Social pathways to care: how community-based network ties shape the health care response of individuals with mental health problems

The onset of mental health problems presents individuals and society with three unique dilemmas. First, with no physical manifestations, great heterogeneity, few symptoms distinct from behavioral or biological repertories, and no measurable signs to bring to diagnosis, recognizing the problem is daunting for individuals and mental health providers alike [1]. Second, the persistence of public, personal, and provider-based stigma surrounding mental health [2]; the difficulties that individuals from diverse cultures or identities groups face in care [3]; and the documented fear of reprisal that medical providers, themselves, report in facing their own mental health problems [4] all diminish the public’s enthusiasm for seeking formal mental health care. Third, even if individuals want such care, the perennial mental health workforce shortage [5]; efforts to continually pass additional legislation to enforce parity efforts and equitable reimbursement for sustained mental health care (e.g., proposed H.R.1364—Parity Enforcement Act of 2021; see [6, 7]); and the diversion of the majority of U.S. mental health research funds from services, stigma and treatment innovation to a failed search for biomarkers [8] makes the search for care difficult. In essence, the science, the public, and the system all conspire to produce high levels of unmet need. Countering this discouraging profile are the facts that many treatments work [9]; mental health literacy in the public has improved [10]; frameworks, research and interventions to understand and reduce mental health disparities have grown [11‐13]; legislation to prioritize physician mental health has passed [4]; and anti-stigma efforts have documented modest but real effects [14‐16].

This summary of negative and positive conditions in the mental health landscape reveals a great deal of complexity and uncertainty surrounding the response to onset, care, and outcome. Yet, for the most part, the traditional approach to understanding who eventually gets into care focuses on individual factors and a “one-off event” [17: 140]. Individuals’ assessment and beliefs, their knowledge of insurance and access, and their social characteristics are the mainstay of research [18]. More recently, however, theoretical efforts have expanded to consider how these critical aspects are embedded in communities, both public and professional, where social interactions are the mechanism through which problems are recognized and services are provided. With the response to onset seen as a process that is often “peopled”, the Network Episode Model (NEM) [19, 20] represents one effort. Developed in direct response to the dominant individually focused, use-no use models, the NEM contextualized illness response by suggesting two key theoretical differences. First, tracing the entire set of actions, from discussion with family and friends to consultation with lay advisors to entering the healthcare system, shifts the focus to patterns or pathways to care. Second, by emphasizing that recognizing health problems, especially mental health problems, is difficult even for the educated, the role of social network ties become more central. Individuals in family, work, school, or other social settings hold (mis)knowledge, beliefs, and resources that can facilitate or delay entry into formal mental health care. Further, social network influence likely varies by the structure of ties (e.g., number and frequency), which provide the degree or “push” or influence, in combination with cultural scripts that suggest whether formal mental health care systems can be trusted.

Research employing the NEM has documented different patterns and pathways to care, diverse mental health care experiences (even for anxiety, depression, and mania/hypomania, the most common mental health concerns) and varying outcomes [21‐25]. For example, among older individuals, coercion into mental health care was rare, while “muddling through” predominated [22]. Among African American youth, access to mental health services has been shown to be a relational and socially embedded process [26]. Different pathways were associated with diverse outcomes, including diagnosis, trusting working alliances, completing treatment protocols, or post-treatment adherence [21, 27‐30]. Yet, for individuals with mental illness, the large and broadly functional social networks reported as they enter formal mental health care dropped over time, dramatically so compared to general population shifts in the same period [29]. Even online, gamers with more depressive symptoms may seek help by leveraging their networks via online channels [31]. As Boydell et al. [32: 184] note, networked pathways to care appear to be critical to understanding “how services and supports are received and experienced over time” (original emphasis).

Attention to matters of process, culture, networks, and inequality in health and health care is hardly new in sociomedical science (e.g., [33‐36]). How individuals perceive the healthcare systems and its providers, particularly whether they trust physicians, has been a mainstay of understanding service use (e.g., [37‐39]). The NEM made no claim of originality. It more intentionally conceptualized formal mental health care utilization as the result of the intersection of community and treatment systems, building a stronger bridge between the “social” and the “psychiatric” [40, 41]. Perhaps no surprise, then, that mental health care utilization researchers who focus on cultural minorities, cultures outside of the West, or other economically and socially disadvantaged populations often used the NEM [42]. For example, among Chinese Americans, conflict in the family network was associated with mental health care utilization [43], but traditional measures of family support were not (also [44, 45] on Korean Americans). Among African Americans, the contrast between kin networks being critical in everyday life but locked out from participation in community mental health centers translated into non-retention in care [46]. Several studies documented how migrants selectively activated “compatriots” (e.g., those with similar experiences), relying on them more heavily as their mental health career progressed and reducing the time to entering formal mental health care [25, 47, 48]. More generally, larger social networks resulted in greater utilization of mental health care among homeless individuals [49], and both youth and older adults [32, 50‐52].

However, networks do not always facilitate utilization, as research on the “dark side” of social ties has documented [53]. In some contexts, networks may constrain behaviors and discourage seeking both formal and informal mental health care. For example, among those in Puerto Rico, larger, more supportive networks diminished the uptake of care-seeking patterns that included mental health providers [54] (also [55] on prenatal care). Finally, individuals often employ care providers and practices that never reach the formal mental health care system [56‐59]. As Alegria et al. [13] conclude, community, family, friends, and individuals may encourage or block individuals’ referral, entry, or retention in mental health care or substance abuse treatment.

In total, the last 2 decades have compiled a promising and solid body of research that not only offers new insights but provides novel directions for formal and informal mental health care and interventions designed to facilitate pathways to care. Yet, comparatively speaking, little research directly ties community network cultures to individuals’ mental health care-seeking. In some cases (e.g., using statistics for organizational planning), the deep dive into process and communities is not required. However, when the target is to improve entry, retention, and effectiveness, looking to networks continues to be promising. Network data are hard to come by, because research designs that collect such data are resource and time intensive. On the quantitative side, they take more time to collect and require novel analytic tools beyond standard statistical approaches requiring independence of cases [41, 60]. On the qualitative side, efforts to precisely guide qualitative studies are rare and quite recent [61‐64]. As Wyke et al. [65: 82–83] conclude, “The idea of a social network as the fundamental unit of analysis is attractive but is easier to articulate than to operationalize.”

Mental health is an important concern in Indiana, where access and utilization of formal mental health care are limited and differential relative to characteristics, such as age, race, gender, rurality, and insurance coverage. A Kaiser Family Foundation fact sheet on mental health in Indiana reports levels of the three most common mental health concerns (anxiety, depression, and mania/hypomania) at levels slightly lower than but not significantly different from those for the United States overall in 2021 (28.6% in Indiana, 31.6% for the US, [66]) That same report indicates that a slightly higher percentage of Indiana residents needing formal mental health care reported not receiving those services relative to levels for the entire US (29.3% v. 26.9%, [66]). Health disparities are a significant problem in Indiana with about a third of Indiana residents reporting common mental health concerns and about a third of those reporting unmet need. Furthermore, the House Committee on Ways and Means reported that in 2020 Indiana had lower access to healthcare, rates of health insurance, average life expectancy, and median household income than the United States overall. Health inequities are more pronounced in areas of Indiana with higher proportions of non-white residents [67, see also 68, 69]. This study explores pathways to mental health care. In light of the clear presence of health disparities based on education, socioeconomic status, insurance status, race, and ethnicity a study that explores such pathways from the point of view of key characteristics associated with health disparities in the United States stands to provide unique information for policy change.

Table 2 presents the basic descriptive data on perceived mental health problems, social networks, and source of care. Of the four hundred individuals reported that they or someone they knew felt they had a mental health or emotional problem, most (77.1%) reported the problem as moderate or very serious. Respondents most frequently reported talking to relatives (74.0%); friends (67.3%); or a physician, physician’s assistant, nurse, nurse practitioner, or community health worker (49.5%) about their mental health or emotional problem. Respondents reported social networks with an average of about six unique members named across name generators (5.7), strong relationships with network members (average tie strength of 8.1 on a 1–10 scale), and that about half of their network members (50.4%) trusted doctors very much.

Our ability to understand the role that “the social” plays in mental illness is undermined, at least in part, by a reliance on a view that focuses on the individual alone. While sociodemographic categories tap into the social and cultural lives of individuals, providing critical insights, they are less well equipped to see how those factors operate to create inequalities. Research in many areas, including employment, migration and immigration, and birth control, has established that human connections are often those active ingredients creating disparities, even for health behavior change [71]. Network research, which traces the human connections that surround individuals and stand as the sources of formal and informal care than can be activated during a health crisis, may offer novel findings. Yet, because network data collection is messy, complicated, and more time-consuming than the traditional quantitative or qualitative approaches [60], social network studies are more rare. However, we argue that the Network Episode Model may be a better theoretical match, because the search for care, especially for mental health problems, also appears to be messy and complicated.

The findings reported here are far from meeting the immensity of that challenge. However, we attempted to contextualize the search for mental health care by connecting individuals to whom they consulted about their problem and enumerating the structure and cultural content of those network ties. In this representative sample, we find that almost 15% of individuals reported problem recognition by self or other and their response pathways varied from doing nothing (a very small number) to activating lay and professional ties across many sectors of the community, including family, friends, coworkers, and general and specialty medical providers. Both networks and severity propel individuals into care-seeking behavior. While those with strong ties are likely to seek care of some sort, having larger networks translates into accessing a richer set of options. Cultural beliefs in those networks matter to some extent, since networks with strong trust in doctors are associated with pathways that access the general and specialty medical sectors. Individuals from the majority white population, and those with higher levels are education, report pathways to the specialty sector, signaling a continued disparity.

Of course, this study is not without problems that raise questions about disparities. In our representative sample, we find few race effects. While it may be unsurprising that minority population respondents are less likely to report pathways that include psychiatric care providers than are majority individuals, there are both sampling and prevalence limits here. First, even with a population-based sample of nearly 3000 individuals, we had only a small group that reported self- or other-perceived need, as indicated above. Second, this is compounded by fielding the study in a state that has about 10% black population and another 6% other races and/or ethnicities. Only an oversample would offer a more solid basis for examining race and ethnic disparities and the social processes involved in the search for mental health care. However, in a state that is highly rural 78% of counties, and where education ranks 46th nationally in adults with a college degree, we find both residence and education in operation to some extent. Finally, the stem of the mental health/emotional problem question does not distinguish between common or severe mental health problems or distinguish between individuals who were self-aware or who were nudged, or even coerced, by others to recognize and act on their mental health issues. We know that pathways, and network effects on pathways, are shaped by whether coercion or agency is at work in seeking care [22, 54]. Finally, as noted earlier, we have data from respondents on their social network members. We cannot ascertain whether respondents’ self-reports are accurate interpretations of the beliefs and opinions of their network ties. Ultimately, the NEM may be best suited to a mixed method approach or to one that includes oversamples of minority populations [72]. To that end, a mixed-methods study involving qualitative interviews exploring pathways to care, particularly among minority populations is underway and subsequent survey administrations will feature oversamples of minority populations. Subsequent studies will also disaggregate respondents according to assessments of depression, anxiety, and mania/hypomania.

Nevertheless, our goal here was to reconsider the role of “the social” in understanding the lay and professional resources that individuals use over the course of seeking care for a mental health problem by looking to the structure and culture of their social networks. We have established that there are unique pathways to mental health care. Further, social networks and the nature of the problem matter most in the response to mental health problems. Having stronger ties translates into eliciting a response, but only having many ties and ones that support medical solutions result in activating a lot of helpers, including those in the specialty mental health sector. As we see social ties exert influence, it becomes imperative to think about utilization as a community response, even if we think of “small worlds” within communities. In turn, policy and services designed to alleviate the burden of mental health problems might be more effective if they shift from a focus on individuals to a focus on their communities.