Our Research

Research supporting the approach of Mental Health International in Central America

Why is mental health so important to address, especially in low and middle income countries?

Mental and substance use disorders are the leading cause of non-fatal illness worldwide, with a higher disease burden than HIV/AIDS, tuberculosis or diabetes. They affect persons of all ages but have the highest impact on children over 10 years of age and young adults. These disorders are also the leading cause of years lost to disability (YLDs). Of years lost, 21% are due to substance abuse problems and 70% are due to serious mental illnesses [1].

Every day almost 3,000 people are lost to suicide. For each person who ends his or her life, 20 more attempt to do the same [2][3]. Depression is the leading cause of suicide. Suicide rates have risen significantly since the Second World War with the highest increase seen in developing countries. The higher income countries that can afford to invest in suicide prevention programs have seen drops in their suicide rates, while countries without the same resources continue to struggle [4].

Low and middle-income country (LMIC) governments struggle with limited resources and yet are expected to meet the great needs of their populations. Mental and substance abuse disorders account for 13.5% of the global burden of disease [5], yet Central American governments spend only 1% of their national health budgets on mental health needs. In contrast, wealthier countries spend 5% [6][7].  This budget gap is indicative of a treatment gap as well, where individuals with mental illnesses go untreated even though effective treatments exist [8]. Of those in need of mental health services in LMICs, 75% to 90% are unable to access those services from their national healthcare systems [9].

Likewise, employment issues are a major challenge for those with mental illness and their families. According to the International Labor Organization (ILO) and the World Health Organization (WHO), “mental illness hits more human lives and gives rise to a greater waste of human resources than all other forms of disability” [10]. The unemployment rate of people with mental illness is 70% to 90%, which is considerably higher than the 50% of people with physical or sensorial disabilities who are unemployed. Unemployment combined with mental illness can lead to impoverishment, which may in turn worsen the illness [10].

 

Why are user and family groups one key component to solving the challenges of global mental health?

One low-cost intervention for persons with mental illness and their family members is self-help groups (SHGs) [11][65]. Mental health self-help groups, also known as mutual or peer support groups, are directed by people with mental illness or their family members and provide education, support, empowerment, advocacy or similar activities for other families or consumers [12]. While paid professionals assist some groups, peer instructors, family leaders and other volunteers do much of the work. Often professionals assist on a voluntary basis as well [13]. Over recent decades there has been increasing interest in the importance of these programs and their benefits for individuals with mental illness and their families, as well as their ability to improve mental health system services, increase the use of evidence based practices, and increase funding for mental health research [14][15].

Cohen et al. [11] review the quantitative literature from high income countries (HICs) to summarize the many benefits that SHGs bring for help group participants: decreased use of inpatient facilities [16], decreased levels of worry and depression, increased feelings of empowerment [17][18], positive effect on social support and social networks [19], improved patient functioning and decreased caregiver burden [20][21]. They note that the formation of SHGs has become an important component of mental health programs run by non-governmental organizations in LMICs [22], yet there is a lack of research on SHGs in LMICs.

The little research that is available is primarily qualitative and descriptive [11][15][23]. Two quantitative studies carried out in India [24][25] based on task-shifting [63] showed: 1) participation in self-help groups was an independent predictor of improved social functioning, e.g., voting, attending festivals, and working; and 2) medication adherence, having a family engaged with the program, and being a member of a self-help group were independent predictors of good outcomes.

 

What is the intervention MHI uses in El Salvador?

The Family Education, Support and Empowerment Program (FESEP) serves people with mental illness and/or their families. Volunteer professionals and paid staff partner with consumers and family caregivers to facilitate the program. The FESEP program provides education through trained volunteer family instructors, a monthly support group, crisis home intervention, a psychosocial group for persons with mental illness (consumers), income generation support for consumers and their family members, national forums on mental health and disability rights, opportunities for legislative advocacy and service on national health and disability rights commissions, and training of community workers in institutions that have a direct impact on the quality of life of consumers and family members, such as public health clinic personnel and police officers [26]. The program is located in El Salvador, a LMIC. It is facilitated by a nonprofit organization, the Association for Training and Research on Mental Health (ACISAM), located in the capital city San Salvador. ACISAM functions with collaborative support from the Center for Health and Human Development (CHHD), a U.S.-based nonprofit which acts as liaison to the funding foundation and provides support in the form of organizational capacity building, best practices and research. Partners in the program include two nonprofit consumer and family groups, AFAPDIM and ASFAE.

 

Is this program evidence based, or considered to be a best practice?

A review of the literature showed that, despite over 15 years of existence of similar programs in a number of LMICs, there have been few studies to describe the programs or to demonstrate effectiveness in order to build an evidence base for best practices. Only one quantitative 2-year cohort study [30] and a few qualitative studies [11][13][23][and Nickels, Flamenco, Rojas, unpublished] have been identified.

While our FESEP intervention in El Salvador has yet to be demonstrated effective through quantitative studies, there is a large base of literature on which the program is based (see the following paragraphs). We are planning an experimental study that will be carried out during 2015 to better determine the effectiveness and benefits of this program.

Studies on self-help mental health programs in high-income countries (HICs) have generally reflected positive benefits, but have only focused on outcomes for individuals [12][31][32][33][34]. Interventions carried out in LMICs are typically packages of mental health services or programs that integrate components to meet the variety of needs of people with mental illness and their family caregivers that are not being met by government services or programs, such as medications, disability income, supportive employment, community day programs and club houses, assertive community treatment teams, family psychoeducation (FPE) therapies, and other best practices typically provided in high income countries [14]. Studies in LMICs thus seek to measure these packages or integrated interventions. The broader measures include individual impacts but also participation in support groups and other intervention components. For example, Cohen et al. [11] in a qualitative study of SHGs in Ghana concluded that self-help groups provide a range of supports (social, financial, practical), foster greater acceptance of service users by their families and by communities at large, and are associated with more consistent treatment and better outcomes for those who are ill. Lund et al. [30] used a two-year cohort study to estimate the impact of BasicNeed’s health and development model in Kenya (which includes medication, clinical follow-up, referrals and counseling, self help groups, occupational training, job related grants). The study showed improvements in global mental health, functioning, income generation and quality of life. Others have looked at participation in advocacy [13], or a mixture of professional treatment and self-help group participation [24]. However, these studies provide little to no detail regarding how the groups were structured, what activities they carried out, who provided leadership, or how the programs impacted participants. Nor do these studies address the impact of the separate program components on participants or the impact of the program at various social levels (individual, family, community, organization and society). The present study will provide a unique quantitative and qualitative analysis on a wide variety of benefits and levels of impact for participants, including social capital, leadership, advocacy, and organizational role.

In China, a large random controlled trial of early schizophrenia with medication vs medication and psychosocial treatments (12 months of psychoeducation, family intervention skills training, and cognitive behavioral therapy in 48 group sessions) demonstrated the intervention improved compliance with continued treatment, lowered risk of relapse, and improved insight, quality of life, social functioning, work and school outcomes [85].

In the area of the study of alzeimers, a multi-component approach has been piloted as a way to address a complex illness that potentially requires addressing the many joint and synergistic causes of the illness [72]. Components include sleep, exercise, diet, stress management, supplements and medication. Addressing enough pieces can create a tipping point that leads towards recovery. This is the same approach MHI is taking by emphasizing the need for a program that addresses a wide range of needs for those with mental illness – access to medication, therapy, social needs and network development, self-help skills, education, employment, empowerment for change, family support, and so on.

Addressing the wide variety of psychosocial, education, employment, and other social determinant needs of persons with severe mental illness in a community-based setting is a means towards recovery and providing a higher quality of life for these persons [14][16][19].

The family education component is based on a model called the Family to Family program, run by the National Alliance for Mental Illness in the USA. The program has now been run through several random controlled trials and is considered to be an evidence based program [18][34] [80].

Such an approach led by trained and supervised peers was successful in a program for persons with physical disabilities due to loss of limbs in mining ordinance (war) accidents [53].

Mutual support groups and voluntary advocacy organizations have brought significant healing for people with mental illness and their family caregivers as well as achieved a great deal in the area of systemic change, for example, increased state funding for evidence based mental health programs across the U.S. [20][33][21][79].

The role of volunteers in health care provision has been highlighted in recent studies by the National Institute of Mental Health, where researchers are advocating using peer and family as well as community volunteers to help fill in the gap in healthcare provision, including for those with mental illnesses [83][84].

     Finally, community based approaches provide an alternative to the strictly medical model. Combining a comprehensive and holistic approach to recovery is the necessary complement to the use of “minimal medication” [66][67][68][85]. Community supports might also help people with illnesses and psychiatrists who choose to reduce or discontinue use of medication in order to improve longterm functioning outcomes, experience more periods of recovery, increase their favorable risk and protective factors, and to reduce relapse rates [86][87].

 

How does MHI address systemic change issues?

One major goal of MHI’s work is to strengthen the user and family movement. This involves strengthening leadership and organizational capacity of user and family associations across Central American countries. This effort is based on the historical success of the family movement and the consumer peer and recovery movements in the U.S. over the last 40 years [79] [14].

Along with its partner in El Salvador (ACISAM), MHI obtained a four-year grant from the Inter-American Foundation to develop a network of user and family associations across Central American countries that began in October 2014. In addition to providing networking opportunities, an annual conference, communication tools, and mini-grants, there is a major emphasis training to achieve strong organizational capacity for the associations. Capacities include financial management, sustainability/funding, project management, leadership and communication skills development, advocacy, team and collaborative skills, strategic planning, participative evaluation, and volunteer management. These capacities are based on best practices in the literature on nonprofits and organizational behavior [27][28][29] [73][74][75][76][77] [81][82].

 

What is next?

MHI intends to pursue studies that will support the development of strong mental health systems in Central America. These range from epidemiological studies to experimentally testing the effectiveness of the multi-component programs we use. Our interest is the real benefits obtained by users and their families, with measures ranging from the individual to the organizational and national policy levels. The development of a regional network of mental health researchers is a priority if we are to accomplish these goals. We will also be evaluating the impact of our new regional support network for family and user associations. A search for funding sources to facilitate this work is underway.

 

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This article is adapted and expanded from a paper by the author and co-authors from El Salvador: Nickels, SV, Flamenco, NA, and Rojas Valle, MS. 2016. A Qualitative Evaluation of a Family Self-Help Mental Health Program in El Salvador. Available online at: https://ijmhs.biomedcentral.com/articles/10.1186/s13033-016-0058-6