The Intention to Discuss Advance Care Planning in the Context of Alzheimer’s Disease Among Korean Americans

The Intention to Discuss Advance Care Planning in the Context of Alzheimer’s Disease Among... Abstract Background and Objectives Advance care planning (ACP) is crucial for quality end-of-life care for patients with Alzheimer’s disease. However, limited evidence is available about ACP among ethnic minorities, particularly in the context of Alzheimer’s disease. The purpose of this study was to examine intention to discuss ACP for a family member with Alzheimer’s disease among Korean Americans. Guided by the theory of planned behavior and prior research, we examined the relationships between acculturation, attitudes, subjective norms, perceived control, and intention to discuss ACP for a family member with Alzheimer’s disease. Research Design and Methods Path analyses were conducted on a cross-sectional convenience sample of 261 Korean Americans. Age, gender, education, and knowledge about Alzheimer’s disease and ACP were included as covariates. Results Our descriptive findings showed positive attitudes, strong subjective norms, and a high level of perceived control toward ACP discussion among the participants. The path analyses revealed that attitudes and subjective norms were positively related to intention for ACP discussion. Perceived control was not related to intention for ACP discussion. Among the covariates, greater knowledge about Alzheimer’s disease was the only factor shown to be associated with the intention for ACP discussion. Discussion and Implications To promote ACP among this population, educational interventions designed to address positives attitudes and subjective norms toward ACP are suggested. Advance care planning, Alzheimer’s disease, End-of-life, Ethnic minorities, Korean Americans, Theory of planned behavior Advance care planning (ACP) involves discussions and decisions about health care in the event that an individual is incapable of making a reasoned decision (Dening, Jones, & Sampson, 2011). The Patient Self-Determination Act (PSDA, 1990) provided a legal foundation to promote ACP in the United States. The PSDA requires federally funded hospitals and nursing homes to provide patients with an opportunity to complete an advance directive in which individuals articulate their preferences for end-of-life treatment (living will) and designate a durable power of attorney for health care ahead of time. Existing evidence indicates that ACP contributes to quality end-of-life care for dying individuals. A systematic review of 133 studies found that engagement in ACP positively influenced the quality of end-of-life care by increasing use of palliative and hospice care and decreasing life-sustaining treatments (Brinkman-Stoppelenburg, Rietiens, & van der Heide, 2014). Patients’ autonomy is also respected by honoring their treatment preferences at the end of life expressed in ACP (Sudore, Schillinger, Knight, & Fried, 2010). ACP is particularly pertinent in the context of Alzheimer’s disease care. The prevalence of Alzheimer’s disease is expected to grow from an estimated 5.5 million Americans aged 65 years or older in 2016 to 13.8 million by 2050 (Alzheimer’s Association, 2017). As individuals with Alzheimer’s disease experience cognitive declines, they are less likely to be able to communicate about their preference for health care, especially in the later stages of the illness (Nicholas, Bynum, Weir, Iwashyna, & Langa, 2014). As such, it is important to discuss ACP in an early stage of the disease, and family members along with health care providers can play a vital role in engaging in such conversations with people with Alzheimer’s disease (Dening et al., 2011). A systematic review of 33 studies underscores the important role of family members in ACP and identified family’s initiation as a dominant factor for engagement in ACP among patients with dementia (van der Steen et al., 2014). Early engagement in ACP in dementia care can also benefit family caregivers by relieving decision-making burdens in the middle of a crisis or grief (Fried, Bullock, Iannone, & O’Leary, 2009; Ko & Berkman, 2012) and helping them avoid any potential conflicts among family members. Despite the identified benefits of ACP for individuals with Alzheimer’s disease for the future when they are unable to communicate, previous research pointed out low levels of engagement in ACP among ethnic minorities (Dobbs, Park, Jang, & Meng, 2015), suggesting ethnic or racial disparities in end-of-life care. A study with a nationally representative sample of adults aged 18 years or older reported that around 34% of White respondents had advance directives compared to only 18% of ethnic minorities, including Blacks, Latinos, and others (Rao, Anderson, Lin, & Laux, 2014). Another recent study with community-dwelling Medicare beneficiaries aged 65 years or older found far less engagement in end-of-life discussions among ethnic minority groups (39.8%) compared to Whites (65.6%; Harrison, Adrion, Ritchie, Sudore, & Smith, 2016). The low prevalence of ACP among ethnic minorities presents a concern for the quality of end-of-life care for these populations, in particular those with Alzheimer’s disease. However, to our knowledge, there has been no study examining ACP intention among Asian Americans in the context of Alzheimer’s disease or dementia. This study aimed to address this gap in the existing body of knowledge. Specifically, given the important role of family members in end-of-life decisions for individuals with Alzheimer’s disease (Arcand, 2015; van der Steen et al., 2014), this study examined Korean Americans’ (KAs) intention to discuss ACP with family members in a situation where someone in the family is diagnosed with Alzheimer’s disease. ACP Among Korean Americans KAs are the fastest growing racial/ethnic group in the United States (López, Ruiz, & Patten, 2017) as the fifth-largest Asian American subgroup, with an estimated population of 1.6 million in 2010 (U.S. Census Bureau, 2010). A recent study indicated that KAs had limited knowledge of and low engagement in ACP compared to other ethnic minorities; only 20% were aware of advance directives, and 18% reported completing their advance directives (Dobbs et al., 2015). A qualitative study of KA older adults found that most participants mistook advance directives for wills for asset disposal upon death (Kwak & Salmon, 2007). Another qualitative study documented that none of the KA study participants engaged in ACP (Ko & Berkman, 2012). Ko and Lee (2009) also found a significant difference in the prevalence of engagement in end-of-life communication between KA (39.3%) and non-Hispanic White older adults (64.8%). Albeit limited, a handful of research studies with KAs identified potential factors that affect ACP engagement. For example, studies found that KAs who were more acculturated and had greater knowledge about advance directives were more likely to engage in ACP (Dobbs et al., 2015) and that knowledge about ACP was the strongest predictor of end-of-life communication among both non-Hispanic Whites and KAs (Ko & Lee, 2009). Another study reported that higher educational levels and greater acculturation were associated with positive attitudes toward ACP among KAs (Kim & Foreman, 2011). Furthermore, Alzheimer’s disease research with KAs documented limited knowledge and misconceptions about Alzheimer’s disease (Casado, Lee, Hong, & Hong, 2015; Lee, Lee, & Diwan, 2010), raising a concern about delayed diagnosis of Alzheimer’s disease and professional care seeking among KAs. Given the low levels of prevalence and awareness of ACP among KAs, such limited knowledge and misconceptions about Alzheimer’s disease could increase barriers for ACP engagement in the context of Alzheimer’s disease among this population. The theory of planned behavior (TPB; Ajzen, 1991) provided a conceptual framework for the current study. According to the TPB, a human behavior is guided by three determinants: attitudes, subjective norms, and perceived behavioral control. Attitudes toward a certain behavior represent positive or negative evaluations of the behavior and are considered to be an essential component in the TPB. Subjective norms involve personal perceptions about the social expectation to perform a certain behavior, whereas perceived control refers to one’s subjective assessment of resources and challenges in adopting a behavior (Ajzen, 1991). Given that ACP is a complex process that reflects cultural values and beliefs (Kwak & Salmon, 2007), the TPB can provide a useful framework for the present study by considering variables that can reflect cultural contexts of ACP. For example, in traditional Korean culture, discussions about death and dying are avoided, and family-centered decision making is preferred (Ko & Berkman, 2012; Kwak & Salmon, 2007). In addition, KAs are known for strong adherence to traditional cultural norms (Kim & Foreman, 2011). The three determinants of the TPB (attitudes, subjective norms, and perceived control) can capture such unique cultural values and norms connected with ACP and their influences on engagement in ACP. Two descriptive studies used the TPB as a conceptual framework to examine attitudes toward ACP among older Latino adults (Heyman & Gutheil, 2010) and Asian Americans and Native Hawaiians (Kataoka-Yahiro, Conde, Wong, Page, & Peller, 2010), demonstrating its applicability in explaining ACP engagement among ethnic minority groups. Study Purpose and Hypotheses Despite a growing concern about low engagement in ACP among ethnic minorities (Dobbs et al., 2015), the existing literature offers limited knowledge regarding ACP among this group. In particular, ACP in the Alzheimer’s disease context among Asian Americans has been largely absent in the literature. Therefore, based upon the TPB model, the purpose of the present study was to examine KAs’ intention to discussion ACP with family members when someone in the family is diagnosed with Alzheimer’s disease. Informed by the aforementioned previous research, we added acculturation as an exogenous variable that could influence other variables in the TPB model. Specifically, we hypothesized that (a) higher acculturation is associated with greater intention to discuss ACP through greater levels of subjective norms, positive attitudes, and perceived control toward ACP discussion; and (b) greater levels of subjective norms, positive attitudes, and perceived control toward ACP discussion are associated with greater intention to discuss ACP. Sociodemographic variables (e.g., age, gender, education, and marital status) and knowledge about Alzheimer’s disease and ACP were included as covariates in our path analyses. Figure 1 presents the conceptual model of the study. Figure 1. View largeDownload slide Conceptual model for intention to discuss advance care planning (ACP) for a family with Alzheimer’s disease. Figure 1. View largeDownload slide Conceptual model for intention to discuss advance care planning (ACP) for a family with Alzheimer’s disease. Methods Procedures and Sample Data were drawn from a cross-sectional community survey conducted as part of a community participatory research project in the Washington, D.C., metropolitan area in 2014. Through a partnership with a local community agency serving KAs, the research project was developed to examine perspectives toward and care seeking for Alzheimer’s disease among KAs. The community partner agency was involved in the research project from the development and translation of the survey materials to the recruitment of study participants and collection of survey data. Inclusion criteria of the study participants were as follows: (a) 40 years of age or older and (b) self-identified KAs. Study participants were recruited using convenience sampling. Two bilingual KAs with a higher education degree recruited by the community partner agency and trained by the principal investigator of the project advertised and recruited study participants in various locations including community event sites, business sites, churches, and community centers. A total of 268 participants were recruited, and 266 completed the survey. The survey materials were developed in English first and translated into Korean using Brislin’s (1970) back-translation method. All participants chose to complete their survey in Korean. The two trained bilingual surveyors collected data using self-administered surveys (n = 248) and face-to-face interviews (n = 18), depending on participants’ preference. An independent samples t test was conducted to examine differences in intention to discuss ACP by data collection methods, and no difference was found (t [16.695] = −.859, p = .402). The survey study was approved by a university’s institutional review board. Measures The four major variables of the present study (intention, attitudes, subjective norms, and perceived control toward ACP discussion) were measured using a modified version of the Theory of Planned Behavior Questionnaire (TPBQ; Mo & Mak, 2009). The TPBQ was originally developed to examine help-seeking behaviors for mental health problems among Chinese populations in Hong Kong and includes four of the following subscales: intention, attitudes, subjective norms, and perceived control toward mental health service seeking. We developed the modified version of the TPBQ by framing questions in the context of Alzheimer’s disease and substituting “mental health service” in the original TPBQ with “advance care planning.” Intention to Discuss ACP The outcome variable of the present study was intention to discuss ACP for a family member with Alzheimer’s disease. A modified three-item version of the intention subscale of the TPBQ was used to assess intention for ACP discussion. The three items asked respondents to rate on a five-point Likert scale (1 = strongly disagree to 5 = strongly agree) the extent to which a respondent would intend, try, or plan to discuss ACP with family members if someone in the family were diagnosed with Alzheimer’s disease. The mean of item scores was used, with a higher score indicating a greater intention for ACP discussion. The internal consistency reliability of this measure was α = .96 in this sample. Attitudes Toward ACP Discussion A modified six-item version of the attitude subscale of the TPBQ was used to assess attitudes toward ACP discussion. The six items asked respondents to select where their attitudes toward ACP discussion with family members would lie on a 10-point semantic differential scale (worthless/worthwhile, bad/good, useless/useful, foolish/wise, rare/common, and shameful/honorable) if someone in the family were diagnosed with Alzheimer’s disease. The mean of item scores was used in the analyses, with a higher score indicating a more positive attitude. The internal consistency reliability of this measure was α = .95 in this sample. Subjective Norms Toward ACP Discussion A modified two-item version of the subjective norms subscale of the TPBQ was used to measure subjective norms toward ACP discussion. The modified version of the subjective norms subscale originally included three items. However, one item that asked participants about their perceptions of others’ negative perspectives about ACP discussion was dropped due to its unacceptably low item-total correlation (.081; Nunnally & Bernstein, 1994). As a result, we included only two items that asked for respondents’ perceptions about what important others would do and expect them to do regarding ACP discussion with family members when someone in the family is diagnosed with Alzheimer’s disease. Each response was rated on a four-point Likert scale (1 = strongly disagree to 4 = strongly agree). The mean of the item scores was used in the analyses, with a higher score indicating a stronger level of subjective norms toward ACP discussion. The internal consistency reliability of this measure was α = .76 in this sample. Perceived Control Toward ACP Discussion A modified three-item version of the perceived control subscale of the TPBQ was used to assess perceived control toward ACP discussion. These three items asked about the levels of agreement regarding perceived ability to discuss ACP with family members using a four-point Likert scale (1 = strongly disagree to 4 = strongly agree). The mean of item scores was used in the analyses, with a higher score indicating a greater perceived ability to discuss ACP. The internal consistency reliability of this measure was α = .90 in this sample. Acculturation Eight items drawn from a 20-item Acculturation Scale for Korean immigrants (Moon, 2004) was used to measure cultural orientation. Using a five-point Likert scale, the eight items measured cultural preferences regarding lifestyle, language use, friendship, ways of life, and thinking. Possible scores range from 8 to 40, with a higher score indicating greater cultural orientation toward American culture. The internal consistency reliability of this scale was α = .86 in this sample. Knowledge About ACP A single item that asked how much respondents knew about ACP was used to measure knowledge about ACP. Due to the lack of variations in the original four response options, we dichotomized the responses: The responses “don’t know at all” and “know little” were collapsed into no/little knowledge (coded as “0”), and “know some” and “know very well” were collapsed into some/good knowledge (coded as “1”). Knowledge About Alzheimer’s Disease We used the Alzheimer’s Disease Knowledge Scale (ADKS; Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009) to measure knowledge about Alzheimer’s disease. The ADKS consists of 30 true or false questions about various aspects of Alzheimer’s disease, such as symptoms, diagnosis, course of disease, and management. Possible scores range from 0 (no correct answers) to 30 (all correct answers). Empirical evidence supports the validity and reliability of the ADKS (Carpenter et al., 2009), and the scale also demonstrated acceptable internal consistency reliability, with α = .71 in this sample. Furthermore, demographic characteristics such as age, gender (1 = male), education (1 = college education or higher, 0 = less than college education), and marital status (1 = married, 0 = others) were also included in the analyses as covariates. Data Analysis Descriptive statistics were conducted to summarize the sample characteristics and study variables. In addition, correlation tests were conducted to examine bivariate associations between continuous variables and checked multicollinearity. No multicollinearity was found. Furthermore, prior to testing the hypotheses, Missing Value Analysis (MVA) was performed, and no missing data patterns were found on any variable in the data set. Multiple imputations were used to address missing values for Alzheimer’s knowledge (12.7% missing) and acculturation (5.3% missing) scores to keep statistical power as high as possible given the available sample size. SPSS 23.0 was used for descriptive statistics and correlation tests as well as MVA and computations. In order to examine the hypothesized relationships between variables, we performed path analyses using Mplus 6.0. Path analysis is the appropriate statistical approach to test hypothesized causal relationships between sets of multiple observed variables (Pedhazur, 1982). Multiple fit indices were used to examine goodness of fit between our sample data and the hypothesized path model, including Root Mean Square Error of Approximation (RMSEA) close to or smaller than .05, Comparative Fit Index (CFI) greater than .90, and Tucker–Lewis index (TLI) greater than .90 (Kline, 2005). Given that a sample size of 200 or above is considered large to conduct structural equation modeling (Kline, 2005), our sample size (N = 266) was sufficient for path analysis. Results Descriptive Analysis The average age of study participants was 54.3 years old (SD = 10.9, range = 40–86). The majority of study participants were female (60.9%) and employed (59.3%). Most were married (82.1%) and non-U.S. born (98%), and had completed a high school education or higher (87.6%). Most participants reported that neither they (89.1%) nor their family members (93.2%) had completed advance directives. Despite the low completion rates of advance directives, respondents reported a relatively strong intention for ACP discussion if a family member had Alzheimer’s disease (mean score = 3.25, SD = 0.57, range = 1–4). Slightly less than half of the respondents indicated little or no knowledge about ACP (46.2%). Furthermore, strong beliefs toward all three determinants in the TPB model were found: Respondents held positive attitudes (mean = 9.02, SD = 1.67, range = 1–10) and perceived strong subjective norms toward ACP discussion (mean = 3.26, SD = 0.60, range = 1–4) and reported a great deal of perceived ability to discuss ACP (mean = 3.23, SD = 0.54, range = 1–4). Table 1 presents the demographic characteristics of study participants and study variables. Table 1. Respondents Characteristics and Study Variables Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) View Large Table 1. Respondents Characteristics and Study Variables Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) View Large Correlation analyses (Table 2) showed that the strongest association was between subjective norms and perceived control (r = .636, p < .001), followed by the associations of attitudes with subjective norms (r = .460 p < .001) and perceived control (r = 324, p < .001). Between the predictor variables and the dependent variable (intention for ACP discussion), the strongest association was found between subjective norms and intention for ACP discussion (r = .560, p < .001), followed by the association between attitudes and intention for ACP discussion (r = .501, p < .001). Table 2. Correlation Matrix of Continuous Variables (N = 223) 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 Note: ACP = Advance care planning. *p < .05, **p < .01, ***p < .001. View Large Table 2. Correlation Matrix of Continuous Variables (N = 223) 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 Note: ACP = Advance care planning. *p < .05, **p < .01, ***p < .001. View Large Path Models Guided by the TPB, we tested the hypothesized relationships between acculturation, attitudes, subjective norms, perceived control, and intention for ACP discussion for a family member with Alzheimer’s disease. The initial path model yielded a poor model fit, χ2 (18) = 189.301 (p < .001), CFI = .406, TLI = .010, RMSEA = .207 (95% CI = .181 ~ .232, probability RMSEA ≤ .05 = .000). Acculturation was not associated with any of the three determinants of the TPB or intention for ACP discussion for a family member with Alzheimer’s disease. Attitudes, subjective norms, and knowledge about Alzheimer’s disease were associated with intention for ACP discussion for a family member with Alzheimer’s disease, but no relationship was found between perceived control and intention to discuss ACP for a family member with Alzheimer’s disease. Modification indices revealed correlations between all three determinants of TPB: attitudes with subjective norms (MI = 47.542) and perceived control (MI = 23.946), and subjective norms and perceived control (MI = 89.009). The model was respecified by adding correlations between the three determinants of the TPB reflecting the modification indices and deleting the variable of acculturation. This respecified path model produced an excellent model fit, χ2 (19) = 23.493 (p = .2163), CFI = .984, TLI = .975, RMSEA = .033 (95% CI = 0.000 ~ 0.033, probability RMSEA ≤ .05 = .736). Attitudes (β = .271, p < .001) and subjective norms (β = .412, p < .001) were associated with intention for ACP discussion for a family member with Alzheimer’s disease. However, perceived control was not associated with intention for ACP discussion either directly or indirectly. Among covariates, only knowledge about Alzheimer’s disease (β = .137, p = .010) was associated with intention for ACP discussion for a family member with Alzheimer’s disease. Furthermore, attitudes, subjective norms, and perceived control were associated with each other. Attitudes were associated with subjective norms (β = .461, p < .001) and perceived control (β = .326, p < .001), and subjective norms were also associated with perceived control (β = .631, p < .001; see Figure 2). This respecified path model explained the 43.5% variance in intention for ACP discussion. Table 3 presents the standardized path coefficients of variables and model fits of the respecified path models. Table 3. Respecified Path Model of Intention for ACP Discussion for a Family With Alzheimer’s Disease (N = 261) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) Note: ACP = Advance care planning. View Large Table 3. Respecified Path Model of Intention for ACP Discussion for a Family With Alzheimer’s Disease (N = 261) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) Note: ACP = Advance care planning. View Large Figure 2. View largeDownload slide Respecified path model of intention to discuss advance care planning for a family with Alzheimer’s disease. *p < .05, **p < .01, ***p < .001. Figure 2. View largeDownload slide Respecified path model of intention to discuss advance care planning for a family with Alzheimer’s disease. *p < .05, **p < .01, ***p < .001. Discussion With the increasing number of ethnic minority older adults and the important role of family members in discussing ACP for people with Alzheimer’s disease, there is an urgent need to identify potential factors affecting intention for ACP discussion in the Alzheimer’s disease care situation and to find a way to promote ACP in these groups. Using an augmented TPB model, we tested hypothesized relationships between acculturation, attitudes, subjective norms, perceived control, and intention for ACP discussion among KAs, particularly for a family member diagnosed with Alzheimer’s disease. Our descriptive statistics indicated that about half of the respondents had some familiarity with ACP. Given the lack of knowledge about ACP reported among KAs (Dobbs et al., 2015; Kwak & Salmon, 2007), this finding was encouraging. KAs in our study also had positive attitudes toward ACP discussion. However, completion of advance directives was still low (8.5%), which is consistent with prior research (Dobbs et al., 2015; Ko & Berkman, 2012). Our hypotheses were partially supported. As hypothesized, attitudes and subjective norms were associated with intention for ACP discussion, indicating that the more the participants perceived social expectation toward ACP discussion, the stronger their intention for ACP discussion in the Alzheimer’s disease care situation was. In particular, subjective norms were the strongest determinant of intention for ACP discussion among all variables included in the model. It is notable that early research using the TPB often identified subjective norms as the weakest predictor of the TPB’s three determinants (Armitage & Conner, 2001). Our finding that subjective norms had the strongest effect might reflect the collectivistic culture of KAs. In collectivistic Asian cultures, groups’ goals are prioritized over personal goals and expectations, and approval from the reference group is a critical determinant for engaging in a behavior (Triandis, 1999). Thus, subjective norms, which are personal perceptions about social expectations to perform a certain behavior, can be more salient than any other determinants for intention to discuss ACP among KAs. On the contrary, in individualistic cultures where personal goals are emphasized over group goals and personal gains or losses play a key role in engaging in a behavior (Triandis, 1999), subjective norms may not necessarily lead to behavioral intention, such as intention to discuss ACP. In these cultural contexts, it is not surprising to find that early TPB studies conducted with predominantly White respondents reported a less significant role of subjective norms than the other two determinants in the TPB. Our study also found a positive relationship between attitudes toward ACP discussion and intention for ACP discussion, corroborating prior findings of attitudes and intention for ACP among community-dwelling older adults (Campbell, Edwards, Ward, & Weatherby, 2007). Fried et al. (2009) suggested that improvement in attitudes toward ACP is a precedent step to promote ACP, and the finding of our study supports this suggestion. Refuting our hypothesis, we did not find a significant relationship between perceived control and intention for ACP discussion. This finding can also be understood within the context of collectivistic culture. Family members from collectivistic cultures tend to receive the same level of details about a patient’s diagnosis, prognosis, and treatment options (Braun, Mokuau, & Tsark, 1997) and prefer shared decision making (Kim & Foreman, 2011). As such, family discussions about a family member’s illness may be an assumed factor for health care decisions and thus “behavioral control” operationalized as perceived ability to discuss ACP with family members may not have much influence on KAs’ intention for ACP discussion. However, our findings of the relationship between perceived control, attitudes, and subjective norms indicate that levels of perceived control could be attributed to their attitudes and subjective norms. In Korean culture, there is a reluctance to openly talk about death and dying (Ko & Berkman, 2010), so individuals who hold stronger beliefs about social norms and expectations (i.e., subjective norms) for and positive attitudes toward ACP discussion are likely to feel confident in discussing ACP. We also found that KAs with greater knowledge about Alzheimer’s disease had a greater intention to discuss ACP in the Alzheimer’s disease situation. van der Steen et al. (2014) stated that providing clear information on dementia to family members could enhance engagement in ACP for patients with dementia because it could help them visualize trajectories of the disease. Likewise, KAs with greater knowledge about Alzheimer’s disease are likely to have a better understanding of the disease’s progression and therefore recognize the necessity of ACP, leading to greater intention to discuss ACP for a family member with Alzheimer’s disease. Furthermore, given the misconceptions of and even stigma relating to Alzheimer’s disease among KAs (Casado et al., 2015; Lee et al., 2010), increased knowledge about Alzheimer’s disease could rectify negative perceptions about Alzheimer’s disease and promote intention for ACP discussion, helping their family member with Alzheimer’s disease prepare for the end of life with quality. Finally, hypotheses regarding the relationships of acculturation with the three determinants of ACP and intention for ACP discussion were not supported in our study. Contrary to prior research, which found acculturation to be one of the commonly identified indicators for awareness of and intention for end-of-life care services such as hospice (Jang, Chiriboga, Allen, Kwak, & Haley, 2010) and advance directives (Dobbs et al., 2015; Kim & Foreman, 2011), we found that acculturation was not associated with any of the three determinants of the TPB or intention for ACP discussion. There could be several plausible explanations. Most of all, inclusion of strong predictors of intention for ACP discussion, such as attitudes, subjective norms, and knowledge about Alzheimer’s disease in our model, might have attenuated the influence of acculturation on intention for ACP discussion. With three strong indicators, our TPB model explained 43% of the variance in intention for ACP discussion. Furthermore, the acculturation measurement used in this study assessed behavioral aspects of acculturation, such as friendship, media use, and lifestyle, which might not be able to capture culturally unique beliefs relevant to ACP, resulting in a nonsignificant effect on intention for ACP discussion. Given the fact that ACP is a complicated process reflecting multiple aspects of culture (Ko & Lee, 2009), the general construct of acculturation might be neutralized when attitudes and subjective norms included in the model capture ACP-specific perspectives. Lastly, all surveys were conducted in Korean, and almost all study participants (98%) were born in Korea. Also, the average score of acculturation among the study participants was 16.59 (SD = 5.99) with a range of 8–40. These may indicate a low level of acculturation in our sample, with limited variations in acculturation, leading to the nonsignificant effect of acculturation in our path model. Taken together, it might be presumptuous to refute the influence of acculturation on approaching ACP intention among this population. Limitations of the study should be noted. First, the use of a cross-sectional design and the convenience sampling method limit the study’s ability to draw causal relationships between variables and generalize the findings of the study to the KA population in general. Social desirability bias that has been often found in collectivistic culture (Lalwani, Shavitt, & Johnson, 2006) might have also influenced the responses of our study sample. For example, our findings of a high level of intention for ACP discussion or strong subjective norms toward ACP discussion might have been due to social desirability bias. The measurements used in the study also pose some limitations. We used a single dichotomous item to gauge knowledge about ACP, which may not have tapped into the extent and accuracy of understanding about ACP. The survey also provided a brief description of ACP before asking about ACP, which may have sensitized the study participants and led to reporting of a greater level of knowledge about ACP. Despite these limitations, the present study provides several important implications for practice and research. First, a public campaign about ACP could be beneficial to promote ACP discussion among KAs. In order to effectively motivate KAs to discuss ACP, targeted efforts to promote positive attitudes about ACP discussion may be required. Community outreach programs, for example, could include the legal foundation of advance directives (i.e., PSDA) and the values of ACP to strengthen normative beliefs about ACP. Rather than emphasizing patients’ autonomy or self-determination rooted in the Western culture as core values of ACP, geriatric clinicians and practitioners could talk about how ACP can be in accordance with collectivistic Asian cultural norms by honoring the wishes of family members with Alzheimer’s disease at their end stages of life and reducing potential family burden and conflicts regarding health care decisions (Gao, Sun, Ko, Kwak, & Shen, 2015; Sun et al., 2016). This approach could lead to improved attitudes toward ACP discussion among this population. Our findings about high levels of all three determinants of the TPB regarding intention for ACP discussion (i.e., positive attitudes and high levels of subjective norms and perceived behavioral control) may indicate KAs’ readiness to accept ACP, and thus, community outreach programs that adopt culturally competent strategies could be a catalyst to promote intention for ACP discussion among this population. Such community outreach programs should also include information about common terminal illnesses beyond Alzheimer’s disease discussed in the present study. We examined ACP in the context of Alzheimer’s disease and found a significant effect of knowledge about Alzheimer’s disease on intention for ACP discussion. This finding suggests that knowledge about terminal illnesses plays an important role in discussing ACP. With increased knowledge about terminal illnesses, family members may recognize the necessity of preparing for their loved one’s end of life in a way in which he or she could be respected and honored, fostering their willingness to discuss ACP. Finally, more research is needed to better understand ACP engagement among ethnic minorities in the context of Alzheimer’s disease care. A qualitative approach that explores the role of acculturation or adherence to traditional culture regarding Alzheimer’s disease and death and dying could provide in-depth understanding that could further inform development of ACP educational interventions for this population. Replication of the study with diverse ethnic minority groups could contribute to the development of culturally appropriate practice guidelines for ACP engagement. Such studies could also help identify commonalities and differences in ACP engagement among different ethnic minority groups, providing general as well as ethnic-specific contents for the guidelines. Funding This study was supported by the Agency for Healthcare Research and Quality (Grant/Award Number: R03 HS022947). Acknowledgments None of the authors associated with this work report any conflict of interest in conducting this research. References Ajzen . ( 1991 ). Theory of planned behavior . Organizational Behavior and Human Decision Processes , 50 , 179 – 211 . doi: 10.1016/0749-5978(91)90020-T CrossRef Search ADS Alzheimer’s Association . ( 2017 ). Alzheimer’s Association Report: 2017 Alzheimer’s disease facts and figures . Alzheimer’s & Dementia , 13 , 325 – 373 . Retrieved from http://www.alzheimersanddementia.com/article/S1552-5260(17)30051-1/pdf. Arcand , M . ( 2015 ). End-of-life issues in advanced dementia. 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The Intention to Discuss Advance Care Planning in the Context of Alzheimer’s Disease Among Korean Americans

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Abstract

Abstract Background and Objectives Advance care planning (ACP) is crucial for quality end-of-life care for patients with Alzheimer’s disease. However, limited evidence is available about ACP among ethnic minorities, particularly in the context of Alzheimer’s disease. The purpose of this study was to examine intention to discuss ACP for a family member with Alzheimer’s disease among Korean Americans. Guided by the theory of planned behavior and prior research, we examined the relationships between acculturation, attitudes, subjective norms, perceived control, and intention to discuss ACP for a family member with Alzheimer’s disease. Research Design and Methods Path analyses were conducted on a cross-sectional convenience sample of 261 Korean Americans. Age, gender, education, and knowledge about Alzheimer’s disease and ACP were included as covariates. Results Our descriptive findings showed positive attitudes, strong subjective norms, and a high level of perceived control toward ACP discussion among the participants. The path analyses revealed that attitudes and subjective norms were positively related to intention for ACP discussion. Perceived control was not related to intention for ACP discussion. Among the covariates, greater knowledge about Alzheimer’s disease was the only factor shown to be associated with the intention for ACP discussion. Discussion and Implications To promote ACP among this population, educational interventions designed to address positives attitudes and subjective norms toward ACP are suggested. Advance care planning, Alzheimer’s disease, End-of-life, Ethnic minorities, Korean Americans, Theory of planned behavior Advance care planning (ACP) involves discussions and decisions about health care in the event that an individual is incapable of making a reasoned decision (Dening, Jones, & Sampson, 2011). The Patient Self-Determination Act (PSDA, 1990) provided a legal foundation to promote ACP in the United States. The PSDA requires federally funded hospitals and nursing homes to provide patients with an opportunity to complete an advance directive in which individuals articulate their preferences for end-of-life treatment (living will) and designate a durable power of attorney for health care ahead of time. Existing evidence indicates that ACP contributes to quality end-of-life care for dying individuals. A systematic review of 133 studies found that engagement in ACP positively influenced the quality of end-of-life care by increasing use of palliative and hospice care and decreasing life-sustaining treatments (Brinkman-Stoppelenburg, Rietiens, & van der Heide, 2014). Patients’ autonomy is also respected by honoring their treatment preferences at the end of life expressed in ACP (Sudore, Schillinger, Knight, & Fried, 2010). ACP is particularly pertinent in the context of Alzheimer’s disease care. The prevalence of Alzheimer’s disease is expected to grow from an estimated 5.5 million Americans aged 65 years or older in 2016 to 13.8 million by 2050 (Alzheimer’s Association, 2017). As individuals with Alzheimer’s disease experience cognitive declines, they are less likely to be able to communicate about their preference for health care, especially in the later stages of the illness (Nicholas, Bynum, Weir, Iwashyna, & Langa, 2014). As such, it is important to discuss ACP in an early stage of the disease, and family members along with health care providers can play a vital role in engaging in such conversations with people with Alzheimer’s disease (Dening et al., 2011). A systematic review of 33 studies underscores the important role of family members in ACP and identified family’s initiation as a dominant factor for engagement in ACP among patients with dementia (van der Steen et al., 2014). Early engagement in ACP in dementia care can also benefit family caregivers by relieving decision-making burdens in the middle of a crisis or grief (Fried, Bullock, Iannone, & O’Leary, 2009; Ko & Berkman, 2012) and helping them avoid any potential conflicts among family members. Despite the identified benefits of ACP for individuals with Alzheimer’s disease for the future when they are unable to communicate, previous research pointed out low levels of engagement in ACP among ethnic minorities (Dobbs, Park, Jang, & Meng, 2015), suggesting ethnic or racial disparities in end-of-life care. A study with a nationally representative sample of adults aged 18 years or older reported that around 34% of White respondents had advance directives compared to only 18% of ethnic minorities, including Blacks, Latinos, and others (Rao, Anderson, Lin, & Laux, 2014). Another recent study with community-dwelling Medicare beneficiaries aged 65 years or older found far less engagement in end-of-life discussions among ethnic minority groups (39.8%) compared to Whites (65.6%; Harrison, Adrion, Ritchie, Sudore, & Smith, 2016). The low prevalence of ACP among ethnic minorities presents a concern for the quality of end-of-life care for these populations, in particular those with Alzheimer’s disease. However, to our knowledge, there has been no study examining ACP intention among Asian Americans in the context of Alzheimer’s disease or dementia. This study aimed to address this gap in the existing body of knowledge. Specifically, given the important role of family members in end-of-life decisions for individuals with Alzheimer’s disease (Arcand, 2015; van der Steen et al., 2014), this study examined Korean Americans’ (KAs) intention to discuss ACP with family members in a situation where someone in the family is diagnosed with Alzheimer’s disease. ACP Among Korean Americans KAs are the fastest growing racial/ethnic group in the United States (López, Ruiz, & Patten, 2017) as the fifth-largest Asian American subgroup, with an estimated population of 1.6 million in 2010 (U.S. Census Bureau, 2010). A recent study indicated that KAs had limited knowledge of and low engagement in ACP compared to other ethnic minorities; only 20% were aware of advance directives, and 18% reported completing their advance directives (Dobbs et al., 2015). A qualitative study of KA older adults found that most participants mistook advance directives for wills for asset disposal upon death (Kwak & Salmon, 2007). Another qualitative study documented that none of the KA study participants engaged in ACP (Ko & Berkman, 2012). Ko and Lee (2009) also found a significant difference in the prevalence of engagement in end-of-life communication between KA (39.3%) and non-Hispanic White older adults (64.8%). Albeit limited, a handful of research studies with KAs identified potential factors that affect ACP engagement. For example, studies found that KAs who were more acculturated and had greater knowledge about advance directives were more likely to engage in ACP (Dobbs et al., 2015) and that knowledge about ACP was the strongest predictor of end-of-life communication among both non-Hispanic Whites and KAs (Ko & Lee, 2009). Another study reported that higher educational levels and greater acculturation were associated with positive attitudes toward ACP among KAs (Kim & Foreman, 2011). Furthermore, Alzheimer’s disease research with KAs documented limited knowledge and misconceptions about Alzheimer’s disease (Casado, Lee, Hong, & Hong, 2015; Lee, Lee, & Diwan, 2010), raising a concern about delayed diagnosis of Alzheimer’s disease and professional care seeking among KAs. Given the low levels of prevalence and awareness of ACP among KAs, such limited knowledge and misconceptions about Alzheimer’s disease could increase barriers for ACP engagement in the context of Alzheimer’s disease among this population. The theory of planned behavior (TPB; Ajzen, 1991) provided a conceptual framework for the current study. According to the TPB, a human behavior is guided by three determinants: attitudes, subjective norms, and perceived behavioral control. Attitudes toward a certain behavior represent positive or negative evaluations of the behavior and are considered to be an essential component in the TPB. Subjective norms involve personal perceptions about the social expectation to perform a certain behavior, whereas perceived control refers to one’s subjective assessment of resources and challenges in adopting a behavior (Ajzen, 1991). Given that ACP is a complex process that reflects cultural values and beliefs (Kwak & Salmon, 2007), the TPB can provide a useful framework for the present study by considering variables that can reflect cultural contexts of ACP. For example, in traditional Korean culture, discussions about death and dying are avoided, and family-centered decision making is preferred (Ko & Berkman, 2012; Kwak & Salmon, 2007). In addition, KAs are known for strong adherence to traditional cultural norms (Kim & Foreman, 2011). The three determinants of the TPB (attitudes, subjective norms, and perceived control) can capture such unique cultural values and norms connected with ACP and their influences on engagement in ACP. Two descriptive studies used the TPB as a conceptual framework to examine attitudes toward ACP among older Latino adults (Heyman & Gutheil, 2010) and Asian Americans and Native Hawaiians (Kataoka-Yahiro, Conde, Wong, Page, & Peller, 2010), demonstrating its applicability in explaining ACP engagement among ethnic minority groups. Study Purpose and Hypotheses Despite a growing concern about low engagement in ACP among ethnic minorities (Dobbs et al., 2015), the existing literature offers limited knowledge regarding ACP among this group. In particular, ACP in the Alzheimer’s disease context among Asian Americans has been largely absent in the literature. Therefore, based upon the TPB model, the purpose of the present study was to examine KAs’ intention to discussion ACP with family members when someone in the family is diagnosed with Alzheimer’s disease. Informed by the aforementioned previous research, we added acculturation as an exogenous variable that could influence other variables in the TPB model. Specifically, we hypothesized that (a) higher acculturation is associated with greater intention to discuss ACP through greater levels of subjective norms, positive attitudes, and perceived control toward ACP discussion; and (b) greater levels of subjective norms, positive attitudes, and perceived control toward ACP discussion are associated with greater intention to discuss ACP. Sociodemographic variables (e.g., age, gender, education, and marital status) and knowledge about Alzheimer’s disease and ACP were included as covariates in our path analyses. Figure 1 presents the conceptual model of the study. Figure 1. View largeDownload slide Conceptual model for intention to discuss advance care planning (ACP) for a family with Alzheimer’s disease. Figure 1. View largeDownload slide Conceptual model for intention to discuss advance care planning (ACP) for a family with Alzheimer’s disease. Methods Procedures and Sample Data were drawn from a cross-sectional community survey conducted as part of a community participatory research project in the Washington, D.C., metropolitan area in 2014. Through a partnership with a local community agency serving KAs, the research project was developed to examine perspectives toward and care seeking for Alzheimer’s disease among KAs. The community partner agency was involved in the research project from the development and translation of the survey materials to the recruitment of study participants and collection of survey data. Inclusion criteria of the study participants were as follows: (a) 40 years of age or older and (b) self-identified KAs. Study participants were recruited using convenience sampling. Two bilingual KAs with a higher education degree recruited by the community partner agency and trained by the principal investigator of the project advertised and recruited study participants in various locations including community event sites, business sites, churches, and community centers. A total of 268 participants were recruited, and 266 completed the survey. The survey materials were developed in English first and translated into Korean using Brislin’s (1970) back-translation method. All participants chose to complete their survey in Korean. The two trained bilingual surveyors collected data using self-administered surveys (n = 248) and face-to-face interviews (n = 18), depending on participants’ preference. An independent samples t test was conducted to examine differences in intention to discuss ACP by data collection methods, and no difference was found (t [16.695] = −.859, p = .402). The survey study was approved by a university’s institutional review board. Measures The four major variables of the present study (intention, attitudes, subjective norms, and perceived control toward ACP discussion) were measured using a modified version of the Theory of Planned Behavior Questionnaire (TPBQ; Mo & Mak, 2009). The TPBQ was originally developed to examine help-seeking behaviors for mental health problems among Chinese populations in Hong Kong and includes four of the following subscales: intention, attitudes, subjective norms, and perceived control toward mental health service seeking. We developed the modified version of the TPBQ by framing questions in the context of Alzheimer’s disease and substituting “mental health service” in the original TPBQ with “advance care planning.” Intention to Discuss ACP The outcome variable of the present study was intention to discuss ACP for a family member with Alzheimer’s disease. A modified three-item version of the intention subscale of the TPBQ was used to assess intention for ACP discussion. The three items asked respondents to rate on a five-point Likert scale (1 = strongly disagree to 5 = strongly agree) the extent to which a respondent would intend, try, or plan to discuss ACP with family members if someone in the family were diagnosed with Alzheimer’s disease. The mean of item scores was used, with a higher score indicating a greater intention for ACP discussion. The internal consistency reliability of this measure was α = .96 in this sample. Attitudes Toward ACP Discussion A modified six-item version of the attitude subscale of the TPBQ was used to assess attitudes toward ACP discussion. The six items asked respondents to select where their attitudes toward ACP discussion with family members would lie on a 10-point semantic differential scale (worthless/worthwhile, bad/good, useless/useful, foolish/wise, rare/common, and shameful/honorable) if someone in the family were diagnosed with Alzheimer’s disease. The mean of item scores was used in the analyses, with a higher score indicating a more positive attitude. The internal consistency reliability of this measure was α = .95 in this sample. Subjective Norms Toward ACP Discussion A modified two-item version of the subjective norms subscale of the TPBQ was used to measure subjective norms toward ACP discussion. The modified version of the subjective norms subscale originally included three items. However, one item that asked participants about their perceptions of others’ negative perspectives about ACP discussion was dropped due to its unacceptably low item-total correlation (.081; Nunnally & Bernstein, 1994). As a result, we included only two items that asked for respondents’ perceptions about what important others would do and expect them to do regarding ACP discussion with family members when someone in the family is diagnosed with Alzheimer’s disease. Each response was rated on a four-point Likert scale (1 = strongly disagree to 4 = strongly agree). The mean of the item scores was used in the analyses, with a higher score indicating a stronger level of subjective norms toward ACP discussion. The internal consistency reliability of this measure was α = .76 in this sample. Perceived Control Toward ACP Discussion A modified three-item version of the perceived control subscale of the TPBQ was used to assess perceived control toward ACP discussion. These three items asked about the levels of agreement regarding perceived ability to discuss ACP with family members using a four-point Likert scale (1 = strongly disagree to 4 = strongly agree). The mean of item scores was used in the analyses, with a higher score indicating a greater perceived ability to discuss ACP. The internal consistency reliability of this measure was α = .90 in this sample. Acculturation Eight items drawn from a 20-item Acculturation Scale for Korean immigrants (Moon, 2004) was used to measure cultural orientation. Using a five-point Likert scale, the eight items measured cultural preferences regarding lifestyle, language use, friendship, ways of life, and thinking. Possible scores range from 8 to 40, with a higher score indicating greater cultural orientation toward American culture. The internal consistency reliability of this scale was α = .86 in this sample. Knowledge About ACP A single item that asked how much respondents knew about ACP was used to measure knowledge about ACP. Due to the lack of variations in the original four response options, we dichotomized the responses: The responses “don’t know at all” and “know little” were collapsed into no/little knowledge (coded as “0”), and “know some” and “know very well” were collapsed into some/good knowledge (coded as “1”). Knowledge About Alzheimer’s Disease We used the Alzheimer’s Disease Knowledge Scale (ADKS; Carpenter, Balsis, Otilingam, Hanson, & Gatz, 2009) to measure knowledge about Alzheimer’s disease. The ADKS consists of 30 true or false questions about various aspects of Alzheimer’s disease, such as symptoms, diagnosis, course of disease, and management. Possible scores range from 0 (no correct answers) to 30 (all correct answers). Empirical evidence supports the validity and reliability of the ADKS (Carpenter et al., 2009), and the scale also demonstrated acceptable internal consistency reliability, with α = .71 in this sample. Furthermore, demographic characteristics such as age, gender (1 = male), education (1 = college education or higher, 0 = less than college education), and marital status (1 = married, 0 = others) were also included in the analyses as covariates. Data Analysis Descriptive statistics were conducted to summarize the sample characteristics and study variables. In addition, correlation tests were conducted to examine bivariate associations between continuous variables and checked multicollinearity. No multicollinearity was found. Furthermore, prior to testing the hypotheses, Missing Value Analysis (MVA) was performed, and no missing data patterns were found on any variable in the data set. Multiple imputations were used to address missing values for Alzheimer’s knowledge (12.7% missing) and acculturation (5.3% missing) scores to keep statistical power as high as possible given the available sample size. SPSS 23.0 was used for descriptive statistics and correlation tests as well as MVA and computations. In order to examine the hypothesized relationships between variables, we performed path analyses using Mplus 6.0. Path analysis is the appropriate statistical approach to test hypothesized causal relationships between sets of multiple observed variables (Pedhazur, 1982). Multiple fit indices were used to examine goodness of fit between our sample data and the hypothesized path model, including Root Mean Square Error of Approximation (RMSEA) close to or smaller than .05, Comparative Fit Index (CFI) greater than .90, and Tucker–Lewis index (TLI) greater than .90 (Kline, 2005). Given that a sample size of 200 or above is considered large to conduct structural equation modeling (Kline, 2005), our sample size (N = 266) was sufficient for path analysis. Results Descriptive Analysis The average age of study participants was 54.3 years old (SD = 10.9, range = 40–86). The majority of study participants were female (60.9%) and employed (59.3%). Most were married (82.1%) and non-U.S. born (98%), and had completed a high school education or higher (87.6%). Most participants reported that neither they (89.1%) nor their family members (93.2%) had completed advance directives. Despite the low completion rates of advance directives, respondents reported a relatively strong intention for ACP discussion if a family member had Alzheimer’s disease (mean score = 3.25, SD = 0.57, range = 1–4). Slightly less than half of the respondents indicated little or no knowledge about ACP (46.2%). Furthermore, strong beliefs toward all three determinants in the TPB model were found: Respondents held positive attitudes (mean = 9.02, SD = 1.67, range = 1–10) and perceived strong subjective norms toward ACP discussion (mean = 3.26, SD = 0.60, range = 1–4) and reported a great deal of perceived ability to discuss ACP (mean = 3.23, SD = 0.54, range = 1–4). Table 1 presents the demographic characteristics of study participants and study variables. Table 1. Respondents Characteristics and Study Variables Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) View Large Table 1. Respondents Characteristics and Study Variables Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) Mean (range, SD) n (%) Gender (n = 266) Female 162 (60.9) Male 104 (39.1) Marital status (n = 263) Married 216 (82.1) Others 47 (17.9) Education (n = 266) Less than high school 33 (12.4) High school or equivalent GED [General Education Diploma] 64 (24.1) Some college or vocational 43 (16.2) Bachelor’s degree 81 (30.5) Master’s degree 16 (6.9) Professional or doctorate degree 29 (10.9) Knowledge about advance care planning (n = 265) Don’t know at all 43 (16.2) Know little 82 (30.9) Know some 105 (39.5) Know very well 35 (13.2) Age (n = 266) 54.34 (40–86, 10.90) Acculturation (n = 252) 16.59 (8–40, 5.99) Knowledge about Alzheimer’s disease (n = 232) 17.74 (0–30, 2.74) Attitudes (n = 264) 9.02 (1–10, 1.67) Subjective norms (n = 265) 3.26 (1–4, 0.60) Perceived behavioral control (n = 264) 3.23 (1–4, 0.59) Intention of advance care planning (n = 266) 3.25 (1–5, 0.57) View Large Correlation analyses (Table 2) showed that the strongest association was between subjective norms and perceived control (r = .636, p < .001), followed by the associations of attitudes with subjective norms (r = .460 p < .001) and perceived control (r = 324, p < .001). Between the predictor variables and the dependent variable (intention for ACP discussion), the strongest association was found between subjective norms and intention for ACP discussion (r = .560, p < .001), followed by the association between attitudes and intention for ACP discussion (r = .501, p < .001). Table 2. Correlation Matrix of Continuous Variables (N = 223) 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 Note: ACP = Advance care planning. *p < .05, **p < .01, ***p < .001. View Large Table 2. Correlation Matrix of Continuous Variables (N = 223) 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 1 2 3 4 5 6 7 1. Age 1.00 2. Alzheimer’s Knowledge −0.063 1.00 3. Acculturation −0.291*** 0.154* 1.00 4. Attitudes 0.054 0.106 −0.004 1.00 5. Subjective norms 0.154* 0.001 −0.033 0.460*** 1.00 6. Perceived control 0.016 −0.010 −0.066 0.324*** 0.636*** 1.00 7. Intention for ACP discussion 0.063 0.183*** 0.027 0.501*** 0.560*** 0.391*** 1.00 Note: ACP = Advance care planning. *p < .05, **p < .01, ***p < .001. View Large Path Models Guided by the TPB, we tested the hypothesized relationships between acculturation, attitudes, subjective norms, perceived control, and intention for ACP discussion for a family member with Alzheimer’s disease. The initial path model yielded a poor model fit, χ2 (18) = 189.301 (p < .001), CFI = .406, TLI = .010, RMSEA = .207 (95% CI = .181 ~ .232, probability RMSEA ≤ .05 = .000). Acculturation was not associated with any of the three determinants of the TPB or intention for ACP discussion for a family member with Alzheimer’s disease. Attitudes, subjective norms, and knowledge about Alzheimer’s disease were associated with intention for ACP discussion for a family member with Alzheimer’s disease, but no relationship was found between perceived control and intention to discuss ACP for a family member with Alzheimer’s disease. Modification indices revealed correlations between all three determinants of TPB: attitudes with subjective norms (MI = 47.542) and perceived control (MI = 23.946), and subjective norms and perceived control (MI = 89.009). The model was respecified by adding correlations between the three determinants of the TPB reflecting the modification indices and deleting the variable of acculturation. This respecified path model produced an excellent model fit, χ2 (19) = 23.493 (p = .2163), CFI = .984, TLI = .975, RMSEA = .033 (95% CI = 0.000 ~ 0.033, probability RMSEA ≤ .05 = .736). Attitudes (β = .271, p < .001) and subjective norms (β = .412, p < .001) were associated with intention for ACP discussion for a family member with Alzheimer’s disease. However, perceived control was not associated with intention for ACP discussion either directly or indirectly. Among covariates, only knowledge about Alzheimer’s disease (β = .137, p = .010) was associated with intention for ACP discussion for a family member with Alzheimer’s disease. Furthermore, attitudes, subjective norms, and perceived control were associated with each other. Attitudes were associated with subjective norms (β = .461, p < .001) and perceived control (β = .326, p < .001), and subjective norms were also associated with perceived control (β = .631, p < .001; see Figure 2). This respecified path model explained the 43.5% variance in intention for ACP discussion. Table 3 presents the standardized path coefficients of variables and model fits of the respecified path models. Table 3. Respecified Path Model of Intention for ACP Discussion for a Family With Alzheimer’s Disease (N = 261) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) Note: ACP = Advance care planning. View Large Table 3. Respecified Path Model of Intention for ACP Discussion for a Family With Alzheimer’s Disease (N = 261) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) β SE p value Direct path  Attitudes→Intention for ACP discussion .271 0.057 <.001  Subjective norms→Intention for ACP discussion .412 0.068 <.001 Correlation  Attitudes↔Subjective norms .461 0.053 <.001  Attitudes↔Perceived control .326 0.060 <.001  Subjective norms↔Perceived control .631 0.040 <.001 Covariate  Alzheimer’s knowledge→Intention for ACP discussion .137 0.053 .010 Model fit χ2 (19)=23.493 (p = .2163) CFI = .984, TLI = .975 RMSEA = .033 (95% CI = 0.000 – 0.033, probability RMSEA ≤ .05 = .736) Note: ACP = Advance care planning. View Large Figure 2. View largeDownload slide Respecified path model of intention to discuss advance care planning for a family with Alzheimer’s disease. *p < .05, **p < .01, ***p < .001. Figure 2. View largeDownload slide Respecified path model of intention to discuss advance care planning for a family with Alzheimer’s disease. *p < .05, **p < .01, ***p < .001. Discussion With the increasing number of ethnic minority older adults and the important role of family members in discussing ACP for people with Alzheimer’s disease, there is an urgent need to identify potential factors affecting intention for ACP discussion in the Alzheimer’s disease care situation and to find a way to promote ACP in these groups. Using an augmented TPB model, we tested hypothesized relationships between acculturation, attitudes, subjective norms, perceived control, and intention for ACP discussion among KAs, particularly for a family member diagnosed with Alzheimer’s disease. Our descriptive statistics indicated that about half of the respondents had some familiarity with ACP. Given the lack of knowledge about ACP reported among KAs (Dobbs et al., 2015; Kwak & Salmon, 2007), this finding was encouraging. KAs in our study also had positive attitudes toward ACP discussion. However, completion of advance directives was still low (8.5%), which is consistent with prior research (Dobbs et al., 2015; Ko & Berkman, 2012). Our hypotheses were partially supported. As hypothesized, attitudes and subjective norms were associated with intention for ACP discussion, indicating that the more the participants perceived social expectation toward ACP discussion, the stronger their intention for ACP discussion in the Alzheimer’s disease care situation was. In particular, subjective norms were the strongest determinant of intention for ACP discussion among all variables included in the model. It is notable that early research using the TPB often identified subjective norms as the weakest predictor of the TPB’s three determinants (Armitage & Conner, 2001). Our finding that subjective norms had the strongest effect might reflect the collectivistic culture of KAs. In collectivistic Asian cultures, groups’ goals are prioritized over personal goals and expectations, and approval from the reference group is a critical determinant for engaging in a behavior (Triandis, 1999). Thus, subjective norms, which are personal perceptions about social expectations to perform a certain behavior, can be more salient than any other determinants for intention to discuss ACP among KAs. On the contrary, in individualistic cultures where personal goals are emphasized over group goals and personal gains or losses play a key role in engaging in a behavior (Triandis, 1999), subjective norms may not necessarily lead to behavioral intention, such as intention to discuss ACP. In these cultural contexts, it is not surprising to find that early TPB studies conducted with predominantly White respondents reported a less significant role of subjective norms than the other two determinants in the TPB. Our study also found a positive relationship between attitudes toward ACP discussion and intention for ACP discussion, corroborating prior findings of attitudes and intention for ACP among community-dwelling older adults (Campbell, Edwards, Ward, & Weatherby, 2007). Fried et al. (2009) suggested that improvement in attitudes toward ACP is a precedent step to promote ACP, and the finding of our study supports this suggestion. Refuting our hypothesis, we did not find a significant relationship between perceived control and intention for ACP discussion. This finding can also be understood within the context of collectivistic culture. Family members from collectivistic cultures tend to receive the same level of details about a patient’s diagnosis, prognosis, and treatment options (Braun, Mokuau, & Tsark, 1997) and prefer shared decision making (Kim & Foreman, 2011). As such, family discussions about a family member’s illness may be an assumed factor for health care decisions and thus “behavioral control” operationalized as perceived ability to discuss ACP with family members may not have much influence on KAs’ intention for ACP discussion. However, our findings of the relationship between perceived control, attitudes, and subjective norms indicate that levels of perceived control could be attributed to their attitudes and subjective norms. In Korean culture, there is a reluctance to openly talk about death and dying (Ko & Berkman, 2010), so individuals who hold stronger beliefs about social norms and expectations (i.e., subjective norms) for and positive attitudes toward ACP discussion are likely to feel confident in discussing ACP. We also found that KAs with greater knowledge about Alzheimer’s disease had a greater intention to discuss ACP in the Alzheimer’s disease situation. van der Steen et al. (2014) stated that providing clear information on dementia to family members could enhance engagement in ACP for patients with dementia because it could help them visualize trajectories of the disease. Likewise, KAs with greater knowledge about Alzheimer’s disease are likely to have a better understanding of the disease’s progression and therefore recognize the necessity of ACP, leading to greater intention to discuss ACP for a family member with Alzheimer’s disease. Furthermore, given the misconceptions of and even stigma relating to Alzheimer’s disease among KAs (Casado et al., 2015; Lee et al., 2010), increased knowledge about Alzheimer’s disease could rectify negative perceptions about Alzheimer’s disease and promote intention for ACP discussion, helping their family member with Alzheimer’s disease prepare for the end of life with quality. Finally, hypotheses regarding the relationships of acculturation with the three determinants of ACP and intention for ACP discussion were not supported in our study. Contrary to prior research, which found acculturation to be one of the commonly identified indicators for awareness of and intention for end-of-life care services such as hospice (Jang, Chiriboga, Allen, Kwak, & Haley, 2010) and advance directives (Dobbs et al., 2015; Kim & Foreman, 2011), we found that acculturation was not associated with any of the three determinants of the TPB or intention for ACP discussion. There could be several plausible explanations. Most of all, inclusion of strong predictors of intention for ACP discussion, such as attitudes, subjective norms, and knowledge about Alzheimer’s disease in our model, might have attenuated the influence of acculturation on intention for ACP discussion. With three strong indicators, our TPB model explained 43% of the variance in intention for ACP discussion. Furthermore, the acculturation measurement used in this study assessed behavioral aspects of acculturation, such as friendship, media use, and lifestyle, which might not be able to capture culturally unique beliefs relevant to ACP, resulting in a nonsignificant effect on intention for ACP discussion. Given the fact that ACP is a complicated process reflecting multiple aspects of culture (Ko & Lee, 2009), the general construct of acculturation might be neutralized when attitudes and subjective norms included in the model capture ACP-specific perspectives. Lastly, all surveys were conducted in Korean, and almost all study participants (98%) were born in Korea. Also, the average score of acculturation among the study participants was 16.59 (SD = 5.99) with a range of 8–40. These may indicate a low level of acculturation in our sample, with limited variations in acculturation, leading to the nonsignificant effect of acculturation in our path model. Taken together, it might be presumptuous to refute the influence of acculturation on approaching ACP intention among this population. Limitations of the study should be noted. First, the use of a cross-sectional design and the convenience sampling method limit the study’s ability to draw causal relationships between variables and generalize the findings of the study to the KA population in general. Social desirability bias that has been often found in collectivistic culture (Lalwani, Shavitt, & Johnson, 2006) might have also influenced the responses of our study sample. For example, our findings of a high level of intention for ACP discussion or strong subjective norms toward ACP discussion might have been due to social desirability bias. The measurements used in the study also pose some limitations. We used a single dichotomous item to gauge knowledge about ACP, which may not have tapped into the extent and accuracy of understanding about ACP. The survey also provided a brief description of ACP before asking about ACP, which may have sensitized the study participants and led to reporting of a greater level of knowledge about ACP. Despite these limitations, the present study provides several important implications for practice and research. First, a public campaign about ACP could be beneficial to promote ACP discussion among KAs. In order to effectively motivate KAs to discuss ACP, targeted efforts to promote positive attitudes about ACP discussion may be required. Community outreach programs, for example, could include the legal foundation of advance directives (i.e., PSDA) and the values of ACP to strengthen normative beliefs about ACP. Rather than emphasizing patients’ autonomy or self-determination rooted in the Western culture as core values of ACP, geriatric clinicians and practitioners could talk about how ACP can be in accordance with collectivistic Asian cultural norms by honoring the wishes of family members with Alzheimer’s disease at their end stages of life and reducing potential family burden and conflicts regarding health care decisions (Gao, Sun, Ko, Kwak, & Shen, 2015; Sun et al., 2016). This approach could lead to improved attitudes toward ACP discussion among this population. Our findings about high levels of all three determinants of the TPB regarding intention for ACP discussion (i.e., positive attitudes and high levels of subjective norms and perceived behavioral control) may indicate KAs’ readiness to accept ACP, and thus, community outreach programs that adopt culturally competent strategies could be a catalyst to promote intention for ACP discussion among this population. Such community outreach programs should also include information about common terminal illnesses beyond Alzheimer’s disease discussed in the present study. We examined ACP in the context of Alzheimer’s disease and found a significant effect of knowledge about Alzheimer’s disease on intention for ACP discussion. This finding suggests that knowledge about terminal illnesses plays an important role in discussing ACP. With increased knowledge about terminal illnesses, family members may recognize the necessity of preparing for their loved one’s end of life in a way in which he or she could be respected and honored, fostering their willingness to discuss ACP. Finally, more research is needed to better understand ACP engagement among ethnic minorities in the context of Alzheimer’s disease care. A qualitative approach that explores the role of acculturation or adherence to traditional culture regarding Alzheimer’s disease and death and dying could provide in-depth understanding that could further inform development of ACP educational interventions for this population. Replication of the study with diverse ethnic minority groups could contribute to the development of culturally appropriate practice guidelines for ACP engagement. Such studies could also help identify commonalities and differences in ACP engagement among different ethnic minority groups, providing general as well as ethnic-specific contents for the guidelines. Funding This study was supported by the Agency for Healthcare Research and Quality (Grant/Award Number: R03 HS022947). Acknowledgments None of the authors associated with this work report any conflict of interest in conducting this research. References Ajzen . ( 1991 ). Theory of planned behavior . Organizational Behavior and Human Decision Processes , 50 , 179 – 211 . doi: 10.1016/0749-5978(91)90020-T CrossRef Search ADS Alzheimer’s Association . ( 2017 ). Alzheimer’s Association Report: 2017 Alzheimer’s disease facts and figures . Alzheimer’s & Dementia , 13 , 325 – 373 . Retrieved from http://www.alzheimersanddementia.com/article/S1552-5260(17)30051-1/pdf. Arcand , M . ( 2015 ). End-of-life issues in advanced dementia. 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The GerontologistOxford University Press

Published: Jan 29, 2018

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