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Assessing Women Caregiving Role to People Living With HIV/AIDS in Nigeria, West Africa:

Assessing Women Caregiving Role to People Living With HIV/AIDS in Nigeria, West Africa: HIV/AIDS scourge remains high in most countries of sub-Saharan Africa such as Nigeria, which is home to about 3.3 million HIV positive individuals and represents the second largest burden of HIV/AIDS care, treatment and demand worldwide after South Africa. Anti-retroviral treatment options though a welcome development, has increased the number of people living with this chronic illness, and most of them depend on family members for physical and emotional support. Traditional gender norms in Nigeria ensure that legitimately, women and girls are the first options for caregiving roles. This mandatory role has in turn imposed psychosocial disruption in the lives of female family members in Calabar, Nigeria. This descriptive study utilized convenient sampling technique, Zarit Burden Interview scale and semistructured questionnaires for data collection (260 respondents), and data analyses were achieved using SPSS16.0. The study showed that a significant (p < .05) proportion of women (91%) were involved in providing care, including children from 10 years and above. Caregivers had minimal social support which increased the burden they experienced. The need for policy that recognizes and supports female caregivers (“silent cornerstone”) to reduce burden and ensure high quality care of people living with HIV/AIDS (PLWHA) in Nigeria is advocated. Keywords female caregivers, PLWHA, burden of caregiving, Nigeria caregivers or the effect the role is having on them. Habid and Introduction Rahman (2010) reported that family caregivers are physi- Providing care to a sick family member is a tradition embed- cally, psychologically and socially disabled due to caring for ded in African culture. It is regarded as an age-old act of PLWHA. kindness, love and loyalty, which bind family members Health systems in most developing countries do not have together (Asuquo, Adejumo, Etowa, & Adejumo, 2013; the capacity to provide long-term care and support to Smith & Segal, 2013). With sub-Saharan Africa accounting PLWHA, and patients are discharged without contact with for 69% of people living with HIV, coupled with advance- family caregivers (Tshililo & Davhana-Maselesele, 2009). ment in medical treatment and improvement in life expec- Patient discharge is based on the implicit assumption that, tancy, many more persons will assume caregiving role of family members are always available to provide care at home people living with HIV/AIDS (PLWHA; Singh, Chaudoir, to the dependent ill, without adequate educational prepara- Escobar, & Kalichman, 2011; UNAIDS, 2012). Studies have tion of family members on their expected roles (VSO, 2006). shown that most HIV infected individuals return to their Reinhard, Given, Petlick, and Bemis (2008) observed that a homes for care and psychological support (Bachmanna & serious health care gap exists as health professionals’ fail to Booysenb, 2006; Global Coalition on Women and AIDS, recognize caregivers as “hidden” patients even with numer- 2004; Grunfeld et al., 2004; Kipp, Nkosi, Laing, & Jhangri, ous research evidence on adverse physical and mental health 2006; VSO, 2006; WHO, 2005). According to Takamura and Williams (1998) in our society, family caregivers often go unnoticed except by those who depend on their care. University of Calabar, Nigeria Similarly, Abasiubong, Bassey, Ogunsemi, and Udobang University of Ottawa, Ontario, Canada (2011) asserted that while resolute efforts are made to Corresponding Author: improve the quality of life of PLWHA in many countries, Ekaete Francis Asuquo, University of Calabar, Calabar 54001, Nigeria. little or no acknowledgment is given to the supportive role of Email: ekaetefasuquo@yahoo.com Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 3.0 License (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 SAGE Open consequences from physically and emotionally demanding the impact of HIV and burden of care is greater in resource- work of caregiving. The physical tasks performed by the poor settings, particularly for rural and grass-root caregivers. caregivers transcend minor to complex tasks, which is simi- UNAIDS (2008) reported that women in Africa make up lar to those carried out by paid health or social service pro- 70% of the world’s poor and two thirds of the world’s illiter- viders. These impart a great degree of burden on the ate and accounts for two thirds of all caregivers for people caregivers especially, as they combine the caregiving ser- living with HIV in Africa. The unique contribution in ame- vices with their official roles in the society. Caregiving has liorating the impact of HIV is not only peculiar to African increased the burden of care on many households particu- women alone. Global Coalition on Women and AIDS (2004) larly the females, by worsening their economic status and asserted that about 90% of the care due to HIV infection is subjecting them to imminent poverty. The need for heal provided at home by women and girls in addition to other thcare system and government to promulgate policies that tasks they already perform. Arno (2002) and Family Care will support female caregivers and also enhance quality of Alliance (2003) have also reported that women caregiving care to PLWHA in Nigeria becomes imperative. This study provides the backbone of support to the complex system of therefore highlights the extent of burden experienced by long-term care and the value of the informal care that women female caregivers compared to male counterparts and the provide ranges from US$148 billion to US$188 billion annu- support available to all caregivers of PLWHA in Calabar ally. Although annual monetary value of unpaid caregiving Municipality, Nigeria. in Nigeria has not yet been quantified, the global estimated value of unremunerated work by women is 11 trillion dollars (UNAIDS, 2008). Women and Burden of Care Forever Young Information (FYI, 2013) affirmed that Women constitute about 50% of the people living with HIV females assume caregiving role at a young age and take an today worldwide (WHO, 2013). In 2007, the prevalence of active interest in their love one’s health and maintain this HIV infection had been on men than women (UNAIDS, role as they grow older. Between the ages of 30 and 55 years, 2008), but with the turn of events women now bear the bur- women become primary caregivers in Ontario households den of this devastating disease more than men (WHO/ and assume the responsibility of health care decisions for UNICEF/ UNFPA/World Bank, 2010). In sub-Saharan their children, siblings, spouses and parents (FYI, 2013). Africa, women constitute 60% of people living with HIV and Canadian Caregiver Coalition (2013) noted that about 4 to 5 the proportion of women living with HIV has been increas- million people serve as caregivers with the majority being ing in the last 10 years (WHO, 2013). These figures vindicate women and they provide more than 80% of the care needed the words of Lewis (2005) that HIV/AIDS in Africa has a by HIV individuals. These “long-term” conditions and con- “female face.” Apart from biological vulnerability of women stitute more than US$5 billion of unpaid labor annually to to HIV, the African traditional gender norms stipulate care- the health care system. Hence, family caregivers (women) giving as female normative role where women and girls in are the invisible backbone of the health and long-term care the various communities become caregivers, while still need- system which signify need for support to reduce negative ing care themselves, and possibly being HIV positive also consequences on their health. (UNAIDS, 2008; UNIFEM, 2005; VSO, 2006). These “tra- ditional gender norms” also exclude men and boys becoming Caregiving and Support caregivers, exacerbating the burden for females. Many women and girls have left work and school to provide care, Caregiving in the Nigerian society though associated with and most have taken on this role in addition to their existing some rewarding experiences, is laden with chronic life reproductive and primary roles as housewives/housekeepers strains from excessive job responsibilities. Caregivers (VSO, 2006). attempt to balance caregiving with their other activities such Encouraging care provision in homes is regarded as a as work, family and leisure, to meet the demands of daily cost-effective strategy for governments and the private sec- living. Inability to strike a balance results in experiences of tor, but little consideration is given to the physical, emotional negative reactions such as increased sense of burden and economic costs to households and the caregivers who (Argimon, Limon, Vila, & Cabezas, 2004; Pavalko & take on the additional burdens, many of whom are often poor Woodbury, 2000; Stephens, Townsend, Martire, & Druley, and living below US$ 1.00 to US$1.25 per day (Asuquo, 2001). According to Reinhard et al. (2008) both negative and Etowa, & Adejumo, 2013; United Nations, 2012; United positive consequences of providing care may exist simulta- Nations Development Progress, 2013). Mbirimtengerenji neously. The negatives consequences emanate from exces- (2007) asserted that not only does correlation exist between sive life stressors which require daily readjustments, which if poverty and HIV infection but HIV remained the exact out- not may result in interference with performance of role- come of poverty in the sub-Saharan region with sexual trade, related activities (Thoits, 1986). Excessive caregiving stress migration, polygamy, and teenage marriages as its predic- could result in physical, social and emotional consequences tors. According to VSO-RAISA (2007) and UNAIDS (2008), which manifest as low perception of health status, perceived Asuquo et al. 3 high stress levels, deep unhappiness, social anxiety, depres- the management of PLWHA. The study was informed by the sion and induced changes that could degenerate to heart dis- high HIV prevalence of 10.4% at the study site (Asuquo, ease, hypertension, increase rate of physiological illness and Etowa, & Adejumo, 2013; Federal Ministry of Health suppressed immune responses (Abasiubong et al., 2011; [FMOH], 2011). ANON, 2009; Kipp et al., 2006; Kurtz, Kurtz, Given, & Given, 2005; Montgomery, Rowe, & Kosloski, 2007; Study Design and Participants National Alliance for Caregiving (NAC) & AARP, 2009; Zarit, 2004). The study was a cross-sectional descriptive research which The need to support caregivers’ well-being and that of utilized convenient sampling technique to generate data from care recipient becomes imperative especially with the advent 260 participants who were primary caregivers to PLWHA. of antiretroviral therapy. Supporting caregivers’ entails pro- The study participants were identified through HIV clinic of viding coping assistance, or involving significant others in the UCTH where some of the researchers worked as employ- ees (Clinical Instructors) and the visitation list of a voluntary an individual’s stress-management efforts (Hornillos & caregiver of PLWHA, an NGO (Positive Development Crespo, 2011; Thoits, 1986). Turner and Street (1999) Foundation, Calabar, Nigeria). Information letter and invita- asserted that support could be through instrumental aid tion for willing participants were posted at UCTH and the (actions or materials provided to ensure attainment of role NGO office where willing participants contacted the responsibilities), socioemotional aid (infer the assertions or researcher. The participants who met the inclusion criteria demonstrations of love, caring, esteem, sympathy, and group and were willing to participate in the study were contacted. belonging), and informational aid (communications of infor- As described previously (Asuquo, Etowa, & Adejumo, mation that makes life challenges easier). These three mea- 2013), the inclusion criteria were: being a caregiver for more sures will help the caregiver to change the situation, meaning than one month and also caring for PLWHA patient with attached to the situation, emotional reaction to the situation, some functional abilities as a family member. The age of or to change all three thereby reducing the perceived burden caregiver’s cuts across all age brackets, which include chil- (Thoits, 1986). Thoits added that social support buffers the dren under the age of 16 (Becker, 2007; Robson, Ansell, detrimental effects of caregiving stress. Huber, Gould, & Van Blerk, 2006), especially in sub-Saha- Female caregivers of PLWHA who combine caregiving ran with high prevalence of HIV/AIDS. There were 299 with their reproductive and productive activities, need sup- potential caregivers, who met the inclusion criteria of being port for continual adaptation to task changes and to reduce primary caregivers, but only 260 completely filled their the burden of care on them and enhance quality care to the questionnaires and 11 caregivers did not know the diagnosis care recipient. The conceptualization of support as coping or ailment of their care receivers. Twelve (12) refused to par- strategy or the active involvement of significant others in the ticipate while 16 did not complete their questionnaires. caregivers’ ability to manage stress is the principal theme Being a primary caregiver involved participants who pro- that is exemplified in this study. vided unpaid physical support such as helping in activities of In this regard, the level of burden experienced by all care- daily living, shopping, food preparation, helping in adminis- givers of PLWHA was examined to (a) compare the degree tering medication, overseeing medical appointment, finan- of perceived burden of caregiving work experienced by cial, and emotional support to PLWHA. female and male caregivers, (b) assess the duration of care by Confidentiality was ensured through deleting any contact both male and female caregivers, (c) assess the availability information, retrieving and coding the questionnaires imme- of support to caregivers, and (c) the willingness of caregivers diately they were completed. The study was submitted to the to continue caregiving in the future. UCTH Ethics and Research Committee, who gave the approval for conducting the study. Consent was also obtained Materials and Method from the Managing Director of Positive Development Foundation who helped to identify PLWHA caregivers. Location of the Study Informed consent was also obtained from study participants The study was carried out in Calabar Municipality, Cross following full description of the aims and objectives of study. River State of Nigeria from June to December 2009. In Participants were appreciated for their time. Calabar, there exist the University of Calabar Teaching Hospital (UCTH; a tertiary institution) which is a referral Instrument and Measures center to primary and secondary health care facilities in the Data was collected using structured questionnaires adminis- region. It also provides inpatient and outpatient services as tered by the researchers themselves and through the help of well as collaborates with nongovernmental organizations trained field assistants. Some questionnaires were delivered (NGOs) in the treatment of PLWHA from rural/urban areas to the respondents by face-to-face contact, while some were and neighboring country. The hospital has been selected by deposited with them to fill and return within one week. All the Federal Government of Nigeria as one of the centers for 4 SAGE Open the questionnaires were translated into Efik (the native lan- of inferential statistics (chi-square test), the level of signifi- guage of the people) and back-translated into English by cance was also determined at the p value of .05. The ZBI experts to ensure that there was no loss of meaning. The Efik scale scores ranged from 0 to 88; 0 to 20 represented little or (local dialect) version was administered to caregivers with no burden; 21 to 40, mild to moderate burden; 41 to 60, mod- little or no education. The structured questionnaires con- erate to severe burden; and 61 to 88, severe burden (Zarit, sisted of 41 items, 7 demographic variables, 22 from Zarit 2004). The support instrument was summed up into two, Burden Interview (ZBI) scale and 12 measuring social sup- availability of support for “lot of support and some support,” port. Measurements of the reliability of the instruments were lack of support for “very little support and no support.” achieved using test–retest method. The instruments were administered to 10 HIV caregivers in Calabar South. Two Results weeks later, the same instruments were administered on the same subjects. Their responses during the two occasions Sociodemographic Characteristics were correlated using Pearson product–moment correlation Table 1 shows the sociodemographic variables of 260 care- to obtain a reliability coefficient ranging from 0.85 to 0.96. givers who participated in the study. The majority of the respondents were females 199 (76.5%) while 61 (23.5%) Demographics respondents were males who voluntarily took up the caregiv- ing roles. Of the 260 respondents, 22 (8.5%) females and 3 The demographic variables consisted of seven items includ- (1.2%) males aged between 10 and 20 years, 31 (11.9%) ing information on age, marital status, occupation, highest females and 8 (3.1%) males aged between 21 and 30 years. educational qualification, household income level, number The majority 63 (24.2%) females and 22 (8.5%) males aged of people in the household, and duration of care. Duration of between 31 and 40 years, 46 (17.7%) females and 15 (5.8%) care was categorized into two levels to determine the extent males aged between 41 and 50 years while 37 (14.2%) of involvement with caregiving. Duration of care was pre- females and 13 (5.0%) males aged between 51 years and defined for the caregivers. above. The data also showed that majority of respondents were single females (93/35.8%), with tertiary education Caregivers Burden (77/29.6%) and were employed (89/34.2%). This study shows that 49 (18.8%) females left school to care for PLWHA Burden of care was assessed with the ZBI scale. 22 items (Table 1). validated ZBI scale with reliability coefficient ranging from 0.88 to 0.92. This scale is made up of 22 items which mea- sures caregivers’ perceptions as caregiving demands, it Duration of Care Among Caregiver reflects the degree of physical, emotional and social impact The study revealed that majority 162 (62.3%) respondents of caregiving on caregivers while providing care for PLWHA (145females and 17males) spent between 9 and 12 hr/day (Zarit, 2004). The respondents indicated the discomfort they providing care to PLWHA. 52 (20.0%) respondents ((16 experienced of particular items on a 5-point Likert-type scale females and 36males) provided 3 to 8 hr of care, while 46 ranging from 0 to 4. The total score ranged from 0 to 88 and (17.7%) respondents provided 13 to 24 hr/day care to a high score correlated with higher level of burden. PLWHA (Table 1). Majority 109 (41.9%) of the respondents (90 females and Support 19males) had provided care between 1 and 2 years, 101 (38.9%) respondents (67 females and 34 males) had been A pilot tested structured questionnaire with a reliability coef- caregivers for less than 1 year, 38 (14.6%) respondents (32 ficient of .85 to .96 was used to measure social support. The females and six males) provided care for 2 to 3 years, while questionnaire consisted of 12 items which assessed the avail- 12 (4.6%) respondents (10 females and two males) provided ability of support information, financial help, emotional sup- care for more than 3 years. port available to caregivers and help with caregiving. Respondents indicated the extent of support they received from each item on a 4-point Likert-type scale, ranging from Household Income and the Number of People in lots of support, some support, very little support and no the Household support. The majority 130 (50%) of the respondents lived below a household income of US$6.00/day while only 15 (5.8%) Data Analysis lived with an income of US$14.00 and above. Also, the Data collected were analyzed using the Statistical Package majority 153 (58.9%) lived in a household of about three to for the Social Sciences (SPSS 16.0) software to generate the six members and only about 19 (7.3%) lived in a household frequency and percentages of the values. By the application of one to three persons (Table 2). Asuquo et al. 5 Table 1. The Sociodemographic Features of Caregiver Table 2. Household Income and the Number of People in the Respondents. Household. Variables Female, n (%) Male, n (%) Household income level US$/Day Age (years) Variables Frequency Percentage (%) 10-20 22 (8.5) 3 (1.2) Less than US$6.00 130 50.0 21-30 31 (11.9) 8 (3.1) US$7.00-US$8.00 59 22.7 31-40 63 (24.2) 22 (8.5) US$9.00-US$10.00 25 9.6 41-50 46 (17.7) 15 (5.8) US$11.00-US$12.00 18 6.9 51 and above 37 (14.2) 13 (5.0) US$13.00-US$14.00 13 5.0 Total 199 (76.5) 61 (23.5) US$14.00 and above 15 5.8 Marital status Number of people in the household Married 79 (30.4) 34 (13.1) 1-3 19 7.3 Single 93 (35.8) 15 (5.8) 3-6 153 58.9 Divorced 10 (3.8) 4 (1.5) 7 and above 88 33.8 Widowed 8 (3.1) 5 (1.9) Living together/Domestic Partner 9 (3.5) 3 (1.2) Total 199 (76.5) 61 (23.5) Table 3. The Distribution of Burden on Zarit Burden Interview Educational qualification (ZBI) Scale. Primary (elementary) 22 (8.5) 4 (1.5) Secondary (high) 31 (11.9) 16 (6.2) Gender Tertiary 77 (29.6) 28 (10.8) Level of burden Female (%) Male (%) N = 260 (%) Range Never been to school 20 (7.7) 2 (0.8) Left school for caregiving 49 (18.8) 11 (4.2) No burden 39 (15.0) 10 (3.9) 49 (18.9) 0-20 Total 199 (76.5) 61 (23.5) Mild to moderate 46 (17.7) 21 (8.1) 67 (25.8) 21-40 Occupation burden Employed 89 (34.2) 11 (4.2) Moderate to 69 (26.6) 24 (9.2) 93 (35.8) 41-60 Unemployed 31 (11.9) 29 (11.2) severe Business/farming 79 (30.4) 21 (8.1) Severe burden 45 (17.3) 6 (2.3) 51 (19.6) 61-88 Total 199 (76.5) 61 (23.5) Total 199 (76.5) 61 (23.5) 260 (100.0) 0-88 Duration of care (hr/day) 3-8 16 (6.2) 36 (13.8) 9-12 145 (55.8) 17 (6.5) Table 4. The Relationship Between Gender and Caregivers 13-24 38 (14.6) 8 (3.1) Burden. Total 199 (76.5) 61 (23.5) Class interval Class Years Level of burden (range) mark (x) F F Less than 1 year 67 (25.8) 34 (13.1) 1(female) 2(male) Between 1 and 2 years 90 (34.6) 19 (7.3) No burden 0-20 10.0 39 10 Between 2 and 3 years 32 (12.3) 6 (2.3) Mild to moderate 21-40 30.5 46 21 Above 3 years 10 (3.8) 2 (0.8) burden Total 199 (76.5) 61 (23.5) Moderate to severe 41-60 50.5 69 24 Severe burden 61-88 74.5 45 6 Total 0-88 199 61 Gender Difference in the Level of Note. T-test Cal. = 1.27. T-test tab. = 1.62, N = 260, p < .05. Burden Generally, the results revealed a level of burden ranging 1.27 and the tabulated value of 1.62 at p < .05, indicating a between 14 and 71 on ZBI Scale (Table 3); 49 (18.8%) significant relationship between the levels of burden experi- respondents (females 39, males10) experienced no burden enced by gender (Table 4). while providing care, 67 (25.8%) respondents (females 46 males 21) experienced mild to moderate level of burden, 93 Availability of Support to Caregivers (35.8%) respondents (females 69, males 24) experienced moderate to severe level of burden while 51 (19.6%) respon- The availability of support was categorized into four sections, dents (females 45, males six) experienced severe level of namely, providing information on practical and coping skills, burden in providing care to PLWHA. financial assistance, help with caregiving and emotional sup- The relationship between gender and caregivers burden port (Figure 1). Among the 260 respondents, 152 (58.5%) assessed with students t test gave a calculated t test value of agreed to have received some form of support while 108 6 SAGE Open Informaon on Financial Emoonal Assistance with Noformof praccal and assistance support caregiving support coping skills Figure 1. Assessing the extent of support to caregivers of PLWHA in Nigeria. Note. PLWHA = people living with HIV/AIDS. < 0.05, which showed a significant relationship between availability of support and caregivers burden (Table 5). Out of 52 respondents who provided care for 3 to 8 hr/day, the majority 28 experienced no burden, 10 respondents expe- Willing to connue with caregiving rienced mild to moderate burden, eight respondents experi- Not willing to connue 213 enced moderate to severe burden while six respondents with caregiving experienced severe burden. Out of 162 respondents who pro- vided care for 9 to 12 hr/day, 16 experienced no burden, 50 respondents experienced mild to moderate burden, the majority 73 respondents experienced moderate to severe bur- den while 23 respondents experienced severe burden. Among Figure 2. The caregiver’s willingness to continue in caregiving 46 respondents who provided care for 13 to 24 hr/day, five role. experienced no burden, seven respondents experienced mild to moderate burden, 12 respondents experienced moderate to (41.5%) received no form of support at all. The form of support severe burden while the majority 22 respondents experienced received included 6 (0.2%) information on practical and coping severe burden. A chi-square value of 80.0 was obtained at p skills, 36 (13.9%) financial assistance, 72 (27.7%) help with < 0.05, which showed a significant relationship between caregiving, and 38 (14.6%) emotional support. Most caregivers duration of care and caregivers burden (Table 6). perceived their role to be extremely stressful with adverse con- sequences on their health, which some form of support from Discussion individuals or government could have helped to ameliorate. There was no difference in the types of support by gender. Caring for those with terminal diseases such as HIV/AIDS is intrinsically a demanding exercise that requires empathy, an attribute which is commonly found among the women Willingness to Continue With Caregiving (Okoye, 2012). This study showed clearly that the burden of Among the 260 caregivers, the majority 213 (81.9%) respon- care on AIDS affected households, rest more on women and dents (171 females and 42 males) expressed their desire to girls than men. These are evident in the number of females continue with caregiving, while 47 (18.1%) caregivers (28 who took up caregiving roles in this study compared with females and 14 males) did not feel like continuing with care- males. This is similar to UNAIDS (2008) report that caring giving role (Figure 2). for the sick in affected households is relegated to females Out of 108 respondents who received no support, 12 thereby increasing the burden of care on females than males. experienced no burden, 23 respondents experienced mild to This finding also corroborates male dominance in the moderate burden, the majority 37 respondents experienced Nigerian society that culturally assigns caregiving role to moderate to severe burden while 36 respondents experienced women. But in the absence of eligible females, the males are severe burden. A chi-square value of 25.1 was obtained at p often engaged in the caregiving role. This traditional gender Frequencies Asuquo et al. 7 Table 5. The Relationship Between Availability of Support and Caregivers’ Burden. Mild to moderate Moderate to severe Severe Availability of support No burden burden burden Burden Total Received any form of support 37 (28.7) 44 (39.2) 56 (54.4) 15 (29.8) 152 Received no support 12 (20.4) 23 (27.8) 37 (38.6) 36 (21.2) 108 Total 49 67 93 51 260 2 2 2 2 Note. Figures in parentheses are expected frequencies. χ Cal. = 25.1. χ Tab. = 7.81, df = 3, N = 260, p < 0.05 where “χ Cal.” and “χ Tab.” represents Chi square calculated and Chi square tabulated respectively. Table 6. The Relationship Between Duration of Care and Caregivers’ Burden. Duration, Mild to moderate Moderate to hours/day No burden burden severe burden Severe burden Total 3-8 28 (9.8) 10 (13.4) 8 (18.5) 6 (10.2) 52 9-12 16 (30.5) 50 (41.8) 73 (58.0) 23 (31.8) 162 13-24 5 (8.7) 7 (11.9) 12 (16.5) 22 (9.0) 46 Total 49 67 93 51 260 Note. Figures in parentheses are expected frequencies. χ Cal. = 80.0, χTab. = 10.65, df = 6, N = 260, p <0.05. norm allows women and girls to provide care but creates the less likely to obtain formal help. Without appropriate inter- social barrier against men and boys becoming caregivers, vention, increased level of burden produces negative conse- exacerbating the burden for women and girls. This corrobo- quences which manifest as symptoms of anxiety and rates other reports that women are the primary caregivers in depression and induced changes that could lead to heart dis- most households and societies (FYI, 2013; NAC & AARP, ease, hypertension, psychological worries, loneliness, 2009; UNAIDS, 2008). Takamura and Williams (1998) increase rate of physiological illness and suppressed immune observed that in most society, these caregivers often go responses (Abasiubong et al., 2011; Asuquo, Etowa, & unnoticed except by those who depend on their care. VSO Adejumo, 2013; Bevans & Sternberg, 2012; Montgomery (2006) asserted that the caregiver has a right to be valued, et al., 2007; NAC & AARP, 2009; Robison, Fortinsky, supported and compensated appropriately to ensure that the Kleppinger, Shugrue, & Porter, 2009). According to patient receive a high quality care. Primary caregiver some- Takamura and Williams (1998), it is pertinent to perceive times pays a high price and lose opportunities, because pro- caregivers as potential patients and accord them the neces- viding care may entail sacrificing school or work to provide sary support as little can be achieved when their well-being care or taking up caregiving role in addition to existing is jeopardized. reproductive and household economic roles. Female caregivers spend more hours and years in provid- Apart from lost opportunities in caregiving, majority of ing care (Table 2) than male counterparts as observed in this caregivers experience high burden level as manifested in this study. This finding is associated with traditional gender study (Table 3). This indicates the degree to which caregiv- norms which appropriates caregiving to women and for the ing endeavor impacts on emotional, physical health, finan- men to provide economically for their families, therefore cial and social life of the caregiver. The physical labor of spending less time in caregiving. This corroborates previous attaining to all the activities of daily living, coupled with lack report (Gomo, 2008; VSO, 2006) that men’s low participa- of resources to spend on their own medication, produces det- tion in caregiving are sociocultural since they are expected to rimental effects on the carer’s own health (Saengtienchai & provide financial spport for their families. Reinhard et al. Knodel, 2001). The physical and psychosocial impacts of (2008) affirms that caregiving is a day-to-day obligation and caregiving on women’s well-being are rarely acknowledged, most family caregivers provide 8 or more hours of care per as most women often ignore their personal health concerns to week, and one in five caregivers may provide more than 40 consummate the challenges of caregiving (Asuquo, Etowa, hr of care per week. This finding is comparable with Family & Adejumo, 2013; UNAIDS, 2008; VSO, 2006; WHO, Caregiver Alliance (2003) who affirmed that even when men 2003). provide assistance, female caregivers spend as much as 50% There was a significant relationship between the level of more time providing care than male caregivers. This study burden experienced and gender in this study. This is similar further revealed that providing care ranges from short period to Allegra (2012) report which asserted that women experi- of time to full-time commitment and a significant relation- enced more burden than men due to their tendency to per- ship (p <0.05) exist between duration of care and caregivers form more personal care tasks as primary caregivers and are burden (Table 6). This also agrees to other reports asserting 8 SAGE Open that whether it is for a short period of time or over extended also conformed to Davis (2012) empirical study on role the- years, caregiving is a normative life challenge which exacer- ory, which affirmed that a person’s behavior is indirectly or bates the burden of caregivers without adequate coping strat- directly influenced by the social environment. But willingness egies (Cavanaugh, 1998; Chambers, Ryan, & Millar, 2001). to continue with caregiving role depend on caregivers inter- There was limited support to caregivers in terms of informa- nalize coping behavior (McKee et al., 1999) and the patient’s tion on practical and coping skills, financial assistance, help symptom may play a critical role in accounting for levels of with caregiving and emotional support to caregivers (Figure 1). caregiver’s depressiveness or willingness to continue in care- Caregivers took up the caregiving role without educational giving role (Given et al., 2005). Majority of those that were preparation and in most cases unfamiliar with the type of care not willing to continue with caregiving role fell among family they must provide or the extent of care needed. The lack of sup- caregivers that did not receive any form of support, spending port may be attributed to the low value placed on caregiving, more than 9 hr/day in providing care. This is similar to Asuquo, especially when caregiving is dominated by females. Adejumo, et al., (2013) and Habid and Rahman (2010) who UNAIDS (2008) and VSO (2006) asserted that gender asserted that with increased burden and limited support, care- bias may play a significant role in the none recognition and givers experience serious burnout and are physically and psy- low value assigned to the “care economy” which is part of chologically disabled. UNAIDS (2008) and Zarit (2002) the unremunerated work performed by women. The need to recommended the provision of social support and counseling acknowledge and celebrate family caregivers as one of the before role assumption to alleviate burden of caregiving and notable strengths of our nation’s families and communities enhance willingness to continue with role. cannot be overemphasized as no one can afford to pay the costs of replacing all informal caregivers with paid personnel Conclusion/Recommendation (Takamura & Williams, 1998). Chambers et al. (2001) emphasized that it is prejudice to assume that carers have Over the past decade, improved antiretroviral regimens, con- necessary knowledge and skills to care for an ill relative cerns about the cost of inpatient care and consumer’s prefer- without some form of support or training. Similarly, Rose ences have shifted HIV/AIDS care from hospitals to home (1997) affirmed that providing information on practical and and community settings. This shift has placed heavy burden coping skills plays important role in caregiver’s effective on the family and friends of HIV positive individuals, and management of burden and any associated stress the care- most of them had very little knowledge of HIV management giver may experience. The need to support caregivers is con- or available resources. Strategies for counteracting caregiv- sistent with most literatures on support needs. UNAIDS ing stressors must be addressed by recognizing and support- (2008) and Saengtienchai and Knodel (2001) also agreed that ing family caregivers as well as seeking measures to enhance without proper training on practical and coping skills, ade- involvement of male in family caregiving. This could be quate information and supplies, there is the risk of exposure achieved through campaigns to create awareness on associ- to communicable opportunistic infections. Fear of HIV con- ated burden of care on women and the encouragement of tagion can cause considerable anxiety on the part of caregiv- equal distribution of household and caregiving responsibili- ers, especially if they are not well informed about the actual ties. The strengthening of health care systems to provide risks (Asuquo, Adejumo, et al., 2013). information on practical and coping skills to caregivers of This study also revealed a significant relationship (p < PLWHA, will reduce the burdens that caregiving poses on 0.05) between support and caregiver’s burden. Therefore, them. The government should provide as a matter of urgency support in form of information and training on caregiving hospices where PLWHA can meet with medical profession- should be given to caregivers before the commencement of als for advice. Counseling sessions should be organized reg- caregiving role. Therefore, with the global commitment to ularly to present a forum where caregivers could air their attain universal access to prevention, care, support and treat- problems and challenges encountered during caregiving ser- ment for those PLWHA, the need to reflect on what these vices. The need also arises for the recognition of primary goals might mean in terms of burden on women and girls caregivers as potential patients, and the formulation of policy should be considered (VSO, 2006). that recognizes and support female caregivers of PLWHA in In spite of the high level of burden perceived by caregivers, Africa. This will ensure caregiver’s right to high quality care many still showed the willingness to continue in caregiving through the development of a standardized assessment for- role. This may be attributed to strict adherence to cultural mat to assess caregivers during each hospital visit. expectation, fraternal love for the sick and sheer need. Observations akin to the role theory of Berg-Weger, Limitation McGartland Rubio, and Tebb (2000) suggest that caregivers strive to fulfill a normative expectation to avoid criticism by This study was limited to caregivers of PLWHA in Calabar others. Okoye (2012) affirmed that this normative role in municipality. It was also not possible to identify households Nigeria is backed by persistent influence of traditional norms, that were predominantly male or female controlled. The instru- values and behavior, practiced as deified and not routines. This ment used did not measure the HIV status of the caregivers. Asuquo et al. 9 Acknowledgments Fromholt (Eds.), Clinical geropsychology (pp. 131-136). Washington, DC: American Psychological Association. The authors are grateful for information and support received from Chambers, M., Ryan, A., & Millar, S. L. (2001). Exploring the the Managing Director of Positive Development Foundation, an emotional support needs and coping strategies of family carers. NGO in Calabar, Nigeria during the course of this study. Journal of Psychiatric and Mental Health Nursing, 8, 99-106. Davis, S. (2012, May 6-12). Why nurses are the unsung heroes of Declaration of Conflicting Interests global health. In International Nurses Week. Alabama State The author(s) declared no potential conflicts of interest with respect Nurses Association, Alabama, USA. to the research, authorship, and/or publication of this article. Family Caregiver Alliance. (2003). Women and caregiving: Facts and figures. Retrieved from http://www.caregiver.org/care- giver/jsp/content_node.jsp?nodeid-892 Funding Federal Ministry of Health. (2011). WHO, Global Health The author(s) disclosed receipt of the following financial support Observatory (GHO). Abuja, Nigeria: Government House Press. for the research, authorship, and/or publication of this article: One Forever Young Information. (2013). Survey confirms woman assume of us (EFA) received study fellowship grant from the University of major burden as caregivers. Retrieved from http://forevery- Calabar, Nigeria, to whom we are grateful. oungnews.com/posts/2086-survey-confirms-woman-assume- major-burden-as-caregivers. 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Estimates devel- Parents providing care to adult sons and daughters with HIV/ oped by WHO, UNICEF, UNFPA and the World Bank. Retrieved AIDS in Thailand. United Nations Programme on HIV/AIDS from http://reliefweb.int/report/world/trends-maternal-mortality- (UNAIDS) Publishers. 1990-2010-who-unicef-unfpa-and-world-bank-estimates Singh, D., Chaudoir, S., Escobar, M., & Kalichman, S. (2011). Zarit, H. (2002). Family care and burden at the end of life. Canadian Stigma, burden, social support, and willingness to care among Medical Association Journal, 170, 1811-1812. caregivers of PLWHA in home-based care in South Africa. AIDS Care, 23, 839-845 Author Biographies: Smith, M., & Segal, J. (2013). Caregiving support and help. Retrieved from http://www.helpguide.org/elder/caring_for_ Ekaete Francis Asuquo is a lecturer in Department of Nursing caregivers.htm#family Sciences, University of Calabar, Nigeria. Her area of specialisation Stephens, M. A., Townsend, A. L., Martire, L. M., & Druley, J. A. is Medical Surgical Nursing with special interest in building nurs- (2001). Balancing parent care with other roles: Interrole con- ing research capacity and improvement in quality nursing care. flict of adult daughter caregivers. The Journals of Gerontology. Josephine B. Etowa is a professor & Loyer DaSilva research chair in Series B, Psychological Sciences and Social Sciences, 56, 24-34. Public Health Nursing, Faculty of Health Sciences, University of Takamura, T., & Williams, B. (1998). Informal caregiving: Ottawa with special interest in international studies and building of Compassion in action. An introductory message from nursing capacity in low-and middle income countries. Department of Health and Human Services, USA. Retrieved from http://aspe.hhs.gov/daltcp/reports/carebro2.pdf Margaret I. Akpan is a clinican instructor at the Department of Thoits, P. (1986). Social support as coping assistance. 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Assessing Women Caregiving Role to People Living With HIV/AIDS in Nigeria, West Africa:

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Abstract

HIV/AIDS scourge remains high in most countries of sub-Saharan Africa such as Nigeria, which is home to about 3.3 million HIV positive individuals and represents the second largest burden of HIV/AIDS care, treatment and demand worldwide after South Africa. Anti-retroviral treatment options though a welcome development, has increased the number of people living with this chronic illness, and most of them depend on family members for physical and emotional support. Traditional gender norms in Nigeria ensure that legitimately, women and girls are the first options for caregiving roles. This mandatory role has in turn imposed psychosocial disruption in the lives of female family members in Calabar, Nigeria. This descriptive study utilized convenient sampling technique, Zarit Burden Interview scale and semistructured questionnaires for data collection (260 respondents), and data analyses were achieved using SPSS16.0. The study showed that a significant (p < .05) proportion of women (91%) were involved in providing care, including children from 10 years and above. Caregivers had minimal social support which increased the burden they experienced. The need for policy that recognizes and supports female caregivers (“silent cornerstone”) to reduce burden and ensure high quality care of people living with HIV/AIDS (PLWHA) in Nigeria is advocated. Keywords female caregivers, PLWHA, burden of caregiving, Nigeria caregivers or the effect the role is having on them. Habid and Introduction Rahman (2010) reported that family caregivers are physi- Providing care to a sick family member is a tradition embed- cally, psychologically and socially disabled due to caring for ded in African culture. It is regarded as an age-old act of PLWHA. kindness, love and loyalty, which bind family members Health systems in most developing countries do not have together (Asuquo, Adejumo, Etowa, & Adejumo, 2013; the capacity to provide long-term care and support to Smith & Segal, 2013). With sub-Saharan Africa accounting PLWHA, and patients are discharged without contact with for 69% of people living with HIV, coupled with advance- family caregivers (Tshililo & Davhana-Maselesele, 2009). ment in medical treatment and improvement in life expec- Patient discharge is based on the implicit assumption that, tancy, many more persons will assume caregiving role of family members are always available to provide care at home people living with HIV/AIDS (PLWHA; Singh, Chaudoir, to the dependent ill, without adequate educational prepara- Escobar, & Kalichman, 2011; UNAIDS, 2012). Studies have tion of family members on their expected roles (VSO, 2006). shown that most HIV infected individuals return to their Reinhard, Given, Petlick, and Bemis (2008) observed that a homes for care and psychological support (Bachmanna & serious health care gap exists as health professionals’ fail to Booysenb, 2006; Global Coalition on Women and AIDS, recognize caregivers as “hidden” patients even with numer- 2004; Grunfeld et al., 2004; Kipp, Nkosi, Laing, & Jhangri, ous research evidence on adverse physical and mental health 2006; VSO, 2006; WHO, 2005). According to Takamura and Williams (1998) in our society, family caregivers often go unnoticed except by those who depend on their care. University of Calabar, Nigeria Similarly, Abasiubong, Bassey, Ogunsemi, and Udobang University of Ottawa, Ontario, Canada (2011) asserted that while resolute efforts are made to Corresponding Author: improve the quality of life of PLWHA in many countries, Ekaete Francis Asuquo, University of Calabar, Calabar 54001, Nigeria. little or no acknowledgment is given to the supportive role of Email: ekaetefasuquo@yahoo.com Creative Commons CC BY: This article is distributed under the terms of the Creative Commons Attribution 3.0 License (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). 2 SAGE Open consequences from physically and emotionally demanding the impact of HIV and burden of care is greater in resource- work of caregiving. The physical tasks performed by the poor settings, particularly for rural and grass-root caregivers. caregivers transcend minor to complex tasks, which is simi- UNAIDS (2008) reported that women in Africa make up lar to those carried out by paid health or social service pro- 70% of the world’s poor and two thirds of the world’s illiter- viders. These impart a great degree of burden on the ate and accounts for two thirds of all caregivers for people caregivers especially, as they combine the caregiving ser- living with HIV in Africa. The unique contribution in ame- vices with their official roles in the society. Caregiving has liorating the impact of HIV is not only peculiar to African increased the burden of care on many households particu- women alone. Global Coalition on Women and AIDS (2004) larly the females, by worsening their economic status and asserted that about 90% of the care due to HIV infection is subjecting them to imminent poverty. The need for heal provided at home by women and girls in addition to other thcare system and government to promulgate policies that tasks they already perform. Arno (2002) and Family Care will support female caregivers and also enhance quality of Alliance (2003) have also reported that women caregiving care to PLWHA in Nigeria becomes imperative. This study provides the backbone of support to the complex system of therefore highlights the extent of burden experienced by long-term care and the value of the informal care that women female caregivers compared to male counterparts and the provide ranges from US$148 billion to US$188 billion annu- support available to all caregivers of PLWHA in Calabar ally. Although annual monetary value of unpaid caregiving Municipality, Nigeria. in Nigeria has not yet been quantified, the global estimated value of unremunerated work by women is 11 trillion dollars (UNAIDS, 2008). Women and Burden of Care Forever Young Information (FYI, 2013) affirmed that Women constitute about 50% of the people living with HIV females assume caregiving role at a young age and take an today worldwide (WHO, 2013). In 2007, the prevalence of active interest in their love one’s health and maintain this HIV infection had been on men than women (UNAIDS, role as they grow older. Between the ages of 30 and 55 years, 2008), but with the turn of events women now bear the bur- women become primary caregivers in Ontario households den of this devastating disease more than men (WHO/ and assume the responsibility of health care decisions for UNICEF/ UNFPA/World Bank, 2010). In sub-Saharan their children, siblings, spouses and parents (FYI, 2013). Africa, women constitute 60% of people living with HIV and Canadian Caregiver Coalition (2013) noted that about 4 to 5 the proportion of women living with HIV has been increas- million people serve as caregivers with the majority being ing in the last 10 years (WHO, 2013). These figures vindicate women and they provide more than 80% of the care needed the words of Lewis (2005) that HIV/AIDS in Africa has a by HIV individuals. These “long-term” conditions and con- “female face.” Apart from biological vulnerability of women stitute more than US$5 billion of unpaid labor annually to to HIV, the African traditional gender norms stipulate care- the health care system. Hence, family caregivers (women) giving as female normative role where women and girls in are the invisible backbone of the health and long-term care the various communities become caregivers, while still need- system which signify need for support to reduce negative ing care themselves, and possibly being HIV positive also consequences on their health. (UNAIDS, 2008; UNIFEM, 2005; VSO, 2006). These “tra- ditional gender norms” also exclude men and boys becoming Caregiving and Support caregivers, exacerbating the burden for females. Many women and girls have left work and school to provide care, Caregiving in the Nigerian society though associated with and most have taken on this role in addition to their existing some rewarding experiences, is laden with chronic life reproductive and primary roles as housewives/housekeepers strains from excessive job responsibilities. Caregivers (VSO, 2006). attempt to balance caregiving with their other activities such Encouraging care provision in homes is regarded as a as work, family and leisure, to meet the demands of daily cost-effective strategy for governments and the private sec- living. Inability to strike a balance results in experiences of tor, but little consideration is given to the physical, emotional negative reactions such as increased sense of burden and economic costs to households and the caregivers who (Argimon, Limon, Vila, & Cabezas, 2004; Pavalko & take on the additional burdens, many of whom are often poor Woodbury, 2000; Stephens, Townsend, Martire, & Druley, and living below US$ 1.00 to US$1.25 per day (Asuquo, 2001). According to Reinhard et al. (2008) both negative and Etowa, & Adejumo, 2013; United Nations, 2012; United positive consequences of providing care may exist simulta- Nations Development Progress, 2013). Mbirimtengerenji neously. The negatives consequences emanate from exces- (2007) asserted that not only does correlation exist between sive life stressors which require daily readjustments, which if poverty and HIV infection but HIV remained the exact out- not may result in interference with performance of role- come of poverty in the sub-Saharan region with sexual trade, related activities (Thoits, 1986). Excessive caregiving stress migration, polygamy, and teenage marriages as its predic- could result in physical, social and emotional consequences tors. According to VSO-RAISA (2007) and UNAIDS (2008), which manifest as low perception of health status, perceived Asuquo et al. 3 high stress levels, deep unhappiness, social anxiety, depres- the management of PLWHA. The study was informed by the sion and induced changes that could degenerate to heart dis- high HIV prevalence of 10.4% at the study site (Asuquo, ease, hypertension, increase rate of physiological illness and Etowa, & Adejumo, 2013; Federal Ministry of Health suppressed immune responses (Abasiubong et al., 2011; [FMOH], 2011). ANON, 2009; Kipp et al., 2006; Kurtz, Kurtz, Given, & Given, 2005; Montgomery, Rowe, & Kosloski, 2007; Study Design and Participants National Alliance for Caregiving (NAC) & AARP, 2009; Zarit, 2004). The study was a cross-sectional descriptive research which The need to support caregivers’ well-being and that of utilized convenient sampling technique to generate data from care recipient becomes imperative especially with the advent 260 participants who were primary caregivers to PLWHA. of antiretroviral therapy. Supporting caregivers’ entails pro- The study participants were identified through HIV clinic of viding coping assistance, or involving significant others in the UCTH where some of the researchers worked as employ- ees (Clinical Instructors) and the visitation list of a voluntary an individual’s stress-management efforts (Hornillos & caregiver of PLWHA, an NGO (Positive Development Crespo, 2011; Thoits, 1986). Turner and Street (1999) Foundation, Calabar, Nigeria). Information letter and invita- asserted that support could be through instrumental aid tion for willing participants were posted at UCTH and the (actions or materials provided to ensure attainment of role NGO office where willing participants contacted the responsibilities), socioemotional aid (infer the assertions or researcher. The participants who met the inclusion criteria demonstrations of love, caring, esteem, sympathy, and group and were willing to participate in the study were contacted. belonging), and informational aid (communications of infor- As described previously (Asuquo, Etowa, & Adejumo, mation that makes life challenges easier). These three mea- 2013), the inclusion criteria were: being a caregiver for more sures will help the caregiver to change the situation, meaning than one month and also caring for PLWHA patient with attached to the situation, emotional reaction to the situation, some functional abilities as a family member. The age of or to change all three thereby reducing the perceived burden caregiver’s cuts across all age brackets, which include chil- (Thoits, 1986). Thoits added that social support buffers the dren under the age of 16 (Becker, 2007; Robson, Ansell, detrimental effects of caregiving stress. Huber, Gould, & Van Blerk, 2006), especially in sub-Saha- Female caregivers of PLWHA who combine caregiving ran with high prevalence of HIV/AIDS. There were 299 with their reproductive and productive activities, need sup- potential caregivers, who met the inclusion criteria of being port for continual adaptation to task changes and to reduce primary caregivers, but only 260 completely filled their the burden of care on them and enhance quality care to the questionnaires and 11 caregivers did not know the diagnosis care recipient. The conceptualization of support as coping or ailment of their care receivers. Twelve (12) refused to par- strategy or the active involvement of significant others in the ticipate while 16 did not complete their questionnaires. caregivers’ ability to manage stress is the principal theme Being a primary caregiver involved participants who pro- that is exemplified in this study. vided unpaid physical support such as helping in activities of In this regard, the level of burden experienced by all care- daily living, shopping, food preparation, helping in adminis- givers of PLWHA was examined to (a) compare the degree tering medication, overseeing medical appointment, finan- of perceived burden of caregiving work experienced by cial, and emotional support to PLWHA. female and male caregivers, (b) assess the duration of care by Confidentiality was ensured through deleting any contact both male and female caregivers, (c) assess the availability information, retrieving and coding the questionnaires imme- of support to caregivers, and (c) the willingness of caregivers diately they were completed. The study was submitted to the to continue caregiving in the future. UCTH Ethics and Research Committee, who gave the approval for conducting the study. Consent was also obtained Materials and Method from the Managing Director of Positive Development Foundation who helped to identify PLWHA caregivers. Location of the Study Informed consent was also obtained from study participants The study was carried out in Calabar Municipality, Cross following full description of the aims and objectives of study. River State of Nigeria from June to December 2009. In Participants were appreciated for their time. Calabar, there exist the University of Calabar Teaching Hospital (UCTH; a tertiary institution) which is a referral Instrument and Measures center to primary and secondary health care facilities in the Data was collected using structured questionnaires adminis- region. It also provides inpatient and outpatient services as tered by the researchers themselves and through the help of well as collaborates with nongovernmental organizations trained field assistants. Some questionnaires were delivered (NGOs) in the treatment of PLWHA from rural/urban areas to the respondents by face-to-face contact, while some were and neighboring country. The hospital has been selected by deposited with them to fill and return within one week. All the Federal Government of Nigeria as one of the centers for 4 SAGE Open the questionnaires were translated into Efik (the native lan- of inferential statistics (chi-square test), the level of signifi- guage of the people) and back-translated into English by cance was also determined at the p value of .05. The ZBI experts to ensure that there was no loss of meaning. The Efik scale scores ranged from 0 to 88; 0 to 20 represented little or (local dialect) version was administered to caregivers with no burden; 21 to 40, mild to moderate burden; 41 to 60, mod- little or no education. The structured questionnaires con- erate to severe burden; and 61 to 88, severe burden (Zarit, sisted of 41 items, 7 demographic variables, 22 from Zarit 2004). The support instrument was summed up into two, Burden Interview (ZBI) scale and 12 measuring social sup- availability of support for “lot of support and some support,” port. Measurements of the reliability of the instruments were lack of support for “very little support and no support.” achieved using test–retest method. The instruments were administered to 10 HIV caregivers in Calabar South. Two Results weeks later, the same instruments were administered on the same subjects. Their responses during the two occasions Sociodemographic Characteristics were correlated using Pearson product–moment correlation Table 1 shows the sociodemographic variables of 260 care- to obtain a reliability coefficient ranging from 0.85 to 0.96. givers who participated in the study. The majority of the respondents were females 199 (76.5%) while 61 (23.5%) Demographics respondents were males who voluntarily took up the caregiv- ing roles. Of the 260 respondents, 22 (8.5%) females and 3 The demographic variables consisted of seven items includ- (1.2%) males aged between 10 and 20 years, 31 (11.9%) ing information on age, marital status, occupation, highest females and 8 (3.1%) males aged between 21 and 30 years. educational qualification, household income level, number The majority 63 (24.2%) females and 22 (8.5%) males aged of people in the household, and duration of care. Duration of between 31 and 40 years, 46 (17.7%) females and 15 (5.8%) care was categorized into two levels to determine the extent males aged between 41 and 50 years while 37 (14.2%) of involvement with caregiving. Duration of care was pre- females and 13 (5.0%) males aged between 51 years and defined for the caregivers. above. The data also showed that majority of respondents were single females (93/35.8%), with tertiary education Caregivers Burden (77/29.6%) and were employed (89/34.2%). This study shows that 49 (18.8%) females left school to care for PLWHA Burden of care was assessed with the ZBI scale. 22 items (Table 1). validated ZBI scale with reliability coefficient ranging from 0.88 to 0.92. This scale is made up of 22 items which mea- sures caregivers’ perceptions as caregiving demands, it Duration of Care Among Caregiver reflects the degree of physical, emotional and social impact The study revealed that majority 162 (62.3%) respondents of caregiving on caregivers while providing care for PLWHA (145females and 17males) spent between 9 and 12 hr/day (Zarit, 2004). The respondents indicated the discomfort they providing care to PLWHA. 52 (20.0%) respondents ((16 experienced of particular items on a 5-point Likert-type scale females and 36males) provided 3 to 8 hr of care, while 46 ranging from 0 to 4. The total score ranged from 0 to 88 and (17.7%) respondents provided 13 to 24 hr/day care to a high score correlated with higher level of burden. PLWHA (Table 1). Majority 109 (41.9%) of the respondents (90 females and Support 19males) had provided care between 1 and 2 years, 101 (38.9%) respondents (67 females and 34 males) had been A pilot tested structured questionnaire with a reliability coef- caregivers for less than 1 year, 38 (14.6%) respondents (32 ficient of .85 to .96 was used to measure social support. The females and six males) provided care for 2 to 3 years, while questionnaire consisted of 12 items which assessed the avail- 12 (4.6%) respondents (10 females and two males) provided ability of support information, financial help, emotional sup- care for more than 3 years. port available to caregivers and help with caregiving. Respondents indicated the extent of support they received from each item on a 4-point Likert-type scale, ranging from Household Income and the Number of People in lots of support, some support, very little support and no the Household support. The majority 130 (50%) of the respondents lived below a household income of US$6.00/day while only 15 (5.8%) Data Analysis lived with an income of US$14.00 and above. Also, the Data collected were analyzed using the Statistical Package majority 153 (58.9%) lived in a household of about three to for the Social Sciences (SPSS 16.0) software to generate the six members and only about 19 (7.3%) lived in a household frequency and percentages of the values. By the application of one to three persons (Table 2). Asuquo et al. 5 Table 1. The Sociodemographic Features of Caregiver Table 2. Household Income and the Number of People in the Respondents. Household. Variables Female, n (%) Male, n (%) Household income level US$/Day Age (years) Variables Frequency Percentage (%) 10-20 22 (8.5) 3 (1.2) Less than US$6.00 130 50.0 21-30 31 (11.9) 8 (3.1) US$7.00-US$8.00 59 22.7 31-40 63 (24.2) 22 (8.5) US$9.00-US$10.00 25 9.6 41-50 46 (17.7) 15 (5.8) US$11.00-US$12.00 18 6.9 51 and above 37 (14.2) 13 (5.0) US$13.00-US$14.00 13 5.0 Total 199 (76.5) 61 (23.5) US$14.00 and above 15 5.8 Marital status Number of people in the household Married 79 (30.4) 34 (13.1) 1-3 19 7.3 Single 93 (35.8) 15 (5.8) 3-6 153 58.9 Divorced 10 (3.8) 4 (1.5) 7 and above 88 33.8 Widowed 8 (3.1) 5 (1.9) Living together/Domestic Partner 9 (3.5) 3 (1.2) Total 199 (76.5) 61 (23.5) Table 3. The Distribution of Burden on Zarit Burden Interview Educational qualification (ZBI) Scale. Primary (elementary) 22 (8.5) 4 (1.5) Secondary (high) 31 (11.9) 16 (6.2) Gender Tertiary 77 (29.6) 28 (10.8) Level of burden Female (%) Male (%) N = 260 (%) Range Never been to school 20 (7.7) 2 (0.8) Left school for caregiving 49 (18.8) 11 (4.2) No burden 39 (15.0) 10 (3.9) 49 (18.9) 0-20 Total 199 (76.5) 61 (23.5) Mild to moderate 46 (17.7) 21 (8.1) 67 (25.8) 21-40 Occupation burden Employed 89 (34.2) 11 (4.2) Moderate to 69 (26.6) 24 (9.2) 93 (35.8) 41-60 Unemployed 31 (11.9) 29 (11.2) severe Business/farming 79 (30.4) 21 (8.1) Severe burden 45 (17.3) 6 (2.3) 51 (19.6) 61-88 Total 199 (76.5) 61 (23.5) Total 199 (76.5) 61 (23.5) 260 (100.0) 0-88 Duration of care (hr/day) 3-8 16 (6.2) 36 (13.8) 9-12 145 (55.8) 17 (6.5) Table 4. The Relationship Between Gender and Caregivers 13-24 38 (14.6) 8 (3.1) Burden. Total 199 (76.5) 61 (23.5) Class interval Class Years Level of burden (range) mark (x) F F Less than 1 year 67 (25.8) 34 (13.1) 1(female) 2(male) Between 1 and 2 years 90 (34.6) 19 (7.3) No burden 0-20 10.0 39 10 Between 2 and 3 years 32 (12.3) 6 (2.3) Mild to moderate 21-40 30.5 46 21 Above 3 years 10 (3.8) 2 (0.8) burden Total 199 (76.5) 61 (23.5) Moderate to severe 41-60 50.5 69 24 Severe burden 61-88 74.5 45 6 Total 0-88 199 61 Gender Difference in the Level of Note. T-test Cal. = 1.27. T-test tab. = 1.62, N = 260, p < .05. Burden Generally, the results revealed a level of burden ranging 1.27 and the tabulated value of 1.62 at p < .05, indicating a between 14 and 71 on ZBI Scale (Table 3); 49 (18.8%) significant relationship between the levels of burden experi- respondents (females 39, males10) experienced no burden enced by gender (Table 4). while providing care, 67 (25.8%) respondents (females 46 males 21) experienced mild to moderate level of burden, 93 Availability of Support to Caregivers (35.8%) respondents (females 69, males 24) experienced moderate to severe level of burden while 51 (19.6%) respon- The availability of support was categorized into four sections, dents (females 45, males six) experienced severe level of namely, providing information on practical and coping skills, burden in providing care to PLWHA. financial assistance, help with caregiving and emotional sup- The relationship between gender and caregivers burden port (Figure 1). Among the 260 respondents, 152 (58.5%) assessed with students t test gave a calculated t test value of agreed to have received some form of support while 108 6 SAGE Open Informaon on Financial Emoonal Assistance with Noformof praccal and assistance support caregiving support coping skills Figure 1. Assessing the extent of support to caregivers of PLWHA in Nigeria. Note. PLWHA = people living with HIV/AIDS. < 0.05, which showed a significant relationship between availability of support and caregivers burden (Table 5). Out of 52 respondents who provided care for 3 to 8 hr/day, the majority 28 experienced no burden, 10 respondents expe- Willing to connue with caregiving rienced mild to moderate burden, eight respondents experi- Not willing to connue 213 enced moderate to severe burden while six respondents with caregiving experienced severe burden. Out of 162 respondents who pro- vided care for 9 to 12 hr/day, 16 experienced no burden, 50 respondents experienced mild to moderate burden, the majority 73 respondents experienced moderate to severe bur- den while 23 respondents experienced severe burden. Among Figure 2. The caregiver’s willingness to continue in caregiving 46 respondents who provided care for 13 to 24 hr/day, five role. experienced no burden, seven respondents experienced mild to moderate burden, 12 respondents experienced moderate to (41.5%) received no form of support at all. The form of support severe burden while the majority 22 respondents experienced received included 6 (0.2%) information on practical and coping severe burden. A chi-square value of 80.0 was obtained at p skills, 36 (13.9%) financial assistance, 72 (27.7%) help with < 0.05, which showed a significant relationship between caregiving, and 38 (14.6%) emotional support. Most caregivers duration of care and caregivers burden (Table 6). perceived their role to be extremely stressful with adverse con- sequences on their health, which some form of support from Discussion individuals or government could have helped to ameliorate. There was no difference in the types of support by gender. Caring for those with terminal diseases such as HIV/AIDS is intrinsically a demanding exercise that requires empathy, an attribute which is commonly found among the women Willingness to Continue With Caregiving (Okoye, 2012). This study showed clearly that the burden of Among the 260 caregivers, the majority 213 (81.9%) respon- care on AIDS affected households, rest more on women and dents (171 females and 42 males) expressed their desire to girls than men. These are evident in the number of females continue with caregiving, while 47 (18.1%) caregivers (28 who took up caregiving roles in this study compared with females and 14 males) did not feel like continuing with care- males. This is similar to UNAIDS (2008) report that caring giving role (Figure 2). for the sick in affected households is relegated to females Out of 108 respondents who received no support, 12 thereby increasing the burden of care on females than males. experienced no burden, 23 respondents experienced mild to This finding also corroborates male dominance in the moderate burden, the majority 37 respondents experienced Nigerian society that culturally assigns caregiving role to moderate to severe burden while 36 respondents experienced women. But in the absence of eligible females, the males are severe burden. A chi-square value of 25.1 was obtained at p often engaged in the caregiving role. This traditional gender Frequencies Asuquo et al. 7 Table 5. The Relationship Between Availability of Support and Caregivers’ Burden. Mild to moderate Moderate to severe Severe Availability of support No burden burden burden Burden Total Received any form of support 37 (28.7) 44 (39.2) 56 (54.4) 15 (29.8) 152 Received no support 12 (20.4) 23 (27.8) 37 (38.6) 36 (21.2) 108 Total 49 67 93 51 260 2 2 2 2 Note. Figures in parentheses are expected frequencies. χ Cal. = 25.1. χ Tab. = 7.81, df = 3, N = 260, p < 0.05 where “χ Cal.” and “χ Tab.” represents Chi square calculated and Chi square tabulated respectively. Table 6. The Relationship Between Duration of Care and Caregivers’ Burden. Duration, Mild to moderate Moderate to hours/day No burden burden severe burden Severe burden Total 3-8 28 (9.8) 10 (13.4) 8 (18.5) 6 (10.2) 52 9-12 16 (30.5) 50 (41.8) 73 (58.0) 23 (31.8) 162 13-24 5 (8.7) 7 (11.9) 12 (16.5) 22 (9.0) 46 Total 49 67 93 51 260 Note. Figures in parentheses are expected frequencies. χ Cal. = 80.0, χTab. = 10.65, df = 6, N = 260, p <0.05. norm allows women and girls to provide care but creates the less likely to obtain formal help. Without appropriate inter- social barrier against men and boys becoming caregivers, vention, increased level of burden produces negative conse- exacerbating the burden for women and girls. This corrobo- quences which manifest as symptoms of anxiety and rates other reports that women are the primary caregivers in depression and induced changes that could lead to heart dis- most households and societies (FYI, 2013; NAC & AARP, ease, hypertension, psychological worries, loneliness, 2009; UNAIDS, 2008). Takamura and Williams (1998) increase rate of physiological illness and suppressed immune observed that in most society, these caregivers often go responses (Abasiubong et al., 2011; Asuquo, Etowa, & unnoticed except by those who depend on their care. VSO Adejumo, 2013; Bevans & Sternberg, 2012; Montgomery (2006) asserted that the caregiver has a right to be valued, et al., 2007; NAC & AARP, 2009; Robison, Fortinsky, supported and compensated appropriately to ensure that the Kleppinger, Shugrue, & Porter, 2009). According to patient receive a high quality care. Primary caregiver some- Takamura and Williams (1998), it is pertinent to perceive times pays a high price and lose opportunities, because pro- caregivers as potential patients and accord them the neces- viding care may entail sacrificing school or work to provide sary support as little can be achieved when their well-being care or taking up caregiving role in addition to existing is jeopardized. reproductive and household economic roles. Female caregivers spend more hours and years in provid- Apart from lost opportunities in caregiving, majority of ing care (Table 2) than male counterparts as observed in this caregivers experience high burden level as manifested in this study. This finding is associated with traditional gender study (Table 3). This indicates the degree to which caregiv- norms which appropriates caregiving to women and for the ing endeavor impacts on emotional, physical health, finan- men to provide economically for their families, therefore cial and social life of the caregiver. The physical labor of spending less time in caregiving. This corroborates previous attaining to all the activities of daily living, coupled with lack report (Gomo, 2008; VSO, 2006) that men’s low participa- of resources to spend on their own medication, produces det- tion in caregiving are sociocultural since they are expected to rimental effects on the carer’s own health (Saengtienchai & provide financial spport for their families. Reinhard et al. Knodel, 2001). The physical and psychosocial impacts of (2008) affirms that caregiving is a day-to-day obligation and caregiving on women’s well-being are rarely acknowledged, most family caregivers provide 8 or more hours of care per as most women often ignore their personal health concerns to week, and one in five caregivers may provide more than 40 consummate the challenges of caregiving (Asuquo, Etowa, hr of care per week. This finding is comparable with Family & Adejumo, 2013; UNAIDS, 2008; VSO, 2006; WHO, Caregiver Alliance (2003) who affirmed that even when men 2003). provide assistance, female caregivers spend as much as 50% There was a significant relationship between the level of more time providing care than male caregivers. This study burden experienced and gender in this study. This is similar further revealed that providing care ranges from short period to Allegra (2012) report which asserted that women experi- of time to full-time commitment and a significant relation- enced more burden than men due to their tendency to per- ship (p <0.05) exist between duration of care and caregivers form more personal care tasks as primary caregivers and are burden (Table 6). This also agrees to other reports asserting 8 SAGE Open that whether it is for a short period of time or over extended also conformed to Davis (2012) empirical study on role the- years, caregiving is a normative life challenge which exacer- ory, which affirmed that a person’s behavior is indirectly or bates the burden of caregivers without adequate coping strat- directly influenced by the social environment. But willingness egies (Cavanaugh, 1998; Chambers, Ryan, & Millar, 2001). to continue with caregiving role depend on caregivers inter- There was limited support to caregivers in terms of informa- nalize coping behavior (McKee et al., 1999) and the patient’s tion on practical and coping skills, financial assistance, help symptom may play a critical role in accounting for levels of with caregiving and emotional support to caregivers (Figure 1). caregiver’s depressiveness or willingness to continue in care- Caregivers took up the caregiving role without educational giving role (Given et al., 2005). Majority of those that were preparation and in most cases unfamiliar with the type of care not willing to continue with caregiving role fell among family they must provide or the extent of care needed. The lack of sup- caregivers that did not receive any form of support, spending port may be attributed to the low value placed on caregiving, more than 9 hr/day in providing care. This is similar to Asuquo, especially when caregiving is dominated by females. Adejumo, et al., (2013) and Habid and Rahman (2010) who UNAIDS (2008) and VSO (2006) asserted that gender asserted that with increased burden and limited support, care- bias may play a significant role in the none recognition and givers experience serious burnout and are physically and psy- low value assigned to the “care economy” which is part of chologically disabled. UNAIDS (2008) and Zarit (2002) the unremunerated work performed by women. The need to recommended the provision of social support and counseling acknowledge and celebrate family caregivers as one of the before role assumption to alleviate burden of caregiving and notable strengths of our nation’s families and communities enhance willingness to continue with role. cannot be overemphasized as no one can afford to pay the costs of replacing all informal caregivers with paid personnel Conclusion/Recommendation (Takamura & Williams, 1998). Chambers et al. (2001) emphasized that it is prejudice to assume that carers have Over the past decade, improved antiretroviral regimens, con- necessary knowledge and skills to care for an ill relative cerns about the cost of inpatient care and consumer’s prefer- without some form of support or training. Similarly, Rose ences have shifted HIV/AIDS care from hospitals to home (1997) affirmed that providing information on practical and and community settings. This shift has placed heavy burden coping skills plays important role in caregiver’s effective on the family and friends of HIV positive individuals, and management of burden and any associated stress the care- most of them had very little knowledge of HIV management giver may experience. The need to support caregivers is con- or available resources. Strategies for counteracting caregiv- sistent with most literatures on support needs. UNAIDS ing stressors must be addressed by recognizing and support- (2008) and Saengtienchai and Knodel (2001) also agreed that ing family caregivers as well as seeking measures to enhance without proper training on practical and coping skills, ade- involvement of male in family caregiving. This could be quate information and supplies, there is the risk of exposure achieved through campaigns to create awareness on associ- to communicable opportunistic infections. Fear of HIV con- ated burden of care on women and the encouragement of tagion can cause considerable anxiety on the part of caregiv- equal distribution of household and caregiving responsibili- ers, especially if they are not well informed about the actual ties. The strengthening of health care systems to provide risks (Asuquo, Adejumo, et al., 2013). information on practical and coping skills to caregivers of This study also revealed a significant relationship (p < PLWHA, will reduce the burdens that caregiving poses on 0.05) between support and caregiver’s burden. Therefore, them. The government should provide as a matter of urgency support in form of information and training on caregiving hospices where PLWHA can meet with medical profession- should be given to caregivers before the commencement of als for advice. Counseling sessions should be organized reg- caregiving role. Therefore, with the global commitment to ularly to present a forum where caregivers could air their attain universal access to prevention, care, support and treat- problems and challenges encountered during caregiving ser- ment for those PLWHA, the need to reflect on what these vices. The need also arises for the recognition of primary goals might mean in terms of burden on women and girls caregivers as potential patients, and the formulation of policy should be considered (VSO, 2006). that recognizes and support female caregivers of PLWHA in In spite of the high level of burden perceived by caregivers, Africa. This will ensure caregiver’s right to high quality care many still showed the willingness to continue in caregiving through the development of a standardized assessment for- role. This may be attributed to strict adherence to cultural mat to assess caregivers during each hospital visit. expectation, fraternal love for the sick and sheer need. Observations akin to the role theory of Berg-Weger, Limitation McGartland Rubio, and Tebb (2000) suggest that caregivers strive to fulfill a normative expectation to avoid criticism by This study was limited to caregivers of PLWHA in Calabar others. Okoye (2012) affirmed that this normative role in municipality. It was also not possible to identify households Nigeria is backed by persistent influence of traditional norms, that were predominantly male or female controlled. The instru- values and behavior, practiced as deified and not routines. This ment used did not measure the HIV status of the caregivers. Asuquo et al. 9 Acknowledgments Fromholt (Eds.), Clinical geropsychology (pp. 131-136). Washington, DC: American Psychological Association. The authors are grateful for information and support received from Chambers, M., Ryan, A., & Millar, S. L. (2001). Exploring the the Managing Director of Positive Development Foundation, an emotional support needs and coping strategies of family carers. NGO in Calabar, Nigeria during the course of this study. Journal of Psychiatric and Mental Health Nursing, 8, 99-106. Davis, S. (2012, May 6-12). Why nurses are the unsung heroes of Declaration of Conflicting Interests global health. In International Nurses Week. Alabama State The author(s) declared no potential conflicts of interest with respect Nurses Association, Alabama, USA. to the research, authorship, and/or publication of this article. Family Caregiver Alliance. (2003). Women and caregiving: Facts and figures. Retrieved from http://www.caregiver.org/care- giver/jsp/content_node.jsp?nodeid-892 Funding Federal Ministry of Health. (2011). WHO, Global Health The author(s) disclosed receipt of the following financial support Observatory (GHO). Abuja, Nigeria: Government House Press. for the research, authorship, and/or publication of this article: One Forever Young Information. (2013). Survey confirms woman assume of us (EFA) received study fellowship grant from the University of major burden as caregivers. Retrieved from http://forevery- Calabar, Nigeria, to whom we are grateful. oungnews.com/posts/2086-survey-confirms-woman-assume- major-burden-as-caregivers. 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Estimates devel- Parents providing care to adult sons and daughters with HIV/ oped by WHO, UNICEF, UNFPA and the World Bank. Retrieved AIDS in Thailand. United Nations Programme on HIV/AIDS from http://reliefweb.int/report/world/trends-maternal-mortality- (UNAIDS) Publishers. 1990-2010-who-unicef-unfpa-and-world-bank-estimates Singh, D., Chaudoir, S., Escobar, M., & Kalichman, S. (2011). Zarit, H. (2002). Family care and burden at the end of life. Canadian Stigma, burden, social support, and willingness to care among Medical Association Journal, 170, 1811-1812. caregivers of PLWHA in home-based care in South Africa. AIDS Care, 23, 839-845 Author Biographies: Smith, M., & Segal, J. (2013). Caregiving support and help. Retrieved from http://www.helpguide.org/elder/caring_for_ Ekaete Francis Asuquo is a lecturer in Department of Nursing caregivers.htm#family Sciences, University of Calabar, Nigeria. Her area of specialisation Stephens, M. A., Townsend, A. L., Martire, L. M., & Druley, J. A. is Medical Surgical Nursing with special interest in building nurs- (2001). Balancing parent care with other roles: Interrole con- ing research capacity and improvement in quality nursing care. flict of adult daughter caregivers. The Journals of Gerontology. Josephine B. Etowa is a professor & Loyer DaSilva research chair in Series B, Psychological Sciences and Social Sciences, 56, 24-34. Public Health Nursing, Faculty of Health Sciences, University of Takamura, T., & Williams, B. (1998). Informal caregiving: Ottawa with special interest in international studies and building of Compassion in action. An introductory message from nursing capacity in low-and middle income countries. Department of Health and Human Services, USA. Retrieved from http://aspe.hhs.gov/daltcp/reports/carebro2.pdf Margaret I. Akpan is a clinican instructor at the Department of Thoits, P. (1986). Social support as coping assistance. Journal of Nursing Sciences, University of Calabar, Nigeria with research Consulting and Clinical Psychology, 54, 416-423. interest in maternal and child health.

Journal

SAGE OpenSAGE

Published: Mar 21, 2017

Keywords: female caregivers; PLWHA; burden of caregiving; Nigeria

References