Burden of Chinese Stroke Family Caregivers: The Hong Kong Experience

Transcription

1 1462 ORIGINAL ARTICLE Buden of Chinese Stoke Family : The Hong Kong Expeience Wai-Kwong Tang, MD, Chieh G. Lau, BSc, Vincent Mok, MD, Gabo S. Ungvai, MD, Ka-Sing Wong, MD ABSTRACT. Tang W-K, Lau CG, Mok V, Ungvai GS, Wong K-S. Buden of Chinese stoke family caegives: the Hong Kong expeience. Ach Phys Med Rehabil 2011;92: Objective: To ascetain the clinical and sociodemogaphic factos associated with family caegives buden in Chinese patients with stoke in Hong Kong. Design: Coss-sectional design. Setting: Stoke Clinic. Paticipants: (N 123) fom a stoke clinic and thei family caegives. Inteventions: Not applicable. Main Outcome Measues: Pedictive factos of family caegives buden in Chinese stoke patients in Hong Kong. buden was assessed with the Caegiving Buden Scale (CBS). and caegives sociodemogaphic data and clinical chaacteistics wee ecoded. Physical and psychological conditions wee measued and ated with the following instuments: Cumulative Illness Rating Scale, Geiatic Depession Scale (GDS), Bathel Index, Instumental Activities of Daily Living, Mini-Mental State Examination, Lubben Social Netwok Scale, Modified Life Event Scale (MLES), Hospital Anxiety and Depession Scale (HADS), and a single question about fatigue. Results: In the univaiate analysis, the CBS scoe had significant coelations with cetain chaacteistics of caegives (sex, GDS, HADS, depessive symptoms, fatigue, and MLES) and those of patients (sex, age, education, GDS). Regession analysis evealed that caegives GDS and patients education wee the independent coelates of the CBS. Conclusions: The seveity of depessive symptoms in Chinese stoke caegives and patients education ae independent factos associated with the caegives buden. Futhe studies evaluating inteventions on caegives buden should include the assessment and management of mood disodes. Key Wods: China; Rehabilitation; Stoke by the Ameican Congess of Rehabilitation Medicine STROKE IS THE SECOND most common cause of death in the Chinese population 1 with a steady incease in its incidence. 2 Ischemic stoke is the most common subtype of stoke in China, epesenting 70% of all stoke cases. 3 A Hong Kong study found that only 46% of stoke suvivos wee independent in all basic activities 3 months afte stoke, and moe than 50% emained dependent afte 1 yea. 4 Health-elated cae tasks ae the most demanding when poviding home cae to stoke suvivos, followed by assistance with mobility, household tasks, and emotional suppot. 5 About 52% to 55% of stoke caegives suffe some fom of emotional distess. 6,7 The heavie the buden, the geate the impact on the caegives lifestyle. 8 Poststoke depession (PSD) is associated with caegives depessive symptoms as well as caegiving buden and social suppot. 9 Thee is compelling evidence that PSD has a negative impact on stoke ecovey, 10 and inceases suicidal ideation. 11 All in all, a complex web of indiect evidence suggests that the caegiving outcome is an impotant aspect of the stoke suvivos functional ecovey. Caegive buden efes to the emotional and physical esponses of a caegive to changes and demands in the pocess of giving help to anothe peson with a physical o mental disability. 12 Caegiving buden subsumes the objective cicumstances of caegiving as well as the emotional and/o social impact stemming fom caegiving. 13 emotional eactions to the caing pocess diffe as the buden inceases popotion with the pogession of the given disease. 14 Sometimes the buden eases with time as patients and caegives obviously adjust to the new situation ceated by the disease. 12 Also, the peceived buden can be eased by the involvement of community sevices. 14,15 Losing social elationships also contibutes to caegives buden. 15 As fo caegives of stoke patients, an added difficulty could be the behavioal concomitants of stoke. 6 Moeove, thee has been no study focused on the Caegiving Buden Scale (CBS) of the family caegives of Chinese stoke patients. The emotional impact on caegives buden of stoke patients has been shown to be significant in diffeent cultues, fo example in Japan 6 and Bazil. 16 Whethe the factos associated with caegiving buden in Chinese stoke caegives ae simila to those epoted fom othe cultues emains unclea. Theefoe, the objective of this study was to identify the factos associated with Chinese stoke caegives buden, with the goal of finding viable foms of intevention to help these caegives and, indiectly, the stoke suvivos. List of Abbeviations Fom the Depatments of Psychiaty, (Tang, Lau) and Medicine and Theapeutics (Mok, Wong), Chinese Univesity of Hong Kong, Hong Kong SAR, China; School of Psychiaty and Clinical Neuosciences, Univesity of Westen Austalia, Peth, WA, Austalia (Ungvai). Suppoted by the Pneumoconiosis Compensation Fund Boad of Hong Kong. No commecial paty having a diect financial inteest in the esults of the eseach suppoting this aticle has o will confe a benefit on the authos o on any oganization with which the authos ae associated. Repint equests to Wai-Kwong Tang, MD, Dept of Psychiaty, Shatin Hospital, Shatin, N.T., Hong Kong SAR, China, tangwk@cuhk.edu.hk /11/ $36.00/0 doi: /j.apm BI CBS CIRS GDS HADS IADLs LSNS MLES MMSE PSD Bathel Index Caegiving Buden Scale Cumulative Illness Rating Scale Geiatic Depession Scale Hospital Anxiety and Depession Scale Instumental Activities of Daily Living Lubben Social Netwok Scale Modified Life Event Scale Mini-Mental State Examination poststoke depession

2 BURDEN IN STROKE CAREGIVER, Tang 1463 METHODS Paticipants Between Apil 2006 and Febuay 2007, 390 ischemic stoke patients wee sceened at the Stoke Clinic, Pince of Wales Hospital, Hong Kong. The Pince of Wales Hospital, a teaching hospital of the Chinese Univesity of Hong Kong, seves an uban population of 800,000 people in Hong Kong. wee diagnosed by the attending neuologists at the Pince of Wales Hospital using the Wold Health Oganization definition. 17 As pat of the standad assessment, the National Institutes of Health Stoke Scale was ated on admission. The enty citeia of the study wee: (1) Hong Kong esidents of Chinese descent speaking fluently the Cantonese dialect, who (2) wee medically stable (ie, had no histoy of any acute and sevee disease o sugey in the past 4 weeks o whose peexisting chonic diseases wee in stable condition), (3) lived independently befoe stoke (defined as a pestoke Modified Rankin scoe 3), (4) needed and had an adult family membe as caegive, and (5) scoed 17 o above on the Cantonese vesion of the Mini-Mental State Examination (MMSE 18 )to ensue that the tests wee compehended. wee excluded if they (1) wee still able to wok, (2) had no family caegives, o (3) efused to paticipate. The inclusion citeia fo caegives wee as follows: (1) age 18 o above, (2) no sevee neuologic o psychiatic condition that might have affected the validity of the inteview, and (3) had a Modified Rankin Scoe of 2 o below. A detailed explanation of the aims and natue of the study was given to all eligible patients and thei pimay caegives by a eseach assistant befoe they wee asked to sign the consent fom. The Reseach Ethics Committee of the Chinese Univesity of Hong Kong has appoved the study potocol. The study was pefomed in accodance with the pinciples laid down in the Declaation of Helsinki. Data Collection The sociodemogaphic chaacteistics of the patients and caegives (table 1) wee collected by a tained eseach assistant. Backgound data, including age, sex, maital status, education, and living envionment, wee obtained fom both the patients and thei caegives. medical histoy, cuent condition, and numbe of cohabiting family membes wee also ecoded. Infomation about the elationship with the patient, caegiving cicumstances (duation of caegiving, time spent on caegiving pe week [h/wk]), the availability of family suppot, household choes, and social life wee collected fom the caegives. Thee hunded and ninety stoke patients wee followed-up and sceened consecutively in the Stoke Clinic between Apil 2006 and Febuay Only 123 patients (31.5%) and thei family caegives met the inclusion citeia of the study. Of the 267 patients excluded, 197 had no family caegives, 28 could still wok, 30 efused to paticipate, 6 wee not of Chinese descent and/o not fluent in Cantonese, and 6 had a Mini- Mental State Examination (MMSE) scoe less than 17. Thee wee no significant diffeences (P.05) between paticipants and the excluded patients in tems of age and sex. Instuments A eseach assistant administeed all the following instuments to assess the physical and psychiatic status and the family and social suppot of the patients and the caegives. 1. Caegiving buden, that is, the advese pesonal consequences of caegiving on caegives activities o oles, 19 Table 1: Sociodemogaphic and Clinical Chaacteistics of the Study Sample Chaacteistics Values 2.4 (2.0) Age* Sex (men) 79 (64.2) Yeas of education 4.6 (4.0) BI 15.5 (17.0) GDS 5.5 (5.0) Time since stoke (mo) 27.9 (5.0) Lateality of symptoms Left 51 (41.5) Right 43 (35.0) Bilateal 7 (5.7) No lateality 22 (17.9) IADLs 10.0 (8.0) CIRS 7.8 (8.0) NIHSS (on admission)* Dysathia Best language Total scoe Age* Sex (men) 34 (27.6) Yeas of education 6.8 (6.0) No. of family membes in household (except patient and caegive) Length of caegiving (mo) 6.3 (7.0) Time spent on caegiving (h/d)* MMSE 26.5 (27) CIRS 3.5 (3.0) GDS 4.5 (4.0) LSNS* MLES 1.6 (1.0) CBS* HADS* NOTE. N 123. Abbeviations: BI, Bathel Index; CIRS, Cumulative Illness Rating Scale; GDS, Geiatic Depession Scale; HADS, Hospital Anxiety and Depession Scale; IADLs, Instumental Activities of Daily Living; LSNS, Lubben Social Netwok Scale; MLES, Modified Life Event Scale; NIHSS, National Institutes of Health Stoke Scale. *Values ae pesented as mean SD. Values ae pesented as mean (median). Values ae pesented as n (%). was evaluated with the CBS. 20 The CBS has 20 items; heavie caegiving buden is indicated by a highe scoe. The intenal consistency of the oiginal Chinese vesion of the CBS is highly satisfactoy (Conbach ). 2. The CIRS 21 was used to ate the seveity of coexisting illnesses fo both the patients and thei caegives. The CIRS items coveing 14 ogan systems ate the pesence and seveity of comobid medical conditions on a 5-point Liket scale (0 4). If 2 diseases ae pesent within 1 categoy, then only the disease with the highe scoe is counted. A scoe of 0 epesents no poblem, 1 epesents cuent mild o past significant poblem, 2 epesents modeate disability equiing fist-line teatment, 3 epesents uncontollable chonic poblems o significant disability, and 4 epesents end-ogan failue equiing immediate teatment. The seveity of the health poblems is indicated by the total scoe anging fom 0 to 56. The CIRS is a eliable and valid measue with an inta-

3 1464 BURDEN IN STROKE CAREGIVER, Tang Table 2: Coelation of Vaiables With Buden Sex Maied o not Age Yeas of education CIRS MMSE LSNS MLES 0.150* Relation to patient (spouse) Relation to patient (nonspouse) (spouse: 0, non spouse: 1) Duation of caegiving Time attending thei sick elative (h/d) Have to take cae of othe family membes (yes/ no) Have paid cae (yes/no) No. of family membes help with caegiving No. of paid caegives HADS Single item fo fatigue GDS Retied Housewife Psychiatic histoy Cuent psychiatic medication Time spent on physical caegiving (h/d) Time going out without accompanying thei sick elative (h/d) No. of cohabiting family membes *P.10; P.05; P.001. Peason coelation, othewise Speaman coelation. class coelation coefficient of 0.81 and concomitant validity of The Bathel Index 23 (BI) and the Lawton and Body 24 Instumental Activities of Daily Living (IADLs) scale evaluated the extent of patients disability in daily functions. The BI coves 10 items: pesonal hygiene, bathing, feeding, toileting, stai climbing, dessing, bowel contol, bladde contol, ambulation o wheelchai use, and chai-bed tansfe. Its total scoe anges fom 0 to 20; highe scoes indicate moe independent self-cae. The IADLs assess the level of independent community living skills (eg, shopping, cooking, and managing finances). It contains 8 items; its summay scoe anges fom 0 (dependence) to 24 (independence). The IADLs has excellent inteate eliability (0.85) The Cantonese vesion of the MMSE 18 measued the caegives and thei cae ecipients global cognitive functions. Conbach alpha and test-etest eliability of the Chinese vesion of the MMSE wee 0.86 and 0.78, espectively. Inteate eliability measued with the intaclass coelation was The Chinese vesion of the 15-item GDS 25 measued the seveity of depessive symptoms of both the patients and thei caegives. The GDS has been used to assess depessive symptoms in caegives of patients with neuologic diseases The Chinese vesions of the Lubben Social Netwok Scale 26 (LSNS), which has been used in Chinese populations, 27 compises 10 questions that ate the level of social suppot. Each question anges fom 0 to 5; highe scoes indicate a bette social netwok. 7. The Modified Life Event Scale (MLES 28 ) ecoded the pesence o absence of 18 advese life events in the past 6 months in the caegives. The total numbe of advese events encounteed is expessed by a sum scoe. 8. The anxiety subscale of the HADS was used to sceen fo anxiety disodes. 29 A 4-point Liket scale anging fom 0 to 3 scoed the esponses fo each item. A scoe of 0 epesents not at all, 1 epesents occasionally, 2 epesents quite often, and 3 epesents vey often indeed. Responses fo each of the 7 items ae based on the elative fequency of anxiety symptoms ove the past week. Scoes ange fom 0 to 21, with highe scoes indicating geate likelihood of anxiety. 9. A single question sceened fo geneal fatigue in caegives. Statistical Analysis The statistical analyses wee pefomed using SPSS Vesion a Desciptive data ae pesented as means, medians, o popotions, as appopiate. and caegives vaiables, which wee nomally distibuted, wee coelated with the CBS using the Peason coelation, while the categoical o nonnomally distibuted vaiables wee coelated with the Speaman coelation. Vaiables with P.10 in the coelation wee enteed into a multiple stepwise linea egession analysis (fowad mode) to detemine the factos associated with CBS. The level of significance was set at.10 in the coelation analysis due to the exploatoy natue of the fowad stepwise egession. 30 The CBS scoes wee the dependent vaiables in the egession analysis. The candidate deteminants wee tested fo multicolineaity (coelation 0.5) to pevent ove-paameteization of the pediction model; the vaiable with the lowest coelation coefficient with the dependent vaiables was omitted fom the analysis. Significance was set at.05 (2-sided). RESULTS The sociodemogaphic and clinical chaacteistics of the patients and thei caegives ae shown in table 1. Table 3: Coelation of Vaiables With Buden* Sex Maied o not Age Yeas of education Monthly income Availability of a lift Duation of illness CIRS BI IADLs GDS Retied Housewife Psychiatic histoy Cuent psychiatic medication *P.10; P.05. Peason coelation, othewise Speaman coelation.

4 BURDEN IN STROKE CAREGIVER, Tang 1465 Univaiate Coelates of CBS Univaiate coelations of caegives and patients sociodemogaphic and clinical vaiables with the caegives buden ae shown in tables 2 and 3, espectively. Heavie buden was coelated with the following chaacteistics of caegives: highe GDS (.500, P.0001), highe HADS (.449, P.0001), diagnosis of depession (.279, P.007), fatigue (.247, P.006), sex (women) (.205, P.023), and smoking histoy (.205, P.024). vaiables that coelate with CBS included highe GDS (.306, P.005), sex (women) (.179, P.049), and olde age (.235, P.009). Multiple Linea Regession Analysis of the CBS The sex of caegives and patients wee significantly coelated (.676, P.001) and so was the HADS with both GDS and fatigue in caegives (.645, P.001;.513, P.001), and GDS and fatigue in caegives (.523, P.001); hence, the sex of patients and both HADS and fatigue in caegives wee omitted fom the egession analysis. The multiple linea egession models ae shown in table 4. 3 vaiables (sex, GDS, MLES) and patients 3 vaiables (education, age, GDS) with P 0.1 in the coelation wee enteed into the multivaiate egession analysis (fowad mode). GDS and yeas of education in patients wee significantly elated to caegiving buden accounting togethe fo 34% of the vaiance in CBS. Univaiate Coelates of Depessive Symptoms Because caegives depession is an independent facto to caegiving buden, the factos associated with caegives depessive symptoms wee also examined including the following caegives chaacteistics: lowe MLES (.322, P.001), highe CIRS (.230, P.050), sex (women;.191, P.050), lowe LSNS (.284, P.050), and being a housewife (.152, P.100). Coelations wee also found between caegives depessive symptoms and 2 patients vaiables: highe GDS (.343, P.050) and being a housewife (.162, P.100) (tables 5 and 6). DISCUSSION In this study, caegives buden was independently associated with the seveity of thei depessive symptoms as well as patients education level. The mean value SD of CBS in this study was , simila to the figue of epoted fo caegives of patients with mild dementia. 12 Depession is epoted in *P.05. Table 4: Multiple Linea Regession of CBS CBS Vaiables R 2 GDS 0.498* Sex MLES Education (P) 0.339* Age GDS Table 5: Coelation of Vaiables With Thei GDS Scoes Sex Maied o not Age Yeas of education CIRS MMSE LSNS MLES Relation with patient (spouse) Relation with patient (nonspouse) (spouse: 0, nonspouse: 1) Length of caegiving Time attending patients (h/d) Have to take cae of othe family membes (yes/no) Have a paid cae (yes/no) No. of family membes help with caegiving No. of paid caegives GDS Retied 0.152* Housewife Cuent psychiatic medication Time spent on physical caegiving (h/d) Time going out without accompanying the patient (h/d) No. of cohabiting family membes *P.10; P.05; P.001. Peason coelation, othewise Speaman coelation. 41% to 50% of the stoke caegives, 7,31-33 which is associated with the patients behavioal and psychological abnomalities, 7,31 the seveity of stoke, and olde age. 32 Ou study confimed pevious findings that caegives seveity of depessive symptoms ae significantly elated to thei buden. 6,14,16,34,35 The seveity of depessive symptoms accounted fo caegiving budens, pimaily, even afte adjusting fo all the othe elevant vaiables including sex of patients, and anxiety and fatigue in caegives. Caegiving buden can be Table 6: Coelation of Vaiables With GDS Scoes Sex Maied o not Age Yeas of education Total monthly income Availability of an elevato Duation of illness CIRS BI IADLs GDS Retied Housewife 0.162* Past psychiatic histoy Cuent psychiatic medication *P.10; P.05. Peason coelation, othewise Speaman coelation.

5 1466 BURDEN IN STROKE CAREGIVER, Tang highly stessful, and stess has been epoted as a isk facto to depession Thee is neuobiologic evidence linking stess to depession. The neuotansmitte seotonin is depleted in esponse to stess, 39 contibuting to the development of depession. 40 Depession impais cognitive and physical pefomance, which inceases caegives buden, theeby futhe aggavating thei stess leading to a vicious cycle. Vigoous ealy teatment of caegives depession coupled with teaching them stategies fo stess management could help ease the buden of cae. Apat fom caegives depession, patients demogaphic chaacteistics and physical condition also affect caegives buden. 7,13 The association between patients education level and caegiving buden has not been epoted, only the caegives low education level was found to be a significant contibuto. 12,24 Ou finding suggests that highe education means bette undestanding of the stoke-elated disability and its multifaious consequences esulting in bette coping stategies. Consequently, educating patients about stoke and teaching them coping skills could be an effective way to educe caegives budens. This appoach has been suggested 41 with diffeent coping stategies being effective at diffeent phases of stoke. 42 Diffeent levels of caegives buden at diffeent phases of stoke was found by Bugge et al 43 but was not in this study because this was a coss-sectional investigation. In a Koean study, being a daughte-in-law as a cae was invesely associated with caegiving buden. 34 This study could not eplicate this finding as it did not find any coelation between the caegives elations to the patients. Moeove, this study does not confim the findings that caegiving time contibutes to caegives buden. 13,24,43 This might be due to cultual diffeences, because none of the Chinese studies found such an association. Because caegives depession as an independent facto to caegiving buden, its pevention is cucial. depession is associated with stoke patients memoy and compehension, 31 family functioning, 44 and patients emotional distess. 45 The findings that the depessive symptoms wee an impotant deteminant of CBS in Chinese stoke caegives ae simila to those found in whites. Chinese societies highly value the esponsibility of caing fo the eldely and do not encouage people to expess pesonal feelings. 46,47 The suppessed feelings do affect caegives buden. They affect not only the mental but also the physical conditions. To sum up, the cognitive and psychological factos contibuted moe to caegiving budens in Chinese society unlike in Japan, 6 Koea, 34 and Bitain, 43 whee the behavioal and physical aspects had a moe decisive ole. It seems, theefoe, that in Chinese societies, cognitive counseling to caegives would be essential to ease caegives buden. Moeove, this study confimed that caegives poo selfated geneal health is a significant contibuto to the seveity of thei depessive symptoms 20,33,36,37,48 and poo health condition as a consequence of stess. 49,50 Coexisting diseases ae impotant deteminants of GDS in both Chinese and white stoke caegives. 31,48 PSD, diagnosed accoding to Diagnostic and Statistical Manual of Mental Disodes, 4th edition citeia, has been epoted in 16.4% of Japanese stoke suvivos and 20% of thei Hong Kong Chinese countepats. 51,52 The association, found in this study, between patients and caegives depessive symptoms is consistent with the esults of some 9,45 but not all 31 epots. Although the causality of this association could not be established, the esults suggest that the pevention of PSD is 1 possible way to pevent depessive symptoms in caegives. Offeing tailo-made clinical sevices to the caegives of stoke patients is vitally impotant to enhance patients ecovey. To this end, futhe studies should focus on the examination of factos elated to caegives depession, the teatment of thei depession, and the evaluation of the implemented theapeutic inteventions. Study Limitations Thee ae a numbe of limitations to this study. Fist, it was a coss-sectional, clinic-based investigation and mainly included patients with mild and modeate stoke and thei caegives; thus, the esult cannot be genealized to the whole population of stoke suvivos. Second, due to the estictive enty citeia, only about one-thid of the clinic attendants paticipated in the study, esulting in a elatively small sample size. Also, a selection bias cannot be uled out as 197 patients had no family caegives. Thid, stoke patients and thei caegives wee inteviewed only once egadless of the total length of stoke and caegiving. McCullagh et al 14 epoted diffeent deteminants of caegiving buden at 3 months and 1 yea afte stoke, indicating a shift towad adaptation with time leading to educed buden of cae. Whethe caegives in this study could adapt to a new family situation emains uncetain. Fouth, because of the coss-sectional design of the study, the causality between the caegiving buden and patients and caegives chaacteistics could not be exploed. CONCLUSIONS Simila to the studies conducted in diffeent sociocultual settings, the seveity of depessive symptoms in Chinese stoke patients and thei caegives is significantly associated with family membes buden of cae. Devising inteventions to lessen caegives buden should include the assessment and management of mood disodes in both patients and caegives and moe effective education of stoke suvivos about thei condition. Refeences 1. Wold Health Oganization. Wold health statisitcs. Geneva: WHO P; Jiang B, Wang WZ, Chen H, et al. 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