Abstract
Keywords
Introduction
Comprising 14% of the current U.S. population aged 65 and older, and with a projection to reach 23% by 2060, older immigrants are one of the fastest growing U.S. population groups (Hanna & Batalova, 2021). Their vulnerabilities in health and healthcare are widely recognized as a public health concern (Derose et al., 2007; Ponce et al., 2006). Beyond general access barriers (e.g., low socioeconomic status, lack of health insurance, and transportation difficulty), older immigrants face unique challenges arising from language, culture, and a healthcare system markedly different from the system in their countries of origin (Jang & Kim, 2019; Tsoh et al., 2016). Many older immigrants therefore lack self-sufficiency in healthcare navigation and rely on their own informal networks (e.g., family, friends, and members of ethnic communities) to meet healthcare needs related to language assistance, transportation, finance, medical decision-making, and caregiving (Choi et al., 2018; Jang, Park et al., 2020; Tsoh et al., 2016).
Such dependency on others can make older immigrants perceive themselves to be a burden on others, which can further diminish their health and well-being. In particular, many older immigrants who come from cultures that embrace “aging prestige” by assigning roles of leadership or authority to individuals with advanced age find themselves dependent on a younger generation in order to navigate the U.S. healthcare system. It is difficult for them to overcome the feeling of “marginalization” or “burdensomeness.” In the present study, recognizing these challenges for older immigrants with healthcare needs as well as their psychological impact, we present a social network–based assessment to examine those who assist older immigrants with healthcare needs (“healthcare partners”) and how older immigrants’ interactions with their healthcare partners are associated with the sense of burdensomeness.
Perceived Burdensomeness in the Context of Immigration and Healthcare Use
Perceived burdensomeness, the perception that one is a burden on others, is often reported by individuals in life situations that frequently require increased assistance from others, such as terminal illness or other critical medical problems (Filiberti et al., 2001; Wilson et al., 2005). Increased reliance on family and friends for personal care, for example, can promote a sense of burden, with feelings of guilt and shame, diminished self-esteem and self-worth, symptoms of depression and anxiety, and suicidal ideation and behavior (Cukrowicz et al., 2011; Lutz et al., 2020). Concern about burdening family members is one of the major reasons given by terminally ill patients for considering euthanasia under the Oregon Death with Dignity Act (Oregon Health Authority, 2021). Although perceived burdensomeness has been studied primarily among those with life-limiting health conditions, it is potentially applicable in research on older immigrants whose ability to use health services in their host country is limited and whose reliance on informal networks is high (Choi et al., 2018; Jang, Park et al., 2020; Tsoh et al., 2016). This line of research requires a particular emphasis on cultural consideration because older immigrants’ expectations and beliefs about aging, independence, and interpersonal support vary with cultural orientation (Cukrowicz et al., 2011).
Target Group: Older Korean Immigrants in the United States
The target group for the present investigation was older Korean Americans. About 29% of the U.S. older immigrant population are of Asian origin, and Koreans are the fifth largest Asian American subgroup (Budiman, 2021). Due to their relatively recent immigration to the United States, most of older Korean Americans are foreign born and face cultural and linguistic barriers. Their limited English proficiency is notably high, and it is a critical source of their disparities in health and healthcare (Fang et al., 2017; Jang & Kim, 2019). Consistent with a cultural emphasis on collectivism (Kim & Silverstein, 2021; Lee & Mock, 2005), older Asian Americans in general place a high value on support from family, friends, and ethnic communities as a social resource that enables them to overcome life challenges and meet their needs. In healthcare use, informal networks, particularly those with family members, are frequently utilized by many older Asian American groups (Spencer et al., 2010; Zhang et al., 1998). Although a few qualitative studies have reported older Asian Americans’ concerns about burdening family members for healthcare needs (e.g., Jang, Rhee et al., 2020; Leung et al., 2014), little is known about correlates of perceived burdensomeness.
Perceived Burdensomeness to Healthcare Partners: An Egocentric Network Assessment
Relatively unique to the present investigation is the use of an egocentric approach to assessing healthcare support networks. Social networks are conventionally assessed with survey instruments that measure general aspects of interpersonal ties at the individual level (e.g., network size and frequency of contact). Moving beyond such methods, we incorporate social network analysis modules with name-generating prompts that involve specific network members (Borgatti et al., 2018; Perry et al., 2018). Egocentric network data were generated by asking older adult participants (egos) to list up to three social network members from whom they usually sought help for healthcare needs (alters) and adding detailed information for each enumerated healthcare partner including relationship, gender, and type of support received. This network-specific information in the nested structure (an ego with an independent list of alters) informs our egocentric assessment of healthcare partnerships.
Using egocentric analysis allows us to understand network processes at two levels: (1) how individual-level characteristics are associated with older adults’ perceived burdensomeness to their healthcare partners and (2) how connections to specific healthcare partners and the nature of the ties are associated with the perceptions of burdensomeness to that specific alter. Egocentric analyses that focus on alter-level outcomes (e.g., Snijders et al., 1995) are less common in health services research than those on ego-level outcomes. Recent work in mental health services research explored how alter-level factors impact disclosure of mental health conditions (e.g., Pahwa et al., 2017), suicidal thinking (e.g. Fulginiti et al., 2016), and HIV status (e.g., Rice et al., 2009). Moreover, Perry and Pescosolido (2015) examined healthcare discussants with whom persons experiencing mental illness chose to discuss their health matters during episodes of illness. They identified alters’ characteristics that were significantly associated with network activation. That activation was more likely when the alter shared a mental health problem with the ego and had suggested mental health services to the ego. A strong ego–alter tie, indicated by frequent contacts and emotional closeness, also increased the odds of network activation.
The Present Study
Using the egocentric approach, we examined (1) who served as healthcare partners and (2) how the characteristics of older adults and their healthcare partners were associated with older adults’ perceived burdensomeness. Given the valuation of familism and filial piety in Korean culture (Sung & Song, 2001), we expected that family members would be a major source of support regarding healthcare. Based on the literature on immigrant health and health service use aforementioned (e.g., Derose et al., 2007; Jang & Kim, 2019; Ponce et al., 2006; Tsoh et al., 2016), we considered sociodemographic and immigration-related characteristics, health, and healthcare access as potential individual-level factors. We anticipated that those who lacked personal resources (e.g., individuals with low education, limited English proficiency, and poor health status) would be more prone to a sense of burdensomeness. In addition, the characteristics of healthcare partners (e.g., relationship, gender, and type of support) would not only directly shape older adults’ perceived burdensomeness to their healthcare partners but also interact with older adults’ personal resources. Due to the scarcity of literature on network-based assessment of healthcare partnerships in older immigrants, the alter-related part of the investigation was exploratory.
Methods
Sample
Data for this investigation are from the Study of Older Korean Americans (SOKA), a multi-state survey on health and healthcare use among Korean immigrants aged 60 and older. The states included in the SOKA are California, New York, Texas, Hawaii, and Florida, which present an array of Korean population densities from highest to lowest, respectively. In each state, the survey focused on a primary metropolitan statistical area with a representative proportion of Korean Americans: Los Angeles, New York City, Austin, Honolulu, and Tampa. The SOKA’s community-based samples were recruited by investigators who shared the target population’s language and culture. In each of the five SOKA study areas, data collection took place at multiple locations and events (e.g., churches, temples, grocery stores, small group meetings, and cultural events) from April 2017 to February 2018. The SOKA questionnaire was in Korean, developed using back-translation and reconciliation. The questionnaire was designed to be self-administered, but trained interviewers were onsite for any participants who needed assistance. Data collection for the project was approved by the Institutional Review Board at the University of Texas at Austin. A total of 2176 individuals participated in the survey. After removal of those with more than 10% data missing on study variables, the final sample for the present study consisted of 2150 participants. More information on the sample is available elsewhere (Jang, Choi et al., 2020).
An egocentric name-generating prompt was included as part of the SOKA questionnaire. Participants (i.e., egos) were asked to name up to three individuals (i.e., alters) whom they usually asked for help on health-related matters or healthcare use. Characteristics of the alters (e.g., gender, relationship, and details on support received) were also obtained. The SOKA participants reported 3402 healthcare partners.
Measures
Characteristics of Older Adults (Egos)
The sociodemographic variables for egos included age (in years), gender (0 = male and 1 = female), marital status (0 = not married and 1 = married), and education (0 = ≤high school graduation and 1 = >high school graduation). Region was coded into three Korean density areas: high (California and New York), medium (Texas and Hawaii), and low (Florida). English-speaking ability was measured on a 4-point scale (0 = not at all to 3 = very well).
Other ego variables were related to health status and healthcare access. Chronic medical conditions were assessed with a checklist of 10 diseases and conditions common in older populations (hypertension, heart disease, stroke, diabetes, cancer, arthritis, hepatitis, kidney problem, asthma, and chronic obstructive pulmonary disease); a total count was used in the analysis. Functional disability was assessed with a composite measure (Fillenbaum, 1988) that included activities of daily living and instrumental activities of daily living. The scale included 16 activities (e.g., walking, bathing, dressing, and managing medication), and participants were asked to indicate how they could perform each activity. Responses were coded as 0 (without help), 1 (with some help), or 2 (unable to do). Total scores could thus range from 0 (no functional disability) to 32 (severe functional disability). Internal consistency of the scale in the present sample was high (α = .89). As an indicator of healthcare access, health insurance coverage was coded as a binary variable (0 = not insured and 1 = insured).
Characteristics of Healthcare Partners (Alters)
For each of the named alters, participants provided additional information that served as alter variables. First, participants were asked to describe their relationship with the person named in an open-ended format. Responses included spouse, daughter, son, daughter-in-law, son-in-law, granddaughter, grandson, niece, nephew, friend, pastor, paid services, and medical professionals, and these were coded into two categories (0 = family and 1 = non-family). The reported gender of the alter was coded as a binary variable (0 = male and 1 = female). Participants were also asked to check types of support received from each alter, using a list that included (a) instrumental support (e.g., making an appointment, transportation, interpretation, and caregiving), (b) financial support (e.g., payment for medical bills), (c) informational support (e.g., sharing information or advice on health and healthcare), and (d) emotional support (e.g., sharing concerns and providing comfort when sick).
Perceived Burdensomeness
For the alter-level outcome, participants were asked a single question about their feelings of being a burden to each of their healthcare partners. Responses were coded on a 4-point Likert scale (1 = not at all to 4 = very much), with higher scores indicating greater levels of perceived burdensomeness. The approach was guided by previous studies on egocentric network assessment (e.g., Perry & Pescosolido, 2015; Rice et al., 2009).
Analytical Strategy
Because of the nested data structure (e.g., up to three healthcare partners named by each older adult participant), we used multilevel modeling with random intercept and random slope, as suggested by Snijders and colleagues (1995). Data were structured with Level 1 alters (healthcare partners, n = 3402) nested in Level 2 egos (older adult participants, n = 2150) to estimate the predictive model of the Level 1 alter-related outcome (perceived burdensomeness to healthcare partners reported by older adult participants). We examined the direct association of ego and alter characteristics with perceived burdensomeness, as well as their cross-level interactions. The basic equation is summarized as:
Outcomeij = γ00 + γ10 (ego characteristicsij) + γ01 (alter characteristicsij) + γ11 (ego characteristicsij × alter characteristicsij) + μij + εij
A series of multilevel modeling analyses was conducted. First, we tested the random intercept of perceived burdensomeness without any fixed factors (Model 1). This random intercept-only model is useful to calculate the intraclass correlation coefficient that indicates the proportion of variations in perceived burdensomeness accounted for by ego characteristics. If intraclass correlations are greater than .05, multilevel modeling is recommended (Peugh, 2010). A subsequent model with fixed effects was used to examine the role of ego- and alter-level characteristics (Model 2). For the alter-level variables with a significant fixed effect, we examined random slope models by allowing the slopes to vary across egos (Model 3). The random slope was kept in the model when it significantly increased model fit in comparison with the model with only fixed effects. Finally, we examined cross-level interactions between ego and alter variables for all possible combinations (Model 4). A likelihood-ratio test was conducted to compare nested models. We used a two-tailed .05 alpha level for significance. All analyses were performed using STATA version 16.0 (Stata Corp, College Station, TX).
Results
Descriptive Characteristics of the Egos and Alters
Descriptive Characteristics of the Egos and Alters.
A majority (83.3%) of the named healthcare partners (total n = 3402) were family members. The nonfamily category included friends, pastors, paid service workers (e.g., home health workers), and medical professionals. Detailed information on the frequency distribution of the enumerated healthcare partners is depicted in Figure 1. More than half (53.6%) of the healthcare partners were women, and the most frequently endorsed type of support received from healthcare partners was emotional (73.1%), followed by instrumental (50.5%), informational (41.8%), and financial (18.3%). Older adults’ perceived burdensomeness to healthcare partners averaged 1.47 (SD = 0.70), and the score distribution was close to normal (skewness = 1.57, kurtosis = 2.47). Frequencies of the relation of the enumerated healthcare partners (n = 3402). Note. Older adult participants were asked to name up to three individuals whom they usually asked for help on health-related matters or healthcare use (i.e., healthcare partners).
Multilevel Models of Older Adults’ Perceived Burdensomeness to Healthcare Partners
Multilevel Modeling of Older Adults’ Perceived Burdensomeness to Healthcare Partners.
*p < .05. ** p < .01. *** p < .001.
Model 2 examined the fixed effects of ego and alter variables. Among ego characteristics, English-speaking ability (B = −.05, SE = .02, p < .05) and living in a low Korean density area in comparison with living in a high Korean density area (B = −.17, SE = .04, p < .001) were statistically significant. Older individuals who were limited in English and lived in a high Korean density area had higher feelings of burdensomeness. Among alter variables, information support (B = −.07, SE = .03, p < .05) and emotional support (B = −.10, SE = .03, p < .01) were statistically significant. When the types of support that older adults received from their healthcare partners were informational or emotional, perceived burdensomeness was reduced.
We also tested how the effect of informational support and emotional support might vary across egos while estimating the same fixed effects. Informational support did not increase model fit in comparison with the fixed-effects only. However, in Model 3, the random slope model of emotional support showed a better fit (likelihood-ratio test = 18.92, p < .001). The covariance between the intercept and slope was −.12 (SE = .03). In other words, the negative association between emotional support and perceived burdensomeness tended to be weaker as the intercept of perceived burdensomeness decreased.
Finally, cross-level interactions were tested for all possible combinations among alter- and ego-related characteristics. In Model 4, only the interaction between emotional support and chronic medical conditions was statistically significant (B = −.05, SE = .02, p < .05). A simple slope test was performed to further examine how the effect of emotional support on perceived burdensomeness varied with chronic medical conditions. Based on the distribution of scores for chronic medical conditions (M = 1.57, SD = 1.40), the sample was divided into three groups: those with no chronic medical condition, with one or two conditions, or with three or more conditions. In the group free from chronic medical conditions, emotional support was not associated with perceived burdensomeness (B = −.03, SE = .05, p = .484). On the other hand, emotional support was significantly associated with perceived burdensomeness in both groups with chronic medical conditions, with its magnitude notably greater in the group with three or more (B = −.18, SE = .05, p < .001) than in the group with one or two (B = −.10, SE = .03, p < .01). These findings suggest that the negative association between emotional support and perceived burdensomeness is underscored among older adults with multi-comorbidity.
Discussion
Given the healthcare navigation challenges faced by older immigrant populations (Derose et al., 2007; Ponce et al., 2006) and their dependency on informal networks (Choi et al., 2018; Jang, Park et al., 2020; Tsoh et al., 2016), it is important to attend to older immigrants’ psychological experiences with their healthcare partnerships. Using older Korean Americans as a target group and egocentric assessment as a methodological tool, we have examined those who serve as healthcare partners and how ego- and alter-related characteristics are associated with older adults’ perceived burdensomeness toward their healthcare partners. Survey information from older adults and their responses to a name-generating prompt yielded nested data for 2150 egos and 3402 alters, allowing multilevel modeling with the egocentric data.
More than 83% of the healthcare partners named by the present sample of older Korean Americans were family members, with spouse or adult children being a vast majority. This finding is in line with the traditional Korean cultures based on familism (Sung & Song, 2001) and with the literature suggesting older Koreans’ high reliance on family for healthcare needs (Jang, Park et al., 2020; Kwak et al., 2021; Wong et al., 2006). Healthcare partners enumerated after immediate family members were friends, reflecting the convoys of social networks (Antonucci et al., 2014). Although their overall frequency was low, pastors, paid service providers (e.g., home health workers), and medical professionals were also reported. The scores for perceived burdensomeness averaged 1.47 (SD = .70); for over 38% of the named healthcare partners, older adults reported some level of perceived burdensomeness toward them.
Among ego-level variables, English-speaking ability and residence in a low Korean density area were significant for perceived burdensomeness. Given that English proficiency is a critical enabling factor for immigrants’ health service use (Derose et al., 2007; Ponce et al., 2006), it is not surprising that those who speak English better report lower feelings of burdensomeness to their healthcare partners. In addition, as an indicator of acculturation, English-speaking ability is closely linked to socioeconomic advantages and better access to resources and services (Berry, 2003; Fox et al., 2017). Such characteristics may enable older immigrants to become self-sufficient in various dimensions of healthcare navigation such as communication, transportation, finance, information-seeking, and decision-making (Choi et al., 2018; Jang, Park et al., 2020; Tsoh et al., 2016). This finding is also in accordance with the literature demonstrating the inverse relationship of perceived burdensomeness with a sense of independence and autonomy (Cukrowicz et al., 2011; Filiberti et al., 2001; Lutz et al., 2020).
In addition, residence in a low Korean density area, as opposed to a high Korean density area, was associated with a reduced sense of burdensomeness. Living in an area with fewer Korean residents may not only increase the need and desire to learn the language and cultures of the host country, but also reduce dependency on informal support systems (Jang, Park et al., 2020). On the other hand, those with greater linguistic and associated skills may be more likely to live outside cultural enclaves. Overall, these findings reflect the interaction between the person and the environment.
Among alter-level variables, informational and emotional support received from healthcare partners reduced older adults’ feelings of burdensomeness to their healthcare partners. The fact that healthcare partners offered information and advice on health and healthcare, shared concerns, and provided comfort when older adults were sick implies that the interaction between egos and alters is based on trust, respect, and affection (Krause & Shaw, 2000). With transactions involving such types of support, older adults seem to feel comfortable with receiving help, which thus bolsters their self-worth and esteem and lowers their sense of burdensomeness. It is noteworthy that the lowered sense of burdensomeness was observed only in non-instrumental types of support.
In our exploration of cross-level interactions, we found that the link between emotional support and perceived burdensomeness was moderated by chronic medical conditions. High levels of perceived burdensomeness might be expected among older adults with health problems owing to increased demands placed on their healthcare partners. The burden-reducing benefit of emotional support was most notable among older adults with multi-comorbidities. Those with greater health challenges and higher healthcare needs seemed to gain the most benefit from emotional support received from their healthcare partners, thus alleviating their sense of burdensomeness. Given the adverse health and well-being associated with perceived burdensomeness (Cukrowicz et al., 2011; Filiberti et al., 2001; Lutz et al., 2020; Wilson et al., 2005), our findings call attention to the importance of social exchanges of comfort, companionship, consolation, and affection, particularly for those with greater health challenges.
This study’s strengths include its use of an egocentric assessment and multilevel model and its focus on an understudied, underserved ethnic minority group. However, limitations should be noted. First, perceived burdensomeness was measured with a single item that had a restricted range of variance. Given this limitation, caution should be exercised in interpreting statistical significance reported in the present investigation. There has been an emerging effort to develop scales for the construct of perceived burdensomeness, such as the Interpersonal Needs Questionnaire (Van Orden et al., 2012) and the Geriatric Feelings of Burdensomeness Scale (Lutz et al., 2020). Future studies should use a more comprehensive measure with good psychometric properties and score variance, which will allow us to confirm the effects of ego- and alter-level of variables. Also, alter-related attributes should be assessed for detailed information on the quantity and quality of support and other dimensions of interpersonal relationships. It should also be noted that the study’s cross-sectional design and non-probability sampling strategies limited our ability to draw causal inferences and to generalize the findings to a larger population. Future efforts should also consider using dyadic assessment in healthcare partnerships and include diverse racial and ethnic groups. In addition, the key findings of this study might be limited to the first-generation older Korean Americans. Given that the feeling of burdensomeness and its correlates are strongly rooted in the first-generation immigrant cultural context, it is important to examine the same theoretical propositions in second- and third-generation samples in the future.
Despite these limitations, the present study suggests implications for healthcare policies and programs for older ethnic immigrants. Given that those with deprived personal resources (e.g., limited English proficiency) tend to be highly dependent on informal networks for their healthcare needs, resulting in increased feelings of burdensomeness to healthcare partners, they should be prioritized in programs for healthcare navigation assistance. Provision of formal services with language assistance would help older immigrants with limited English proficiency become more self-sufficient in healthcare use and gain a sense of independence and dignity congruent with their culturally prescribed role for older adults. Given the context of collectivism and familism, family involvement in older Asians’ healthcare has often been regarded as a cultural norm. However, our findings shed light on older adults’ psychological responses to receiving help in the context of healthcare use, highlighting the importance of fostering their independence and quality of support. The psychological burden associated with feelings of guilt due to overdependence on informal support systems suggests that healthcare programs and policies should offer accessible options for healthcare assistance for diverse populations.
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was supported by National Institute on Aging; R01AG047106.
