Substance Use in Relation to Mental Illness: A Study of Mexican-Origin Latinos with Schizophrenia and Their Family Members

Abstract

Little is known about family context and substance use behaviors among Latinos with schizophrenia. Learning about patient and family caregiver perceptions of use is critical to our understanding of how best to support these vulnerable patients and family caregivers. This study explored perceptions of substance use in relation to mental illness among Latinos primarily of Mexican origin with schizophrenia and their family caregivers. Semistructured interviews were conducted with 34 participants (20 family caregivers; 14 patients) with direct and indirect substance use experience, in their preferred language. Data were analyzed using thematic analysis, which consisted of comparing codes across and within patient and family caregiver transcripts. Findings revealed that substance use affected well-being, particularly patient recovery and caregiver burden. Strategies to address well-being included limiting substance use, being vigilant about patient use, and communicating the negative impact of use. The environmental impact and stigma of substance use were major contextual challenges. Patients addressed these by limiting their socialization. Family social context was important to how substance use was perceived and managed by patients and caregivers. As such, treatment models should consider a holistic perspective that incorporates family context when addressing substance use among Latinos with schizophrenia.

Substance misuse is prevalent among individuals with serious mental illness and is a major obstacle to recovery. Studies have found that nearly 50 percent of individuals with schizophrenia have a substance use disorder (Hunt et al., 2018; Sara et al., 2014). Individuals with schizophrenia can experience increased sensitivity to psychoactive substances that can exacerbate symptoms, interfere with treatment adherence, and disrupt stability (Khokhar et al., 2018). Relapse is common, leading to high levels of service utilization and costs. Moreover, substance use places a considerable burden on family members caring for loved ones with these conditions (Barrowclough et al., 2005; Kaya & Öz, 2019; Labrum, 2018; Niv et al., 2007; Townsend et al., 2006).

Social context is a relevant factor in substance use perceptions, norms, and behaviors that may influence processes involved in substance use (Hunter-Reel et al., 2009). Few studies have examined substance use and family context among individuals with schizophrenia. Those studies that have examined family context primarily focused on family member outcomes (Barrowclough et al., 2005; Labrum, 2018; Niv et al., 2007; Townsend et al., 2006). One study found that individuals with a serious mental illness and substance use disorder had low levels of family satisfaction (Dixon et al., 1995). However, most studies examined family member and patient outcomes separately and not simultaneously, thereby limiting our understanding of important family processes that may be associated with substance use behavior.

Among Latinos, family social context may be particularly relevant given their strong family orientation (Hernandez & Barrio, 2017; Hernandez et al., 2019). Family cohesion is a protective factor for substance use among Latino immigrants (Dillon et al., 2012). Moreover, Latinos with serious mental illness are more likely to live with family compared with other groups (Barrio et al., 2003), further demonstrating the salience of examining family context in this group. Importantly, little is known about co-occurring mental illness and substance use among low-acculturated Latinos (Alegría et al., 2019) and specifically, families’ beliefs and responses to substance use among Latinos with schizophrenia, an underserved and under-researched group (López et al., 2012). Knowledge about how patients and family caregivers perceive and address this critical issue can inform how substance use problems are treated among Latinos with schizophrenia, which can benefit social work providers working with these patients and families.

This qualitative study explored perceptions of substance use among Latinos with schizophrenia and their family caregivers. Specifically, it focused on the following question: “How do Latinos in treatment for schizophrenia and their family caregivers perceive substance use in relation to mental illness?”

Method

Participants were part of a controlled family intervention development study for Latino family members of individuals with schizophrenia receiving community-based mental health services (Barrio & Yamada, 2010). Latino outpatient adults diagnosed with schizophrenia were recruited from two public outpatient community mental health centers in Southern California and asked to identify a key family member to participate in family-focused treatment. Patients named a family member whom they considered to be most involved in their care and whom they relied on most for ongoing support. Patients who met diagnostic criteria for alcohol or drug dependence during the previous six months were excluded from the study (Barrio & Yamada, 2010; Hernandez et al., 2013). However, report of alcohol or other substance use did not exclude individuals from participating if they did not meet DSM-IV diagnostic threshold criteria for dependence (American Psychiatric Association, 1994). This accords with treatment at the community mental health centers, which provide services based on patients’ mental illness as the primary diagnosis.

Substudy 1

During the intervention, several themes related to recovery and treatment emerged, which led to another study. In 2013, intervention group participants (n = 27 dyads) were contacted and invited to participate in a substudy that examined patient and family member perceptions of treatment outcomes, including barriers to treatment and recovery. These outcomes were not specific to the family intervention but were broadened to include outpatient treatment, usually consisting of medication, psychosocial, and case management services. Data were collected from 14 patients and 20 family members, for 34 participants. Six patients did not participate; however, their family caregiver was included to provide additional insight on the family experience. Semistructured interviews were conducted with participants in their preferred language by a bilingual–bicultural interviewer. Most requested the interview take place at their home (n = 29; 85 percent). The majority (n = 8; 57 percent) of patients chose to be interviewed with their family caregiver. Participants were asked about challenges and facilitators of treatment, such as: “What makes treatment difficult for you?” Transcripts were analyzed for mentions of legal (e.g., alcohol, tobacco) or illegal (e.g., cannabis, which was illegal during the study) substance use. Several participants disclosed that substance use was or had been a major obstacle in their treatment.

Substudy 2

Using an inductive approach, a second substudy took place in 2015 to examine salient themes that emerged from the first substudy; in particular, we found that substance use was a prominent theme among participants. Questions on perceptions of substance use and mental health among participants, regardless of substance use history, were included. For the second substudy, the first substudy participants (N = 34) were invited. The study featured 24 participants: 11 patients and 13 family members. Semistructured interviews were conducted with participants in their preferred language by bilingual–bicultural interviewers. Most participants completed interviews at their homes (n = 21; 88 percent), and most patients (n = 6; 55 percent) chose to be interviewed individually. Questions exploring substance use (legal or illegal) were posed with follow-up probes to capture participants’ views on substance use.

For both substudies, we sampled until no new concepts emerged, indicating saturation was reached. Interviews took approximately 60 to 90 minutes. All participants provided informed consent. The study was approved by a university institutional review board.

Our extensive clinical and research experience with Latinos and bilingual–bicultural backgrounds facilitated the analysis process. Substudy 2 was informed by preliminary findings of substudy 1; data for both studies were brought together and analyzed using thematic analysis (Boyatzis, 1998), which consisted of comparing codes across and within patient and family member transcripts. After team members independently coded a subset of transcripts, results were compared to reach consensus in the development of a codebook. The resulting themes were used to code the remaining transcripts. Memo writing was used throughout the analysis process to document decisions regarding theme development. We used ATLAS.ti version 7 to code and organize the data.

Results

Based on participant report (34 participants, including 20 family caregivers and 14 patients, provided data on 20 patients), during the first substudy, 10 (50 percent) patients had past or current use of substances, eight (40 percent) had no history of substance use, and two (10 percent) did not comment or disclose substance use. Like other studies involving Latinos with schizophrenia (Barrio et al., 2003), all patients interviewed during the first substudy and all except one (n = 10; 91 percent) during the second substudy lived with their key family member. Participants who did not have direct substance use experience were interviewed because their perceptions as individuals with schizophrenia or family members could provide insight into cultural beliefs regarding substance use, which can broaden our understanding of this complex issue.

Substudy 1

Table 1 presents participant demographic characteristics. The majority of participants were Latinos of Mexican origin, which is consistent with the Latino population in Southern California. Most patients were male with an average age of 38 years (SD = 12.00) and had a length of illness of 16.38 years (SD = 11.72). Most patients were U.S. born and spoke English. Most caregivers were mothers with an average age of 59 years (SD = 8.48). Most family caregivers were born in Mexico and primarily spoke Spanish; thus, caregivers mostly had low acculturation.

Table 1:

Patient and Family Caregiver Characteristics

	First Follow-Up				Second Follow-Up
	Patient (n = 14)		Family (n = 20)		Patient (n = 11)		Family (n = 13)
Characteristic	n (%)	M (SD)	n (%)	M (SD)	n (%)	M (SD)	n (%)	M (SD)
Gender
Male	11 (79)		4 (20)		9 (82)		2 (15)
Age (years)		38 (12.00)		59 (8.48)		40 (13.03)		61 (7.82)
Marital status
Single, never married	12 (86)		0		9 (82)		0
Married or partnered	1 (7)		15 (75)		1 (9)		9 (69)
Separated, divorced, or widowed	1 (7)		5 (25)		1 (9)		4 (31)
Education, years		11.50 (1.65)		7.13 (4.03)		11.55 (1.51)		5.58 (3.14)
Length of illness, yearsa		16.38 (11.72)				20.20 (12.18)
Family relation to patient
Mother			12 (60)				9 (69)
Father			3 (15)				2 (15)
Spouse			2 (10)				0
Otherb			3 (15)				2 (16)
Country of birth
United States	8 (57)		1 (5)		6 (55)		0
Mexico	4 (29)		18 (90)		4 (36)		12 (92)
El Salvador	2 (14)		1 (5)		1 (9)		1 (8)
Interview language
English	8 (57)		2 (10)		8 (73)		2 (15)
Spanish	6 (43)		18 (90)		3 (27)		11 (85)

^aData missing for one patient in first and second follow-up.

^bAunt, daughter, or grandmother.

Substudy 2

Given that participants in the second substudy had been part of the first substudy, demographic characteristics (Table 1) were similar. Most patients were male with an average age of 40 years (SD = 13.03). Length of illness was 20.20 years (SD = 12.18). Most patients were U.S. born and spoke English. Most caregivers were mothers with an average age of 61 years (SD = 7.82). In addition, most family caregivers were born in Mexico and primarily spoke Spanish.

Themes for Substudies 1 and 2

Themes for both studies were combined to present an overall understanding of substance use perceptions among participants. Themes fell under two main categories: well-being and salience of contextual factors. Table 2 presents themes that were identified by patients and caregivers. For themes that were identified by both patients and caregivers, there were no differences in how these were perceived by each. Patients and caregivers alike viewed substance use negatively, highlighting its detrimental effects and challenges to their well-being. Specifically, caregivers noted that challenges brought about by caregiving led to burden. Both caregivers and patients recognized that substance use impacted recovery. They identified several strategies to address these challenges. Patients limited their use and caregivers noted vigilance and communication of negative consequences. Additionally, contextual factors, including social and environmental impact, were identified as a major challenge by patients and caregivers. Caregivers also mentioned stigma as a contextual challenge. Patients addressed contextual challenges by limiting socialization.

Table 2:

Substance Use in Relation to Mental Illness: Themes Identified by Latino Patients and Family Caregivers

Theme	Patient	Family
Well-being
Challenges
Burden	No	Yes
Impact on patient recovery	Yes	Yes
Strategies
Limit use	Yes	No
Vigilance regarding patient use	No	Yes
Communication about negative consequences of use	No	Yes
Contextual factors
Challenges
Social and environmental impact	Yes	Yes
Substance use stigma	No	Yes
Strategies
Limit socialization	Yes	No

Well-Being

Challenges

Burden

Family caregivers experienced burden when their loved ones used substances. Importantly, the degree of concern resulting in burden was mainly found among caregivers of patients who used illegal substances or had problematic alcohol use. A mother said, “When he is depressed or anxious . . . or his body needs cigarettes, or what I told you about [drugs], it is very difficult for me to deal with him.” Interestingly, this caregiver seldom used the word “drugs” and appeared concerned about openly discussing this issue. A grandmother described how she asked her grandson to leave her home because his substance use led him to steal from her. She said, “I am very patient. . . . He was here for five years. Until he began to steal from me; that is something that I do not tolerate.” This caregiver set limits for the patient’s behavior that may have helped address her caregiving responsibilities.

Impact on Patient Recovery

Caregivers were also concerned about how substance use could interfere with patients’ recovery. Through experience with their loved one’s substance use, they had gained knowledge of its negative effects on their loved one’s mental illness. A mother talked about previous relapses related to her son’s substance use. She said, “I don’t know what type of wine or beer he would drink. . . . It is difficult for the medication to work with those types of drinks. . . . Those were the [reasons for the] relapses.” Similarly, a father said:

I was noticing that he was relapsing because he was drinking more alcohol. . . . If he does not take medication frequently and he has alcohol, alcohol will win. . . . Then he does not know that he is very sick again.

This father described serious concern about his son’s alcohol use and its effect on his ability to acknowledge his mental illness and make appropriate decisions for his well-being.

Similarly, some patients reflected on past experiences with substance use and its impact on their recovery. A patient recognized his alcohol use had led to several relapses: “No more, because sometimes I feel bad, and if I drink more I will relapse, and I don’t want to relapse.” This patient’s insight regarding the negative impact of alcohol use in his recovery led to a change in his alcohol use behavior, suggesting that patients needed to undergo earlier experiential processes of change to develop awareness of their substance use behaviors before taking action.

Strategies

Limit Use

Patients who had a history of substance use recognized the importance of limiting their use to achieve stability. For instance, as one patient said, “It’s hard . . . at first to quit drinking, . . . but after a while, depending on who helps you, . . . you don’t need it.”

A patient described his interest in quitting smoking cigarettes. He recalled past successful attempts and hoped that he could again stop smoking because he was concerned it could affect his health. He said, “Hopefully I would just stop again like I did last time. I stopped cold turkey . . . and I lasted seven years, . . . so hopefully . . . I again commit to stop smoking.” However, this patient described how his father also smoked cigarettes and it seemed normalized in his family, which may influence his commitment to limit his use. He said that his family was concerned, but “to a point, yes, but not really ’cause my dad smokes; he’s smoked all his life.”

Vigilance Regarding Patient Use

Caregivers whose loved ones previously or currently used substances talked about their vigilance regarding patients’ substance use. A father who kept close watch on his son’s use said, “Take care of him that . . . if he drinks, he just doesn’t drink that much. He shouldn’t, but sometimes he does, and make sure that he doesn’t drink that much so it will not affect him.” Similarly, another father talked about his efforts to help his son limit his cigarette use. He said:

He was smoking more than a pack a day, so what I do now is I give him eight cigarettes in a day, and if he needs another one at the end of the day or at the end of the night, I would give him one more, but I cut it in half or more than half. Good thing is that he listens to me, and I can help him.

This father was taking it upon himself to monitor his son’s use of cigarettes.

Another caregiver whose loved one had a history of substance use had support from her adult daughter who lived nearby. The caregiver, the patient’s mother, described an incident when she was not home, and her daughter called her to come home because the patient had been drinking and was exhibiting inappropriate behavior. The caregiver said, “Being united and communicating what is happening, that is what has helped.” These comments reflect the important role of family members in supporting their loved one’s well-being.

Communication about Negative Consequences of Use

Concerns about patients’ use and its potential negative effects led caregivers to frequently remind patients not to consume substances. For instance, a mother described asking her son not to use cannabis at home:

I saw that he was smoking here, and I said, “You are not going to do that here . . . because you have an illness and then you are still adding more to it,” and he would tell me that it was meant to relax him . . . and no, he has not done that since . . . here at home.

Similarly, a father said, “He gets very excited when he has a beer . . . and I tell him, ‘Don’t drink, your medicine won’t help you.’” However, this father also struggled to limit his son’s use. He said, “It is ugly to have to call it to his attention frequently . . . or go and take away his drink. . . . It must make him feel bad that I take away his drink.”

Contextual Factors

Challenges

Social and Environmental Impact

Patients described how their environment influenced their substance use behaviors. Socialization with family and peers often involved substance use, particularly alcohol. Patients talked about expectations that social gatherings meant drinking would be involved. A patient said, “All close aunts, friends, and relatives, so I pretty much . . . grew up around it. ‘You want a beer?’ ‘No.’ Until one day, ‘Sure, why not.’”

Other triggers were found in hospital settings, where smoking cigarettes was prevalent. A patient said:

It seems that every time I’m hospitalized, I end up smoking, ’cause in the institutions they provide cigarettes. . . . The time I was there, I lasted three days before I was tempted to smoke, but by the fourth day, forget it, I started smoking.

Caregivers also talked about the environmental impact of substance use, particularly alcohol use. For instance, a father talked about his history of alcohol use and how his son’s illness led him to examine his behavior. He said:

It’s not easy to live with me, it took me years and years and years. When he got sick, it’s when I stopped drinking. I said, “Well, I’ll be sober so I can take him to the hospital.” If I’m drunk, I won’t be able to do that, so that helped me to stop drinking.

Substance Use Stigma

A distinction was found regarding substance use stigma between those with direct experience with substance use and those without direct experience. Generally, caregivers perceived that schizophrenia was an illness, but substance use was a behavior that individuals could control. As such, these differences in attribution led to less tolerance and more blame for substance use behavior and consequent problems, particularly among those with no direct experience. For instance, a caregiver with no direct experience said, “People that have a mental illness . . . they don’t have control over that, and people who are using substances . . . they have a choice to stop it and be well.” Some caregivers also talked about stigma and criticism that they experienced from extended family or friends who believed their loved one’s mental illness was caused by substance use. For instance, a caregiver said, “They think that people are sick because they are using drugs. They don’t know that it was brought upon naturally.” This caregiver’s knowledge of schizophrenia as a brain disorder may be due to her participation in a family psychoeducation group.

However, a caregiver who had direct experience with substance use said:

It is so common nowadays. . . . When I was young, I remember that somebody was using marijuana. “Oh wow,” it was a big . . . you know . . . “Oh wow, look at that family.” . . . But it depends on who’s talking or what they have seen.

This caregiver described how others in his community negatively perceived substance use, including shaming the family of those who used substances. However, his direct experience as a caregiver for someone who used substances may have influenced his perceptions of substance use. It may have helped him temper his beliefs regarding substance use and played a role in how he addressed his loved one’s use.

Strategy: Limit Socialization

Although both patients and caregivers noted that environment could be a factor in substance use, only patients talked about the importance of limiting their socialization to avoid environments that might be conducive to substance use. A patient said, “I don’t go out as much, or very rarely do I go out. . . . They [friends] see me, I don’t drink or nothing . . . so they look at me and keep their distance.” Other patients had concerns with how socialization outside of their immediate family could lead to substance use. A patient who did not want to be involved with a friend who was drinking stopped going out with him. This patient had past experiences with relapse due to substance use, and he did not want to be around others who were using. He said, “I would always go to his house, but I saw that he also declined. He drinks and smokes. . . . I would look at my life, and I no longer wanted to hang out with him.” These patients appeared to have good insight regarding their need to avoid substances to maintain their stability.

Discussion

Given the limited number of studies addressing substance use among Latinos with schizophrenia and this group’s underutilization of services (Barrio et al., 2003; López et al., 2012), learning about patient and family caregiver perceptions regarding use can inform potential targets for treatment. Findings reveal that contextual factors were an important component of how Latino patients and caregivers perceived and managed substance use problems. Family involvement in addressing substance use appeared to dissuade patient substance use. Despite this support, some patients struggled to manage their substance use. In addition, for some families, providing support to patients with substance use problems, especially when related to illegal drugs or alcohol, resulted in caregiving burden. Substance use affects both patients and caregivers, and treatment approaches need to consider the potential benefits of a holistic framework that incorporates family members when addressing substance use problems among Latinos.

Environmental influences in the form of peer or social networks have been associated with substance use behaviors in previous studies (McCrady, 2006). Patients were concerned with how social and environmental triggers could influence their substance use, which resulted in them limiting their socialization. Although this strategy may benefit patients by reducing their exposure to potential triggers, if not properly calibrated, it may inhibit other positive forms of socialization for fear of negative outcomes. Patients could be supported in their desire to change their substance use behavior by developing skills that allow them to socialize while maintaining their substance use goals (O’Connell et al., 2020). For some patients, limiting socialization meant not socializing outside of the family system. This finding is congruent with the salience of family in the social context of Latinos (Landale & Oropesa, 2007). Notably, environmental triggers were also present in some family systems and showed the complexity and potential challenges of changing substance use behavior.

Caregivers tended to view substance use negatively, particularly among those with no substance use history, which resulted in them blaming individuals who had substance use problems. These concerns may contribute to negative outcomes by limiting family caregivers and patients’ willingness to disclose their illness and potentially receive support from others. Other studies have found negative attributions of substance use by family caregivers of individuals with serious mental illness (Niv et al., 2007). Moreover, negative attributions may have been influenced by cultural norms that stigmatize substance use, particularly among low-acculturated Latinos (Flórez et al., 2015) like most caregivers in our study. The potential for poor family functioning as a result of these negative perceptions may lead to strain for patients and caregivers that may affect outcomes.

Caregivers had awareness of the impact of substance use on their loved one’s mental illness. Perhaps because these caregivers had participated in a family intervention, they had a keen understanding of the importance of treatment adherence and the impact of substance use on recovery. Caregivers were often vigilant and directly involved in limiting their loved one’s use. Studies have found that family involvement is associated with decreased substance use among Latinos (Caetano et al., 2017; Cano et al., 2018; Wagner et al., 2010). Having helping relationships that support healthy behaviors is important in an individual’s process of behavior change (DiClemente, 2018). In other words, these supportive relationships can facilitate a patient’s decision to regulate or cease substance use behavior. It is also important to note that increased support may lead to more responsibility for caregivers that may increase burden. Depending on the family’s resources, substance use may weaken the Latino family’s protective factors and affect the family’s ability to provide support for the patient (Canino et al., 2008). For instance, because of drug use, some caregivers asked their loved ones to leave their home.

Findings should be considered in light of several limitations. Although our study focused on exploring substance use perceptions, substance use was not formally assessed to examine factors such as frequency or severity of use. In addition, substance use included legal and illegal substances. Future studies should consider examining if perceptions vary by this factor. Some participants did not have direct experience with substance use. However, they were included because they provided valuable insights on substance use perceptions among Latino patients with schizophrenia and their caregivers. In addition, caregivers had participated in a family-based intervention that may have influenced their knowledge of substance use consequences and patient outcomes. Latinos are a heterogenous group; therefore, our sample of primarily Mexican-origin Latinos may not be generalizable to other Latino groups. However, these findings may be relevant to other groups with a strong family orientation. Last, because our sample did not include other racial or ethnic groups, we were not able to compare our findings with other groups and thereby examine the unique Latino experience. However, it is important to remember that because Latinos with serious mental illness are more likely to live with their family compared with other racial or ethnic groups with serious mental illness, examining Latinos’ perspectives on substance use is critical to understanding possible challenges and strengths that may be present in this underserved group. Therefore, although our study presents themes that other groups may share, it also highlights the salience of family involvement and the role that it plays with patient behavior.

Our findings shed light on family dynamics in Latino culture and have relevant implications for social work practice. Patients in our study did not meet diagnostic criteria for substance use dependence, and yet several had problems with substance use. Providers should consider how even moderate substance use can create problems for patient and family outcomes. Although some patients managed their substance use, others struggled to determine how to address their use and seemed to be in the early stages of change. Interventions incorporating motivational interviewing techniques can be beneficial for individuals with serious mental illness and substance use problems, particularly if such techniques are modified to address the needs of patients with serious mental illness (Barrowclough et al., 2006; DiClemente et al., 2008). Given that family members are involved in the lives of patients, helping them support patients is important. A study found that teaching motivational interviewing to family caregivers of patients with recent onset schizophrenia and cannabis use resulted in lower quantity and frequency of cannabis use by patients (Smeerdijk et al., 2015) and greater caregiver empathy toward patients (Smeerdijk et al., 2014). Other family-based interventions (Mueser et al., 2013) for families caring for a loved one with serious mental illness and substance use have shown improvement in patients’ symptoms and functioning. Notably, these studies did not have substantial ethnic minority samples. As such, more research is needed to examine the unique family dynamics and environmental factors that need to be considered when providing such interventions to these groups.

 

Mercedes Hernandez, PhD, is assistant professor, Steve Hicks School of Social Work, University of Texas at Austin, Austin, Texas 78712, USA; email: mercedeh@utexas.edu.

Concepcion Barrio, PhD, is associate professor, Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, CA, USA.

Paula Helu-Brown, PhD, is assistant professor, Department of Psychology, Mount Saint Mary’s University, Los Angeles, CA, USA.

Caroline Lim, PhD, is assistant professor, School of Social Work, California State University–San Bernardino, San Bernardino, CA, USA.

Lizbeth Gaona, PhD, is assistant professor, College of Behavioral & Social Sciences, California Baptist University, Riverside, CA, USA.

 

Mercedes Hernandez received support from the National Institute of Mental Health (R36 MH102077) and Concepcion Barrio received support from the National Institute of Mental Health (R34 MH076087).