C International Psychogeriatric Association 2013 International Psychogeriatrics (2014), 26:3, 413–424 doi:10.1017/S1041610213002020
Caregivers’ experience of the decision-making process for placing a person with dementia into a nursing home: comparing caregivers from Chinese ethnic minority with those from English-speaking backgrounds ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Lauren Caldwell, Lee-Fay Low and Henry Brodaty Dementia Collaborative Research Centre and Centre for Healthy Brain Research, School of Psychiatry, University of New South Wales, Kensington, Sydney, NSW, Australia
ABSTRACT
Background: The experience of care transitions for people with dementia from ethnic minority groups has been poorly researched. Few studies have examined the decision to put someone on a waiting list for a nursing home and then actually accept a place. Many nursing homes have long waiting lists, but sometimes offers of a place are declined. Our aims were to investigate the decision-making process for placing a person with dementia on a waiting list for a nursing home, why offers of a place are accepted or declined, and the influence of cultural factors, comparing caregivers from Chinese and English-speaking backgrounds. Methods: Semi-structured interviews with 27 caregivers of people with dementia on waiting lists or living in nursing homes (20 Chinese background and seven English-speaking background) were conducted, with thematic analysis of factors affecting caregivers’ decision-making. Results: Caregivers were at different stages of decision-making when they applied for a waiting list – some were ready for placement, others applied “just in case,” and for some there was no waiting time because of an urgent need for placement. Caregivers’ decisions were influenced by their emotions and expectations of nursing homes. The decision-making process was similar for both cultural groups, but Chinese caregivers spoke more about their sense of duty, the need for a Chinese specific facility, and declining a place because of family disagreement. Conclusions: Understanding cultural issues, including stereotypes and concerns about nursing homes, and providing better information about admission processes may help caregivers by allaying their anxiety about nursing home placement. Key words: dementia, nursing homes, residential facilities, cross-cultural, qualitative research, decision-making, waiting list, Chinese
Introduction The transition into nursing homes for people with dementia is complex, with timing of placement being unpredictable. There are over 320,000 Australians living with dementia, including 53% of all nursing home residents (Australian Institute of Health and Welfare, 2012). In Australia, the usage rate for permanent nursing home care is considerably lower among non-English-speaking overseas-born people (17.8 per 1,000 people aged 50 years and over) than
Correspondence should be addressed to: Dr Lee-Fay Low, Dementia Collaborative Research Centre, Level 3 AGSM Building, University of New South Wales, Kensington, Sydney, NSW 2052, Australia. Phone: +9385-2585; Fax: +93852200. Email: [email protected]. Received 17 Jun 2013; revision requested 10 Jul 2013; revised version received 15 Sep 2013; accepted 16 Oct 2013. First published online 22 November 2013.
Australian-born people (26.2 per 1,000 people aged 50 years and over) (Australian Institute of Health and Welfare, 2011). About 14% of Australians with dementia speak a language other than English at home (Access Economics, 2009). The decision to place a person with dementia into a nursing home is difficult for caregivers (Chene, 2006). Various theoretical models have been proposed which describe the decision as a process involving several stages. Ducharme and colleagues (2012) proposed that the process begins when a caregiver or healthcare professional introduces the idea of placement, then the caregiver evaluates the situation weighing the pros and cons of placement, which finally leads to either a cessation of the decision-making process (which may later be reactivated) or a decision for placement. Chang and Schneider’s (2010) study of Taiwanese caregivers described the process as a painful experience for
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L. Caldwell et al.
caregivers who often vacillated between whether or not to place their relative in a nursing home, proposing a theory bearing similarity to a study in the United States describing four stages from moving toward the decision to remaining involved post-placement (Butcher et al., 2001). Factors that relate to both patients and caregivers can delay or predict institutionalization of people with dementia (Yaffe et al., 2002; Schoenmekers et al., 2009). One such factor is ethnicity. A metaanalysis of quantitative studies demonstrated that people from minority ethnic groups with dementia in the United States were 40% less likely to be institutionalized, but a UK study, the only nonAmerican study included in the meta-analysis, showed no difference between cultural groups (Cooper et al., 2010). Another meta-analysis looking at differences in American ethnic minority family caregivers found that these caregivers provided more care and had stronger beliefs of filial obligation than Anglo-American caregivers. Asian-American caregivers used less formal support, and were more depressed (Pinquart and Sörensen, 2005). A Taiwanese study of the decision-making process identified particular issues of family conflict and filial piety for Chinese families (Chang and Schneider, 2010). Chinese caregivers are often reluctant to place relatives in a nursing home. In Taiwan there is a distrust of nursing home care quality and disappointment post-placement (Chang et al., 2011). Most family caregivers of people with dementia in Singapore and Taiwan prefer to continue caregiving at home, but dementia-related mental and behavioral problems, lack of family or a domestic maid available to provide care at home, and fewer perceived benefits to the caregiver were associated with preferring nursing home placement (Chiu et al., 2001; Tew et al., 2010). Chinese background caregivers living in another culture describe a similar attitude about nursing home placement for dementia to those living in Asia. Chinese Australian caregivers preferred community-based services to nursing homes (Low et al., 2011). Chinese Canadian caregivers who had made applications to nursing homes accepted caregiving as a cultural obligation and only half were ready to institutionalize when the place became available (Ho et al., 2003). Few studies have looked at the experiences of caregivers of people with dementia on the waiting list for nursing homes, reasons why caregivers apply for a waiting list, or why places are accepted or declined. Although some quantitative comparisons of ethnic minority and majority caregivers exist, no qualitative studies exist that directly compare the subjective experience of ethnic minority and majority caregivers in this decision-making process,
which would provide a deeper understanding of this complex issue. This study is the first qualitative study to directly compare the subjective experience of ethnic minority and majority caregivers in the decisionmaking process for nursing home placement of people with dementia. We chose to focus on people from a Chinese background, as China is the largest non-English-speaking overseas country of birth for Australians (1.7% of the Australian population) (Australian Bureau of Statistics, 2011). We aimed to investigate (1) the decision-making process for placing a person with dementia on a waiting list for a nursing home; (2) why offers of a place in a nursing home are accepted or declined; (3) the influence of cultural factors in this decision, in people living in Australia from a Chinese background compared with those from an English-speaking background (ESB).
Methods A qualitative approach was used to provide a rich description of the decision-making process, and data were obtained from semi-structured interviews with 27 caregivers of family members with dementia. Sample Chinese background participants were recruited through three Chinese ethno-specific nursing homes, and ESB participants were recruited through four mainstream facilities in corresponding geographic areas of Sydney, Australia. We asked nursing homes to post information about the study and a consent form to all eligible caregivers and to phone or personally approach caregivers where possible. The response rate was 50% (20/40) for Chinese caregivers, and 10% (7/70) for ESB caregivers. Inclusion criteria were based on caregiver characteristics as the study focuses on the decision-making process of the caregiver, with main language spoken used as a proxy for culture. Criteria were that the caregiver had to be from a Chinese- or English-speaking background and caring for a person with dementia who was either living in a nursing home or on a nursing home waiting or enquiries list. Chinese background caregivers included people from China, Hong Kong, Malaysia, and Singapore. Caregivers from non-English speaking backgrounds other than Chinese were excluded. Data collection Interviews with caregivers were conducted face to face by the researcher (Lauren Caldwell), with three participants interviewed with the assistance of a Chinese interpreter. Ethics approval was obtained
Deciding about nursing home placement
415
Table 1. Description of caregivers by ethnicity (n = 27) CHINESE
ENGLISH-SPEAKING BACKGROUND (ESB)
p- V A L U E
TOTAL
............................................................................................................................................................................................................................................................................................................................
Participants Variable: mean ± SD (range) Age Years in Australia Months in facility (post-placement group) Variable (n) Female Pre-placement (on waiting list) Employed Living with person with dementia Care provided for Parent/parent-in-law Both parents Spouse Uncle/aunt Care level of person with dementia High care Low care One parent high, one low Unknown
20 55 ± 9 (33–72) 28 ± 13 (5–58) 10 ± 10 (1–30)
7
27
65 ± 16 (37–86) 65 ± 16 (37–86) 17 ± 25 (2–66)
58 ± 12 (33–86) 37 ± 21 (5–86) 12 ± 16 (1–66)
t-statisticsa –1.617 –5.570 –0.576
0.146
Caregivers’ experience of the decision-making process for placing a person with dementia into a nursing home: comparing caregivers from Chinese ethnic minority with those from English-speaking backgrounds ...........................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................................
Lauren Caldwell, Lee-Fay Low and Henry Brodaty Dementia Collaborative Research Centre and Centre for Healthy Brain Research, School of Psychiatry, University of New South Wales, Kensington, Sydney, NSW, Australia
ABSTRACT
Background: The experience of care transitions for people with dementia from ethnic minority groups has been poorly researched. Few studies have examined the decision to put someone on a waiting list for a nursing home and then actually accept a place. Many nursing homes have long waiting lists, but sometimes offers of a place are declined. Our aims were to investigate the decision-making process for placing a person with dementia on a waiting list for a nursing home, why offers of a place are accepted or declined, and the influence of cultural factors, comparing caregivers from Chinese and English-speaking backgrounds. Methods: Semi-structured interviews with 27 caregivers of people with dementia on waiting lists or living in nursing homes (20 Chinese background and seven English-speaking background) were conducted, with thematic analysis of factors affecting caregivers’ decision-making. Results: Caregivers were at different stages of decision-making when they applied for a waiting list – some were ready for placement, others applied “just in case,” and for some there was no waiting time because of an urgent need for placement. Caregivers’ decisions were influenced by their emotions and expectations of nursing homes. The decision-making process was similar for both cultural groups, but Chinese caregivers spoke more about their sense of duty, the need for a Chinese specific facility, and declining a place because of family disagreement. Conclusions: Understanding cultural issues, including stereotypes and concerns about nursing homes, and providing better information about admission processes may help caregivers by allaying their anxiety about nursing home placement. Key words: dementia, nursing homes, residential facilities, cross-cultural, qualitative research, decision-making, waiting list, Chinese
Introduction The transition into nursing homes for people with dementia is complex, with timing of placement being unpredictable. There are over 320,000 Australians living with dementia, including 53% of all nursing home residents (Australian Institute of Health and Welfare, 2012). In Australia, the usage rate for permanent nursing home care is considerably lower among non-English-speaking overseas-born people (17.8 per 1,000 people aged 50 years and over) than
Correspondence should be addressed to: Dr Lee-Fay Low, Dementia Collaborative Research Centre, Level 3 AGSM Building, University of New South Wales, Kensington, Sydney, NSW 2052, Australia. Phone: +9385-2585; Fax: +93852200. Email: [email protected]. Received 17 Jun 2013; revision requested 10 Jul 2013; revised version received 15 Sep 2013; accepted 16 Oct 2013. First published online 22 November 2013.
Australian-born people (26.2 per 1,000 people aged 50 years and over) (Australian Institute of Health and Welfare, 2011). About 14% of Australians with dementia speak a language other than English at home (Access Economics, 2009). The decision to place a person with dementia into a nursing home is difficult for caregivers (Chene, 2006). Various theoretical models have been proposed which describe the decision as a process involving several stages. Ducharme and colleagues (2012) proposed that the process begins when a caregiver or healthcare professional introduces the idea of placement, then the caregiver evaluates the situation weighing the pros and cons of placement, which finally leads to either a cessation of the decision-making process (which may later be reactivated) or a decision for placement. Chang and Schneider’s (2010) study of Taiwanese caregivers described the process as a painful experience for
414
L. Caldwell et al.
caregivers who often vacillated between whether or not to place their relative in a nursing home, proposing a theory bearing similarity to a study in the United States describing four stages from moving toward the decision to remaining involved post-placement (Butcher et al., 2001). Factors that relate to both patients and caregivers can delay or predict institutionalization of people with dementia (Yaffe et al., 2002; Schoenmekers et al., 2009). One such factor is ethnicity. A metaanalysis of quantitative studies demonstrated that people from minority ethnic groups with dementia in the United States were 40% less likely to be institutionalized, but a UK study, the only nonAmerican study included in the meta-analysis, showed no difference between cultural groups (Cooper et al., 2010). Another meta-analysis looking at differences in American ethnic minority family caregivers found that these caregivers provided more care and had stronger beliefs of filial obligation than Anglo-American caregivers. Asian-American caregivers used less formal support, and were more depressed (Pinquart and Sörensen, 2005). A Taiwanese study of the decision-making process identified particular issues of family conflict and filial piety for Chinese families (Chang and Schneider, 2010). Chinese caregivers are often reluctant to place relatives in a nursing home. In Taiwan there is a distrust of nursing home care quality and disappointment post-placement (Chang et al., 2011). Most family caregivers of people with dementia in Singapore and Taiwan prefer to continue caregiving at home, but dementia-related mental and behavioral problems, lack of family or a domestic maid available to provide care at home, and fewer perceived benefits to the caregiver were associated with preferring nursing home placement (Chiu et al., 2001; Tew et al., 2010). Chinese background caregivers living in another culture describe a similar attitude about nursing home placement for dementia to those living in Asia. Chinese Australian caregivers preferred community-based services to nursing homes (Low et al., 2011). Chinese Canadian caregivers who had made applications to nursing homes accepted caregiving as a cultural obligation and only half were ready to institutionalize when the place became available (Ho et al., 2003). Few studies have looked at the experiences of caregivers of people with dementia on the waiting list for nursing homes, reasons why caregivers apply for a waiting list, or why places are accepted or declined. Although some quantitative comparisons of ethnic minority and majority caregivers exist, no qualitative studies exist that directly compare the subjective experience of ethnic minority and majority caregivers in this decision-making process,
which would provide a deeper understanding of this complex issue. This study is the first qualitative study to directly compare the subjective experience of ethnic minority and majority caregivers in the decisionmaking process for nursing home placement of people with dementia. We chose to focus on people from a Chinese background, as China is the largest non-English-speaking overseas country of birth for Australians (1.7% of the Australian population) (Australian Bureau of Statistics, 2011). We aimed to investigate (1) the decision-making process for placing a person with dementia on a waiting list for a nursing home; (2) why offers of a place in a nursing home are accepted or declined; (3) the influence of cultural factors in this decision, in people living in Australia from a Chinese background compared with those from an English-speaking background (ESB).
Methods A qualitative approach was used to provide a rich description of the decision-making process, and data were obtained from semi-structured interviews with 27 caregivers of family members with dementia. Sample Chinese background participants were recruited through three Chinese ethno-specific nursing homes, and ESB participants were recruited through four mainstream facilities in corresponding geographic areas of Sydney, Australia. We asked nursing homes to post information about the study and a consent form to all eligible caregivers and to phone or personally approach caregivers where possible. The response rate was 50% (20/40) for Chinese caregivers, and 10% (7/70) for ESB caregivers. Inclusion criteria were based on caregiver characteristics as the study focuses on the decision-making process of the caregiver, with main language spoken used as a proxy for culture. Criteria were that the caregiver had to be from a Chinese- or English-speaking background and caring for a person with dementia who was either living in a nursing home or on a nursing home waiting or enquiries list. Chinese background caregivers included people from China, Hong Kong, Malaysia, and Singapore. Caregivers from non-English speaking backgrounds other than Chinese were excluded. Data collection Interviews with caregivers were conducted face to face by the researcher (Lauren Caldwell), with three participants interviewed with the assistance of a Chinese interpreter. Ethics approval was obtained
Deciding about nursing home placement
415
Table 1. Description of caregivers by ethnicity (n = 27) CHINESE
ENGLISH-SPEAKING BACKGROUND (ESB)
p- V A L U E
TOTAL
............................................................................................................................................................................................................................................................................................................................
Participants Variable: mean ± SD (range) Age Years in Australia Months in facility (post-placement group) Variable (n) Female Pre-placement (on waiting list) Employed Living with person with dementia Care provided for Parent/parent-in-law Both parents Spouse Uncle/aunt Care level of person with dementia High care Low care One parent high, one low Unknown
20 55 ± 9 (33–72) 28 ± 13 (5–58) 10 ± 10 (1–30)
7
27
65 ± 16 (37–86) 65 ± 16 (37–86) 17 ± 25 (2–66)
58 ± 12 (33–86) 37 ± 21 (5–86) 12 ± 16 (1–66)
t-statisticsa –1.617 –5.570 –0.576
0.146
