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Having an Advance Directive (AD) can help to guide medical decision-making. Asian Americans (AA) are less likely than White Americans to complete an AD. This pilot study investigated the feasibility and efficacy of a church-based intervention to increase knowledge and behavior change related to AD among Chinese and Vietnamese Americans. This study utilized a single group pre- and post-intervention design with 174 participants from 4 churches. Domain assessed: demographics; AD-related knowledge, beliefs, attitudes, and intentions; AD completion; and conversations with a healthcare proxy. Data were analyzed using Chi square and multiple logistic regression techniques. We observed significant increases in participants' AD-related knowledge, intentions, and a gain in supportive beliefs and attitudes about AD, resulting in 71.8 % AD completion, and 25.0 % having had a proxy conversation. Providing culturally-tailored intervention and step-by-step guidance can help to achieve significant changes in AD related knowledge and behavior in AA church goers.
J Immigrant Minority Health (2017) 19:381391 DOI 10.1007/s10903-016-0365-7
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Efcacy of a Church-Based, Culturally Tailored Programto Promote Completion of Advance Directives Among Asian Americans
Angela Sun1 Quynh Bui2 Janice Y. Tsoh3 Ginny Gildengorin4
Joanne Chan5 Joyce Cheng1 Ky Lai4 Stephen McPhee4 Tung Nguyen4
Published online: 21 April 2016 Springer Science+Business Media New York 2016
Abstract Having an Advance Directive (AD) can help to guide medical decision-making. Asian Americans (AA) are less likely than White Americans to complete an AD. This pilot study investigated the feasibility and efcacy of a church-based intervention to increase knowledge and behavior change related to AD among Chinese and Vietnamese Americans. This study utilized a single group preand post-intervention design with 174 participants from 4 churches. Domain assessed: demographics; AD-related knowledge, beliefs, attitudes, and intentions; AD completion; and conversations with a healthcare proxy. Data were analyzed using Chi square and multiple logistic regression techniques. We observed signicant increases in participants AD-related knowledge, intentions, and a gain in supportive beliefs and attitudes about AD, resulting in71.8 % AD completion, and 25.0 % having had a proxy conversation. Providing culturally-tailored intervention and
step-by-step guidance can help to achieve signicant changes in AD related knowledge and behavior in AA church goers.
Keywords Advance health care planning Advance
Directives Culturally tailored Church-based Asian
Americans
Background
Asian Americans are the fastest growing U.S. racial group. Almost three-quarters are foreign-born (74 %), with only half speaking English very well (53 %) [1]. Chinese and Vietnamese are two of the largest Asian American groups.
Advance Directives (AD) are legal documents whereby individuals communicate their end-of-life medical care
& Angela Sun [email protected]
Quynh Bui [email protected]
Janice Y. Tsoh [email protected]
Ginny Gildengorin [email protected]
Joanne Chan [email protected]
Joyce Cheng [email protected]
Ky Lai [email protected]
Stephen McPhee [email protected]
Tung Nguyen [email protected]
1 Chinese Community Health Resource Center, 728 PacicAvenue Suite 115, San Francisco, CA 94133, USA
2 Department of Family and Community Medicine, University of California San Francisco School of Medicine,San Francisco, CA, USA
3 Department of Psychiatry, University of California San Francisco School of Medicine, San Francisco, CA, USA
4 Division of General Internal Medicine, University of California San Francisco School of Medicine, San Francisco, CA, USA
5 Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health, Boston, MA, USA
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wishes to family and health professionals in advance [2, 3]. The two major AD types in the U.S. are the Living Will and Health Care Power Attorney [4]. In California, they are combined into one form called the California Health Care Directives [5]. Having an AD can guide medical decision-making to avoid unnecessary suffering and family conicts [6]. Asian Americans are less likely than Whites to complete AD [711]. Chinese Californians have lower rates of AD completion (20 %) than other ethnic groups (2847 %) [12]. To date, there is no published data about AD completion in Vietnamese Americans. Barriers to AD completion include cultural, language and literacy factors, unclear instructions, and limited access to advance care planning information and assistance [6].
Asian Americans are less likely to discuss death and communicate their wishes for end-of-life care [13]. Reasons include fatalism [14], lial piety [15, 16], cultural taboo against discussing death and dying [17], and belief that discussing dying hastens death [15, 18, 19]. Few Asian Americans (1536 %) have health care proxies [13, 20 22], possibly due to preference for family-based decision-making over individual decision-making [23].
In some ethnic groups, churches play a strong role in health promotion [2430]. Promotion of AD completion has been successful in White and African American churches [31, 32]. This study is the rst to examine a church-based, culturally-targeted program to promote AD completion among Asian Americans.
Theoretical Framework
Our intervention was guided by the Theory of Reasoned Action [33] which have been applied effectively in faith-based interventions to promote behavior change [3436] and with cultures that emphasize collectivist decision-making [3739]. Since spiritual and cultural beliefs inuence attitudes about AD, we chose churches to promote discourse among peers about AD acceptability. The acceptance of AD by individuals, family, church members, and religious leaders form a subjective norm. Our intervention aimed to increase participants completion of AD by providing education, creating a positive subjective norm about AD through their endorsement by church leaders, and providing instrumental support to complete the form.
Methods
This pilot study is a single group pre- and post-intervention design involving 174 participants from 4 churches. Participants attended a culturally-tailored educational intervention consisting of two educational sessions. Pre-
intervention, immediate post-intervention, and 3-months post-intervention initiation surveys were conducted to assess changes in AD-related knowledge, beliefs, attitudes, and completion, and communication with a healthcare proxy.
Participants
Church staff from two Chinese Protestant and two Vietnamese Catholic churches recruited participants through announcements and telephone calls. Participant eligibility criteria were self-identication as Chinese or Vietnamese and age 35 years or older. Exclusion criteria were prior AD completion or involvement in this projects formative activities.
Intervention Development and Cultural Tailoring
We conducted nine in-depth in-language individual interviews with church leaders and four focus groups of participating church members. The ndings guided the intervention message content, delivery format, messenger qualications, and recruitment methods. Findings indicated that: (1) materials should be language-concordant; (2) health professionals should deliver messages; (3) sessions should be focused on patient rights to reduce stigma associated with AD, and (4) enough time (four weeks) should be provided between sessions to allow discussion between participants and family members. Chinese and Vietnamese participants shared similar AD-related beliefs and preferences, enabling a standardized intervention.
Intervention Procedures
The intervention consisted of two 2-hour group sessions held at each church four weeks apart. The sessions were conducted in Cantonese or Vietnamese and facilitated by research staff with health education experience. At both sessions, research staff were available to assist participants with AD form completion.
Session 1 consisted of a brief spiritually-based endorsement of AD by a church leader followed by a physician explaining ADs purpose, use, limitations and possible misconceptions. Research staff provided an overview of how to complete an AD form. Participants received a copy of the California Advance Care Directive Form [40] in their preferred language.
Research staff called participants, 2-days prior to Session 2, to remind them about the Session. At Session 2, the same church leader endorsed AD again. Research staff gave step-by-step instructions on completing the AD, helped those with low literacy, checked the forms completeness, and served as signature witnesses. Participants
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received their completed AD form along with two copies for their health care proxy and clinician.
Data Collection
Feasibility of the intervention was assessed by participants attendance at both sessions. Assessments were obtained at three time points (Times 0, 1 and 2). Participants completed a pre-intervention questionnaire before the start of Session 1 (Time 0) and an immediate post-intervention questionnaire at the end of Session 2 (Time 1). Participants who did not attend Session 2 or who had not completed an AD or had a proxy conversation by Session 2 were contacted for a telephone interview at 3 months following Session 1 (Time 2). Participants received $15 for completing each of the pre- and postintervention questionnaires and $5 for the 3-month telephone interview.
Measures
Pre- and post-intervention questionnaires had the same items, except demographic items that were only in the pre-intervention questionnaire. The measures were:
1. Demographics: age, sex, birth country, years in the U.S., English prociency (not at all, somewhat, or well), highest level of education, marital status, number of children, perceived general health (fair/ poor vs. good/very good/excellent), and whether they had ever had a serious or life-threatening illness (yes/ no).
2. AD-related knowledge was assessed by selecting the one correct description, an AD is a legal document that species a persons medical treatment preferences in case of a life-threatening illness (correct), versus an AD only directs a physician to withhold treatment (incorrect), an AD species a persons wishes for nancial matters should he die (incorrect), or dont know/never heard of it (incorrect).
3. AD-related beliefs and attitudes were measured with 18 items using a 4-point Likert scale (from strongly disagree to strongly agree), including 15 items from the Advance Directive Attitude Survey (ADAS) [41], 2 items from the Brief Systems of Belief Inventory (SBI-15) [42], and 1 new item based on our formative research (I think it is against my faith/ religious belief to complete an AD). The items covered 6 areas: spiritual beliefs (3 items); rights after AD completion (1 item); opportunity for treatment choices (3 items); effect on treatment (2 items); illness perception (2 items); and impact on the family (7 items). Items selected (Table 2) were recommended by Chinese and Vietnamese cultural experts. We
examined each item and its association with the study outcomes individually rather than in scales because of the limited data on the validity of the scales in these populations and insufcient sample sizes to evaluate the psychometric properties of the ADAS or SBI-15 subscales.4. Intention to complete AD were assessed by asking participants to indicate, using a 4-point Likert scale (from not at all likely to very likely), the likelihood that they would complete an AD or have a proxy conversation in the next 3 months (Table 2).
5. Completion of an AD was measured as participants reporting whether they had ever completed an AD (yes/no) or a durable power of attorney for health care (yes/no) by 3-month post-intervention initiation (Time2).6. Proxy conversation was measured as participants reporting if they had ever had an in-depth conversation about advance care planning with a designated proxy (yes/no) by Time 2.
Statistical Analysis
Statistical analysis was performed using SAS version 9.3 (SAS Institute, 2012 Cary, NC). The data used for analyses was derived from the 174 participants attending Session 1. Descriptive statistics were computed for all measures, including means, standard deviations and percentages, separately for Chinese and Vietnamese subgroups, and the total sample (Table 1). Given their bimodal distribution, items measuring AD-related knowledge were dichotomized into yes versus no, those measuring beliefs and attitudes were collapsed into agree versus disagree, and those measuring intention, into likely versus unlikely. For measures dened as yes versus no, responses of dont know or missing data were included in the no category for analyses (Table 2).
We performed initial analyses on baseline data to explore the differences in demographic factors between Chinese and Vietnamese subgroups using Chi square tests for categorical variables and t tests for continuous variables; and tested for differences between those who completed one session versus both sessions.
The two primary outcomes (Table 3) were completing an AD (yes versus no) and having an in-depth proxy conversation about AD (yes versus no) by 3 months post-intervention initiation (Time 2). We used generalized linear models with a logit link function and repeated measures across participants while adjusting for correlations among participants within each church site. These models accounted for clustering of participant responses by church using generalized estimating equations (GEE)
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Table 1 Sociodemographic characteristics of participants for ethnic subgroups and total sample
Characteristics Chinese (N = 100) %
Vietnamese (N = 74) %
Total sample (N = 174) %
P valuea
Sex 0.03
Male 28.0 44.6 35.1
Female 72.0 55.4 64.9
Age (years), mean SD 65.0 12.9 62.4 7.5 63.9 11.1 0.13
Marital status \0.01 Married 53.5 86.8 67.1
Single/divorced/separated/ 46.5 13.2 32.9Birthplace
U.S. 2.0 0.0 1.2
China/Taiwan/Hong Kong 89.0 0.0 51.2
Vietnam 8.0 100.0 47.1
Other 1.0 0.0 0.6
Years in U.S., mean SD 23.9 16.1 21.5 8.2 22.9 13.5 0.25
English reading prociency 0.69
Not at all/somewhat 71.7 68.9 70.5
Moderately well/well 28.3 31.1 29.5
Educational attainment 0.04
Elementary school graduate 31.0 14.3 24.1
Some high school 22.0 25.7 23.5
High school graduate 23.0 38.6 29.4
University graduate or higher 24.0 21.4 22.9
Annual household income 0.39
\$10,000 35.0 22.1 29.8 $10,001$25,000 16.0 23.5 19.1
$25,001$50,000 13.0 17.7 14.9
[$50,001 11.0 11.8 11.3 Dont know/refused 25.0 25.0 25.0
Number of children in household, mean SD 2.5 1.7 4.1 2.1 3.1 2.0 \0.01 Self-reported current health status 0.16
Good/very good/excellent 52.5 41.7 48.0
Fair/poor 47.5 58.3 52.1
Ever had serious or life-threatening illness 0.02
Yes 14.1 29.4 20.4
No 85.9 70.6 79.6
a P values for comparison of Chinese versus Vietnamese subsamples using Chi square tests for categorical variables and t tests for continuous variables
in bivariate and multivariate analyses. Using these methods, bivariate analyses were rst performed for each variable to identify which to put into the multivariable models as covariates. The models included a covariate for the number of sessions attended (1 or 2) to account for those who didnt attend both sessions. In addition, the models included preselected a priori covariates measured at baseline that were associated in the literature with AD completion and also found to be relevant from our formative interviews. Other variables attaining a P value B0.25 in the bivariate comparisons with either one of the major outcomes were included in the multivariable
models [43] (Table 3). Odds Ratios (OR) with 95 % Condence Intervals (CI) and P values for the relationship of each independent variable to the two major outcomes were determined. A P value of B0.05 was considered signicant for all statistical tests.
Results
Table 1 shows the baseline characteristics of participants for the entire sample (N = 174) as well as by Chinese (N = 100) and Vietnamese (N = 74) participants. The
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Table 2 Advance Directives-related knowledge, beliefs, attitudes, and intentions on pre-intervention (Time 0) and immediate post-intervention (Time 1) written surveys
Domains and items Written survey prior to the start of Session 1 (Time 0)n/Na (%)
Written survey at the end of Session 2 (Time 1)n/Na (%)
P valueb
Knowledge (Yes = chooses correct description)
Identies what is an Advanced Directive is 50/146 (33.8) 128/146 (86.5) \0.01 Beliefs and attitudes (Agree)
Spiritual beliefs
It is against my faith/religious belief to complete an AdvanceDirective
34/145 (23.0) 18/145 (12.2) \0.01
Ones life and death follows a plan from God 140/147 (94.6) 146/147 (98.7) 0.06
I seek out people in my religious community when I need help 133/145 (89.9) 139/145 (93.9) 0.25
Rights after advance directive completion
You cannot change your mind, once you ll out and sign anAdvance Directive
105/148 (71.0) 74/148 (50.0) \0.01
Opportunity for treatment choices
I have choices about the treatment at the end of my life 138/145 (93.2) 143/145 (96.6) 0.04
My doctor would include my concerns about my treatment at the end of my life
139/145 (93.9) 142/145 (96.0) 0.21
My family would be given choices about the treatment I would receive
133/145 (89.9) 137/145 (92.6) 0.47
Effect of an Advance Directive on treatment
My family or friends will make treatment decisions for me 133/146 (89.9) 143/146 (96.6) 0.03
Having an Advance Directive would make sure that I get the treatment at the end of my life that I do want
137/142 (92.6) 142/145 (98.0) 0.26
Illness perception
I am not sick enough to have an Advance Directive 52/144 (35.1) 35/144 (23.7) 0.01
It is better to make an Advance Directive when I am healthy 127/145 (85.8) 138/145 (93.2) 0.06
Impact of Advance Directive on the family
Having an Advance Directive would help to prevent guilt in my family
111/141 (75.0) 128/141 (86.5) 0.03
My family would want me to have an Advance Directive 132/144 (89.2) 141/144 (95.3) 0.07
Having an Advance Directive would prevent costly medical expenses for my family
119/143 (80.4) 131/143 (88.5) 0.08
Having an Advance Directive would make sure that my family knows my treatment wishes
137/144 (92.6) 145/147 (98.6) 0.10
Having an Advance Directive would keep my family from disagreeing
137/146 (92.6) 142/146 (96.0) 0.25
Having an Advance Directive would make my family feel left out of caring for me
34/140 (23.0) 28/140 (18.9) 0.34
Having an Advance Directive would have no impact on my family
118/143 (79.7) 117/143 (79.1) 0.64
Intentions
In the next three months, how likely are you to
Complete an Advance Directive? 100/136 (67.6) 116/136 (78.4) \0.01 Have a detailed conversation about your health care wisheswith your proxy?
104/146 (70.3) 125/146 (84.5) \0.01
a N = Total number of respondents to each item on both pre- and post-intervention surveys; n = Respondents answering afrmatively (Yes [Correct Description], Agreed, or Likely); % = Percent of respondents answering afrmatively
b P values adjusted for site differences
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Table 3 Multivariate logistic regression model: predictors of Advance Directive completions and of proxy conversations at 3 months post-intervention
Variables Outcomes
Completed an Advance Directive between start of Session 1 (Time 0) to 3 months after Session 1 (Time 2)a(N = 174)
Odds ratio (95 % CI)
P value Had a proxy conversation between start of Session 1 (Time 0) to3 months after Session 1 (Time 2)b (N = 160)
Odds ratio (95 % CI)
P value
Demographics
EthnicityChinese 0.92 (0.39, 2.12) 0.84 1.65 (1.14, 2.40) 0.01
Vietnamese (ref.)
Age (years) 1.01 (0.97, 1.05) 0.67 1.00 (0.98, 1.02) 0.97
Sex
Male 1.02 (0.78, 3.88) 0.178 1.85 (0.56, 6.10) 0.32
Female (ref.)
Marital status
Married 1.24 (0.70, 2.22) 0.46 1.77 (1.25, 2.49) \0.01 Others (ref.)
Years living in U.S. 1.02 (1.01, 1.03) \0.01 1.02 (0.98, 1.05) 0.31 English prociency 2.25 (1.62, 3.12) \0.01 1.53 (0.69, 3.41) 0.30
Well
Somewhat/not at all (ref.)
Perceived general health 0.73 (0.44, 1.23) 0.24 1.03 (0.56, 1.91) 0.92
Excellent/good
Fair/poor (ref.)
Ever had serious illness
Yes 0.59 (0.19, 1.84) 0.37 1.64 (0.94, 2.87) 0.08
No (ref.)
Knowledge
Able to select correct description of an Advance Directive
Correct
Incorrect (ref.)
1.48 (0.65, 3.37) 0.34 0.65 (0.34, 1.24) 0.20
Incorrect (ref.)
Beliefs
I seek out people in my religious or spiritual community when I need helpd
0.91 (0.69, 1.20) 0.51 1.17 (0.54, 2.56) 0.69
Ones life and death follows a plan from Godd
0.71 (0.47, 1.09) 0.12 0.82 (0.30, 2.26) 0.70
I think it is against my faith/religious belief to complete an Advance Directivec
1.06 (0.55, 2.02) 0.86 1.80 (0.84, 3.88) 0.13
Agree
Disagree (ref.)
Attitudes
If I could not make decisions, my family would be given choices about the treatment I would received
1.53 (1.27, 1.85) \0.01 0.66 (0.37, 1.17) 0.16
I think my family would want me to have an Advance Directived
3.55 (1.60, 7.87) \0.01 15.03 (5.55, 40.73) \0.01
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Table 3 continued
Variables Outcomes
Completed an Advance Directive between start of Session 1 (Time 0) to 3 months after Session 1 (Time 2)a(N = 174)
Odds ratio (95 % CI)
P value Had a proxy conversation between start of Session 1 (Time 0) to3 months after Session 1 (Time 2)b (N = 160)
Odds ratio (95 % CI)
P value
An Advance Directive would keep my family from disagreeing over what to dod
1.58 (0.67, 3.73) 0.30 0.44 (0.34, 0.58) \0.01
Intentions
Likely to complete an Advance Directive in the next 3 months
Likely 2.63 (0.82, 8.42) 0.10 1.59 (1.17, 2.17) \0.01 Not likely (ref.)
a Model includes only participants who did not report having an Advanced Directive at baseline (Time 0)
b Model includes only participants who did not report an in-depth conversation with a proxy at baseline (Time 0)
c Item was inversely scored ranging from strongly disagree to strongly agree
d Item was used as a 4-point Likert scale ranging from 0 (strong agree) to 3 (strongly disagree)
mean age was 64 years (range 3695, SD = 11.1) and64.9 % were female. Two-thirds (67 %) were married. Most (99 %) were immigrants and 75 % had lived in the U.S. for at least 15 years (mean 22.9). A large proportion(70.5 %) had limited (not at all or somewhat) prociency in reading English. About half had graduated from high school (52.3 %) and had an annual household income under $25,000 (48.9 %). Most (79.6 %) had never had a serious or life-threatening illness.
All 174 participants attended Session 1, and 148 attended Session 2, resulting in a complete intervention attendance rate of 85.1 % (Chinese 77.0 %, Vietnamese95.9 %). No signicant differences were found in the demographic characteristics between those who attended one or both sessions.
Table 2 shows the knowledge, beliefs, attitudes and intentions related to AD before (Time 0) and immediately after the 2 sessions intervention (Time 1) of participants who attended both sessions (N = 148). The proportion of participants who were able to dene an AD correctly signicant increased from 33.8 to 86.5 % (P \ 0.01); there was also a signicant increase in the proportion who had a supportive attitude or belief about AD from 23.0 to 12.2 % inversely scored (P B 0.05). Intention to complete an AD increased from 67.6 to 78.4 % (P \ 0.01) and intention to have a proxy conversation increased from 70.3 to 84.5 %
(P \ 0.01).
Figure 1 shows that by 3 months post-intervention (Time 2), 71.8 % (125 of 174) of participants (71.0 % Chinese and 73.0 % Vietnamese) reported having completed an AD. By Time 2 (Fig. 2), 25.0 % (40 of 160) participants (27.6 % Chinese and 21.2 % Vietnamese) had had a proxy conversation.
Table 3 presents the logistic regression models examining correlations between selected covariates and the two primary outcomes. Baseline variables that correlated with an increased likelihood of AD completion were: having lived in the U.S. longer (OR 1.02; CI 1.01, 1.03), having greater English prociency (OR 2.25; CI 1.62, 3.12), believing an AD could provide family with treatment choices (OR 1.53; CI 1.27, 1.85), and having family support for AD (OR 3.55; CI 1.60, 7.87).
Baseline variables correlated with an increased likelihood of having had a proxy conversation were: being Chinese compared to Vietnamese (OR 1.65; CI 1.14, 2.40), being married (OR 1.77; CI 1.25, 2.49), having an intention to complete an AD (OR 1.59; CI 1.17, 2.17), and having family support to have an AD (OR 15.03; CI 5.55, 40.73). Believing that having an AD would keep the family from disagreeing over end-of-life treatment was associated with a decreased likelihood of having a proxy conversation (OR0.44; CI 0.34, 0.58).
Discussion
Our ndings demonstrated the feasibility and efcacy of a church-based, culturally-targeted, 2-session educational program promoting AD awareness and completion in Chinese and Vietnamese American church attendees. This intervention yielded a high rate of AD completion (72 %), and a substantial increase in proxy conversations (25 %).
The increase in AD completion from this intervention was greater than previous faith-based AD completion programs. Medvene et al. [31] achieved an increase in AD completion of 23 % in 17 of their faith communities. While
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Fig. 1 AD completion
Fig. 2 Proxy conversation
studies among African Americans [32, 44] found that spiritual beliefs facilitated end-of-life decision-making, in our study, spiritual beliefs were not signicantly associated with either AD completions or proxy conversations. Our intervention did result in an 11 % decrease in participants who believed that AD completion was against their religious belief. The intervention did not signicantly change other measures of spiritual beliefs possibly because of a ceiling effect since the vast majority of participants endorsed similar spiritual views at baseline.
In previous studies, perceived higher social support from their religious community was associated with higher odds of AD completion [31, 32, 44]. Other studies suggest that older church attendees look to their churches for social and spiritual support and guidance on end-of-life issues [21, 45, 46]. In our study, help-seeking from their religious community was not changed by the intervention nor was it associated with AD completions or proxy conversations. Our formative ndings showed little variability in attitudes, spiritual beliefs, and social norms [47].
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In our study, limited English prociency and shorter duration of residency in the U.S. were associated with low AD completion rates. This is consistent with similar ndings in studies of other health behaviors such as cancer screening in immigrants [4850]. Cultural taboos related to death and dying may contribute to low AD completion rates in Asian Americans [51, 52]. The high rate of AD completion in our study indicates that culturally-targeted faith-based interventions can lead to signicant changes in behaviors that may be stigmatized in hard to reach populations [5355].
Participants perception of positive family support for having an AD was signicantly associated with both AD completion and proxy conversations. The concept of an AD promotes Western values of independence and autonomy in medical decision-making, which may be in conict with Asian values of collectivism and interdependence [52, 56 59]. In part, low AD completion in Asian American communities may reect perceived conicts between asserting individual autonomy and promoting family concordance in medical decision-making. The perception of family support for AD would ameliorate this potential deterrent. Individuals would be more likely to complete ADs and have proxy conversations if they perceive that doing so minimizes the practical and psychological burden on family members [60]. In our intervention, the 4 weeks between sessions provided opportunities for family discussions and support, perhaps contributing to the interventions success.
Our intervention had a much greater impact on AD completion than on proxy conversations. The belief that having an AD prevents family disagreement over end-of-life treatment was associated with lower odds of having proxy conversations. These ndings suggest that uneasiness may still permeate family discussions of advance care planning. The discrepancy between the higher rate of AD completion and lower rate of proxy conversations may be because participants perceived that an AD substituted for proxy discussions, or that such discussions were more easily conducted with a health care professional than a family member. Since the value of a completed AD is diminished without a proxy discussion, future research should address how to increase proxy discussion, possibly by including family members in the educational activities.
Interventions that provided instrumental support and interpersonal interaction increased AD completion [61, 62] more effectively than interventions that provided only educational materials [61, 63, 64]. Step-by-step AD completion guidance during Session 2 likely contributed to the interventions success by providing hands-on assistance to overcome barriers such as unfamiliarity with forms, literacy, and lack of witnesses for signatures. Providing copies of the AD forms for participants, their proxies and clinicians may also have facilitated proxy conversations.
Limitations
Study limitations included the lack of a control group for the intervention which was beyond the scope of this study. Our knowledge measure for AD did not specify that it was in effect only if participants were unable to communicate medical wishes themselves. However, this was not a primary outcome, and we addressed this key distinction throughout the intervention. Convenience sampling may bias the results because individuals who were more open to AD at baseline were more likely to participate. However, the low rate of baseline AD completion suggests that there is a signicant subset of the Asian American community who has not completed AD but would respond favorably to AD promotion. The sample size did not enable evaluation of the efcacy of each of the interventions component parts. Nevertheless, the ndings from this pilot study should help future studies to examine factors associated with advance care planning in various ethnic communities.
New Contribution to the Literature
To our knowledge, this is the rst study to show that providing culturally-targeted education and step-by-step guidance in supportive church settings is successful in promoting Advance Directive completion and proxy conversations among Chinese and Vietnamese immigrants. Future research should be done to assess this intervention in a controlled trial with Asian Americans in church-based setting, other religious settings, or in secular setting as well as to evaluate the efcacy of specic intervention components.
Acknowledgments Funding support was provided by the National Institutes of Health grant 1R21MD006024 and the Chinese Hospital Health System.
IRB Approval The study was approved by the University of California, San Francisco Institutional Review Board and the Ethical and Independent Review Services of Corte Madera, California.
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