**13. Discussion**

The high disease burdens in low and middle countries outweigh the available capacity and resources of the health care system, which prevent institutionalization for full recovery. Early discharge depicts the need for family caregivers, most often female who assumes caregiving role without adequate preparation as it is obvious in this study. This finding corroborates with previous report that about four to five million people serve as caregivers with the majority being women and they provide more than 80% of the care needed by HIV individuals [63]. Even though the proportion of male involved with care giving is on the increase, specific gender differences still exist as caregiving remains the traditional role of women [32].

Caregiving though a rewarding role with intrinsic benefit is laden with burden especially while caring for PLWHA at the terminal phase. This finding is consistent with other studies which affirmed that caregiving adversely affect the physical, social and psychological wellbeing of the caregiver [10, 11, 46]. The demanding role of caregiving, which requires patience, empathy and show of affection irrespective of the physical disabilities of the care recipient, is an attribute which most women acquire from birth [64]. This commensurate the finding of this study that the burden of care in HIV/AIDS affected household rest more on women and girls than men. Similarly, previous reports identify women as the primary caregivers in most households and societies [19, 22, 65]. It is however pertinent to note that female dominance in caregiving is in consonance with the Nigerian patriarchal system which culturally relegate caregiving and domestic chores to women and girls except where there are no eligible females. This is also similar to studies which report caregiving as being culturally feminized and women are socialized into nurturing roles [16, 65]. It is obvious that the traditional gender norms emancipate men from caregiving thereby exacerbating burden of care on primary caregivers who are predominantly females.

In-spite of female dominance in caregiving this study revealed that majority of primary caregivers experienced high burden level (**Table 3**). This stipulates the degree to which caregiving to PLWHA impacts on physical health, emotional, financial and social life of the caregiver. It is obvious that the physical labor of accomplishing activities of daily living especially in the presence of functional disabilities of the care recipient invoke burden. This finding is similar to studies that asserted that caregivers experienced a high level of burden which produces detrimental effects on the carer's own health [10, 54, 66]. This study revealed that burden may also be exacerbated with the lack of resources to spend on medication and other basic household needs especially where household spend less than \$6 dollars/day (**Table 1**). This is apparent because HIV disproportionately affects low and middle income countries especially in Africa, which contributes two thirds of global new HIV infections [7]. Encouraging care provision in homes is regarded as a cost-effective strategy for governments and the private sector, but little consideration is given to the physical, emotional and economic costs to households and the caregivers who take on the additional burdens, many of whom are often poor and living below US\$ 1.00 to US\$1.25 per day [10, 67, 68]. In sub-Saharan Africa, not only does correlation exist between poverty and HIV infection but HIV remained the exact outcome of poverty in the region with sexual trade, migration, polygamy, and teenage marriages as its predictors [69].

This study revealed a significant relationship between gender and level of burden, this obvious because women perform more hands on care than men, probably due to their cultural normative perception. This corroborates with previous report [70], which affirmed that women experienced more burden than men due to their propensity to execute more personal care tasks as primary caregivers and are less likely to obtain formal help. It is however pertinent to note that people rarely acknowledged the psychosocial and physical impacts of caregiving on women's well-being. While most

**113**

*The Exceptional Role of Women as Primary Caregivers for People Living with HIV/AIDS…*

female caregivers ignore their personal health concerns to consummate the challenges of caregiving, some apparently sacrifice work or school to provide care in addition to reproductive and household economic roles [41, 65, 71, 72]. The caregiver has a right to be supported, valued and compensated appropriately to ensure a high quality care [41]. Without appropriate intervention to ameliorate the impact of burden of care, it produces negative consequences which often manifest as symptoms of depression and anxiety and may subsequently induced changes that could lead to physiological ailment like hypertension, heart disease and suppressed immune responses [10, 19, 73–76]. It is therefore appropriate to recognize caregivers as potential patients and give them the necessary support as much as can be achieved when their well-being is jeopardized [72]. This study also reveals that female caregivers spend more hours and years in providing care than male counterparts. This is obvious because men are regarded as heads of family and if young, they are expected to be in school, therefore they spend less hours in caregiving. However, caregiving is regarded as unique women role; therefore, most female caregivers live with care recipients and may spend 24 hour/day providing care without any social activities or regards to personal needs. This corroborates previous reports [41, 77] that men's low contribution in caregiving is sociocultural since they are expected to provide financial support for their families. However, other studies revealed disparity in hours between men and women providing care, with women delivering more encompassing and full time care than men [23, 30, 34, 78]. A significant relationship also existed between duration of care and caregivers burden (**Table 6**). This agrees with the report that irrespective of the duration of care, caregiving depletes the personal resources of the caregivers and induced burden without appropriate coping abilities [79, 80]. Family caregivers in this study had limited support in terms of financial assistance, information on practical and coping skills, emotional support as well as help with caregiving. Most caregivers assume role without educational preparation and may not be familiar with the type and extent of care needed. It is wrong to assume that caregivers have essential knowledge and skills required to care for an ill relative without training or providing some form of support [80]. Similarly, giving caregivers information on practical and coping skills reduces caregiver's burden or their perception of caregiving as burdensome [81]. Studies affirmed the need for adequate information and proper training on practical and coping skills, to fear of HIV contagion which may induce anxiety and reduce quality of care rendered [10, 66]. Although care recipient symptoms play a critical role in accounting for levels of caregiver's depressiveness or willingness to continue in caregiving role [82]. The willingness to continue despite the high burden experienced with caregiving role, depend to a great extent on caregivers internalize coping behavior [83]. Additionally it may also be accredited to adherence to cultural norms and expectation, strong family bond, fraternal love for the sick as well as sheer need. Annotations analogous to role theory [84] asserted that caregivers strive to fulfill a normative expectation to avoid criticism by others. Similarly, role theory, affirmed that a person's behavior is indirectly or directly influenced by the social environment [85]. This normative role in Nigeria, which is backed by persistent influence of traditional norms, values and behavior, is practiced as deified and not routines [64]. However, studies recommend that, the provision of social support and counseling before the assumption of caregiving role, alleviate burden and enhance willingness to continue with role [65, 86]. It was however obvious that majority of caregivers who decline future caregiving role did not received any form of support, while spending over 9 hours per day providing care. This findings substantiate other studies which assert that increased burden with limited support validate burnout as well as physical and psychological incapacitation [12, 87]. Therefore, with the global commitment to achieve universal access to prevention, care, support and treatment for those PLWHA, there is need to reflect on what these goals might mean in terms of burden on women and girls [41].

*DOI: http://dx.doi.org/10.5772/intechopen.93670*

#### *The Exceptional Role of Women as Primary Caregivers for People Living with HIV/AIDS… DOI: http://dx.doi.org/10.5772/intechopen.93670*

female caregivers ignore their personal health concerns to consummate the challenges of caregiving, some apparently sacrifice work or school to provide care in addition to reproductive and household economic roles [41, 65, 71, 72]. The caregiver has a right to be supported, valued and compensated appropriately to ensure a high quality care [41]. Without appropriate intervention to ameliorate the impact of burden of care, it produces negative consequences which often manifest as symptoms of depression and anxiety and may subsequently induced changes that could lead to physiological ailment like hypertension, heart disease and suppressed immune responses [10, 19, 73–76]. It is therefore appropriate to recognize caregivers as potential patients and give them the necessary support as much as can be achieved when their well-being is jeopardized [72].

This study also reveals that female caregivers spend more hours and years in providing care than male counterparts. This is obvious because men are regarded as heads of family and if young, they are expected to be in school, therefore they spend less hours in caregiving. However, caregiving is regarded as unique women role; therefore, most female caregivers live with care recipients and may spend 24 hour/day providing care without any social activities or regards to personal needs. This corroborates previous reports [41, 77] that men's low contribution in caregiving is sociocultural since they are expected to provide financial support for their families. However, other studies revealed disparity in hours between men and women providing care, with women delivering more encompassing and full time care than men [23, 30, 34, 78]. A significant relationship also existed between duration of care and caregivers burden (**Table 6**). This agrees with the report that irrespective of the duration of care, caregiving depletes the personal resources of the caregivers and induced burden without appropriate coping abilities [79, 80]. Family caregivers in this study had limited support in terms of financial assistance, information on practical and coping skills, emotional support as well as help with caregiving. Most caregivers assume role without educational preparation and may not be familiar with the type and extent of care needed. It is wrong to assume that caregivers have essential knowledge and skills required to care for an ill relative without training or providing some form of support [80]. Similarly, giving caregivers information on practical and coping skills reduces caregiver's burden or their perception of caregiving as burdensome [81]. Studies affirmed the need for adequate information and proper training on practical and coping skills, to fear of HIV contagion which may induce anxiety and reduce quality of care rendered [10, 66].

Although care recipient symptoms play a critical role in accounting for levels of caregiver's depressiveness or willingness to continue in caregiving role [82]. The willingness to continue despite the high burden experienced with caregiving role, depend to a great extent on caregivers internalize coping behavior [83]. Additionally it may also be accredited to adherence to cultural norms and expectation, strong family bond, fraternal love for the sick as well as sheer need. Annotations analogous to role theory [84] asserted that caregivers strive to fulfill a normative expectation to avoid criticism by others. Similarly, role theory, affirmed that a person's behavior is indirectly or directly influenced by the social environment [85]. This normative role in Nigeria, which is backed by persistent influence of traditional norms, values and behavior, is practiced as deified and not routines [64]. However, studies recommend that, the provision of social support and counseling before the assumption of caregiving role, alleviate burden and enhance willingness to continue with role [65, 86].

It was however obvious that majority of caregivers who decline future caregiving role did not received any form of support, while spending over 9 hours per day providing care. This findings substantiate other studies which assert that increased burden with limited support validate burnout as well as physical and psychological incapacitation [12, 87]. Therefore, with the global commitment to achieve universal access to prevention, care, support and treatment for those PLWHA, there is need to reflect on what these goals might mean in terms of burden on women and girls [41].

*Suggestions for Addressing Clinical and Non-Clinical Issues in Palliative Care*

The high disease burdens in low and middle countries outweigh the available capacity and resources of the health care system, which prevent institutionalization for full recovery. Early discharge depicts the need for family caregivers, most often female who assumes caregiving role without adequate preparation as it is obvious in this study. This finding corroborates with previous report that about four to five million people serve as caregivers with the majority being women and they provide more than 80% of the care needed by HIV individuals [63]. Even though the proportion of male involved with care giving is on the increase, specific gender differences still exist as caregiving remains the traditional role of women [32]. Caregiving though a rewarding role with intrinsic benefit is laden with burden especially while caring for PLWHA at the terminal phase. This finding is consistent with other studies which affirmed that caregiving adversely affect the physical, social and psychological wellbeing of the caregiver [10, 11, 46]. The demanding role of caregiving, which requires patience, empathy and show of affection irrespective of the physical disabilities of the care recipient, is an attribute which most women acquire from birth [64]. This commensurate the finding of this study that the burden of care in HIV/AIDS affected household rest more on women and girls than men. Similarly, previous reports identify women as the primary caregivers in most households and societies [19, 22, 65]. It is however pertinent to note that female dominance in caregiving is in consonance with the Nigerian patriarchal system which culturally relegate caregiving and domestic chores to women and girls except where there are no eligible females. This is also similar to studies which report caregiving as being culturally feminized and women are socialized into nurturing roles [16, 65]. It is obvious that the traditional gender norms emancipate men from caregiving thereby exacerbating burden of care on primary caregivers who are predominantly females. In-spite of female dominance in caregiving this study revealed that majority of primary caregivers experienced high burden level (**Table 3**). This stipulates the degree to which caregiving to PLWHA impacts on physical health, emotional, financial and social life of the caregiver. It is obvious that the physical labor of accomplishing activities of daily living especially in the presence of functional disabilities of the care recipient invoke burden. This finding is similar to studies that asserted that caregivers experienced a high level of burden which produces detrimental effects on the carer's own health [10, 54, 66]. This study revealed that burden may also be exacerbated with the lack of resources to spend on medication and other basic household needs especially where household spend less than \$6 dollars/day (**Table 1**). This is apparent because HIV disproportionately affects low and middle income countries especially in Africa, which contributes two thirds of global new HIV infections [7]. Encouraging care provision in homes is regarded as a cost-effective strategy for governments and the private sector, but little consideration is given to the physical, emotional and economic costs to households and the caregivers who take on the additional burdens, many of whom are often poor and living below US\$ 1.00 to US\$1.25 per day [10, 67, 68]. In sub-Saharan Africa, not only does correlation exist between poverty and HIV infection but HIV remained the exact outcome of poverty in the region with sexual trade, migration, polygamy, and teenage marriages as its predictors [69].

This study revealed a significant relationship between gender and level of burden, this obvious because women perform more hands on care than men, probably due to their cultural normative perception. This corroborates with previous report [70], which affirmed that women experienced more burden than men due to their propensity to execute more personal care tasks as primary caregivers and are less likely to obtain formal help. It is however pertinent to note that people rarely acknowledged the psychosocial and physical impacts of caregiving on women's well-being. While most

**13. Discussion**

**112**
