See discussions, stats, and author profiles for this publication at: https://www.researchgate.net/publication/321494401 Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana Article  in  BMC Health Services Research · November 2017 DOI: 10.1186/s12913-017-2642-0 CITATIONS READS 5 97 9 authors, including: Yaw Nyarko Opoku-Boateng Irene A Kretchy     University of Ghana1 PUBLICATION 5 CITATIONS    34 PUBLICATIONS   207 CITATIONS    SEE PROFILE SEE PROFILE Genevieve Cecilia Aryeetey Duah Dwomoh School of Public Health University of Ghana University of Ghana 32 PUBLICATIONS   467 CITATIONS    6 PUBLICATIONS   31 CITATIONS    SEE PROFILE SEE PROFILE Some of the authors of this publication are also working on these related projects: Current issues in malaria management View project Mental Health Project View project All content following this page was uploaded by Samuel Agyei Agyemang on 05 December 2017. The user has requested enhancement of the downloaded file. Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 DOI 10.1186/s12913-017-2642-0 RESEARCH Open Access Economic cost and quality of life of family caregivers of schizophrenic patients attending psychiatric hospitals in Ghana Yaw Nyarko Opoku-Boateng1,3, Irene A. Kretchy2, Genevieve Cecilia Aryeetey3, Duah Dwomoh4, Sybil Decker5, Samuel Agyei Agyemang3, Yesim Tozan6, Moses Aikins3 and Justice Nonvignon3* Abstract Background: Low and middle income countries face many challenges in meeting their populations’ mental health care needs. Though family caregiving is crucial to the management of severe mental health disabilities, such as schizophrenia, the economic costs borne by family caregivers often go unnoticed. In this study, we estimated the household economic costs of schizophrenia and quality of life of family caregivers in Ghana. Methods: We used a cost of illness analysis approach. Quality of life (QoL) was assessed using the abridged WHO Quality of Life (WHOQOL-BREF) tool. Cross-sectional data were collected from 442 caregivers of patients diagnosed with schizophrenia at least six months prior to the study and who received consultation in any of the three psychiatric hospitals in Ghana. Economic costs were categorized as direct costs (including medical and non-medical costs of seeking care), indirect costs (productivity losses to caregivers) and intangible costs (non-monetary costs such as stigma and pain). Direct costs included costs of medical supplies, consultations, and travel. Indirect costs were estimated as value of productive time lost (in hours) to primary caregivers. Intangible costs were assessed using the Zarit Burden Interview (ZBI). We employed multiple regression models to assess the covariates of costs, caregiver burden, and QoL. Results: Total monthly cost to caregivers was US$ 273.28, on average. Key drivers of direct costs were medications (50%) and transportation (27%). Direct costs per caregiver represented 31% of the reported monthly earnings. Mean caregiver burden (measured by the ZBI) was 16.95 on a scale of 0–48, with 49% of caregivers reporting high burden. Mean QoL of caregivers was 28.2 (range: 19.6–34.8) out of 100. Better educated caregivers reported lower indirect costs and better QoL. Caregivers with higher severity of depression, anxiety and stress reported higher caregiver burden and lower QoL. Males reported better QoL. Conclusions: These findings highlight the high household burden of caregiving for people living with schizophrenia in low income settings. Results underscore the need for policies and programs to support caregivers. Keywords: Economic burden, Quality of life, Caregiving, Schizophrenia, Ghana * Correspondence: jnonvignon@ug.edu.gh 3Department of Health Policy, Planning and Management, School of Public Health, College of Health Sciences, University of Ghana, Legon, Ghana Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 40 of 87 Background family caregivers. In this study, we sought to address this Mental illness accounts for about 32% of years lived gap by estimating the economic burden and quality of with disability (YLD) and about 13% of disability- life of family caregivers of schizophrenic patients in adjusted life-years (DALYs), a percentage that equals Ghana. that of cardiovascular and circulatory diseases [1]. Schizophrenia is a severe mental disorder character- Methods ized by significant distortions in thinking and percep- Study setting tion, accompanied by an exhibition of inappropriate The study was undertaken at the three psychiatric emotions [2, 3]. Schizophrenia alters individuals’ hospitals in Ghana: Accra, Pantang and Ankaful. perception of reality, often making them think and Accra Psychiatric Hospital is a 600-bed hospital act in ways that are strange or abnormal by socially commissioned in 1906 as the first psychiatric hospital sanctioned standards. The World Health Organization in Ghana and is located in the Greater Accra Region. (WHO) estimates that about 21 million people suffer Established in 1975 with a bed capacity of 500, the from schizophrenia globally [4]. It is estimated that Pantang Psychiatric Hospital is situated in Pantang, 13% of Ghanaians suffer from at least one form of mental also in the Greater Accra Region. Ankaful Psychiatric or substance abuse disorder and that about 32% of all Hospital, which was built in 1965, is a 350-bed hos- mental health cases managed in the country’s three pital located near the coastal town of Cape Coast in psychiatric hospitals are schizophrenic [5]. the Central Region of Ghana that serves patients from Caregiving plays a significant role in the manage- the Central, Western and Ashanti regions of Ghana ment of schizophrenia. For example, the WHO indi- and some neighbouring countries. All the hospitals cates that globally up to 90% of schizophrenic are located in the southern part of the country and patients live with their families [6]. In many low and serve the country’s population of approximately 25 middle income countries (LMICs), the social structure million [18]. of families and economic hardship impede the use of paid caregivers. Other health systems challenges, such Study population and sample size as inadequate health personnel and poor infrastruc- The study population comprised family (primary) care- ture, further increase the burden of caring for people givers of schizophrenic patients reporting to the out- with mental disorders. patient department at each study site. Based on Cochran A key provision of Ghana’s 2012 Mental Health Act [19], the sample size was calculated using the formula (Act 846) is to de-institutionalize mental health care (i.e., below: provide community-based care for people with mental   disorders) in order to decongest the three psychiatric 2Z∝ pð1−pÞ hospitals. The role of caregivers in this community-based n0 ¼ ð 2Deff Þ 2 approach is crucial since family interactions influence e treatment outcomes and relapse rates [7]. However, as in Where n0 is the minimum required sample size; Z 2 is an other LMICs, family caregivers of schizophrenic patients abscissa of the curve that cuts off an area ∝ at the tail (1 in Ghana bear significant economic, psychological and so- – α equals the desired confidence level, i.e., 95%); e is cial burdens, which are often unaccounted for in interven- the desired level of precision; p is the estimated propor- tions [8–15]. For instance, the time required to care for tion of schizophrenic patients that is present in the schizophrenic patients affects the productivity of care- population, which was assumed to be 50% since the givers, often limiting their participation in the labor force, current proportion is unknown; and Deff is the design which has economic implications for the family. Families effect. For a 95% confidence interval, Z∝ is 1.96 and the also incur substantial medical and non-medical costs asso- 2level of precision e (margin error for the study)±5%. ciated with the management of the condition, which may Assuming a design effect of 1.03, we computed a mini- lead to financial impoverishment. In addition, caring mum sample size of. people with mental disorders places significant psycho- logical burden on caregivers and has been shown to nega- 1:962  0:5 0:5 tively affect caregivers’ quality of life (QoL) [16, 17]. Other n0 ¼ 1:03 2 ¼ 395:684≈396:0:05 social burdens that families bear include stigma, which affects the social support that is much needed for such Assuming a 90% response rate, we estimated a mini- patients and their families. mum sample size of 440 patients. We computed the Although Ghana has a high burden of mental illness, sample size required in each facility using probability few studies have examined the burden of mental illness proportionate to size (PPS) of number of schizophrenic in general—and schizophrenia in particular—on unpaid patients (Table 1). Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 41 of 87 Table 1 Sample size for study sites calculated by adding the total number of hours spent Hospital Number of patients Sample size Percentage travelling to and from the hospital. Waiting time consti- Accra 11,256 228 51.8 tuted the total time spent waiting for and receiving treat- Pantang 6780 138 31.4 ment (i.e., from the time the caregiver and patient arrived at the hospital to the time they left the hospital). Ankaful 3660 74 16.8 The time used for other caregiving activities, such as Total 21,696 440 100.0 household activities and leisure, was also calculated and included in the indirect costs. Total indirect cost was In each hospital, folders of patients diagnosed with calculated as the product of the sum of total time spent schizophrenia at least six months preceding the on personal care for patient, transport and waiting for study were sorted and reviewed using criteria health care, other household activities for the patient (in outlined in the 10th revision of the International hours) and the respective (hourly) wage rate. Total Statistical Classification of Diseases and Related economic cost constituted the sum of direct and indirect Health Problems (ICD-10), and primary caregivers costs. who attended the hospital with the patients identi- Intangible costs (sometimes referred to as caregiver fied and interviewed. Accompanying relatives who burden) were assessed using the 12-item Zarit Burden were not the primary caregivers were excluded. Interview (ZBI) tool developed by Bedard et al. [20], Given that many patients presenting for outpatient which comprises items assessing stress, pain, anxiety and services were unaccompanied, accompanying primary depression. The intangible cost was analysed by caregivers were recruited until the required sample summing the scores for all 12 items for each respondent. size for the particular facility was met. The overall score ranges between 0 and 48. Scores were then categorized as low burden (0–16) or high burden Data collection and tools (17–48). Data were collected using a structured, interviewer- Quality of life was assessed using the abridged WHO administered questionnaire with closed- and open-ended Quality of Life (WHOQOL-BREF) tool. The WHOQOL- questions. The questionnaire elicited information on care- BREF comprises 26 items: two items assessing the over- givers’ sociodemographic characteristics, direct health care all quality of life and general health; and 24 assessing costs (medical and non-medical costs) and indirect costs satisfaction in four main domains – seven items on (i.e. productivity losses) to caregivers. physical health, six items on psychological health, three items on social relationships, and eight items on envir- Variables onmental health. Each item was rated on a scale of 1 to We used a cost of illness analysis approach. Costs were 5 with 1 being the lowest and 5 being the highest QoL. analysed from the caregiver perspective and included The mean score of items within each domain was used costs incurred during the month preceding the data to calculate the domain mean. The mean score for each collection. All costs were computed in United States domain was then multiplied by 4 (four) to make it com- Dollars (US$) (3.9 Ghanaian Cedi (GHS) ≈ 1 US$). Costs parable with the full WHOQOL tool (WHOQOL-100) were not adjusted for inflation. Costs were categorized [21]. The scores were scaled in a positive direction so into direct, indirect and intangible costs. Direct costs that a higher score indicated a higher QoL. were further grouped into medical and non-medical Other variables used in the analysis included Age (in costs. Medical costs included the costs of drugs, consul- years) as at last birthday; Sex measured as a dummy, 1 tations, laboratory investigations and diagnostics and for male and 0 for female; Marital status: Married (1), other therapies. Non-medical costs included the cost of single (0); Proximity of residence from health facility travel to and from hospital, food costs incurred by the visited; 1 for far (living more than 30 min from facility, caregiver during the treatment period, accommodation by typical mode of transport used) and 0 for close; costs if the caregiver travelled with the patient away Caregiver’s highest level of education: no education (0), from home, and miscellaneous costs such as telephone primary/junior high school (i.e. basic education or costs related to medical care. The sum of medical and equivalent) (1), secondary (2) and tertiary (3); Caregiver’s non-medical costs constituted the direct costs. employment status: unemployed (0), self-employed (1), Indirect costs were estimated using the national daily private sector (2), public sector (3), student/apprentice minimum wage of US$ 2.0 per day (May 2016) for care- (4); Caregivers were asked whether other members of givers in the formal sector and a local daily agricultural the family spent time taking care of the patient (other wage rate of US$ 4.50 was used for caregivers working family support): yes (1), no (0); and Caregiver’s mental in the informal sector. Unemployed caregivers were con- health status (i.e. depression, anxiety, stress). Mental sidered part of the informal sector. Travel time was health status was assessed using the Depression Anxiety Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 42 of 87 Stress Scale (DASS-21), which comprises of three sub- Table 3 Socio-demographic characteristics of caregivers scales: Depression (DASS-D), Anxiety (DASS-A), and (N = 444) Stress (DASS-S). Responses on each item ranged from 0 Characteristic Number (%) (did not apply to me at all) to 3 (applied to me very Sex much). Male 193 43.5 Reliability of the QoL and Zarit burden scale was Female 251 56.5 assessed using Cronbach’s alpha. With the exception of the depression sub-scale of the DASS-21 and the social Age sub-scale of the WHOQOL, the Cronbach alpha values < 20 3 0.7 fell within the acceptable range of alpha values (0.70 to 20–29 51 11.5 0.95) [22–24] (Table 2). 30–39 95 21.4 40–49 103 23.2 Data analysis 50–59 89 20.0 Descriptive statistics (mean, standard deviation) of study variables are presented in Table 3. Two sets of 60–69 76 17.1 multivariate linear regression models were fitted to > 69 27 6.1 assess factors associated with economic costs and Marital Status QoL. The first set of models had direct and indirect Married 294 66.2 costs as dependent variables, and demographic and Single 150 33.8 socioeconomic factors (e.g., age, sex, marital status, Religion proximity of residence to facility, highest education level and employment status) as explanatory variables. Christian 393 88.5 The second set of models had the four domains of Muslim 45 10.1 QoL as dependent variables. Explanatory variables Traditionalist 2 0.5 comprised direct costs, indirect costs, Zarit burden Other 4 0.9 scores, time and duration of care provided, mental Educational Level health indices (anxiety, depression, stress). The No education 50 11.3 models also controlled for caregivers’ sociodemo- graphic characteristics. A final model was fitted to in- Primary 146 32.8 vestigate the covariates of caregiver burden (measured Secondary 149 33.6 by the ZBI score). Tertiary-Graduate/Post Graduate 99 22.3 Employment Status Results Self employed 240 54.2 Background characteristics of caregivers Private sector 70 15.8 Caregivers’ sociodemographic characteristics are summa- rized in Table 3. Caregivers’ mean age was 47 years (45% Public sector 41 9.2 were aged 30–49 years and 37% aged 50–69 years). Unemployed 78 17.6 Fifty-seven percent of caregivers were female and 66% Student/Apprentice 14 3.2 Table 2 Internal consistency of the mental health status, quality were married. Twenty-two percent of the caregivers had of life, and Zarit burden indices tertiary education: 11% had university degrees, and 11% Domain Number of items Cronbach’s alpha had certificate, diploma or post-diploma qualifications. Mental health status About 34% of the caregivers had secondary education Depression 7 0.67 and 11% had no formal education. In terms of employ- ment status, 54% of caregivers were self-employed, 16% Anxiety 7 0.80 were working in the private sector, 9% were employed in Stress 7 0.83 the public sector, and 18% were unemployed. About 3% Quality of life of the caregivers were students or apprentices. Physical 7 0.82 Psychological 6 0.77 Economic costs of caregiving Social 3 0.56 The average caregiving cost per month was US$273.28, with indirect costs being $242.95 and direct costs being Environmental 8 0.81 $30.36 (Table 4). Total cost for the study sample was Zarit burden index 12 0.83 $76,839.54, with indirect costs accounting for about Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 43 of 87 Table 4 Economic costs to caregiving for schizophrenia Cost component N Total costa (US$) Standard deviation Cost profileb (%) Average cost (US$) Direct costs Direct medical cost Consultation 444 1411.02 7.02 1.8 3.17 Drugs 444 6668.49 22.59 8.7 15.01 Lab/Diagnostics 442 428.20 5.38 0.5 0.97 Other 442 144.64 4.20 0.2 0.33 Sub total 8652.36 11.2 19.50 Direct non- medical costs Transportation 444 3675.57 9.62 4.8 8.28 Meals 442 843.15 5.56 1.1 1.90 Lodging 442 153.20 5.05 0.2 0.35 Miscellaneous 442 142.69 1.20 0.2 0.33 Sub total 4814.62 6.3 10.85 Total direct costs 13,466.97 17.5 30.36 Indirect costs Formal sector 131 9118.97 40.26 11.9 69.61 Informal sector 313 54,253.59 88.38 70.6 173.33 Total indirect costs 444 63,372.56 82.5 242.95 Grand Total Cost 76,839.54 100 273.28 aUS$ 1.00 equivalent to GHS 3.9 (Bank of Ghana average monthly interbank exchange rate, June 2016) bPercentages computed by dividing the total cost for the item by the grand total cost and multiplying the result by 100 82.5%. The key components of direct costs were drug Tertiary education was significantly associated with (about 50%) and transportation (27%) costs. indirect costs. Compared to those with no formal education, indirect cost for caregivers with tertiary Intangible costs of caregiving education were lower by GHS 216 (US$55.38, − 95% CI: The mean caregiver burden score was 16.95 (SD 8.82) -329.41, −102.10, p-value = 0.0007). A unit increase in out of a maximum of 48. About 51% of the caregivers age, resulted in a GHS 3.3 increase in indirect cost (US$ reported low burden (i.e., ZBI score of >16). The analysis 0.75, 95% CI: 0.99, 5.52, p < 0.05). Indirect cost for males also revealed that the burden in caregiving was signifi- was GHS 61.1 lower compared to females (US$11.86, cantly higher for females (61%) than for males (39%) 95% CI: -121.77, −0.41, p < 0.05). among caregivers reporting high burden. With respect to predictors of ZBI score, anxiety, de- pression and stress were related to Zarit burden score, Caregivers’ quality of life as presented in Table 7. The burden of caregivers with The mean quality of life scores by domain and back- severe anxiety was approximately 4% (95% CI: 1.02, 6.59; ground characteristics are summarized in Table 5. The p = 0.0022) higher than those with no anxiety disorders, average overall QoL was 28.2 (SD 12.0). Average scores controlling for other covariates. in the four domains were 19.6 (physical), 29.1 (psycho- Table 8 shows that for a unit increase in the Zarit bur- logical), 29.2 (social), and 34.8 (environmental). QoL den score, QoL in relation to the physical domain de- scores across all domains were, on average, higher creased by 0.25 (95% CI: -0.38, −0.13, p = 0.0001). among males (29.6) than females (27.1) (p < 0.05). Similar results were obtained for the psychological QoL Caregivers who were married had higher QoL scores domains. The coefficients for the Zarit burden score, than those who were unmarried. The mean score across taken for all the four QoL domains together, were statis- all domains increased as the caregiver’s educational level tically significant (F = 5.30, p = 0.0004). There was no increased. statistically significant relationship between the direct and indirect cost and the four QoL domains. The QoL Predictors of costs and QoL in relation to the physical and psychological domains The multivariate linear multiple regression results for was higher among caregivers who reported family covariates of economic cost are shown in Table 6. support. The QoL with reference to the psychological Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 44 of 87 Table 5 Mean quality of life scores, by domain and background characteristics Physical Psychological Social Environmental Total Mean (SD) p-value Mean (SD) p-value Mean (SD) p-value Mean (SD) p-value Mean (SD) p-value Agea 0.303 0.257 <0.05 0.434 0.511 < 30 20.1 (17.5) 31.6(24.1) 35.2(27.0) 33.6(23.3) 30.1(13.3) 30–39 20.4 (17.6) 32.2(25.7) 30.2(24.6) 31.1(24.3) 28.5(11.7) 40–49 19.7 (15.9) 26.2(22.2) 27.6(24.7) 37.2(25.9) 27.8(11.3) 50–59 18.8 (14.4) 25.9(21.1) 23.4(21.2) 38.1(25.1) 26.6(12.1) 60+ 19.3 (15.5) 30.6(24.9) 31.6(24.6) 33.6(24.3) 28.8(12.2) Sex b <0.001 <0.01 <0.05 <0.05 <0.05 Male 20.0 (16.1) 30.8(25.0) 31.0(26.3) 36.4(26.1) 29.6(12.6) Female 19.3 (16.1) 27.9(22.7) 27.7(22.9) 33.6(23.8) 27.1(11.5) Marital statusb Married 20.0(15.7) 30.0(24.1) 29.1(23.6) 33.6(24.7) 28.1(11.7) Single 19.0(16.4) 0.270 28.1(23.1) 0.330 29.4(26.1) 0.071 37.2(24.9) 0.436 28.4(12.5) 0.863 Religionc <0.05 0.872 0.486 0.270 0.972 Christian 19.1(15.4) 28.8(23.4) 29.6(24.6) 35.1(24.9) 28.2(11.9) Muslim 23.9(20.3) 31.6(26.6) 25.8(23.4) 32.5(24.4) 28.513.0) Educationa <0.01 <0.001 <0.001 <0.001 <0.001 None 19.1(16.4) 22.3(17.5) 23.2(19.4) 27.7(21.3) 23.1(8.4) Primary 19.5(17.9) 26.2(20.2) 23.5(22.1) 30.6(24.7) 24.9(11.5) Secondary 20.0(16.2) 28.3(22.5) 30.3(24.7) 35.4(23.7) 28.5(12.0) Tertiary 19.1(14.8) 36.1(29.1) 31.9(26.5) 38.9(28.3) 31.5(12.7) Employmenta 0.703 0.140 0.911 0.247 0.558 Unemployed 21.4(19.0) 31.6(25.6) 32.0(25.2) 32.7(23.8) 29.4(13.8) Self-employed 19.6(15.7) 27.3(22.2) 29.0(24.6) 35.2(25.3) 27.8(11.3) Private sector 17.4(12.5) 32.2(26.4) 27.7(24.4) 38.0(26.1) 28.8(11.8) Public sector 19.6(16.3) 28.3(23.1) 26.6(22.5) 31.5(21.7) 26.6(12.3) Total 19.6 (16.0) 29.1(23.7) 29.2(24.5) 34.8(24.8) 28.2(12.0) aKruskal-Wallis test used in determining significance of difference bWilcoxon Rank Sum test used in determining the significance of difference cOther religions constituted 1% and was not considered in the analysis due to its insignificance Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 45 of 87 Table 6 Multivariate linear multiple regression results for covariates of economic cost Cost Direct Indirect Joint effect Covariates β (95% CI) β (95% CI) F-test statistic p-value ** 0.71 3.25 Age in years (−0.17,1.59) (0.99,5.52) 10.18 0.0001*** Sex * Female Ref Ref Male 12.06 −61.09 3.65 0.0269* (−11.58,35.70) (−121.77,-0.41) Marital status Single Ref Ref Married 19.30 53.42 3.93 0.0203* (−5.58,44.17) (−10.43,117.28) Proximity * Close Ref Ref Far 32.33 0.84 2.91 0.0554 (5.52,59.15) (−68.00,69.67) Education *** None Ref Ref Primary/junior high school 12.27(−26.56,51.11) −64.17(−163.87,35.52) 18.61 0.0001*** Secondary 16.19(−22.77,55.16) −79.76(−179.78,20.27) Tertiary 39.84(−4.43,84.11) −215.75(−329.41,-102.10) Employment status *** None Ref Ref Private 1.07(−40.83,42.96) −327.68(−435.22,-220.14) Public 5.58(−41.69,52.86) −302.55(−423.91,-181.19) 2.36 0.0953 Self-employed 7.35(−25.48,40.17) −45.51(−129.79,38.76) Student/apprentice 66.56(−6.26,139.38) −19.64(−206.58,167.30) R2 50.8% 64.2% β is the estimated effect of covariate; R2 is the adjusted coefficient off determination; CI is confidence interval; ref. is the reference category *p < 0.05, ** p < 0.01, *** p < 0.001 domain was about 3% (95% CI: 0.68, 5.12; p = 0.0060) (95% CI: -0.28, −0.06; p = 0.0030), controlling for higher for participants who reported family support other covariates in the model. Overall QoL was 17% compared to those that did not. Depression was associ- lower for caregivers with depression compared to ated with all the four domains of QoL (F = 19.20, those with no depression. p = 0.0001). The QoL was 17% (95% CI: -22.92, −11.87; p-value = 0.0001) lower for participants with severe Discussion forms of depression compared to those with no depres- The aim of this study was to estimate the economic sion. The results further showed that more highly costs and QoL of family caregivers of schizophrenic educated caregivers reported higher QoL (7–15% more) patients attending three psychiatric hospitals in Ghana than those who were uneducated, and male caregivers and to assess the factors associated with these two out- reported higher QoL (2–6% more) than female comes. The average costs incurred by caregivers caregivers. amounted to approximately US$273 per month, with The results from the multiple linear regression about 82% of these costs being indirect costs (in terms analysis in Table 9 indicated that a unit increase in of lost productivity). The mean caregiver burden (mea- Zarit burden score reduced caregivers’ QoL by 0.17 sured by the ZBI) was 16.95 on a scale of 0–48, with Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 46 of 87 Table 7 Multiple linear regression results of total caregiver 49% of caregivers reporting high burden. Overall, care- burden (ZBI) givers reported low QoL (28.2 out of 100). Covariates β 95% CI The estimated mean monthly direct cost per month Age in years −0.01 (−0.07, 0.05) (US$30) represented about 18% of the total cost in- Sex volved in caregiving. This proportion is lower than that obtained by Addo et al. [25] (21%) in their study Female Ref on the cost of caregiving for mental illness (not Male −0.42 (−1.89, 1.05) schizophrenia specifically as in the current study) in Marital status: Ghana. Our finding is also lower than that found by Single Ref Zhai et al. [3] (33%) in their study on the cost of Married −0.09 (−1.64, 1.46) caregiving for schizophrenia in China. Although Zhai Proximity et al. [3]’s study was specific to schizophrenia, differ- ences in the study contexts may have accounted for Close Ref the differences in the proportion accounted for by Far 0.90 (−0.78, 2.58) direct costs, implying that access to treatments and Education study contexts could influence the proportion of None Ref overall costs of caring for vulnerable populations. The Primary/junior high school 0.10 (−2.34, 2.55) relative contribution of direct costs to the total Secondary −4.43 (−2.92, 2.06) economic costs further implies that caregivers bear significant indirect costs which must be taken into ac- Tertiary −1.01 (−3.86, 1.84) count in efforts to ameliorate the economic burden of Employment status** mental health on families. None Ref Similar to Knock et al. [26], the current study’s re- Private 3.47 (0.74, 6.19) sults demonstrate that caregivers of people with Public 6.09 (3.10, 9.07) schizophrenia bear levels of other types of psycho- Self-employed 1.79 (−0.30, 3.88) logical and social burdens that are difficult to quan- tify. The current study found that caregivers of Student/apprentice 0.17 (−4.37, 4.71) schizophrenics reported lower QoL compared to pre- Direct cost 0.01 (−0.001, 0.01) vious studies [16, 27] conducted in Chile and France. Indirect cost 0.002 (−0.002, 0.01) Factors such as caregiver burden and depression were Duration of care given 0.002 (−0.01, 0.01) associated with lower QoL, whereas support from Daily care given time in hours −0.10 (−0.32, 0.13) other family members and education were associated Other family with higher QoL. Sex was also significantly associated with QoL, with males reporting higher QoL than No Ref females. Further, 61% of caregivers who reported Yes 0.42 (−1.03, 1.87) higher burden were females and 39% were males. Anxiety** Ohaeri [28] argues that caregiving roles are primarily Normal Ref undertaken by female family members who bear Moderate 2.82 (1.05, 4.59) much of the burden (e.g., psychological effect) of care Severe 3.80 (1.02, 6.59) in Nigeria. Similarly, Papastavrou et al. [29] found that females were more burdened than males and Depression*** experienced chronic stress because of caregiving Normal Ref responsibilities for schizophrenics in Cyprus. Sex Moderate 3.24 (1.54, 4.94) differences in the burden of care have also been re- Severe 8.25 (4.71, 11.80) ported in studies examining elderly care [30]. Such Stress*** findings reflect broader societal realities and require Normal Ref more in-depth investigation. There are limitations to the study that are worth Moderate 5.08 (2.91, 7.24) noting. First, it was not possible to determine whether Severe 7.70 (4.70, 10.70) the caregiver received any assistance, in cash or in R2 51.9 kind from other members of the family or the patient; β is the estimated effect of covariate; R2 is the adjusted coefficient off thus, the cost burden may not be entirely attributed determination; CI is confidence interval; ref. is the reference category *p < 0.05, **p < 0.01, ***p < 0.001 to the main caregiver. Second, it was not possible to conduct more nuanced analysis to assess possible Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 47 of 87 Table 8 Multivariate multiple regression results for covariates of quality of life domains Domains measuring quality of life Physical Psychological Social Environment Joint effect Covariates β (95% CI) p-value β (95% CI) p-value β (95% CI) p-value β (95% CI) p-value F-test statistic p-value −0.14 −0.09 −0.06 −0.05 Age in years (−0.22, −0.06) (−0.18, 0.002) (−0.17, 0.04) (−0.13, 0.04) 3.19 0.0133* Sex *** ** *** * Female Ref Ref Ref Ref Male 4.08(2.15, 6.01) 2.93(0.68, 5.17) 5.66(3.09, 8.22) 2.22(0.16, 4.28) 6.14 0.0001*** Marital status: *** Single Ref Ref Ref Ref Married 0.45(−1.59, 2.48) −1.73(−4.10, 0.63) −5.68(−8.38, −2.98) −2.18(−4.35, −0.02) 5.08 0.0005*** Proximity *** * * ** Close Ref Ref Ref Ref Far −5.88(−8.10, −3.66) −3.01(−5.59, −0.43) −3.57(−6.52, −0.63) −3.66(−6.02, −1.30) 6.68 0.0001*** Education *** *** * *** None Ref Ref Ref Ref Primary/junior high school 2.20(−1.00, 5.40) 3.59(−0.13, 7.31) 6.79(2.54, 11.05) 5.24(1.83, 8.65) Secondary 3.02(−0.24, 6.29) 5.12(1.33, 8.91) 5.23(0.90, 9.57) 6.53(3.06, 10.01) Tertiary 7.05(3.32, 10.79) 11.04(6.69, 15.38) 9.81(4.84, 14.77) 14.55(10.57, 18.53) 12.03 0.0001*** Employment status None Ref Ref Ref Ref Private 2.41(−1.18, 6.01) 0.07(−4.11, 4.25) −1.61(−6.39, 3.16) 1.49(−2.35, 5.32) Public 1.12(−2.86, 5.11) −1.79(−6.42, 2.84) −5.02(−10.32, 0.27) −1.26(−5.50,2.99) Self-employed 2.81(0.06, 5.56) 1.57(−1.63, 4.76) −0.90(−4.55, 2.75) 2.86(−0.07, 5.79) Student/apprentice −2.91(−8.85, 3.03) −1.61(−8.51, 5.30) −5.36(−13.25, 2.53) 1.51(−4.82, 7.84) 1.38 0.2412 Direct cost −0.003(−0.01, 0.005) −0.005(−0.014, 0.004) −0.0008(−0.01, 0.01) −0.003(−0.01, 0.01) 0.35 0.8468 Indirect cost 0.0001(−0.005, 0.005) −0.007(−0.01, −0.001) −0.001(−0.01, 0.01) −0.004(−0.01, 0.001) 1.46 0.2151 *** *** Zarit −0.25(−0.38, −0.13) −0.27(−0.42, −0.12) −0.06(−0.23, 0.11) −0.10(−0.23, 0.04) 5.30 0.0004*** Duration of care given −0.003(−0.013, 0.007) −0.004(−0.02, 0.01) 0.01(−0.01, 0.02) 0.002(−0.01, 0.01) 0.85 0.4931 Daily care given time in hrs 0.14(−0.16, 0.44) 0.17(−0.18, 0.52) 0.002(−0.40, 0.40) 0.27(−0.05, 0.59) 0.63 0.6409 Other family * ** No Ref Ref Ref Ref Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 48 of 87 Table 8 Multivariate multiple regression results for covariates of quality of life domains (Continued) Domains measuring quality of life Physical Psychological Social Environment Joint effect Covariates β (95% CI) p-value β (95% CI) p-value β (95% CI) p-value β (95% CI) p-value F-test statistic p-value Yes 2.38(0.47, 4.29) 2.90(0.68, 5.12) −2.33(−4.87, 0.20) 0.56(−1.48, 2.59) 6.24 0.0001*** Anxiety ** Normal Ref Moderate 0.13(−2.22, 2.47) 1.29(−1.43, 4.01) 0.07(−3.04, 3.18) 0.74(−1.75, 3.24) Severe −2.80(−6.48, 0.87) 5.12(0.84, 9.39) −0.18(−5.06, 4.70) 3.60(−0.31, 7.52) 4.06 0.0030** Depression *** *** *** *** Normal Ref Ref Ref Ref Moderate −2.73(−5.00, −0.47) −6.02(−8.66, −3.39) −3.30(−6.31, −0.29) −5.11(−7.52, −2.70) Severe −8.39(−13.15, −3.64) −17.39(−22.92, −11.87) −12.29(−18.60, −5.97) −16.40(−21.47, −11.34) 19.20 0.0001*** Stress ** Normal Ref Ref Ref Ref Moderate 2.46(−0.45, 5.36) 3.04(−0.34, 6.41) 0.30(−3.56, 4.15) 2.34(−0.76, 5.44) Severe −2.44(−6.48, 1.60) −1.26(−5.96, 3.44) −10.43 (−15.80, −5.06) −1.33(−5.64, 2.988) 3.73 0.0054** R2 68.5 69.8 64.3 67.2 β is the estimated effect of covariate, R2 is the adjusted coefficient off determination, CI is confidence interval; ref. is the reference category, Phy (Physical domain), Psy (Psychological domain), Soc (Social domain), Env (Environmental domain) * p < 0.05, ** p < 0.01, *** p < 0.001 Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 49 of 87 Table 9 Multiple regression results for covariates of overall Table 9 Multiple regression results for covariates of overall quality of life quality of life (Continued) Covariates Overall quality of life score Covariates Overall quality of life score β 95% CI β 95% CI Age in years −0.08 (−0.15, −0.1) Severe −3.87 (−7.48, −0.25) Sex*** R2 70.1 Female Ref β is the estimated effect of covariate, R2 is the adjusted coefficient off determination, CI is confidence interval, ref. is the reference category Male 3.72 (1.99, 5.45) *p < 0.05, **p < 0.01, ***p < 0.001 Marital status* Single Ref underlying reasons (e.g., coping styles) for some of Married −2.29 (−4.11, −0.47) the differences observed. Nonetheless, the current Proximity*** study adds to the sparse literature on the economic and social costs of mental disorders in sub-Saharan Close Ref Africa. Far −4.03 (−6.01, −2.05) Education*** Conclusions None Ref The study findings highlight the significant burden of Primary/junior high 4.46 (1.59, 7.32) caring for people with schizophrenia on family care- school givers in Ghana. As the country considers deinstitu- Secondary 4.98 (2.06, 7.89) tionalizing mental health care, it is important that Tertiary 10.61 (7.27,13.96) measures to alleviate the direct costs on caregivers are taken into account. Currently, the National Health Employment status Insurance Scheme (NHIS) does not cover services for None Ref schizophrenia or other mental disorder, deepening the Private 0.59 (−2.63, 3.81) burden of families. One possible avenue to alleviate Public −1.74 (−5.30, 1.83) the costs incurred by caregivers of people with mental Self-employed 1.59 (−0.87, 4.05) illness would be to extend social protection programs, Student/apprentice −2.09 (−7.41, 3.22) such as the Livelihood Empowerment Against Poverty − − (LEAP) program (which provides cash transfers toDirect cost 0.003 ( 0.01,0.004) vulnerable groups), to caregivers to cushion the ef- Indirect cost −0.003 (−0.01, 0.001) fects of the shocks of the direct costs. Study findings Zarit −0.17 (−0.28, −0.06) also underscore the significant non-quantifiable bur- Duration of care given 0.0002 (−0.01, 0.01) dens, such as emotional stress, that are borne by Daily Care given time 0.15 (−0.12, 0.41) caregivers and that affect their quality of life. The in hours quality of life of caregivers of patients with mental Other family disorders should be considered in health policies re- No Ref lated to mental illness. Yes 0.88 (−0.83, 2.58) Abbreviations Anxiety DALYs: Disability-adjusted life-years; DASS: Depression anxiety stress scale; GHS: Ghanaian Cedi; ICD-10: International Classification of Disease, 10th Normal Ref edition; LEAP: Livelihood empowerment against poverty; LMICs: Low and Moderate 0.56 (−1.54, 2.65) middle income countries; NHIS: National Health Insurance Scheme; PPS: Probability proportionate to size; QoL: Quality of Life; UK: United Severe 1.43 (−1.85, 4.72) Kingdom; US$: United States Dollar; WHO: World Health Organisation; Depression*** WHOQOL: WHO Quality of Life; WHOQOL-BREF: abridged WHO Quality of Life; YLD: Years lived with disability; ZBI: Zarit Burden Interview Normal Ref Moderate −4.29 (−6.32, −2.26) Acknowledgements The authors acknowledge the following for their support in implementing Severe −13.62 (−17.87, −9.37) the study: Joseph Osafo and Gloria Odue, both at the Psychology Department, University of Ghana; the Mental Health Authority of Ghana; and Stress** the management and staff of the study facilities. The authors also thank all Normal Ref the study participants. Moderate 2.03 (−0.57, 4.63) Funding This research was funded by an African Doctoral Dissertation Research Fellowship (ADDRF) re-entry grant award to JN and IAK offered by the Opoku-Boateng et al. BMC Health Services Research 2017, 17(Suppl 2):697 Page 50 of 87 African Population and Health Research Center (APHRC) in partnership with 9. Bevans MF, Sternberg EM. Caregiving burden, stress, and health the International Development Research Centre (IDRC). Publication was effects among family caregivers of adult cancer patients. JAMA. 2012; funded by the International Development Research Center (Grant Number 307(4):398–403. 107508–001) and the John D. and Catherine T. MacArthur Foundation (Grant 10. Dwyer JW, Lee GR, Jankowski TB. Reciprocity, elder satisfaction, and Number 14–107495-000-INP). caregiver stress and burden: the exchange of aid in the family caregiving relationship. J Marriage Fam. 1994;56(1):35–43. Availability of data and materials 11. Knapp M, Mangalore R, Simon J. The global costs of schizophrenia. Data supporting the findings of the study will be made available upon Schizophr Bull. 2004;30(2):279–93. request. 12. Kreisman DE, Joy VD. Family response to the mental illness of a relative: a review of the literature. Schizophr Bull. 1974;10:34–57. About this supplement 13. Robison J, Fortinsky R, Kleppinger A, Shugrue N, Porter M. A broader view of This article has been published as part of BMC Health Services Research family caregiving: effects of caregiving and caregiver conditions on Volume 17 Supplement 2, 2017: Research for health systems strengthening depressive symptoms, health, work, and social isolation. J Gerontol B in Africa: studies by fellows of the African Doctoral Dissertation Research Psychol Sci Soc Sci. 2009;64(6):788–98. Fellowship (ADDRF) program. The full contents of the supplement are 14. Salama RAA, El-Soud FAA. Caregiver burden from caring for impaired available online at https://bmchealthservres.biomedcentral.com/articles/ elderly: a cross sectional study in rural lower Egypt. Ital J Public Health. supplements/volume-17-supplement-2. 2012;9(4). doi: http://dx.doi.org/10.2427/8662. 15. Yusuf AJ, Nuhu FT, Akinbiyi A. Caregiver burden among relatives of patients Authors’ contributions with schizophrenia in Katsina, Nigeria. S Afr J Psychiatr. 2009;15(2). JN and IAK conceived the study. YNOB, GCA, SAA, SD, DD, YT, MA 16. Margetic BA, Jakovljevic M, Furjan Z, Margetic B, Marsanic VB. Quality of life contributed to design of the study and data collection.. YNOB led the of key caregivers of schizophrenia patients and association with kinship. collection of data. YNOB, JN, IAK, DD, SAA, GCA, MA contributed to analysis Cent Eur J Public Health. 2013;21(4):220–3. and interpretation of results. YNOB and JN drafted the manuscript. The 17. Rawat P. Poster #M258 Quality of life and depression among caregivers of manuscript was reviewed by all the authors for intellectual content. The final schizophrenics. Schizophr Res. 2014;153(Supplement 1):S283–S85. version of the manuscript was approved by all authors. 18. GSS. Population and housing census 2010: summary report of final results. Ghana Statistical Service: Accra; 2012. Ethics approval and consent to participate 19. Cochran WG. Sampling techniques. 2nd ed. New York: John Whiley and Ethical approval for the study was granted by the Ghana Health Service Sons Inc; 1963. Ethical Review Committee. 20. Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M. The zarit burden interview: a new short version and screening version. Gerontologist. Consent for publication 2001;41(5):652–7. Not applicable 21. The WHOQOL Group. Whoqol-Bref: introduction, administration, scoring and generic gersion of the assessment. Programme on Mental Health. 1996;16:1-12. Competing interests 22. 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