Unmet Needs for Mental Health Services for Latino Older Adults: Perspectives from Consumers, Family Members, Advocates, and Service Providers

Abstract

This study qualitatively assessed the need for mental health services among Latino older adults in San Diego, California. The primary mental health issue was depression. Primary organizational barriers to accessing services were language and cultural barriers secondary to a lack of translators, dearth of information on available services, and scarcity of providers representative of the Latino community. Other challenges included a lack of transportation and housing, and the need for socialization and social support. Latino older adults experienced their unmet needs in ways associated with their cultural background and minority status. Age- and culturally-appropriate services are needed to overcome these barriers.

INTRODUCTION

The Latino older adult population is one of the fastest growing segments of elderly Americans (U.S. Census Bureau, 2003; Min, 2005). The number of Spanish speaking individuals residing in the United States is also increasing rapidly. Approximately 90% of elderly Latinos (age 65 and older) speak Spanish in their homes (Beyene, Becker, and Mayen, 2002). As the population of Latino older adults increases, we will see a concomitant increase in the number of Latino patients who will need psychiatric and rehabilitative care. Current programs delivering mental health services, based on Eurocentric behavioral models, often lack cultural relevance for Latinos seeking treatment (Sue, 2003; U.S. Department of Health and Human Services, 2001), especially if they are low-acculturated Spanish-speaking immigrants (Barrio, 2000).

Several studies have identified sociocultural and health issues that have implications for meeting the mental health needs of Latino elderly. Epidemiologic investigations have documented that Latinos have more favorable health and mortality profiles, and mental health outcomes relative to the non-Latino White population (Markides and Eschbach, 2005; Vega, Kolody, Aguilar-Gaxiola, Alderete, Catalano, and Caraveo-Anduaga, 1998). These findings are counter-intuitive because most Latinos in the United States are socioeconomically disadvantaged compared to non-Latino Whites (Escobar, 1998; Markides and Eschbach, 2005; Markides and Coreil, 1986). This phenomenon is particularly evident for older Latinos of Mexican origin, especially men (Markides and Eschbach, 2005). However, the evidence also suggests that living longer for Latinos is accompanied by more disability, poorer health, and overall worse quality of life (Markides and Eschbach, 2005). Other factors that impact the mental and physical health of Latino elderly are a lack of formal education and high rates of illiteracy (Harris, 1998; Wykle and Musil, 1993). Even when assessed in Spanish, older Spanish-speaking Latinos have a high prevalence of inadequate or marginal health literacy, which is associated with less illness knowledge and poorer physical and mental health (Gazmararian, Baker, Williams, Parker, Scott, Green, Fehrenbach, Ren, and Koplan, 1999; Wolf, Gazmararian, and Baker, 2005). Limited English proficiency among Latinos is associated with lower use of services (Barrio, Yamada, Hough, Hawthorne, Garcia, and Jeste, 2003) and increased risk of lower quality of care and worse health outcomes. Findings from a large population-based study indicate that the prevalence and risk for depression was higher for older Mexican immigrants than for U.S.-born Mexican Americans (Gonzalez, Haan, and Hinton, 2001). A complicating factor is that Latino immigrants tend to seek mental healthcare in healthcare settings where they are less likely to have mental disorders detected or adequately treated (Marin, Escobar, and Vega, 2006).

Recent national reports have prioritized the importance of understanding the insider perspectives of patients and their families in developing culturally responsive service programs to better meet the needs of ethnic minority groups (Department of Health and Human Services (DHHS), 2003; U.S. Department of Health and Human Services, 1999; U.S. Department of Health and Human Services, 2001). However, only a few studies have qualitatively examined the perceptions and experience of mental healthcare and services among Latino older adults. One study of Latino older adults in an East Coast community in the U.S. (Rosental-Gelman, 2002) uncovered the following areas of unmet need: transportation, communication with providers, social and recreational activities, and safety. The study findings also indicated negative perceptions of aging, and complaints of anxiety, depression, and boredom. Similarly, in an investigation in Northern California, Latino older adults were most concerned about loneliness and the prospect of living in nursing homes (Beyene et al., 2002).

The present study was a part of a larger qualitative investigation of the unmet needs for mental health services among older adults in San Diego County, California (Palinkas, Criado, Fuentes, Shepherd, Milian, Folsom, and Jeste, 2006). The larger study examined the perspectives of multicultural participants representing three stakeholder groups: older adult consumers or potential consumers; family members/advocates of consumers; and front-line clinicians and program administrators. The overarching objective was to identify specific concerns and unmet needs for mental health services of older adults, and to determine the extent to which older adults in these communities faced challenges or required solutions to challenges common to culturally diverse older adults, as a reflection of their status as a minority group, or a consequence of their unique sociocultural circumstances. The present study focused on the qualitative findings from the insider perspectives and experiences of Latino stakeholders to develop a comprehensive picture of the problems and solutions related to the need for or use of mental health services for the largest elderly ethnic minority group in the region.

METHODS

Study participants

The methods and procedures are more fully described elsewhere (Palinkas et al., 2006). Briefly, study participants were recruited in two phases. Phase I participants who served as “key informants” for the in-depth semi-structured interviews included 14 Latinos from three stakeholder groups: healthcare and social service providers; services consumers and potential consumers (50 years of age and older); and family members and patient/client advocates. Phase II consisted of 5 focus groups, one comprised of 6 Latino consumers, 3 comprised of 16 Latino family members and advocates, and 1 comprised of 6 providers of services to Latino consumers. The majority of the participants identified themselves as Latinos of Mexican origin, which corresponds with the demographics of the Latino population in San Diego County.

Recruitment was conducted by the County of San Diego Adult and Older Adult Mental Health Services (AOAMHS) and University of California, San Diego (UCSD) staff using a purposive sampling strategy designed to obtain “representative” viewpoints by stakeholder group and region in a nonrandomized fashion (Johnson, 1990). Two-thirds (66.6%) of the study participants were female. Almost all of the consumers and potential consumers (85%) were 60 years of age and older. Some consumers were receiving mental health services from the AOAMHS while others were receiving services from programs or providers outside the public mental health system of care.

The study was approved by the UCSD Institutional Review Board and the County of San Diego Mental Health Services Research Committee. Informed consent was obtained from each participant after the study objectives and data collection procedures had been fully explained.

Data Collection

Semi-Structured Interviews

Semi-structured interviews were conducted with the use of a guide developed in collaboration with the investigators representing AOAMHS. The following five questions were asked of all the participants, with appropriate follow-up probes: 1) For those presently involved in mental health care, please narrate your experience with the mental health service systems in San Diego County; 2) From your perspective, what are the most important needs of older adults in San Diego County?; 3) Are those needs being met?; 4) If not, why not?; and 5) Do you have you suggestions on how those needs could be met? However, the interviews were designed to also be sufficiently open-ended to enable the informant to elaborate on issues s/he considered relevant to service delivery. The average interview was about one hour long. Interviews were tape recorded and transcribed or notes were taken, according to participant preference.

Focus Groups

Focus groups were conducted to examine opinions resulting from group discussion rather than individual introspection. Focus group members were asked to comment on the perspectives that emerged from the semi-structured interviews, specifically addressing the following questions: 1) Do you agree with the findings presented?; 2) Which findings do you feel to be most relevant to your experience with obtaining or providing mental health services?; 3) Which findings do you feel to be least relevant?; 4) Are there any aspects of your experience with obtaining or providing services to older adults with mental illness that you feel were not included or given adequate emphasis?; 5) Do you believe any of these features are likely to affect your willingness or ability to change the way you obtain or deliver mental health services?; and 6) Can you describe specific instances where any of these features affected your willingness or ability to obtain or provide mental health services? While the predetermined probes listed above were used to guide the discussion, the moderator was trained to elicit all relevant opinions related to the unmet needs of older adults with mental illness, and allowed the group members to present their own model of these issues.

Data Analysis

Using a methodology of “Coding Consensus, Co-occurrence, and Comparison” outlined by Willms et al. (1992) and rooted in grounded theory (i.e., theory derived from data and then illustrated by characteristic examples of data) (Glaser and Strauss, 1967), individual interview and focus group audiotapes were analyzed as follows. The first author and two research staff members (all bilingual and of Mexican heritage) reviewed the audiotapes and independently conducted a content analysis to condense the data into analyzable units. Provisional categories of emergent themes were developed to facilitate further coding. The results of the content analysis produced by each reviewer were discussed and through constant comparison, different categories were condensed further into broad summary themes (Willms, Best, and Taylor, 1992). Finally, the relationships among the categories and broad themes were considered for their utility in operationalizing salient domains across stakeholder individual interviews, focus groups, and field notes.

RESULTS

Mental Health

The primary mental health issue reportedly faced by Latino older adults was depression, resulting from isolation, migration, and intergenerational tensions. Several service providers working with Latino consumers noted the tendency of older Latino adults to somaticize their depressed mood. However, some consumers and family members suggested that Latino older adults were being stereotyped and inadequately served by providers because of this misperception.

Unmet Needs

The most salient unmet needs reported by the stakeholders included challenges pertaining to availability, access, acceptability, use, and quality of existing mental health services. The primary organizational barriers to accessing services as reported by consumers and family members/advocates were language and cultural barriers, specifically a lack of translators, followed by dearth of information on which services were available and how to use them. Latinos were limited in their access to services by a lack of insurance or money to pay for services, and the high cost of medications. According to one consumer, “I’ve had to tell my doctor that I cannot pay for three or four medications.” Although members of other ethnic groups identified similar access barriers (Palinkas et al., 2006), Latino older adults were especially vulnerable because of a history of employment in jobs that provided no health insurance or retirement benefits and difficulty applying for government benefits (Medi-Cal, which is Medicaid in California, and Medicare) due to a lack of information and inability to speak English. A majority of Latino consumers and family members also complained of poor transportation to services and limited access to mental health services through primary care physicians because of a lack of time during visits and inadequate provider training. As noted by one consumer, “qualified personnel are lacking in the offices. They do not give appropriate treatment to the client.” Another access barrier reported by Latino consumers and family members/advocates was the lack of information about available services. As one advocate noted, “I think there is very little information that we have available about mental health. It is important to educate ourselves and to receive the information in Spanish. There is a lot of information in English, but not in Spanish.” The legal status of some older Latino adults or their children and other relatives was also perceived by all three groups of stakeholders as an important barrier to access. According to another consumer advocate, “I think there is a fear of going into buildings that are government buildings, especially the ones who don’t have the documentation. They will just get sick and die than go, because they’re afraid of being deported. Or if they have somebody in their house, they don’t want you to go into their house. If they have a nephew or niece or somebody that’s undocumented they don’t want any strangers there.” Finally, across the three stakeholders groups, the scarcity of mental healthcare providers and clinics was noted in the areas of the county where older Latino adults were most concentrated.

Providers of services to Latinos offered several recommendations to address these challenges and barriers to service access, including community-based programs designed to educate potential consumers as to availability of services and how to access them, making information available in Spanish, and establishing more outreach programs for the Latino community. As one advocate noted,

“I think that the outreach needs to be more extensive, particularly in the Spanish-speaking community. They don’t have information, and I think the personnel needs to work with them. Many times, they’re not bilingual; many times, they don’t really understand the culture. And the clients are afraid, embarrassed; they don’t like to divulge their personal situations and especially if you don’t speak their language.” Family members and advocates also recommended that providers be trained to speak and communicate in the client’s language. Also recommended was increasing the number of clinics and providers in regions in the county where older Latino adults were concentrated and providing assistance to older adults in qualifying for Medi-Cal benefits and other entitlement programs.

Another prominent theme was the reluctance of Latino older adults to use services because of a fear of being labeled as mentally ill. According to one Latino consumer advocate, “The word clinic itself scares them, especially if it’s mental, because then they say ‘I do not wish to be called crazy’ (no quiero que me digan loco).” Latino participants also noted the reluctance of older Latino adults to ask questions or to ask for help and to work with younger adults who lack an understanding of growing old. The cultural barriers that restrict access to services also limit use of services because older adults are unwilling to use services that are not culturally responsive. Family members and providers noted that Latino older adults also preferred to deal with mental illness on their own or within their families. According to one Latino consumer advocate, “We need community education to reduce the stigma attached to mental illness by using bilingual and culturally informed providers to educate people and educate the community.” Another advocate stated, “There is a lot of need for education about mental health. There is a lot of ignorance. There is a need for outreach in the person’s own language.” One family member recommended placing information on the local Spanish language television. The implementation of age- and culturally-appropriate services was also recommended. Specific suggestions from family members and advocates for the implementation of culturally-competent services included involving members of the Latino community with reputations for being informal mental health services providers (promatoras, consejeras), hiring more bilingual staff at mental health clinics, providing additional Spanish language training to existing providers, and educating the larger community in the culture and diversity of the Latino population.

The primary barrier to quality of services was poor understanding of the needs of Latino older adults by primary care physicians and inappropriate provider attitudes toward older adults. The inability to communicate with Latino older adults and the lack of sufficient time spent with consumers during clinic visits were also cited as important barriers to service quality. Among Latinos, insufficient time with a provider appeared to violate consumer expectations of the patient-provider relationship. In regard to services, the Latino stakeholders noted that existing services were not age-appropriate, focusing more on younger than on older adults. As described by one Latino advocate:

“It has not happened to me, but other people tell me that they are treated with disrespect (con falta de respeto). An older gentleman told me that he went to see his doctors complaining about pain. His doctor told him ‘que quieres con la edad que tienes’ (what do you expect at your age)? I also heard that they do not receive attention or are disrespected and the doctors are young.”

A scarcity of culturally-competent services was also thought by the Latino community to affect the quality of services provided to Latino older adults. However, there was a lack of consensus on this point as consumers and family members/advocates were more likely than consumers to point to the need for culturally-competent services as a means of improving access, use and quality of existing services.

The chief recommendation for addressing barriers to quality of services was to train healthcare providers in the needs of older adults and how to work with this population. The need to train providers in how to work with older adults with physical disabilities was also emphasized by this group of participants. The primary service-based recommendation was to make services culturally competent by involving family members in the treatment of older adults.

As in the larger study (Palinkas et al., 2006), several predisposing and preventive factors emerged from the data. These included: socialization and social support, transportation, physical health, housing, financial assistance, legal assistance, and caregiver support.

Socialization and social support

The Latino participants agreed that older adults in general and those with mental illness in particular were socially isolated. Consumers and family members asserted that much of the depression and negative thinking experienced by Latino older adults were a result of this isolation. Latino older adults were thought to be even more isolated than most non-Latino older adults because of their inability to speak English. However, it was also suggested that many Latino older adults spent much of their day alone in the house because their children worked long hours and were often absent. Related to a lack of interaction with younger family members was an absence of a valued role within the family and, hence, within the larger community, and inadequate support from family members for immediate physical and functional needs. Several consumers complained of intergenerational tensions related to feelings of loneliness and disconnection. As stated by one Latino consumer,

“I had to put my foot down and remind my family that I am still in charge, the ‘Jefe de la familia.’ They were not taking into account my opinion and I considered leaving my home, and thought about going to a place where nobody knew me…My children are already grown. I say what goes. I have my opinion. They cannot ignore me.”

Underlying the loneliness and social isolation expressed by Latino consumers was a cultural expectation that family members should meet their needs for companionship in line with the “customs of our culture.” Consequently many Latino older adults felt abandoned by their children; this abandonment led to psychological distress, and in turn, increased the risk of mental illness and limited access to mental health services. This sentiment was in contrast to the perspective of service providers who viewed the Latino family as cohesive and supportive of the needs of older adults. Latino participants also complained of a great need for more community resources that provided socialization and social support. Support groups for Spanish speaking Latino older adults and respite services for caregivers were sorely lacking.

To address these challenges, Latino participants recommended use of peer counselors and the implementation of a promotora model and support groups specifically to draw out isolated Latino older adults. The Latino participants also agreed with the recommendation that existing in-home supportive services be improved and expanded. Also recommended were the creation of more senior centers and community groups, more recreational and social activities, and programs that linked older Latino adults with the younger generation of Latino community members. Participants also asserted that programs that addressed age discrimination and the stigma attached to growing old were important and could facilitate increased social contact within the Latino community, as well as improve access to and use of existing mental health services.

Transportation

A predominant theme concerned an absence of available, appropriate, and affordable transportation services, which contributed to social isolation and restricted access to mental health services for Latino older adults. Some public transportation was not accessible to Latino older adults due to schedule inflexibility and cost. Another family member noted that older adults of color were more likely to be stopped and fined for driving without a license. As this segment of the community was especially limited in getting to and from clinic visits, there was some concern that some providers might deliberately fail to schedule appointments due to an expectation that consumers would be unable to keep them. To address these concerns, the Latino participants recommended making appropriate and free or low-cost transportation available to older Latinos.

Physical Health

Latino consumers and family member/advocates frequently cited chronic diseases, especially diabetes and hypertension, as significant challenges for older adults. The participants acknowledged that despite often being stereotyped as somaticizers, somatic complaints were often related to depressive symptoms. Concerns were raised about medication adherence, especially when patients were often unable to afford all the medications they required, and limited functional ability and increased risk of accidents due to frailty. Other reported challenges included poor nutrition due to an age-related decrease in appetite, limited access to healthcare secondary to a lack of insurance and high cost, and poor respect accorded to older adults by primary care physicians. According to one consumer, “I have no primary care doctor… there is limited access to a doctor. The employees treat you poorly. With my illness, I had difficulty finding help.” As with access to mental health services, access to primary care was limited by the undocumented status of some Latino older adults, or the legal status of their younger family members. Providers of services to older Latino adults recommended an establishment of age-appropriate programs to address prevention and health behavior (e.g., smoking, physical activity, diet, immunizations). Latino consumers and family members/advocates recommended more dental, vision, and hearing care, more time spent with patients during clinic visits, and supervision of older adults with physical disabilities.

Housing

Latino participants also expressed concern over the scarcity of adequate housing for older Latino adults. In part, this was attributed to age and racial discrimination. As described by one Latino consumer, “Where I live, I think there is discrimination… I was told on the phone that there were three apartments. When I went to the place and spoke to the apartment manager, with my limited English I understood that they had none available. Then I was told that there were apartments, but not for me. I had to return to the HUD office, speak with the HUD supervisors and bring the interpreter along before my application was accepted.” Many interviewees complained that existing housing was substandard and that senior housing would not allow for relatives to live with older adult residents. On the other hand, one consumer stated “I would like to have my own home. I need housing and privacy.” Participants recommended designing housing for older adults with on-site services like food, transportation, primary care, and social services.

Financial Assistance

Other unmet needs identified by Latino participants included adequate financial support to cover the high cost of living, employment assistance and opportunities, and affordable legal services. Many older Latino adults would prefer to work, if only part-time, in order to supplement their income and maintain their role as head of the household. However, a number of them reported having difficulty finding such employment. As stated by one consumer, “You want to work when you are old, but they don’t want to use you… They don’t want to give me work. My daughter says I am too old, ‘muy grande’.”

Legal Assistance

Obtaining legal assistance has been a challenge for older Latino adults. According to one Latino consumer, “We need people to help with the legal papers (naturalization). We have no money to pay an attorney.” Latino consumers also raised the issue of domestic violence and the need for programs to assist victims of interpersonal violence.

Caregiver Support

The need to provide support and supervision to caregivers to prevent stress and burnout was also cited by this group of participants. Related to the need for more social support services for older adults, one Latino advocate noted “There is much stress for the families that care for the elderly at home. The Latino family has no help at all. This is also a priority.”

To summarize, the major cultural themes that emerged from this analysis were the barriers and concerns related to limited English proficiency, inadequate transportation, and being treated with a lack of respect by physical and mental healthcare service staff and providers. Discussions around these themes stirred strong emotional reactions from consumers and family members and appeared to stress the social encapsulation and loneliness experienced by Spanish speaking Latino older adults. Several consumers recalled that, at a younger age even though they did not speak English well, they were able to work, have great mobility, be productive, raise their families, and be self-sufficient. However, as older adults, they were faced with physical limitations, which required them to depend on adult children who were busy with their own lives, and on outside services which inadequately met their needs, and had to rely on staff members who did not show warmth or respect in their interactions. Their narratives further indicated an overall awareness of their limited abilities due to language problems and poor mobility to meet their emotional and instrumental needs. They were also aware of their vulnerable position in seeking services because of the potential risk of rejection, discrimination, and maltreatment in trying to meet their needs.

DISCUSSION

This study examined qualitatively how unmet needs for mental health services for Latino older adults were perceived and experienced by three stakeholder groups. To our knowledge, this is the first study that explored the multiple perspectives of Latino older adult consumers, family members/advocates, and providers of services to Latinos. The unmet needs identified in this study appeared to be consistent with the main findings from other studies of Latino (Rosental-Gelman, 2002) and non-Latino older adults (Morano and DeForge, 2004) which were based on the views of consumers. However, the findings from our study shed light on the larger picture because the vantage point of family members/advocates and clinicians expands our understanding of the challenges and potential solutions in addressing the unmet needs of Latino older adults. As an example, there was consensus among consumers and family members that diverged from the providers’ perspective regarding the problems stemming from the lack of culturally responsive services. While consumers and family members described their sense of isolation and disconnectedness due to a complex number of stressors, providers perceived the Latino family as cohesive and supportive of the needs of older adults. This is in line with prior work which identified discrepancies in the problems identified by consumers, family members, providers, and policy makers regarding preferences for treatment of schizophrenia in an ethnically diverse urban population (Shumway, Saunders, Shern, Pines, Downs, Burbine, and Beller, 2003).

An additional contribution is that our findings elucidate the cultural context of the needs and recommendations that emerged from this investigation. Latino older adults experience many of the same challenges as older adults from other ethnic groups, including the need for improved access, use and quality of services and the need for other services such as transportation, housing, finances, and legal assistance (Palinkas et al., 2006). However, the needs of Latino older adults that stem from or are related to language barriers and low socioeconomic status—specifically lack of formal education and illiteracy—as well as legal status (their own or that of family members), may result in culturally specific barriers to access, availability, and the acceptability of services (Valle, Yamada, and Matiella, 2006). The qualitative data illustrated a great cultural distance between the participants’ unmet needs for mental health services and their experience and perception of existing services.

Our findings indicate that the range of unmet needs for mental health services requires a response in multiple areas and at the micro-, macro-, and policy level. The literature suggests several factors contribute to the growing number of Latino older adults who do not have an available support system within their family network; these include increasing life spans, female employment, a decline of two-parent families, and long-distance migration by adult children (Angel, Angel, Aranda, and Miles, 2004). As our findings have shown, there is a clear need for community-based services that attend to the particular cultural context of Latino older adults and their families (Valle et al., 2006; Valle, Yamada, and Barrio, 2004). Therefore, at the microlevel, program designers should consider the cultural dilemma of intergenerational families regarding tensions between generations in attempting to meet the needs of older adults, and thus develop service programs that attend to the unique cultural circumstances of the older adults and family caregivers.

At the macro-level, service delivery systems need to address the pervasive problems caused by a lack of cultural competence or responsiveness of clinical and support staff. Administrators should prioritize comprehensive cultural training for all staff, and deploy professional staff with higher levels of formal education in the delivery of culturally responsive mental health services than exists today.

Another notable finding is the presence of a variety of needs related to instrumental activities of daily living that are typical across older adult populations. These common issues concerning limited transportation resources, restricted affordable and accessible housing, and few opportunities to enhance financial status may be best addressed at the organizational and policy level through aging initiatives. The fragmentation of physical, social and mental health services and the attendant demoralization experienced by older adults requires a concerted effort at the policy level to resolve these real obstacles to independent functioning and thereby promote a better quality of life and enhance the well-being of older adults.

As a qualitative investigation, the generalizability of these findings is limited by the nonrandom selection of study participants representing the three groups of stakeholders in the San Diego area. Given that a majority of consumers, family members, and advocates were predominately Spanish speaking immigrants of Mexican origin, any cultural inferences resulting from this investigation should be limited to this regionally specific sample of participants, and interpreted with caution. Another study limitation was the lack of a formal measure of the acculturation level of participants. Further study is needed to explore variation in the experiences and needs of Latino older adults who migrate to the U.S. as older adults to join family members versus those who have spent all or most of their lives in the U.S. (Yamada, Valle, and Jeste, 2006). Nevertheless, our findings do identify important areas of unmet need for mental health services among Latino older adults that converge with those identified in the literature on older Latinos and older adults in general. Furthermore, the qualitative informant-based nature of the data provides insight into the cultural dimensions of how barriers to adequate care are experienced. A more culturally-informed assessment of needs may lead to more individualized treatment plans with improved outcomes for Latino older adults (Yamada, Barrio, Morrison, Sewell, and Jeste, 2006). Future research would benefit from exploring these cultural issues utilizing an experimental design in a larger sample of the three stakeholder groups. Notwithstanding its limitations, we believe that this study provides insight into the complex nature of cultural issues that support and impede the health and mental status of Latino elderly as well as their effective use of community-based services.