This section describes definition of family caregiver and effects of caregiving on caregiver of stroke patients.
2.3.1 Definition of family caregiver
According to Larsen and Lubkin (2006), caregiver is someone who is responsible for attending to the daily needs of another person. Caregivers are responsible for the physical, emotional and often financial support of another person who is unable to care for him/herself due to illness, injury or disability (Pearlin et al., 1990). The care recipient may be a family member, life partner or friends. Caregivers are sometimes described as “informal”, a term professionals use to describe those who care for family members or friends in the home, typically without payment. Whereas, formal caregiver refers to home health care providers and other professionals, are trained and paid for their services. Some formal caregivers are trained volunteers associated with an agency (Alliance, 2006).
Family caregivers, informal caregivers or informal carer refers to a family member or a relative who provides help to a patient with stroke at home. This person helps according to needs of the patient with limitations in activities of daily living, or needs for special care and treatment. Caregiving may be provided consistently in a
period or forever. Caregivers can be categorized into two categories based on level and limit of responsibility as follows (Alliance, 2006):
- Primary caregiver is a person who has a primary duty in direct caregiving to serve physical, mind and social needs such as taking a bath, cleaning the body, taking care of personal hygiene, getting dressed, and feeding food directly or through a tube dressing wounds, helping in excretion, and preparing medicine for the patient. Other responsibilities are to encourage and support the patient in participation in family and society activities. These people spend time to take care more persistently and consistently than others (Alliance, 2006).
- Secondary caregiver refers to another person in the caregiving network, responsible for direct caregiving or non-direct caregiving activities. This person occasionally does activities instead of the primary caregiver, or helps the primary caregiver in caregiving but with less time spent (Alliance, 2006).
Previous studies have shown that caregivers are all ages and come from different social classes. Although in recent years the age of both caregivers and care recipients have increased. The average age of a caregiver is 49. More than half of all caregivers are between 18 and 49 years old, but there has been a recent shift upwards in caregivers who are between 50 and 64 (National Alliance for Caregiving, 2009).
The majority caregivers are women (66%), although men also serve as caregivers. The care of a family member, in the absence of a spouse, often falls on the shoulders of a daughter or daughter-in-law (Nishi et al., 2010). In Vietnam, according to Hayashi, Hoang, and Nguyen (2013) indicated that almost caregivers are female (67.4%) and caregivers fell almost equally into 2 age groups: 52.3% caregivers were 45 or younger, and 47.7% were 46 or older.
The number of caregivers in the general population of Vietnam has not been officially reported. Nguyen and Nguyen (2010) analyzed the secondary data of 979 elderly participants from five provinces in Vietnam (Quang Nam, Ho Chi Minh City, Thanh Hoa, Son La, and Kon Tum). Among 938 responders who chose home- based care when suffering from illness, 74.2% (696) of participants received care from their children, 22% (206) provided self-care, and 2.1% (20) received care from friends or others. Only 0.5% (5) of the participants hired a housemaid to take care for them.
These numbers may increase or differ from the current situation, because of economic
development, industrialization and urbanization within Vietnam. In 2009, the National Alliance for Caregiving found that approximately 28.5% of all American households provide some degree of caregiving services to a family member or friend. This means that more than 66 million informal caregivers provided care during that year for patients with disabilities and chronic conditions, including stroke (Collins & Swartz, 2011). The investment provided by home caregiving was estimated to be worth $375 billion per year in 2011, which reflects an increase of $110 billion over the cost seven years prior (Collins & Swartz, 2011). This emphasizes the increasing importance of informal caregivers to the maintenance and care of patients with disabilities.
2.3.2 Effects of caregiving on caregiver of stroke patients
The data showed that about 70% of stroke survivors suffer from stroke sequels such as disability, speech problem, etc. which directly affect the patients‟ daily life and even leading to the patients‟ full dependence on their caregivers‟ assistance in daily living (Gillen, 2015). Effects of caregiving on physical and psychological health of caregivers of stroke survivors have indicated from theoretical and empirical attention. In addition, the association between the demands of caregiving on the caregiver's own physical and mental health and the indirect effect on the care recipient has been well-documented during the past two decades (Gillen, 2015; Schulz &
Sherwood, 2008). The literature review had to highlight the effects of caregiving on psychological health, physical health, family functioning, and social in caregivers of stroke patients as follows:
2.3.2.1 Psychological health
Caregivers of stroke patients frequently experience depression and anxiety (Ain et al., 2014; Balhara et al., 2012; Cameron et al., 2011). Berg and colleagues (2005) found that 23% to 42% of caregivers ware significant experienced with depression. In a study of 242 caregivers of stroke patients, 47% of caregivers experienced prominent mild to severe depressive symptoms after their family member's stroke. Higher depression severity in caregivers was associated with caring for a man, and having worse health and poor family functioning (McLennon et al., 2014). Similarly, in another study among 199 stroke survivors by Das et al (2010), anxiety and depression were found in 70% and 76% of caregivers, respectively.
Van Exel et al. (2005) indicated that caring for patients who have experienced stroke can have adverse psychological effects on informal caregivers. Informal caregivers are at risk of developing depression, strain, and anxiety in the weeks and months following stroke (Gillespie & Campbell, 2011; Green &
King, 2009). In a cohort study conducted by Simon et al. (2009), 105 informal caregivers of patients who recently experienced stroke were interviewed. It was found that caregivers were two-and-a-half times as likely to have significant psychological distress compared with a control group of non-caregivers.
2.3.2.2 Physical health
Providing care for a family member after a stroke can result in significant physical health consequences. Stress in stroke caregivers has been consistently shown to affect caregiver physical health. A meta-analysis about correlates of physical health of informal caregivers (O‟Shea & Goode, 2013; Pinquart
& Surensen, 2007) found that caregivers have poorer physical health than non- caregivers, measured both by perceived health and by objective health measures, such as stress hormones, antibodies, and medication use. Poor health of caregivers may be due to (a) the effects of physical exertion that produces muscle strain, skeletal injury, aggravation of chronic illness such as arthritis, or other sources of physical discomfort and pain; (b) negative changes in health-related activities, such as diet and exercise;
(c) physiological effects of psychological distress, such as depression, which increase susceptibility to infectious agents; and (d) changes in sympathetic arousal and cardiovascular reactivity that increase the risk for hypertension and cardiovascular disease (Cao et al., 2010; Pinquart & Surensen, 2007).
2.3.2.3 Family functioning
Strokes not only threaten a patients' physical and psychological status, but also the health pattern of the entire family. Furthermore, a disordered family system can negatively influence the patient's ability to cope with the disease and affect their rehabilitation (Clark et al., 2004; Guo & Liu, 2015). Family function is an important factor of health behaviors, such that good family function can promote the formation of healthy behaviors (Jiang & Xu, 2014). Family function is the ability of a family to meet the various needs of its members, which is reflected in mutual love and
support, emotional communication, and the ability to share life events and stress (Bemister et al., 2015).
2.3.2.4 Social effects
The burden of having to provide care to the patients, together with the duty and responsibility the caregivers already have, can lead to stress. Thus, caregiver may lose motivation to perform their tasks, to participate in social functions, and to maintain a relationship with family members (Bhattacharjee et al., 2012). Some caregivers may feel lonely, and others may isolate themselves from society (Cao et al., 2010; Grant et al., 2006) as they feel that they are unable to play their roles as they are expected by the society.
In brief, it can be said that becoming caregivers of stroke patients is a responsibility which requires constant care and which can easily cause chronic stress.
Caregivers may assess the caregiving situation as a threat to their well-being, and they may believe that giving care to the patients makes them lose their professional life and their potential to live their life. These affect the overall health status of caregivers. For instance, a study conducted by Hassan et al. (2011) has found that most of the caregivers develop health problems after giving care to the stroke patients. Likewise, Pesantes and colleagues (2017) discovered that all participants reported having experienced emotional stress and depressive symptoms as a result of caregiving.
Although most had family support, reduced social activities and added unanticipated financial burdens increased caregiver's stress.