation Sex Marital status Duration of cohabitation

9[90 9[99 −9[98 9[99 −9[09 −9[98 −9[93

9[91 −9[93 −9[92 9[91 −9[98 9[09 9[90

Step 1 Patient|s variables Sex Occupation Age

9[03 −9[09 −9[98

9[91 9[93 9[92

Step 2 Psychiatric history Diagnosis Age at onset of disorders Hospitalizations in past 1 years

−9[06 9[11

−9[92 −9[90 −9[92

Step 3 Variables related to treatment Appointment compliance Medication compliance Physical health problems Attendance at a sheltered workshop

−9[14 −9[23 9[99 9[92

−9[93 −9[90t −9[93 −9[91

Step 4 Variables related to current state of patient Improvement since onset of illness Persistance of disorders Behaviour disturbances Social performance dysfunctions

−9[24 9[14 9[58 9[40

−9[05 −9[91 9[29 9[15

9[53 9[25

9[32 9[97

R1 change

9[90

Step 5 Objective burden Adverse e}ects[ on household Need for help in caring for patient

9

9[92

9[0

9[94

9[05

9[97

9[45

9[39

9[60

9[04

 P ³ 9[94^  P ³ 9[90^  P ³ 9[994^  P ³ 9[9990

Gopinath and Chaturvedi\ 0881^ Greenberg et al[\ 0886^ Gubman et al[\ 0876^ Herz et al[\ 0865^ Jones et al[\ 0884^ Platt et al[\ 0879\ 0872\ 0874^ Vaddadi et al[\ 0886^ Wine_eld and Harvey\ 0882# where di}erent scales were used to measure patients| di.culties and caregiver burden[ In these studies\ symptom!related patient behav! iours resulted in greater burden than did patients| social di.culties[ Belligerent behaviours\ unpleasant attitudes\ violence\ aggressivity and bizarre behaviours were those most frequently described[ Di.culties in social performance were less disturbing

than were the symptom!related behaviours[ Our results showed that it was not instrumental di.culties in social role performance that were disturbing\ but rather a}ect! ive di.culties such as the inability of the patient to be supportive\ to be a friend\ or to be a sexual partner[ These results can be explained by the fact that 59) of caregivers in the sample were the spouses of the patients[ It is also possible that the patients| de_cits in their social per! formance were already present before the beginning of their illness\ and that the caregivers had already learned to deal with these problems[ The fact that the illness had

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

been acknowledged might have made the role of patient and the decrease in role performance more acceptable in the eyes of the caregiver\ and may even have contributed to a sense of usefulness and importance for some care! givers[ Gibbons et al[ "0873# also found that caregivers were ready to carry out tasks for the patient\ but had di.culty dealing with the problems of support and a}ec! tion from the patient[ However\ they found that di.! culties in sexual roles generated less burden than did di.culties of an interpersonal nature[ As for the adverse e}ects on the household\ the dis! turbances the most frequently reported concerned con! ~icts between family members\ the social life of the care! giver\ and the caregivers ability to function at work[ These _ndings are supported in recent research "McGilloway et al[\ 0886^ Provencher\ 0885#[ Gibbons et al[ "0875# also noted that disturbances between family members and in caregivers| work performance generated a feeling of subjective burden[ Even though the e}ect of the patient|s presence on the household has been con! sidered as a measure of the caregiver|s objective burden in previous studies\ it is in fact a subjective perception on the part of the caregiver[ The development of more objective measure continues to be an important avenue for further research because of a growing concern about the impact of change in so!called objective dimensions\ such as revenue and leisure time[ As for the patient and caregiver variables which con! tributed to subjective burden the overall regression explained 60) of the variance\ which suggests that these variables were strong signi_cant predictors of burden[ The variable set related to the current state of the patient explained the largest proportion of burden "R1  9[39#\ with the behaviour disturbances variables emerging as the most important in this set\ followed by the social performance of the patient[ All the variables in this set indicate acute manifestations of illness and a deterio! ration in the state of the patient[ These _ndings as well as the absence of a signi_cant between sets of socio! demographic variables and caregiver burden are con! sistent with those from other multivariate studies "Potasznik and Nelson\ 0873^ Noh and Avison\ 0877^ Gubman et al[\ 0876^ Solomon and Draine\ 0884^ Song et al[\ 0886#[ Nonetheless\ several authors "Cook\ 0877^ Gopinath and Chaturvedi\ 0881^ Guberman et al[\ 0876^ Jones et al[\ 0884^ McGilloway et al[\ 0886^ Noh and Turner\ 0876^ Wine_eld and Harvey\ 0882# have under! scored the fact that women caregivers are likely to present with greater subjective burden[ The results of this study con_rm this observation and show that female primary caregivers perceive greater subjective burden than do male caregivers\ regardless of their age\ occupation\ and relationship to the patient[ This suggests that women are carrying a greater a}ective investment when caring for a patient\ which may have a negative e}ect on their health[ The results of this study have important implications

70

for nurses who must identify those primary caregivers who are in need of external support[ Primary caregivers who may bene_t from nursing help are those who have to deal with patients in an acute or deteriorating state of their illness\ and those whose quality of life is deter! iorating because of their pre!occupation with the con! tinual presence and well!being of the patient[ In the cur! rent context\ where even greater involvement of caregivers is required than in the past\ it is important to _nd ways of assisting them to handle the di.culties that will arise[ A focus on empowerment and autonomy "Le~ey\ 0886# as well as the mobilisation of spiritual resources "Doornbos\ 0886# may be major sources of burden relief for family caregivers[ Additional approaches may include respite care\ crisis centres\ tele! phone contacts\ and assistance in resolving family con~icts[ It is important to keep in mind that women are at greater risk of experiencing burden during the caregiving experience\ and particular attention should be paid to the resources that are available to them[ Finally\ researchers need to continue to investigate the multidimensional concept of caregiver burden[ Cross! sectional studies like this one do not re~ect the changes that occur over di}erent phases of the illness of a family member[ These issues should be explored in longitudinal studies which also include measures of caregiver|s resources like social support and coping0[ As suggested by Rose "0885#\ it is also important to carry out qualitative research in order to increase our understanding of the impact of the caregiving experience on those who carry out that role\ to help researchers identify other important factors that should be examined in subsequent studies\ and to capture the rewarding dimension of caregiving so frequently neglected in the past[

Acknowledgements This research was supported by a grant from the Social Sciences Research Council of Quebec[

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0 Psychosocial resources were evaluated in a sub!sample of this study and will be presented in a paper that will follow[

71

N[ Ricard et al[:International Journal of Nursin` Studies 25 "0888# 62Ð72

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