Family Caregiving for Immigrant Seniors Living With Heart Disease and Stroke: Chinese Canadian Perspective.

Health Care for Women International

ISSN: 0739-9332 (Print) 1096-4665 (Online) Journal homepage: http://www.tandfonline.com/loi/uhcw20

Family Caregiving for Immigrant Seniors Living With Heart Disease and Stroke: Chinese Canadian Perspective Lichun Willa Liu & Susan A. McDaniel To cite this article: Lichun Willa Liu & Susan A. McDaniel (2015): Family Caregiving for Immigrant Seniors Living With Heart Disease and Stroke: Chinese Canadian Perspective, Health Care for Women International, DOI: 10.1080/07399332.2015.1038346 To link to this article: http://dx.doi.org/10.1080/07399332.2015.1038346

Published online: 18 May 2015.

Submit your article to this journal

Article views: 37

View related articles

View Crossmark data

Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=uhcw20 Download by: [NUS National University of Singapore]

Date: 06 November 2015, At: 01:16

Health Care for Women International, 00:1–19, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 0739-9332 print / 1096-4665 online DOI: 10.1080/07399332.2015.1038346

Downloaded by [NUS National University of Singapore] at 01:16 06 November 2015

Family Caregiving for Immigrant Seniors Living With Heart Disease and Stroke: Chinese Canadian Perspective LICHUN WILLA LIU Department of Sociology, University of Lethbridge, Lethbridge, Alberta, Canada

SUSAN A. McDANIEL Prentice Institute for Global Population and Economy, University of Lethbridge, Lethbridge, Alberta, Canada

Heart disease and stroke are two leading causes of death and disability among older Canadians. Family support and caregiving are crucial to the positive functional recovery and psychological wellbeing of heart disease and stroke survivors. Based on focus groups and individual interviews with Chinese family caregivers in the Canadian province of Ontario, we explored the caregiver’s experience, including the challenges, needs, and service gaps in providing care for immigrant seniors with heart disease and stroke. We found that caregiving practices and the strategies used to cope with caregiving challenges varied by gender, ethnicity, age, and length of migration. We provide recommendations for narrowing the gaps in caregiving at the end of the article. Family care and support for the ill and disabled elderly are an essential part of home-based health care in many countries around the world (Jones, Harris-Kojetin, & Valverde, 2012; McClimont, Grove, & Berry, 2004; SimsGould & Martin-Matthews, 2010). Family caregivers are often described as the backbone of the health care system because they provide the bulk of care to survivors. Prevalence surveys in Australia, New Zealand, and the United Kingdom have estimated that about one household in 20 has a primary caregiver (Cranswick & Dosman, 2008; Goodhead & McDonald, 2007). In Received 6 November 2013; accepted 2 April 2015. Address correspondence to Lichun Willa Liu, Department of Sociology, University of Lethbridge, 4401 University Drive West, Lethbridge, Alberta T1K 3M4, Canada. E-mail: [email protected] 1


2

L. W. Liu and S. A. McDaniel

the United States, more than three in 10 households have at least one unpaid family caregiver (National Alliance for Caregiving, 2009). In 2007, more than one in four Canadians or 3.8 million people aged 45 or older provided assistance to an adult with a long-term health condition or physical limitation. The number of family caregivers was expected to increase by 20% over 5 years to 4.5 million in 2012 (Sinha, 2013). It is well documented that family support and caregiving is pivotal to positive functional recovery and psychological well-being for survivors of heart disease and stroke—two leading causes of death in Canada (Statistics Canada, 2012) and worldwide (World Health Organization, 2013). It is estimated that 1.8 million Canadians, 5.7 million Americans, and 15 million people in Europe live with the effect of heart disease and stroke (Dickstein et al., 2008; Heart and Stroke Foundation of Canada, 2011; Lloyd-Jones et al., 2010). Despite its increasing prevalence among older adults, and its association with high morbidity, social and economic cost, and mortality rate (Lloyd-Jones et al., 2010; Public Health Agency of Canada, 2009), we know very little about the needs and barriers in providing care for family members with heart disease and stroke, especially among ethnic minorities in Canada. Based on focus groups and individual interviews with Chinese caregivers in Ontario, Canada,1 we explore the caregiving needs and barriers of family caregivers who provide day-to-day care for family members with heart disease and stroke by highlighting the intersectionality of gender, age, ethnicity, and immigration. Although the focus of our research is on Chinese immigrant caregivers in Ontario, Canada, we understand that many of the challenges may also happen to other ethnic minority groups in Canada and beyond. Our research will enrich literature on ethnicity and caregiving, especially literature on Chinese immigrant’s caregiving for survivors of heart disease and stroke.

LITERATURE REVIEW Substantial research has been done on family caregiving and family caregivers both in Canada and globally. Major areas of research include gender differences in caregiving (Fast et al., 2010; Navaie-Waliser, Spriggs, & Feldman, 2002), caregiving tasks and burden of care (Arksey & Hirst, 2005; Kneipp, Castleman, & Gailor, 2004; Saunders, 2008), and the impact of caregiving on health and paid employment of the primary caregivers (Bittman, Hill, & Thomson, 2007; Fletcher, Fast, & Eales, 2011; Lee, Foos, & Clow, 2010; Lilly, Laporte, Coyte, 2010; Marler & Moen, 2005; Pavalko & Woodbury, 2000; Pinquart & Sorensen, 2006). Many scholars have also documented the economic value of informal family caregiving (Access Economics, 2010; Buckner & Yeandle, 2007; Fast et al., 2013; Feinberg, Reinhard, Houser, & Choula, 2011; Hollander, Liu, & Chappell, 2009; Keating, Lero, Fast, Lucas, & Eales,


Caregiving for Chinese Living With Heart Disease and Stroke

3

2013), while others criticize the lack of social support for informal caregivers and the undervaluing of unpaid caregiving (Amendola, Oliveira, & Alvarenga, 2011; Canadian Institute for Health Information [CIHI], 2010; Lyons, Zarit, & Townsend, 2000). Women make up the majority of caregiver population, who are most likely to be spouses or adult daughters of elderly care recipients (Cranswick & Dosman, 2008; Navaie-Waliser, Spriggs, & Feldman, 2002). Research indicates that caregiving has a negative impact on women’s paid employment (Access Economics, 2005; Fast, Dosman, Lero, & Lucas, 2013; National Alliance for Caregiving, 2009), their quality of life (McPherson et al., 2011), as well as their physical and mental health (Pinquart & Sorensen, 2006). Being a member of a minority ethnicity may also create extra barriers for caregivers, which include language barriers, stigma around certain illness or disability, and different cultural expectations around caregiving (Irving, 2005). Immigrant caregivers are also more likely to experience acute strain and loneliness for lack of support from kinship networks, which are often compounded by emotional pressure and an incomplete knowledge of language (Goodhead & McDonald, 2007). Despite a large number of studies on family caregiving, there is a lack of research on ethnicity and caregiving for heart disease and stroke. In a metaanalysis of 116 empirical studies on ethnic differences in family caregiving, Pinquart and Sorensen (2005) found that much of the literature focused on caregiving for issues related to dementia or in combination with other caregiving. A recent scoping review of literature on the health and health care of ethnocultural minority older adults from the United States, Canada, the United Kingdom, Australia, and New Zealand between 1980 and 2010 confirmed a paucity of research on cardiovascular disease and caregiving (Koehn, Neysmith, Kobayashi, & Khamisa, 2013). The researchers found that cardiovascular disease accounted for only 2% of the Canadian abstracts, although it is the top leading cause of death (35%) and hospitalization (24%) in Canada. Furthermore, of the 209 abstracts involving Chinese, only nine abstracts are on cardiovascular diseases, of which only one is Canadian. Upon closer examination, this sole Canadian abstract only uses hypertension as one of the indicators to assess health among ethnic minorities in Canada, including the Chinese (Veenstra, 2009). This research on caregiving for Chinese Canadians living with heart disease and stroke will further our understanding of ethnicity and caregiving, in general, and caregiving for heart disease and stroke survivors, in particular, in Canada and internationally.

METHODS This article is part of a project that examines the service gaps, needs, and barriers of Chinese Ontarians living with heart disease and stroke, their


4


family caregivers, and health providers who are involved in supporting their health and well-being. We used multiple methods in our data collection in order to maximize the participation rate. Altogether we conducted nine focus groups, eight individual interviews, and a small open-ended survey. Overall, 26 survivors, 20 family caregivers, and 18 health care providers from across Ontario participated in this research project. The vast majority of participants (86%) are from the Greater Toronto Area (GTA), which has the largest Chinese community in Canada (Statistics Canada, 2008). The rest of the participants (14%) are from five other cities in Ontario: Ottawa, Hamilton, London, Kitchener, and Windsor, using the population size of 5,000 Chinese (according to the 2006 census) as the threshold criteria. Given the time limit of the research, we interviewed GTA participants in focus groups or individually. For participants living outside the GTA who are mainly health professionals, we interviewed them either through telephone or through an e-mail questionnaire, revised from the questions we used in face-to-face interviews. Two dialect groups of participants are included: Mandarin and Cantonese, as these two dialects are spoken by the majority of Chinese immigrants in Canada. Compared with the Cantonesespeaking Chinese, who came from Hong Kong during the 1980s and 1990s, the majority of Mandarin-speaking immigrants are recent arrivals from Mainland China. By including both the Cantonese- and Mandarin-speaking caregivers, we intend to capture their diverse caregiving experiences as much as we can. In this article, we focus on Chinese caregivers who had provided care or were taking care of family members with heart disease, stroke, or both at the time of research. They include 10 Mandarin speakers and 10 Cantonese speakers, who were interviewed in focus groups that consist of only caregivers (n = 2) or in dyad groups (n = 4) that include both caregivers and survivors. A few of the caregivers were interviewed individually in person or through telephone because they were not able to participate in the focus groups. We obtained participants’ written or oral consent as well as their demographic information prior to the interviews, which were conducted either in Mandarin or Cantonese. All focus groups and interviews were recorded, transcribed, and translated. To protect their confidentiality, we gave pseudonyms to all our participants in this article.

FINDINGS In contrast to the survivors of heart disease and stroke in our study who were mostly seniors above the age of 65 (92%) and male (69%), the majority of caregivers were women (80%) and married (75%), who ranged in age from 24 to 80, with an average age of 60 years old. One half of the caregivers were spouses, and two out of five were adult daughters. The average time in

5

Caregiving for Chinese Living With Heart Disease and Stroke TABLE 1 Characteristics of Chinese Caregivers Sex


Caregiver Age Mean Range Marital status Married Not married∗ Years since immigration Mean Range Education level High school or less College/university or above Relationship to care recipient Spouse Child Grandchild Relative Condition of care recipient∗∗ Stroke Hypertension Coronary artery disease Angina Myocardial infarction Transient ischemic attack Others (diabetes, dementia, arthritis, hyperlipidemia, auricular fibrillation, etc.)

Language

Men (n = 4)

Women (n = 16)

Cantonese (n = 10)

Mandarin (n = 10)

62 29–79

59.3 24–80

52.8 24–80

66.8 49–80

3 1

12 4

5 5

8 2

7.3 1–15

16.7 0.3–44

21 0.3–44

8.5 1–22

0 4

5 11

5 5

1 9

2 1 0 1

8 7 1 0

4 4 1 1

6 4 0

2 3 2

8 7 4

7 3 2

3 7 4

1 0 0

1 2 2

1 1 2

2 1 0

1

4

2

2

Note: ∗ Not married include those who are single, separated and divorced. ∗∗ Many care recipients reported more than one medical condition.

Canada for the Mandarin caregivers was 8.5 years as compared with 21 years for the Cantonese caregivers. Mandarin caregivers were more educated, however, as nine out of 10 of them had a university or higher education, whereas only half of the Cantonese caregivers reported post-secondary education. In addition, many of the senior caregivers, like the people they cared for, also reported suffering from cardiovascular diseases, such as hypertension, heart disease, and diabetes (see Table 1). In this study, family caregivers reported providing a variety of caregiving activities depending on their living situation, relationships to the care recipi-


6


ent, and the severity of the care required for the recipient’s health conditions. Much of the care work involved assisting survivors with the daily living activities, such as meal preparation, bathing, transportation, and assistance with finance, driving them to their doctors’ appointments, or to hospitals and rehabilitation centers. In addition, many caregivers also reported monitoring the survivors’ diet and adherence to their treatment plan, encouraging them to engage in self-care physical activities, as well as detecting their early signs of heart disease and stroke as an integral part of their routine caregiving activities. Yun, a 76-year-old woman and a recent immigrant from Mainland China, talked in detail about how she took care of her husband’s diet after he was diagnosed coronary heart disease and diabetes: Every morning, I prepare him vegetable salad for breakfast as well as milk or soymilk, cereal, and whole-wheat bread. For lunch, I give him an egg, sometimes egg with rice. I also make sure he gets a bowl of chicken soup with vegetables. For dinner, I sometimes give him a bit of rice or noodles, sometimes corns or yams. I tried to diversify and balance his diet. I also ensure that he eats at least one fruit a day and less meat. When I cook chicken soup, I remove the skin and the fat. Now, through medication and diet, his cholesterol and blood sugar are all normal.

Yun also talked about encouraging her husband to do more exercise such as taking a walk twice a day and helping her with some light garden work such as watering the plants. “He needs to move around,” Yun said. “It is not good for him to sit in front of the TV all the time.” Some caregivers reported helping the survivors to find information on their health conditions, health care services, and community programs available to them. Others reported providing emotional support to survivors. Cherry, a 24-year-old woman, reported managing to spend more time with her grandfather after her grandmother passed away. Cherry also learned to play mah-jong, her grandpa’s favorite pastime. “I don’t like mah-jong, but I learned it for him,” Cherry said, “So every week, we’ll play mah-jong together and that makes him happier.” Filial piety is an important part of Chinese culture, which requires adult children to support their parents, both physically and financially, when they get old (Zhan, 2004). Lina, a 50-year-old woman with two children, brought her parents to Canada 10 years ago so that she could fulfill her filial obligation to her parents. When her father had a stroke in 2011, Lina cared for him for 8 days and nights while he was in the hospital. Later on, after he was discharged from the hospital, Lina helped her father to recover from his illness by driving him to the rehab center every day and by massaging his affected arm at home. Lina also encouraged her father to exercise his paralyzed hands by pushing him to eat with chopsticks, and later, at the


7

suggestion of his family doctor, allowing him to do some of the housework, which the doctor said is good for his recovery. With the encouragement and help from his family, Lina’s father gradually recovered, first by using his affected hand in eating and then by resuming some of the housework, such as cooking, which he used to do before his stroke.


Challenges in Caregiving For some Chinese caregivers, fulfilling their share of filial obligation meant sacrificing their own career and their family life. Min, a 50-year-old woman, quit her job, left her family behind, and came to Canada alone 5 years ago to take care of her 80-year-old mother who had become paralyzed after a stroke a decade earlier. Min played multiple roles in caregiving: she was a round-the-clock caregiver, a cook, a chauffeur, and a translator to her mother who also had hypertension, diabetes, hyperlipidemia, and arthritis. Except for a couple of hours of home care service each week, Min had to bathe her mother and to take her out in a wheelchair most of the time by herself. Cooking was also a time-consuming task for Min, as her mother did not have many teeth and could not have sugar and salt in her meals due to her health conditions. Living in a small city in Ontario, Min talked about the many challenges she encountered in caregiving, which include language barrier, lack of adequate home care services and social support for caregivers, and absence of culturally friendly short-term and long-term care facilities for ethnic minority seniors, especially in small cities in Ontario. Min recalled having to wait overnight at an emergency room because no one there understood Chinese and she could not explain clearly in English her mother’s problems. English also poses a barrier for Min when she communicated with the family doctor and pharmacists about her mother’s illnesses and to understand instructions for her mother’s medications. Due to lack of respite programs for caregivers, Min had to depend on her neighbours and friends to take care of her mother if she needed to run an errand, and if she wanted to visit her daughter living in another country. Several caregivers also talked about the physical, emotional, and financial challenges in providing care for their family members. Betty is a woman in her early seventies who suffered from constant spine pain and had to use a walker to move around. For Betty, taking care of her husband who had recently had a stroke was a big challenge, as she had to do all the cooking and cleaning for him, as he disliked restaurant food and rejected home care services because he hated outsiders to touch his personal belongings. Betty also had to bear her husband’s bad temper and nagging in addition to doing all the housework. Betty reported suffering from great physical exhaustion and emotional stress. Betty found that her caregiving role was not only physically exhausting and emotionally stressful, it also exacerbated her existing


8


health conditions of hypertension, hyperlipidemia, and difficulty in falling asleep. The only way to keep herself from a nervous breakdown, according to Betty, was to fly to Hong Kong and stay in a hotel there for a week or two. Other caregivers in this study also reported increased emotional stress and social isolation due to long-term caregiving for their family members. Ling, a 25-year-old woman, has been the primary caregiver for her father since he had a heart attack and multiple strokes 4 years before the interview, because her mother was taking care of the family business and her brother was looking for a job. Apart from her busy study and a full-time job, Ling had to drive her father to doctors’ appointments, cook his meals, give him insulin shots, and bathe him every day. Ling also took her father to the community center, where she hoped that he could socialize with other Chinese stroke survivors. Despite her efforts, Ling’s father, a 60-year-old man who was devastated by the loss of health and his ability to work, showed no interest or motivation in doing any of the activities Ling recommended, meeting with other stroke survivors, doing exercise on a station bicycle they bought for him at home, and eating the food that is good for his diabetes. Frustrated and guilty for not being able to make her father feel better, Ling said, “Sometimes I feel like a dictator, because I am helping him get healthy. But for him, you’re monitoring him. So it’s very emotional. I feel that anything he does to lash out, it’s my failure. I fail to make him a better, healthy person.” Adding to her guilt is the challenge of meeting her father’s dietary needs—avoiding carbohydrates and sugar in his diet because she does not have the time to cook. “Sometimes I feel bad because all I can give him is rice,” Ling said. As a lonely depressed man, Ling’s father wanted to see her around all the time, but Ling had to go out to work during the day. “I have to pay the bills, the electricity bills, and his medicine bills,” said Ling. Apart from the physical, emotional, and financial challenges, Ling’s caregiving role over the past few years had taken a toll on her social life: she had no leisure time for herself nor could she date anyone. Her caregiving responsibility also prevented her from traveling far or for a long time. “I can’t leave because I’d be worried. Even if I do, it wouldn’t be fun,” said Ling. Caregiving was not only stressful and burdensome, it also created tension between caregivers and the person they cared for, and in some cases, exacerbated the family relationship. Rong was a 66-year-old woman who had been a full-time caregiver since she came to Canada in 1990. She first spent many years taking care of her mother-in-law, and then her own father, who suffered from dementia, high blood pressure, and diabetes. Since her father’s death in 2009, she had been looking after her mother who has a number of health problems: high blood pressure, heart disease, osteoporosis, and dementia. Despite all her effort in taking care of her aged mother, Rong’s relationship with her mother was not a good one. Rong’s mother not only refused to attend any community activities that Rong recommended, she also



9

complained about Rong’s incompetence to find a paid job in Canada and her inability to speak English and Cantonese fluently despite having lived in Canada for over two decades and being married to a Cantonese-speaking husband. Rong felt depressed because her mother did not trust her in dealing with her health care providers. For example, when Rong took her to see a doctor, her mother would ask Rong to wait for her outside the doctor’s office, for fear that Rong may not know how to communicate with the receptionist and the doctor, as Rong had quarrelled with them once.Rong believed that she was discriminated against by some of the doctors and nurses there due to her lack of fluency in English and Cantonese. Apart from language barriers, Rong seemed to have little knowledge about the Canadian workplace culture and consequently may have annoyed the doctors and nurses unknowingly by making unreasonable requests, such as asking her mother’s doctor to prescribe medicine for herself or insisting on getting her father discharged from the hospital on a weekend. Rong felt isolated because she had never worked outside her home and had limited contact with other people outside her family. Rong’s full-time caregiving role has also exerted some detrimental impact on her personality, behavior, and her health: Rong had very few friends and had trouble getting along with other people. She also showed a high level of insecurity, symptoms of depression, a lack of self-esteem, and an absence of self-confidence. Rong was the only person in this study who explicitly talked about having financial challenges, as she could barely pay for her monthly rent. Furthermore, with only a high-school diploma from China and with very little English language skill, Rong did not know whether and how she could apply for financial assistance, because she had accumulated a lot of debt over the years.

Juggling Care for the Old and the Young In this study, some senior caregivers reported a double burden of caring for their sick spouses living with heart disease and stroke, while simultaneously looking after grandchildren. Two women said that they came to Canada mainly to help their adult children with childcare. Their “grandparenting” tasks included babysitting, cooking for their grandchildren, and taking them to and from school and to extracurricular activities. Qin, an 80-yearold woman, talked about managing her double burden of caring for her husband when he had a heart attack and in helping her daughter with childcare: “In the morning I took the bus to my daughter’s place and helped her with childcare. In the evening, when my daughter was back from work, I came home to take care of the patient.” Qin said, “Those days were really hard, as going back and forth was very exhausting.” As a grandmother with two grandchildren, Mrs. Wang, a 71-year-old woman, talked about how she juggled spousal care and the care of two grandchildren. Every day, Mrs.


10


Wang took her grandchildren to and from school and to different after-school programs, such as volleyball classes and piano lessons. Before her husband had a stroke in 2011, he was doing most of the housework so that Mrs. Wang, who has had hypertension for many years, could have more time for recreational activities, such as singing and dancing at a community center. After her husband’s stroke, however, Mrs. Wang switched her role from a care recipient to a caregiver. She stopped all her community activities and took up cooking and cleaning in addition to her daily routine of caring for her grandchildren. She also encouraged her husband to stay optimistic and to exercise his paralyzed arm and leg. When her husband’s health got better, she resumed her community activities, this time by taking him along with her. Like Mrs. Wang, Fang, a 69-year-old woman, reported having to split her time caring for her husband, a stroke survivor, and caring for her grandchildren in both Canada and China: Over the last 5 years, I’ve been traveling back and forth between China and Canada in grandchild care. When he [her husband] had the heart attack earlier this year, I was in Shenzhen (China), taking care of my granddaughter. I was not able to leave right away as they needed to find someone else to take care of my granddaughter. When I came back to Canada 3 months later, the most critical, dangerous time for my husband was already over. . . . I originally came to Canada to take care of my grandson; now I have to take care of my husband, too.

As a recent immigrant senior, Fang faced many challenges in her caregiving role. She did not drive and was unfamiliar with the city and the public transit system. “I am not in good health and constantly feel dizzy,” said Fang. But like many senior caregivers who reported having various health problems, Fang did not give priority to her own health due to her caregiving responsibilities: I want to go see the doctor, but I can’t. It’s a long bus ride and I can’t leave everything behind. I don’t want to bother my daughter too much, as he [her husband] already troubled them a lot during his heart attack when I wasn’t around.

Fang’s reluctance to go to the doctor was contrasted by her frequent expression of guilt, and her constant fear of becoming a burden to her daughter. Whenever she was not feeling well, Fang would just take some herbal medicines she brought from China. “If I can’t bear it [her dizziness] anymore, I will go back to China to see a doctor. At least I can understand what they say,” said Fang. Meanwhile, Fang also felt that her caregiving work was important to Canada:


11

Canadians may think that we are here to use their resources. But we are also here to contribute to Canada. If we were not helping my daughter with childcare, it would affect her work, right?


Gaps in Health Care Services Many of the caregivers talked about the gaps in the Canadian health care services. These include insufficient home care hours and respite programs for caregivers, lack of interpretive services in emergency rooms, and lack of Mandarin-speaking family doctors and specialists as well as culturally appropriate long-term care services for ethnic minority seniors. Ling talked about the lack of a Chinese-speaking psychiatrist for her father who suffered from depression after his stroke and the need for more investment to establish community programs on the psychological well-being of ethnic minority seniors with heart disease and stroke. Living in a small city in Ontario, Min, a sole caregiver for her mother who became paralyzed after her stroke, hoped to see a 24-hour health interpretation service available in order to avoid delays in treatment. “My biggest wish,” said Min, “is to establish a senior home for Chinese elderly [in her city], where Chinese seniors can participate in various culturally appropriate programs, enjoy their own ethnic food, and communicate with other seniors in their own language.” Several caregivers said they need more day programs with transportation services provided. As new immigrants, Mr. Feng and Mrs. Feng, who were in their seventies and who were both caregivers and survivors of heart disease and stroke, said that they would like to see a language learning component in all the community health promotion programs that teach senior survivors some basic English words, phrases, and sentences so that they will have minimal language skills to seek help in case of an emergency.

DISCUSSION In this study, family caregivers of heart disease and stroke survivors performed a variety of instrumental tasks such as cooking, bathing, and providing transportation as well as offered emotional support, such as encouraging survivors to participate in self-care and in prescribed rehabilitation and community programs for seniors. As indicated in literature on family caregiving (Fast et al., 2010; National Alliance for Caregiving, 2009), however, much of the care work was gendered, with women far more likely than men to engage in caregiving, irrespective of their marital status: married, separated, or single, their relationship to the person they care for: spouse, children, or grandchildren, and their geographical location: whether they lived with or away from the care recipients prior to taking up the caregiving responsibilities.


12


Caregiving also varied by age. Overall, younger caregivers, mostly adult daughters, were more engaged in transporting patients to medical appointments and helping them to connect with health care resources (e.g., health information and health promotion programs), negotiating/arranging for service assistance (e.g., home care services), and providing emotional support (e.g., encouragement and companionship). Older caregivers, mostly wives, provided more assistance in daily routine activities such as preparing meals, monitoring survivors’ health conditions (e.g., measuring their blood pressure or their blood sugar level regularly) and their adherence to treatment plan, and managing and administering care (e.g., scheduling doctors’ appointments, reminding of time to take medication, and giving therapeutic massaging, etc.). Senior caregivers, especially Mandarin-speaking recent immigrant seniors, were more likely than their younger counterparts to report challenges in accessing health services, health information and health promotion programs due to lack of knowledge of Canadian health care system and language barriers, not only in English, but also in Cantonese, as most of the ethnicity-based community health services and programs were established by and for the early Cantonese-speaking Chinese immigrants. Unlike literature on care work, which focuses mainly on the double burden of paid and unpaid work among young, employed women (Armstrong & Armstrong, 2002; Eichler et al., 2010; Liu, 2011), senior caregivers in this study reported a double burden of caring for the elderly with cardiac problems and for the very young—their grandchildren. In some cases, caring for grandchildren required them to travel between different locations, for example, between their own home and their children’s home, sometimes even transnationally (as in the case of Fang), a phenomenon that Da (2003) described as “transnational grandparenting” in her study of caregiving among Chinese immigrants in Australia. Although grandparenting is not unique to Chinese immigrants (Eni, Harvey, & Phillips-Beck, 2009; Fuller-Thomson, 2005), our findings on the double burden of caregiving among Chinese immigrant seniors enrich literature on ethnic minority caregiving, which has so far focused mainly on filial caregiving for the elderly (Botsford, Clarke, & Gibb, 2011; Chappell & Funk, 2011; Lai, 2010; Neufeld et al., 2002). While some caregivers emphasize the importance and rewarding part of filial caregiving, including increased bond and closeness between adult children and their parents (as in the case of Lina), the majority of them see their caregiving role as highly stressful and burdensome (as in the case of Betty, Fang, Min, and Ling), which not only affects caregivers’ daily life and health but also hinders their social engagements (Pinquart & Sorensen, 2006). Consistent with literature on caregiving for heart failure and stroke patients (e.g., Alfred, Gott, & Gariballa, 2005; Bakas et al., 2006; Greenwood et al., 2009; Saunders, 2009), this study notes that many caregivers reported lack of time for their own concerns, decreased social participation, and increased emotional stress and social isolation (as in the case of Ling and Rong). Care-



13

giving also increased the risk of both physical and mental health problems. Overwhelmed by their caregiving burden, several senior caregivers in this study reported exacerbated self-perceived health, sleep deprivation, higher level of stress and depression, lower emotional and mental well-being in addition to worsening family relationships, especially spousal relationships (as in the case of Betty, Rong, and Fang). Like ethnic minority caregivers in other studies (see Neufeld et al., 2002; Pinquart & Sorensen, 2005), many Chinese caregivers in this study, especially those recently immigrated from Mainland China, reported difficulty in accessing formal care support largely due to language barriers and lack of knowledge of care services. Furthermore, many recent immigrant seniors lived with their children and had no or very low income. Finance posed a challenge in their caregiving options, such as accessing paid rehab program after prescribed ones ended, getting complementary medication or treatment (e.g., herbal medicine and acupuncture), and altering the house to make it wheelchair accessible. One senior caregiver said that she could barely pay for her rent with her meager pension. In contrast to some research in which Chinese caregivers refused to outsource their caregiving responsibilities or resist having care workers come into their home in order to maintain their cultural values and cultural identity (Spitzer et al., 2003), many of the caregivers in this study complained about the lack of culturally appropriate health services with regard to language and dietary requirements in formal health care system, such as hospitals and long-term care facilities, as well as insufficient hours of home care services. Contrary to the traditional practice in which adult sons and daughters-inlaw were expected to take a leading role in elder care (Chappell, 2013), the majority of the nonspouse caregivers in this study were daughters taking care of their own parents. Despite our effort in recruitment, no sons or daughtersin-law participated in this research as caregivers, even though some of the caregivers and survivors reported living with and being taken care of by their son and daughter-in-law. In common with ethnic family caregivers in other studies (Pinquart & Sorensen, 2005), caregivers in this study who were involved in extended and long-term caregiving reported exacerbated family relationships, high levels of depression, and low levels of quality of life due to a lack of social support and opportunities for leisure activities. In this study we also observed that when caregivers and the persons they cared for are interviewed together (e.g., in a dyad group), the caregivers, especially the male caregivers, were more likely to talk about the positive side of caregiving, such as how they helped, supported, and encouraged the care recipients on their journey to recovery. When interviewed separately, the female caregivers, on the other hand, tended to dwell on the negative side of caregiving, describing their caregiving experience as exhausting, constraining, and isolating, and the negative impact of caregiving on their physical, mental, emotional, and social health and well-being. This


14


may in part be due to the gendered nature of caregiving, as women were more likely to provide care that is mundane, inflexible, and time consuming, such as household chores and meal preparation, while men provided care that can be more easily planned and organized around paid work such as home repair and financial management (Cranswick & Dosman, 2008; Fast et al., 2010; Feinberg, Reinhard, Houser, & Choula, 2011; Liu, 2007). This is especially the case with new or recent immigrant women, who reported less choice with their caregiving role and greater distress due to restricted access to supportive resources and the lack of affordable alternative options (Funk & Kobayashi, 2009; Williams, Forbes, Mitchell, & Corbett, 2003).

CONCLUSIONS AND RECOMMENDATIONS We have demonstrated in this article that family caregivers were a vital resource of informal health care and they performed a number of functions in their caregiving tasks, which varied by gender, age, and cultural beliefs on eldercare. Women continued to be the principle caregivers, irrespective of their age. Despite cultural beliefs of filial piety and a few reports of caregiving as rewarding and fulfilling, most people in this study found it physically demanding and mentally stressful to provide care to their loved ones with heart diseases and stroke. Many caregivers expressed hopes and needs to close gaps in the Canadian health care system. Many caregivers hoped to see more health information translated into their ethnic languages to facilitate easy access to health care services for senior survivors and caregivers. Many participant in this study, including caregivers as well as survivors and health care providers, suggested that more Chinese-speaking doctors, specialists, and psychiatrists be hired and more public investment be made to build more ethnic-friendly and culturally appropriate health programs and care services for seniors of ethnic minority groups. Many caregivers also expressed a great need for a more integrated and well-coordinated formal care system, from long-term care (e.g., nursing homes, senior homes) to short-term care (e.g., day programs, respite), to home care (e.g., more hours of help with activities of daily living), in order to make health services more effective, affordable, and accessible for caregivers and survivors of visible minority groups in Canada. By examining the caregiving practices among the Chinese caregivers, our research furthered our understanding on ethnicity and caregiving, especially caregiving for immigrant seniors living with heart disease and stroke. More research is needed in comparing the caregiving experiences among different ethnic groups in wider Canadian or international contexts. Further research is required to examine the self-care practices caregivers undertake to maintain their own health and effective strategies to promote health and knowledge exchange among ethnic minority communities.


15

ACKNOWLEDGMENTS The authors thank Helen Leung, Alice Mui, Betty Doung, Courtney Po, and Clare Cheng from Carefirst Seniors Association, and Ratsamy Pathammavong and Leqin Lu from Heart and Stroke Foundation of Ontario, Canada, for their contribution to this research. We give special thanks to the caregivers who participated in the study.


FUNDING This work was supported by Chinese Canadian Council of the Heart and Stroke Foundation, Ontario, Canada.

NOTE 1. An earlier version of this article was presented at the 20th IAGG World Congress of Gerontology and Geriatrics, Seoul, South Korea, June 2013.

REFERENCES Access Economics. (2010). The economic value of informal care in 2010. Report prepared for Carers Australia. Canberra, Australia: Access Economics Pty Limited. Alfred, H., Gott, M., & Gariballa, S. (2005). Advanced heart failure: Impact on older patients and informal carers. Journal of Advanced Nursing, 49(2), 116–124. Amendola, F., Oliveira, M. A. D. C., & Alvarenga, M. R. M. (2011). Influence of social support on the quality of life of family caregivers while caring for people with dependence. The University of S˜ ao Paulo Nursing School Journal (Revista da Escola de Enfermagem da USP), 45, 884–889. Arksey, H., & Hirst, M. (2005). Unpaid carers’ access to and use of primary care services. Primary Health Care Research and Development, 6(2), 101–116. Armstrong, P., & Armstrong, H. (2002). Thinking it through: Women and work in the new millennium. Canadian Woman Studies, 21(4), 5–44. Bakas, T., Pressler, S. J., Johnson, E. A., Nauser, J. A., & Shaneyfelt, T. (2006). Family caregiving in heart failure. Nursing Research, 55, 180–188. Bittman, M., Hill, T., & Thomson, C. (2007). The impact of caring on informal carers’ employment, income and earnings: A longitudinal approach. The Australian Journal of Social Issues, 42, 255–272. Botsford, J., Clarke, C. L., & Gibb, C. E. (2011). Research and dementia, caring and ethnicity: A review of the literature. Journal of Research in Nursing, 16, 437–449. Buckner, L., & Yeandle, S. (2007). Valuing carers: Calculating the value of unpaid care. London, UK: Carers UK. Canadian Institute for Health Information (CIHI). (2010). Supporting informal caregivers—The heart of home care. Ottawa, Canada: Author.


16


Chappell, N. L. (2013). The cultural context of social cohesion and social capital: Exploring filial caregiving. In S. McDaniel & Z. Zimmer (Eds.), Global ageing in the twenty-first century (pp. 235–251). Surrey, UK: Ashgate. Chappell, N. L., & Funk, L. (2011). Filial caregivers: Diasporic Chinese compared with homeland and hostland caregivers. Journal of Cross-Cultural Gerontology, 26, 315–329. Cranswick, K., & Dosman, D. (2008). Eldercare: What we know today. Canadian Social Trends, 86(1), 49–57. Da, W. W. (2003). Transnational grandparenting: Child care arrangements among migrants from the People’s Republic of China to Australia. Journal of International Migration and Integration, 4(1), 79–103. Dickstein, K., Cohen-Solal, A., Filippatos, G., McMurray, J. J., Ponikowski, P., PooleWilson, P. A., & Hoes, A. W. (2008). ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure 2008. European Journal of Heart Failure, 10, 933–989. Eichler, M., Albanese, P., Ferguson, S., Hyndman, N., Liu, L., & Matthews, A. (2010). More than it seems: Learning through household work. Toronto, Canada: Women’s Press. Eni, R., Harvey, C.D.H., & Phillips-Beck, W. (2009). In consideration of the needs of caregivers: Grandparenting experiences in Manitoba First Nation communities. First Peoples Child & Family Review, 4(2), 85–98. Fast, J., Dosman, D., Lero, D., & Lucas, S. (2013). The intersection of caregiving and employment across the life course. Retrieved from http://www.rapp. ualberta.ca/∼/media/rapp/Publications/Documents/IntersectionCaregivingAnd Employment2013Jan.pdf Fast, J., Duncan, K., Dunlop, C., Eales, J., Keating, N., Lero, D., & Yoshino, S. (2010). Gender differences in family/friend caregiving in Canada: Research on aging, policies, and practice. Edmonton, Alberta, Canada: Department of Human Ecology, University of Alberta. Fast, J., Keating, N., Lero, D. S., Eales, J., & Duncan, K. (2013). The economic costs of care to family/friend caregivers: A synthesis of findings. Edmonton, Canada: University of Alberta, Research on Aging, Policies and Practice (RAPP). Feinberg, L., Reinhard, S. C., Houser, A., & Choula, R. (2011). Valuing the invaluable: 2011 update. The growing contributions and costs of family caregiving. Washington, DC: AARP Public Policy Institute. Fletcher, S., Fast, J., & Eales, J. (2011). The social and health consequences of family/friend caregiving: Fact sheets. University of Alberta: Research on Aging, Policies and Practice. Retrieved from http://www.rapp.ualberta.ca/Publications/∼/ media/rapp/Publications/Documents/2011SocialHealthConsequencesFFCaregiv ing.pdf Fuller-Thomson, E. (2005). Canadian First Nations grandparents raising grandchildren: A portrait in resilience. International Journal of Aging and Human Development, 60, 331–342. Funk, L. M., & Kobayashi, K. M. (2009). “Choice” in filial care work: Moving beyond a dichotomy. Canadian Review of Sociology/Revue canadienne de sociologie, 46, 235–252.



17

Goodhead, A., & McDonald, J. (2007). Informal caregivers literature review. A report prepared for the National Heath Committee. Wellington, Victoria, Canada: Health Services Centre, Victoria University of Wellington. Greenwood, N., Mackenzie, A., Cloud, G. C., & Wilson, N. (2009). Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: A systematic review of qualitative studies. Disability & Rehabilitation, 31, 337–351. Heart and Stroke Foundation of Canada. (2011). Statistics. Retrieved from http:// www.heartandstroke.com/site/pp.aspx?c=ikIQLcMWJtE&b=3483991&printmo de=1%20-%20references Hollander, J., Liu, G., & Chappell, N. (2009). Who cares and how much? The imputed economic contribution to the Canadian health care system of middle-aged and older unpaid caregivers providing care to the elderly. Healthcare Quarterly, 12(2), 42–49. Irving, T. (2005). Rain, hail or shine: Exploring change, loss and grief in a carer’s world. Wellington, Australia: Skylight. Jones, A. L., Harris-Kojetin, L., & Valverde, R. (2012). Characteristics and use of home health care by men and women aged 65 and over. National Health Statistics Reports, 52, 1–7. Keating, N., Lero, D., Fast, J., Lucas, S., & Eales, J. (2013). A framework and literature review on the economic costs of care. Edmonton, Canada: University of Alberta, Research on Aging, Policies and Practice (RAPP). Kneipp, S. M., Castleman, J. B., & Gailor, N. (2004). Informal caregiving burden: An overlooked aspect of the lives and health of women transitioning from welfare to employment?. Public Health Nursing, 21(1), 24–31. Koehn, S., Neysmith, S., Kobayashi, K., & Khamisa, H. (2013). Revealing the shape of knowledge using an intersectionality lens: Results of a scoping review on the health and health care of ethnocultural minority older adults. Ageing and Society, 33, 437–464. Lai, D. W. (2010). Filial piety, caregiving appraisal, and caregiving burden. Research on Aging, 32(2), 200–223. Lee, J. A., Foos, P. W, & Clow, C. L. (2010). Caring for one’s elders and family-towork conflict. The Psychologist-Manager Journal, 13(1), 15–39. Lilly, M. B., Laporte, A., & Coyte, P. C. (2007). Labor market work and home care’s unpaid caregivers: A systematic review of labor force participation rates, predictors of labor market withdrawal, and hours of work. Milbank Quarterly, 85(4), 641–690. Liu, L. W. (2007). New home, new learning: Chinese immigrants and unpaid housework and care work. In D. W. Livingstone, K. Mirchandani, & P. S. Sawchuk (Eds.), The future of lifelong learning and work: Critical perspectives (pp. 190–197). Rotterdam, the Netherlands: Sense. Liu, L. W. (2011). Learning to be a good citizen: Informal learning through unpaid household work among recent Chinese immigrants in Canada. In S. Jackson (Ed.), Lifelong learning and social justice: Communities, work and identities (pp. 155–180). Leicester, UK: NIACE. Lloyd-Jones, D., Adams, R. J., Brown, T. M., Carnethon, M., Dai, S., De Simone, G., . . . Wylie-Rosett, J. (2010). Heart disease and stroke statistics—2010 update. A report from the American Heart Association. Circulation, 121(7), e46–e215.


18


Lyons, K. S., Zarit, S. H., & Townsend, A. L. (2000). Families and formal service usage: Stability and change in patterns of interface. Aging & Mental Health, 4, 234–243. Marler, J. H., & Moen, P. (2005). Alternative employment arrangements: A gender perspective. Sex Roles, 52(5–6), 337–349. McClimont, B., Grove, K., & Berry, M. (2004). Who cares now?: An updated profile of the independent sector home care providers and their workforce in Scotland. Surrey, UK: United Kingdom Home Care Association. McPherson, C. J., Wilson, K. G., Chyurlia, L., & Leclerc, C. (2011). The caregiving relationship and quality of life among partners of stroke survivors: A cross-sectional study. Health and Quality of Life Outcomes, 9(1), 1–10. doi: 10.1186/1477-75259-29. National Alliance for Caregiving. (2009). Caregiving in the U.S. 2009. Bethesda, MD: Author. Navaie-Waliser, M., Spriggs, A., & Feldman, P. H. (2002). Informal caregiving: Differential experiences by gender. Medical Care, 40, 1249–1259. Neufeld, A., Harrison, M. J., Stewart, M. J., Hughes, K. D., & Spitzer, D. (2002). Immigrant women: Making connections to community resources for support in family caregiving. Qualitative Health Research, 12, 751–768. Pavalko, E. K., & Woodbury, S. (2000). Social roles as process: Caregiving careers and women’s health. Journal of Health and Social Behavior, 41, 91–105. Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. The Gerontologist, 45, 90–106. Pinquart, M., & Sorensen, S. (2006). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 61(1), P33–P45. Public Health Agency of Canada. (2009). Tracking health disease and stroke in Canada. Retrieved from http://www.phac-aspc.gc.ca/publicat/2009/cvd-avc/ Saunders, M. M. (2008). Factors associated with caregiver burden in heart failure family caregivers. Western Journal of Nursing Research, 30, 943–959. Saunders, M. M. (2009). Indicators of health-related quality of life in heart failure family caregivers. Journal of Community Health Nursing, 26, 173–182. Sims-Gould, J., & Martin-Matthews, A. (2010). We share the care: Family caregivers’ experiences of their older relative receiving home support services. Health & Social Care in the Community, 18, 415–423. Sinha, M. (2013). Portrait of caregivers, 2012. Ottawa, Canada: Statistics Canada, Social and Aboriginal Statistics Division. Spitzer, D., Neufeld, A., Harrison, M., Hughes, K., & Stewart, M. (2003). Caregiving in transnational context “My wings have been cut: Where can I fly?” Gender & Society, 17, 267–286. Statistics Canada. (2008). Visible minority groups (15), immigrant status and period of immigration (9), age groups (10) and sex (3) for the population of Canada, provinces, territories, census metropolitan areas and census agglomerations, 2006 Census - 20% sample data (Catalogue no. 97-562-XCB2006011). Ottawa, Canada: Author.



19

Statistics Canada. (2012). Deaths and mortality rate, 2000–2009, by selected causes and sex, Canada, provinces and territories (CANSIM Table 102-0552). Ottawa, Canada: Author. Veenstra, G. (2009). Racialized identity and health in Canada: Results from a nationally representative survey. Social Science & Medicine, 69, 538–542. Williams, A., Forbes, D., Mitchell, J., & Corbett, B. (2003). The influence of income on the experience of informal caregiving: Policy implications. Health Care for Women International, 24, 280–291. World Health Organization. (2013). The 10 leading causes of death in the world, 2000 and 2011. Geneva, Switzerland: Author. Retrieved from http://who.int/mediacentre/factsheets/fs310/en/index4.html Zhan, H. J. (2004). Socialization or social structure: Investigating predictors of attitudes toward filial responsibility among Chinese urban youth from one- and multiple-child families. International Journal of Aging and Human Development, 59(2), 105–124.

Family caregiving for husbands with stroke: an occupational perspective on leisure in the stress process.

Developing a culturally tailored stroke prevention walking programme for Korean immigrant seniors: a focus group study.

Barriers to Independent Living for Individuals with Disabilities and Seniors.

Family Caregiver's Perception of Alzheimer's disease and caregiving in Chinese culture.

Caregiving stress and coping: a thematic analysis of Chinese family caregivers of persons with dementia.

Family caregiving for adults with sickle cell disease and extremely high hospital use.

A comparison of Chinese and non-Chinese Canadian patients hospitalized with heart failure.

Responsibility and burden from the perspective of seniors' family caregivers: a qualitative study in Shanghai, China.

The experiences and needs of Chinese-Canadian stroke survivors and family caregivers as they re-integrate into the community.

Cost of informal caregiving for patients with heart failure.

A Novel Missense Mutation of GATA4 in a Chinese Family with Congenital Heart Disease.

Coparenting in immigrant Chinese Canadian families: the role of discrepancies in acculturation and expectations for adolescent assistance.

Familismo and its impact on the family caregiving of Latinos with Alzheimer's disease: a complex narrative.

Distance caregiving a family member with cancer: A review of the literature on distance caregiving and recommendations for future research.

Competence, Compassion, and Care of the Self: Family Caregiving Needs and Concerns in Heart Failure.

A family living with Alzheimer's disease: The communicative challenges.

Psychometric Evaluation of the Caregiving Competence Scale Among Chinese Family Caregivers.

Using a complex adaptive system lens to understand family caregiving experiences navigating the stroke rehabilitation system.

Fall-related injuries among Canadian seniors, 2005-2013: an analysis of the Canadian Community Health Survey.

Recalled attributes of parents with Alzheimer's disease: relevance for caregiving.

Childhood Stroke and Congenital Heart Disease.

Heart disease, cancer, and stroke in Maryland.

Chinese American immigrant parents' emotional expression in the family: Relations with parents' cultural orientations and children's emotion-related regulation.

Living ordinary family life with an allergic child-the mother's perspective.