**6. Community management of stroke**

Post stroke, many stroke survivors want to return to the roles they had prior to the stroke and integrate into their communities [46, 106]. However, the specific support systems required in helping stroke survivors and their caregivers remain unclear as the onset of stroke is sudden and patients and relatives are ill prepared to deal with the subsequent disability [7, 93, 107]. Survivors of stroke are primarily rehabilitated as inpatients and are then discharged home once it is felt that the person and their primary caregivers can cope [108]. In most low-income countries community support for stroke survivors and their families remains fragmented and poorly coordinated [6, 42, 101, 107]. In rural areas this problem is further compounded by physical geographical surroundings which are not conducive for mobility in any form [109, 110]. This results in patients receiving minimal therapeutic interventions to assist with recovery due to lack of access to rehabilitation services. In addition, this further strengthens the need for home-based rehabilitation [111, 112]. Due to low numbers of rehabilitation personnel and inaccessibility of communities, family caregivers are important among survivors of stroke.

After experiencing a stroke, 60–74% of survivors need caregivers to take care of them since some recover with physical and cognitive limitations [7, 90, 113]. This is usually provided by informal caregivers [114]; who are mainly women [38, 115]; and may be children, spouses or other relatives of the stroke survivors [116, 117]. Due to shortage of resources in low resourced countries, support of caregivers to enable them to offer home rehabilitation may be the option of choice. Many caregivers end up suffering from emotional, physical and psychological burnout due to the burden of caring for stroke relatives over a long period [7, 116]. They are also left with little time for their own responsibilities. Financial constraints may limit visits to hospitals to get support and distances to health centres may be prohibitive [32]. The fate of stroke victims has been documented

**323**

*Supporting Survivors of Stroke in Low Resource Settings DOI: http://dx.doi.org/10.5772/intechopen.86900*

carry out the caregiving duties.

rehabilitation services [32].

important role in rehabilitation [127].

elsewhere where many die or live with morbidities [13, 32, 93]. The challenges that caregivers face require that they get support from the health professionals to

Earlier on, the importance of caregivers as part of the community support for survivors of stroke was highlighted [118]. Their involvement may help reduce stroke recurrence and complications associated with stroke, improve function and physical health as well as community reintegration [42, 47, 107, 119]. Caregiver involvement may reduce disability and depression [120] which can occur due to increased caregiver burden [114, 121]; and improve quality of life [122]; among survivors of stroke. Women, younger caregivers and caregivers with poor physical health are at a higher risk of suffering caregiver burden [123]. Caregiver support programmes should focus on self-efficacy, social support and coping strategies among these caregivers. Financial constraints are the chief causes of burden in caring for stroke survivors post discharge and could be minimised by educating caregivers on basic stroke management principles to reduce the economic burden when accessing

After suffering a stroke, stroke survivors and relatives are faced with physical, emotional and mental problems and health care providers should educate them about basic care before the patient is discharged to adequately prepare for life at home [124, 125]. As previously mentioned, after experiencing a stroke, 66–78% of survivors world-wide need caregivers to help with activities of daily living since some recover with physical and cognitive limitations [7, 66, 67, 113]. Caring for a stroke survivor is a complex, stressful, life changing experience for both the survivors and their family caregivers especially when one had not prepared for it [7, 117]. Caring for a stroke survivor requires both informal and formal caregivers. While formal caregivers are trained, the informal caregivers are not, and are also not paid for the services they offer yet play an important role in the survival of patient with stroke after discharge [38, 126, 127]. Most caregivers are therefore put into a carer role without any idea of what to do with the resultant increase in caregiver burden and poor quality of life [38, 42, 47, 100, 108]. As previously discussed, this lack of training can overwhelm caregivers who are ill prepared to care for someone with these limitations [7, 38, 42, 128–130]. The caregivers and survivors of stroke rarely receive information on the nature of stroke, its cause, management and prognosis [131]. In support of this finding other authors also noted that the specific caregiver needs were information on causes of stroke, stroke progression, prevention of recurrence, practical care, emotional care and guidelines on use of medicines as needed by people who have survived a stroke [42, 132, 133]. This further complicates their lives as their duties will also involve administration of drugs, assisting with rehabilitation exercises and performing medical procedures for which they are not trained [90, 134]. Assisting with rehabilitation exercises make them play an

Stroke is also associated with many complications such as falls, pressure sores, urinary tract infections, chest infections and caregivers must deal with these too [135]. The amount of time needed to look after an individual varies depending on several factors which may include severity of the stroke and relationship of caregiver to stroke survivor [136, 137]. Caregivers were found to complain of long hours of caregiving which in turn leads to increased caregiver strain and reduced sleep [138]. Caregiver strain also increases over time [139, 140]. Length of care is determined by the severity of the stroke where the more severely affected stroke survivors need constant care thus more strain in the caregivers [141, 142]. In contrast, another in their study found no difference in strain between those who had looked after a survivor of stroke over a long time compared to those who had cared over a short period [123]. This is because the authors found that other factors such

*New Insight into Cerebrovascular Diseases - An Updated Comprehensive Review*

within the community.

burden of care among the caregivers [7].

**6. Community management of stroke**

not be available as is the case in Zimbabwe [104, 105]; yet the caregiver's role in the health delivery system and support of stroke survivors is important. The global prevailing economic meltdown may also affect development of community services in most developing countries. This is despite home-based rehabilitation being considered an important complementary component of health-care to address stroke related disability as advocated by WHO in the case of HIV/AIDS. In South Africa, Hale et al. noted that stroke care leaves the caregiver who has no knowledge of what is going on in a predicament of what to do as information provided may not meet all their needs [33]. This results in increased caregiver strain as they may be the only source of rehabilitation available to the survivors of stroke as most cannot afford formal services due to poverty [34, 98]. There is therefore a missing link between hospital rehabilitation and survivors of stroke and their caregivers post discharge

The large numbers of people affected by stroke may also mean that the caregiver burden will increase and quality of life among many people will be affected. It is therefore important that caregivers of stroke survivors receive adequate caregiver support. When caregivers do not receive support, they may become strained resulting in inadequate support to survivors that will affect their quality of life. It is hoped that equipping caregivers by training them to look after stroke survivors may hopefully improve their outcomes and those of stroke survivors they care for. This is because elsewhere it has also been previously reported that disability affects quality of life and functional independence among survivors of stroke and increases

Post stroke, many stroke survivors want to return to the roles they had prior to the stroke and integrate into their communities [46, 106]. However, the specific support systems required in helping stroke survivors and their caregivers remain unclear as the onset of stroke is sudden and patients and relatives are ill prepared to deal with the subsequent disability [7, 93, 107]. Survivors of stroke are primarily rehabilitated as inpatients and are then discharged home once it is felt that the person and their primary caregivers can cope [108]. In most low-income countries community support for stroke survivors and their families remains fragmented and poorly coordinated [6, 42, 101, 107]. In rural areas this problem is further compounded by physical geographical surroundings which are not conducive for mobility in any form [109, 110]. This results in patients receiving minimal therapeutic interventions to assist with recovery due to lack of access to rehabilitation services. In addition, this further strengthens the need for home-based rehabilitation [111, 112]. Due to low numbers of rehabilitation personnel and inaccessibility of commu-

After experiencing a stroke, 60–74% of survivors need caregivers to take care of them since some recover with physical and cognitive limitations [7, 90, 113]. This is usually provided by informal caregivers [114]; who are mainly women [38, 115]; and may be children, spouses or other relatives of the stroke survivors [116, 117]. Due to shortage of resources in low resourced countries, support of caregivers to enable them to offer home rehabilitation may be the option of choice. Many caregivers end up suffering from emotional, physical and psychological burnout due to the burden of caring for stroke relatives over a long period [7, 116]. They are also left with little time for their own responsibilities. Financial constraints may limit visits to hospitals to get support and distances to health centres may be prohibitive [32]. The fate of stroke victims has been documented

nities, family caregivers are important among survivors of stroke.

**322**

elsewhere where many die or live with morbidities [13, 32, 93]. The challenges that caregivers face require that they get support from the health professionals to carry out the caregiving duties.

Earlier on, the importance of caregivers as part of the community support for survivors of stroke was highlighted [118]. Their involvement may help reduce stroke recurrence and complications associated with stroke, improve function and physical health as well as community reintegration [42, 47, 107, 119]. Caregiver involvement may reduce disability and depression [120] which can occur due to increased caregiver burden [114, 121]; and improve quality of life [122]; among survivors of stroke. Women, younger caregivers and caregivers with poor physical health are at a higher risk of suffering caregiver burden [123]. Caregiver support programmes should focus on self-efficacy, social support and coping strategies among these caregivers. Financial constraints are the chief causes of burden in caring for stroke survivors post discharge and could be minimised by educating caregivers on basic stroke management principles to reduce the economic burden when accessing rehabilitation services [32].

After suffering a stroke, stroke survivors and relatives are faced with physical, emotional and mental problems and health care providers should educate them about basic care before the patient is discharged to adequately prepare for life at home [124, 125]. As previously mentioned, after experiencing a stroke, 66–78% of survivors world-wide need caregivers to help with activities of daily living since some recover with physical and cognitive limitations [7, 66, 67, 113]. Caring for a stroke survivor is a complex, stressful, life changing experience for both the survivors and their family caregivers especially when one had not prepared for it [7, 117].

Caring for a stroke survivor requires both informal and formal caregivers. While formal caregivers are trained, the informal caregivers are not, and are also not paid for the services they offer yet play an important role in the survival of patient with stroke after discharge [38, 126, 127]. Most caregivers are therefore put into a carer role without any idea of what to do with the resultant increase in caregiver burden and poor quality of life [38, 42, 47, 100, 108]. As previously discussed, this lack of training can overwhelm caregivers who are ill prepared to care for someone with these limitations [7, 38, 42, 128–130]. The caregivers and survivors of stroke rarely receive information on the nature of stroke, its cause, management and prognosis [131]. In support of this finding other authors also noted that the specific caregiver needs were information on causes of stroke, stroke progression, prevention of recurrence, practical care, emotional care and guidelines on use of medicines as needed by people who have survived a stroke [42, 132, 133]. This further complicates their lives as their duties will also involve administration of drugs, assisting with rehabilitation exercises and performing medical procedures for which they are not trained [90, 134]. Assisting with rehabilitation exercises make them play an important role in rehabilitation [127].

Stroke is also associated with many complications such as falls, pressure sores, urinary tract infections, chest infections and caregivers must deal with these too [135]. The amount of time needed to look after an individual varies depending on several factors which may include severity of the stroke and relationship of caregiver to stroke survivor [136, 137]. Caregivers were found to complain of long hours of caregiving which in turn leads to increased caregiver strain and reduced sleep [138]. Caregiver strain also increases over time [139, 140]. Length of care is determined by the severity of the stroke where the more severely affected stroke survivors need constant care thus more strain in the caregivers [141, 142]. In contrast, another in their study found no difference in strain between those who had looked after a survivor of stroke over a long time compared to those who had cared over a short period [123]. This is because the authors found that other factors such

as cognitive, emotional and behavioural changes in the survivor have a negative influence on caregiver strain. On the other hand, high confidence knowledge about efficacy, high satisfaction with social support and frequent use of coping strategy confronting all had a positive influence [123]. They therefore concluded that caregiver support programs should include education about self-efficacy, stimulation of the use of the coping strategy confronting and training in mobilising social support in a way that is satisfactory to caregivers. Furthermore, support programs should be offered both to caregivers who recently started to take care of a survivor and to caregivers who have been taking care of a patient for a longer time [123].

The mean age of caregivers ranged from 36 to 70 years [100, 142]. The most common informal caregivers are spouses and adult children or other relatives most of whom are poor [100, 116, 121, 143, 144]. Most of the caregivers are females [32, 100, 123, 142, 145]. In most cases there is no one else to carry out the caregiving task [146]. Female caregivers usually encounter more caregiving demands than male caregivers [147, 148]. This is because the female caregivers spend more time doing care giving tasks and other multiple family responsibilities [147, 149]. They are also the cornerstone for development and implementation of community care policies [141]. Further to this it was also found that 93% of men were cared for by women (their spouse in 73% of cases), while 55% of women were cared for by men [100]. Governments should make sure that poor people are educated on reduction of chronic diseases [150]. This is because they will end up caring for their sick relatives.

An attractive option is the use of formal caregivers, but they are expensive and for low resources settings like SSA, where accessibility to health settings is difficult [6, 109]. Home rehabilitation using informal caregivers is therefore the option of choice and if they receive support, may provide alternative cost-effective care compared to usual care [36, 151]. However, caregivers may end up giving up their jobs to care for the stroke survivor full time, give up their houses to stay with the stroke survivor and give up some social activities like going out with friends and going to church [38, 116, 138]. As discussed before, caregivers have not been made an integral part of the health care system [118], yet are responsible for the improvement of quality of life and survival of stroke survivors post discharge and suffer burnout themselves [38, 122].

In most SSA countries, most of the caregivers are informal [36]. Due to the high HIV burden the occurrence of stroke in HIV positive patients causes a dual burden of care [10, 31, 32]. Lack of support systems in poor countries also pose challenges as most of those affected are poor and cannot afford outside support [6, 44]. It was further noted that caregivers in developing countries are usually family not educated about care and face challenges in dealing with patients' problems [32]. At the same time, they are expected to help lower the risk of stroke recurrence, reduce stroke related complications, improve function and subsequently improve community integration [42, 46, 47]. There is need to address the perceived needs of caregivers of stroke survivors to improve quality of life and reduce caregiver burden which may arise from long term caregiving. Caregiver training may be the best choice as these are available and will not need payment.
