Introduction

It is perhaps no longer suitable to look at the world in terms of fragmented pieces. Terms such as “micro” and “macro” or “local” and “global” reflect an antiquated view of the world [1]. Such fragmentation may oversimplify the myriad of perspectives that exist, aggregating the needs of a community of people into a “collective identity.” This, in turn, may lead to an undervaluing of the complexity of a population [2]. Not only are communities (particularly in the Global South) a mixture of varying needs and perspectives but they are bound to external influences both at the national and international level. By developing such simplified models of “community,” there may be a misrepresentation of needs [3]. The prioritization of needs and goals of external partners may not align with local actors and community members, creating gaps in services [4].

The needs and values of the Tibetan community in Dharamsala represent an extremely diverse population, often homogenized into one collective identity. The Tibetan community is often viewed under the umbrella cause of the “Rangzen” movement (for Tibetan independence) or Buddhism under the leadership of the 14thDalai Lama. Aggregation may lead to the assumption that health needs and development targets are uniform across the population. The intention of this analysis is to examine the complexity with which the Tibetan community in Dharamsala perceives its health needs. By embracing a multifaceted subjective understanding, there can in turn be a better foundation by which to examine the plurality of the community and how health and development agendas may utilize “participation.” Participation may be defined as “a process through which the stakeholders influence and share control over development initiatives and the decisions and resources which affect them” [5]. Participation in this way does not define a community, nor does it define what is meant by development or progress [6]. As a result, participation has in many cases undervalued local perceptions [7]. Alternatively, this analysis argues that participation must incorporate “reflexivity” by embracing a more complex understanding of needs. Reflexivity in this sense is defined by the STEPS Centre as, “the capacity to engage with the ways in which framings of systems are plural, conditioned by divergent social values, economic interests and institutional commitments” [1].

By synthesizing the subjective framings of health within the Tibetan community, this analysis finds two conclusions. First, Tibetans’ health needs and understandings relating to health are extremely diverse. Health care delivery sits at the intersection of belief and access. Buddhism plays a significant role in people’s perceptions on health, though such perspectives are rarely integrated into externally implemented health care programs. Past research on Tibetan health has been guided by academic interests and pre-planned interventions without the consideration of local perspectives. The subjective etiological description of illness and health is at times conflicting with the academic research and is internally heterogeneous. Newcomers (those Tibetan refugees newly arrived from Tibet) have different perceptions than those born in exile, monastic Tibetans differ from lay Tibetans, women from men, and young from old. This complex set of health information leads to the second conclusion: people have a variety of needs which may not align with the dominant narratives of development in Dharamsala. Many interviewed spoke about current short term, terminal programs and funding while expressing the need for long term continuous development through education and local capacity.

The outcome of this analysis demonstrates that the misalignment between development agendas and perceived needs is a result of the simplification of the Tibetan community. In this way, the Tibetan community in Dharamsala is victim of subtle forms of participation both internal and external to the community. Many expressed different needs from current programming. Informants emphasized strengths over deficits and seemed to narrowly define health, illness, and treatment each as different from one another. Participation in this way can create dominant voices that increase inequality and fragmentation among the most marginalized populations [8]. This analysis then attempts to bridge traditional participation to reflexive development by acknowledging that people are all differently committed to their communities [9]. By embracing the social subjectivities and diverse health framings of the Tibetan community in Dharamsala, there can be a move towards inclusive engagement. For such a transition, there must be a robust understanding of local social, cultural, and political conditions; gender, age, disease, and illness; Buddhism, the 14thDalai Lama, and the Tibetan freedom movement [10]. The objective health assessment and subjective health needs demonstrate that there are not universally acceptable definitions of progress or growth even within a small community such as Dharamsala. Embracing this view can work towards a more diverse interpretation of “which changes, in whom, and in whose interest” development works towards [11].

The analysis first presents a health assessment of the Tibetan community-in-exile in Dharamsala. This includes a synthesis of interviews with key-informants as well as a review of literature on Tibetan health. The analysis then examines participation from a theoretical perspective. It lastly examines literature on engagement and mobilization as tools to incorporate a more pluralistic approach to community development embracing diverse framings of health.

Background

In 1959, the 14thDalai Lama of Tibet escaped from Lhasa (then the capital of Tibet) during the “Tibetan Uprising,” setting up his residence in Dharamsala, India. The Central Tibetan Administration was created almost immediately after the 14thDalai Lama’s arrival and currently acts as the “government-in-exile” for the Tibetan people. The Central Tibetan Administration (CTA) supports the Tibetan people in India, Nepal, and Bhutan through social and educational services. Approximately 80,000 Tibetans left Tibet during these first years (1959-1960) and there has been a steady emigration from Tibet since [12]. As of 2009, there were 109,015 Tibetans living in this exile community [13]. Dharamsala, also known as “Little Lhasa,” has become the government headquarters and a quasi-capital for the Tibetan refugee population. It is a government within a government in India. It is a spiritual site for Buddhists as the home of the 14thDalai Lama, an administrative capital, a tourist haven, and a home to Tibetans, Indians, and many others. In many ways, the complexity of the Dharamsala Tibetan community is often overlooked. It is anything but homogenous with various organizations with different goals and objectives. As home to such a variety of ethnic groups (ethnic Tibetans, Indian Himalayans, Indians, Nepalese, and other foreign Buddhists), government agencies, NGO’s, monks, and nuns, there exist various agendas for serving the Tibetan community and addressing the needs of the Tibetan diaspora. The community is host to many foreign residents, short-term tourists (both Indian and foreign), and many migrating Tibetans from other communities-in-exile. Additionally, within the Tibetan community there is incredible diversity. There are the first generation Tibetans living in Dharamsala, their children, and newcomers from Tibet [14]. There are also undertones of conflict between these groups, stemming from stigma against the Chinese influence among newcomers from Tibet.

There were 13,701 people living in the Dharamsala community as of 2009 [13]. Of this, men constitute about 55% of the community. Dharamsala is not considered a permanent settlement but rather a scattered community. The Indian government has allocated both permanent settlements (with and without farm land) and scattered communities for Tibetan refugees. Permanent settlements are formally organized communities divided into sections called “camps” with land and homes given to Tibetans by the Indian government. Scattered communities such as Dharamsala are unplanned Tibetan communities on Indian-owned land. The majority of Tibetans in such scattered communities live in rented apartments and there is significant internal migration with families traveling and working throughout India. There are currently 18,920 Tibetans who live abroad (outside India, Nepal, and Bhutan) and many more intend in the near future to immigrate as well [13]. The community is a myriad of interests, histories, and needs; the health situation in Dharamsala is unique and cannot be generalized to other Tibetan settlements (either formal or scattered) throughout India.

Methods

This research is a result of three separate literature reviews and in depth interviews in Dharamsala, India between September and November, 2011. For the health assessment component of this analysis, 51 key informants in Dharamsala were interviewed about health perceptions, health needs, and disease transmission. These informants are involved in health and/or social services within the Tibetan community. Those interviewed included allopathic doctors, Ayurveda doctors, doctors of Tibetan medicine, directors of local NGOs, clinic staff, social service organizations, government agencies, and education institutions. There were three key interviews that were unattainable. Additionally, three interviews were abbreviated due to time constraints of the interviewee. All but six interviews were conducted in English and the others were translated by an English speaking staff member or translator. The results of these interviews are presented in this analysis anonymously. As part of the health assessment, this analysis contains an in-depth literature review on health research on the Tibetan community-in-exile. This includes both grey literature and peer-reviewed articles yielding 15 relevant publications. The review is an attempt to understand the limited objective health information that exists on the Tibetan community-in-exile.

The second literature review focuses on participation within developing countries. It examines the role of participation in development and takes a more critical position on the participation process from a theoretical perspective. For this review, a literature search was done using the 43 lowest ranked countries in the world by the Human Development Index, using the cutoff of 0.488 in accordance with the 2010 HDI rankings [15]. These countries are considered “developing countries” by the HDI and include countries 130-172 according to the ranking. Additionally, this search included six countries with HIV prevalence above 5% (Gabon, South Africa, Malawi, Namibia, Botswana, and Swaziland) that were not ranked below 0.488 on the HDI index [16]. Additionally, Zimbabwe was included due to its HIV prevalence rate even though it is not ranked in the 2010 HDI index. Using these 50 countries, a search was conducted using the terms: “community participation,” “community engagement,” or “community mobilization.” This yielded 27 relevant articles.

A third literature review was conducted for this analysis focusing on examples of successful utilization of community engagement in addressing health needs. This review provides a foundation for bridging traditional participation to more reflexive development. It synthesizes the data on engagement in health programs and exposes best practices towards improved health outcomes using community-based programming. It involves the search terms: “community engagement,” “community mobilization,” and “health.” This review yielded a significant number of articles of which 26 proved to be pertinent to this analysis.

Health Assessment

There has, to date, not been any cumulative assessment of perceptions of health and disease in this community. This assessment documents the themes of 51 interviews with key informants working in health and social service agencies in Dharamsala and reviews pertinent research of the Tibetan community-in-exile.

Amartya Sen has said that there are two different types of health assessments – there is the internal health assessment (based on perceptions) and the external health assessment (based on objective health information) which are not necessarily congruent [17]. There must be a balance between the two because objective health statistics do not necessarily reveal how different populations within a society perceive their health. There are many internal health conclusions of which two are specifically salient for this assessment. First, there are varying perceptions of the most common diseases, which seem bound by informants’ experiences. People have been exposed to a variety of formal and informal health education media and thus incorporate word-of-mouth knowledge, experience, and education into understanding disease. Second, modes of transmission, treatment, and understanding of mental and physical health rely heavily on Buddhist understanding and ideas of Karma. Even among those who seek allopathic care, their knowledge and description of transmission is influenced by Tibetan medicine. People’s knowledge of health and prevention incorporate a biologic disease understanding of health within the context of Buddhism. Alternatively, there are significant external health conclusions, particularly within the mental health and behavioral health literature in relation to issues of trauma and resilience. The available literature seems to show some conflict between the data that show mental health conditions within the Tibetan population as compared to what is found in the interviews with informants. The information synthesized below is a supplement to the belief model of the Tibetan community and not an alternative.

Literature on Tibetan Health

There have been several pertinent research studies examining the mental health of the Tibetan community-in-exile. The concept of mental health is complicated within the Tibetan community as it is not causally connected to past trauma [18]. There are multiple interpretations of health in Buddhism, of which the physical causal belief is not always recognized. Illness and particularly past trauma can be attributed to the Buddhist concept of Karma thus leading many to attribute mental health problems to “being crazy” [18]. This perspective has been confirmed through multiple informants. In spite of this, research has found that Tibetan students born in Tibet have higher depressive and anxiety scores than those born in exile using recognized mental health evaluations [19]. This strong correlation indicates that there is something about being raised in Tibet and then migrating to India that increases depression and anxiety. Additionally, it was found that there is a correlation between instances of past trauma and mental health diagnosis [20]. Children who recently arrived from Tibet (less than 18 months) showed increased symptoms of PTSD [21]. There have also been several studies examining the connection of past imprisonment to mental health symptoms. Through the interviews in this assessment, few informants have admitted to any instances of mental health problems, emotional disorders, or psychological trauma among those who have previously experienced trauma. Alternatively, research has found that 85% of those who experienced torture in Tibet have reported PTSD symptoms [22]. Additionally, 23% reported DSM criteria for having PTSD. When compared against refugees from Tibet who were not victims of torture, it was found that approximately 54% of torture survivors experienced anxiety versus approximately 29% among those who had not experienced torture [23]. Data on mental health in the Tibetan community is complex as there are a variety of confounding factors in the reporting of psychological distress that are not necessarily discussed in the above literature. The process of arriving in India is long and arduous though it culminates with a meeting of the 14thDalai Lama during one’s stay at the Reception Centre (refugee processing center) near Dharamsala. This meeting may have a buffering influence on people’s reported trauma. Only 12% of torture survivors reported anxiety and 9.6% reported depression within two weeks of arriving in Dharamsala [24].

All of the research reported above has been conducted through terminal research studies external to the Tibetan government. The Department of Religion in the CTA has conducted their own mental health analysis administering the Hopkins Mental Health Test to different monasteries and nunneries each year for the past several years. They found two “severe cases” out of 60 tested in 2009-2010 and 12 severe cases out of 39 in 2011-2012. The monks and nuns tested are those who are newly arrived from Tibet within the last several years. The percentage difference between these years is significant, though over time such data may reveal different trends than the academic literature.

Perceptions and Perceived Needs with the Community

The “internal health” of the population is in many ways more telling than the “external health” [17]. Community politics and internal dynamics create social capital that must first be assessed before it can be utilized. There are very real objective health needs of the community but such needs must be considered in balance with the views of the Tibetans living within it.

Mental Health

Mental health is an extremely complex concept within the Tibetan community and this brief and surface examination is constrained by several key limitations. First, these interviews were conducted primarily in English and thus there was difficulty in communicating the idea of mental health, emotional health, or psychological trauma. Second, many in the community receive frequent questions on the mental health of the Tibetan community. Due to this line of questioning, many have resorted to cursory answers regarding psychological health. Third, the issue of mental health is not properly contextualized in India and within the Tibetan community. Mental health is not necessarily a priority and there are not adequate resources or recognition of mental health. Such lack of recognition has led to a de-prioritization within the community of any kind of mental or emotional stress. In spite of these limitations, there are three significant themes identified. First, there are few congruent definitions of mental health. Second, mental health appears to be a taboo issue among different cohorts/organizations over others. And third, there is an overlap between religion, politics, and mental health that is difficult to disentangle.

Definition

The definition of mental health is multifaceted and complicated. Mental health among Tibetans is not just the psychological state – there is a strong connection to the physical body. In that sense, many seemed to define mental health issues as the manifestation of behavior. Informants in interviews would speak about people acting strangely, acting “off,” or “aloof.” There was not necessarily a connection to mental health issues without such corresponding behaviors. In the same way, people did necessarily see mental health as being the same issue as mental trauma. Mental trauma has a physical cause – leaving family in Tibet, being imprisoned, or experiencing torture. One informant said that only those from Tibet have mental health issues – those born in India are fine. Such physical causes led to mental trauma while mental health is more abstract. Some informants believed that there was no psychological trauma without a cause, thus there is connection between mental health and “emotional problems” as different from psychological trauma. One informant specifically clarified that “emotional health” properly describes mental health conditions while mental health describes severe mental health disorders. Others saw “emotional” issues as feelings while mental health is more illness-based. These informants connected mental health issues with drug use or with incidence of tuberculosis. Mental health conditions in such cases have direct physical manifestations. Alternatively, some informants viewed mental health in the context of psycho-social support, referring to support from a community or support in raising a child. Mental health is not clearly defined, and even through direct Tibetan translation the concept of mental health would still not effectively translate. There is a significant need for research in this area as further understanding of the proper definitions of mental health will lead to a stronger assessment of the Tibetan community.

Stigma and Resistance

The issue of stigma concerning mental health is not entirely clear. There are themes within the interviews that suggest there may be a taboo against talking about mental health or more so acknowledging it. This depends to a great extent on one’s definition of mental health. Those informants asked about stigma were all unable to give a conclusive answer to whether or not stigma actually exists at a community level. If one takes an illness-based approach or a causation approach, people may be more willing to accept mental illness as a result of a condition, or mental illness may in fact be uncommon without a direct traumatic cause.

From the interviews, the issue of stigma or resistance seems particularly affecting for two populations: newcomers from Tibet and monastic communities. Newcomers face a plethora of challenges on their journey into exile. One must first travel from Tibet to Nepal to the Tibetan Reception Centre at which point one can obtain travel documents to legally travel to India. Tibetans will first arrive in the Delhi Reception Centre and then go to the Dharamsala Reception Centre. This long process may be naturally stigmatizing, as one informant said: there are few resources available and people have to seek care in an unfamiliar environment. While the Reception Centre provides medical care and services to all refugees free of charge, the environment is foreign and language and cultural barriers exist. Another informant said that there are issues of physical abuse among women. This compounded with unfamiliarity could increase one’s resistance to seeking care. Such external issues make seeking care difficult though there may also be internal struggles people face against mental health as well. As an informant said, Tibetans are by nature “hard blooded.” Tibetans are resilient to the challenges that they face on the journey from Tibet to life in exile. The informant further said that Tibetans are drawn by their urge to meet the 14thDalai Lama as all newcomers get the opportunity to meet him at the Reception Centre. This may in fact strengthen one’s resolve though it could deprioritize psychological trauma in place of the goal of meeting the 14thDalai Lama. This in a sense may create a “groupthink” phenomenon by which Tibetans are bound together to work towards a common goal [25].

Among the monastic populations in Dharamsala, there appears to be a resistance to discussing mental health. This could result from a stigma against mental health, a resistance to discussing it, or a legitimate resilience to mental illness. Among the informants at monasteries and nunneries, people gave very terse responses to mental health questions. Again, there are many confounding factors relating to one’s definition of mental health. As one informant said, people are happy for the opportunity to go to a monastery. The informant further said that the monks have prayer to help. Such perspectives point solely to a lack of mental health discussion among the monastic community and not decisively towards stigma, resistance, or resilience.

Religion and Politics

The role of Buddhism has perhaps the most profound influence on mental health in the Tibetan community. There is a fine line between religion and politics within the Tibetan community so in many cases the influence of Buddhism and that of Tibetan independence are closely interrelated. Many informants spoke of the role of Karma as related to physical suffering. Karma is an extremely complex idea in and of itself but as one informant said, all action generates Karma (Karma in Tibetan means “action”). The informant went on to say that Karma is the most important component of health. Karma can be viewed as the cause of suffering – the trauma one experiences results from Karma accumulated in this life or in the past life. One informant said that Tibetans do not put much weight on physical pain, attributing such experiences as torture to Karma. By interpreting trauma as purification of Karma, there is potentially a disconnection between past physical pain and the current mental state. This disconnect could in fact explain the lower instances of mental health trauma among Tibetans even among those that have experienced some traumatic event. Such a belief model has a significant impact on mental health perceptions within the community. As one informant said, there are not many mental health issues at monasteries precisely because they are more religious and have more inner support. Similarly, an informant spoke about ex-prisoners and mental health saying that there are few mental health problems because of Buddhism. Thus Karma may act as a mental health buffer between trauma and lingering mental stress.

The role of the 14thDalai Lama may also have the same buffering effect. One informant said when speaking of mental stress due to immigration from Tibet to Dharamsala, “people feel their journey is over.” There is a natural culmination in meeting the 14thDalai Lama. As one informant says, the cause of Tibet sustains people during imprisonment. The informant went on to say that such ex-political prisoners who receive a meeting with the 14thDalai Lama become more stable. One informant when asked why there are such low instances of mental health issues pointed to the 14thDalai Lama. The informant said that the 14thDalai Lama’s teachings of the “middle way” provide a great deal of support. The “middle way” describes advocating for a peaceful solution to the Tibetan freedom issue through negotiation. Another said, “Those who escaped from Tibet are determined – they have a purpose.” The influence of experiences as purposeful both in their future meaning and in the role of past Karma has a bearing on the impact of the manifestation of mental stress and anxiety among the Tibetan community. Perhaps more importantly is the role of the 14thDalai Lama and the relationship Tibetans have with him. It is extremely complicated to understand this relationship through the interviews; informants generally expressed that the 14thDalai Lama provides a significant support system for those with mental health issues and specifically those who have previously experienced trauma.

Buddhism

Buddhism has an extremely important role in perceptions of health and in seeking treatment. As discussed above with mental health, Karma is a common explanation of physical disease transmission. Disease (both physical and mental) can be broken down into three categories within Buddhism. According to informants, there is little distinction between the mind and the body, so physical conditions have some connection to the mind (as different from the physical brain). The first category consists of demonic conditions that are caused by “evil spirits” which are treated through prayer, prostrations, and pujas (Buddhist ceremonies). Illnesses that fall into such conditions may have a specific biological cause though this categorization of disease is based on perception. People will treat such illnesses on their own or by going to a monastery to seek guidance. The second category of illness is physical (or environmental) conditions which are caused directly by a biological agent. Such conditions usually (though not universally) include gastric problems or diarrheal diseases. The causes of such conditions are directly related to the consequences of one’s action and have little relation to Buddhism (besides Karma). Physical conditions are treated primarily with allopathic medicine and prevention falls on the will of the person rather than religion. The third category is Karma conditions. While Karma may have a role in illnesses that are demonic or physical, Karma is the primary cause of such conditions within this third category. These illnesses are incurable life-long conditions. Buddhism’s explanation of health is far more complicated than this cursory categorization, though this breakdown serves as a foundation by which to explain and understand disease perceptions and transmission.

In understanding the role of Buddhism in health, it is essential to examine the influence of traditional Tibetan medicine. Traditional Tibetan medicine (TTM), or “Sowa Rigpa” in Tibetan, is based on the philosophies of Buddhism. As one informant associated with Men-Tsee-Khang (the TTM institute in Dharamsala) said, Tibetan medicine is about “health through balance.” There is a common theme of balance in informants’ responses to disease transmission. Many describe modes of transmission as lack of balance in one’s diet. TTM doctors represent a major treatment modality for the Tibetan community. While some informants reported relying solely on allopathic medicine, those informants still seemed to base many opinions about health and treatment on the tenants of TTM.

Buddhism additionally provides a platform by which to address health needs in the community. As one informant said, “the power of religion” is the best way to educate adults about disease and health. People respond to Buddhism and to the messages of the 14thDalai Lama. One informant described how the 14thDalai Lama has been vocal about HIV/AIDS which has in turn created awareness among the Tibetan people. Several informants described in gest how the 14thDalai Lama’s messages are “emotional blackmail” as people strictly adhere to his teachings. Buddhism also represents a connection to the culture and history of Tibet. As one informant said, it is important especially for youth in fostering a sense of community. This community helps creates uniformity for delivery of health messages. The Tibetan community in Dharamsala, as one informant said, is all Buddhist and people respond to the messages of high lamas (spiritual gurus). This informant suggested using lamas as the spokespeople for health messages because of people’s adherence to Buddhist messages.

People have reported many different ways by which religions helps manage illness. One informant said that many people use Buddhism for counseling and as a means for support. Another said that Buddhism is naturally a part of their counseling with clients. Still another talked about how Buddhism helps with health issue by promoting an inner peace of mind and interdependence of all things. This theme of interdependence was common in the interviews: the strength of the mental state naturally helps improve a person’s physical state. Similarly, a week mental state may influence the physical state. When examining health among the Tibetan community, it is impossible to fully assess diseases as solely mental or solely physical.

Beliefs on Disease and Modes of Transmission

Disease etiology is much more complex than simple biological transmission. People’s perceptions dictate how they seek treatment and how they prevent future illness. This section presents themes from interviews on the most common diseases within the general Tibetan community in Dharamsala, modes of transmission relating back to the discussion on Karma and Buddhism, and modes of treatment (allopathic versus TTM given the condition and the preference of the individual). Additionally, this section discusses some of the salient health needs expressed by interviewees.

Common Diseases

Illness appears closely bound to personal experience – in most cases, people tend to report similar conditions to one another with the most common conditions being hepatitis B, tuberculosis, and some type of gastric condition. The monastic interviewees did not generally report tuberculosis as a significant problem though most indicated that there have been a few tuberculosis cases at the monasteries. They did however indicate that tuberculosis was a significant problem in the lay community. Only a couple of informants made any indication of multiple-drug-resistant tuberculosis among the Tibetan community. Almost every informant reported hepatitis B as a significant and common health condition. Those who revealed they had hepatitis B themselves prioritized the disease before any other. There is no conclusive data on hepatitis B among Tibetans in exile according to health providers at the local hospital, thus most prioritization seems to come from some kind of personal association (infection or being affected). Interestingly, one informant said that most people know about hepatitis B but do not know how serious it is. The findings that most listed hepatitis as a significant illness indicates how common the virus is though does not indicate whether people understand its severity.

Other commonly cited illnesses were flu, infections, diarrheal conditions, respiratory problems, cough, and headache. These reported illnesses are different than the data collected in the 2010 Planning Commission Health and Demographic Survey because the survey specifically excluded non-clinically diagnosed conditions [13]. Since interview questions were focused on perceptions (rather than objective health measures) some informants listed minor ailments such as the flu and a cough as the most common conditions. While cancer was the leading cause of death in 2009 [13], it was only reported by two informants to be of the most significant and common illnesses. These interview responses on common health conditions may contain bias because some people may have described their most recent condition or illness. Several informants did express that Tibetans will likely report their most recent ailment. The fact that most responses contained similar illnesses indicates that if such a bias were true, then most people experience the same recent sicknesses.

There were some specific differences in reporting on the health of newcomers versus the health of those born in exile. There seem to be differing perceptions of newcomers’ health. Some view newcomers as healthier than Tibetans in exile. One informant said that newcomers are traditionally very healthy and only get sick due to the weather, food, and water changes in India. Another said that newcomers are fairly healthy though the change in lifestyle makes them unhealthy. One spoke about newcomers getting tuberculosis in India while in Tibet few were sick with such a condition. Alternatively, several others indicated the opposite. One informant said that newcomers have higher instances of sexually transmitted infections (STIs) while another spoke about how newcomers have a tendency to get sick more often and are not as healthy as Tibetans born in exile. There may be a reporting bias as those born in exile may report themselves to be healthier than others and vice versa.

Another theme in the responses was that of drug use in the community. While drug use was not reported by a majority of the informants as a common problem, it was discussed by several informants as a significant issue. One informant said that drug use arises from lack of identity among youth. Another said that youth resort to drugs due to lack of direction or employment opportunity in the community. Still another spoke about the significant influence of peer pressure and Western culture among youth. These themes reinforce some of the non-health needs expressed below in this assessment including job opportunities and local capacity.

There were few informants who discussed health issues that specifically relate to women in the Tibetan community. One informant discussed how women’s health tends not to be discussed. The informant talked about high prevalence of cervical cancer among older women and many instances of hysterectomies. Such high prevalence would be expected being that there is little health screening and no cancer screening for cervical cancer. Another informant spoke about higher instances of illness among women as compared to men. The informant was not sure why women are sick more regularly but indicated that it is particularly so for newcomers from Tibet. The lack of discussion around women’s health issues may be more a matter of stigma than positive health outcomes – this potential stigma is discussed below.

Additionally, some informants discussed health issues specifically relating to former prisoners and those who have been victims of torture. One informant discussed how torture survivors have continued kidney problems and ulcers; another informant confirmed this. There are many confounding factors involved in this relationship and it should be an area of future research given respondents’ identification of such problems.

Modes of Transmission

Informants interviewed for this assessment reported varying perceptions of disease transmission. Many reported disease transmission as relating to food and weather changes. While few discussed biological or medical disease transmission, most people had a general understanding of disease as resulting from some kind of physical condition or personal behavior. TTM views diseases as either “cold” or “hot.” In part, illness arises from lack of balance between cold and hot foods leading to an imbalance in the internal “metabolic fire.” Based on such an understanding, many informants reported disease transmission as a result of eating certain foods, or eating too much of one versus another. For example, according to a TTM doctor, a chili and a radish are hot foods while a potato is cold. Many people seemed to incorporate themes from TTM into their understanding of disease transmission. One informant reported that cancer was caused by spicy foods and too much oil. Another informant discussed how too much beef and not enough chicken was the cause of some illness – lack of balance between food.

Many informants also described disease transmission as caused by the weather changes upon immigrating to India from Tibet. One spoke about there being too much sun in India as compared with Tibet. Another informant talked about the changes in weather leading to changes in the health of the environment – it is too hot in India and thus there is more disease. Another discussed how the weather changes specifically lead to changes in how people cure and store food. People have the same behaviors as they had in Tibet while the changes in weather may lead to the development of food-borne illness. Several informants discussed how Tibetans living in Tibet cured meat rather than cooking it which is not possible in India and with cost and availability of meat, many Tibetans have moved to vegetarian diets.

Other informants focused more on behavior as influencing disease transmission. Several spoke about people drinking bad water resulting in gastric issues and dysentery-like conditions while other informants spoke about unhealthy eating habits or poor nutrition as the cause of disease. Others still mentioned “carelessness” in causing disease – people knowingly making unhealthy decisions. Some informants discussed living in too close proximity to one another and not having a clean environment. These informants specifically discussed having unclean water and how people have made poor decisions in drinking water from the tap as compared to filtered water being aware of the dangers. Additionally there were two specific disease transmission modalities that were common among respondents, both of which seemed to be influenced by some shared health education (formal or informal i.e. word-of-mouth). The first of these is hepatitis B transmission through sharing razors. Many reported this as the cause of hepatitis spread even among those not in the monastic community and not shaving their heads. (Monks and nuns shave their heads frequently as is tradition among monastic Buddhists.) While monks and nuns sharing blades could potentially describe some hepatitis transmission, it most likely is only a minor contribution. This is an example of an exaggerated explanation for disease transmission. A second shared understanding of disease transmission is that of butter tea. Butter tea is a Tibetan tea made from milk, tea, butter, and salt. Many spoke of various diseases including cancer, hepatitis, and gastric problems being caused by too much butter tea in one’s diet. Some informants said that the butter tea was suitable to drink in Tibet where the climate was much colder but not in India where temperatures are warmer. None of the informants described the connection between the high calorie and high fat nature of butter in the tea yet people reported that butter tea is unhealthy. While high butter tea intake could lead to high cholesterol and higher blood pressure and related conditions, its connection to other diseases seems to have been exaggerated, similar to sharing razors leading to all hepatitis transmission.

Allopathic Treatment and Traditional Tibetan Medicine

Within the Tibetan community, there is an integration of health services between TTM and allopathic medicine. Many choose to rely on both treatment regiments depending on the condition and personal preference. The general trend is that younger Tibetans prefer to rely on allopathic treatment while older Tibetans seem to report a favor TTM. Regardless of the mode of transmission, believed cause of disease, or age of respondent, all informants reported either allopathic treatment or TTM treatment. No one reported not seeking some form of treatment (even symptomatic treatment) which could be a reporting bias in the interview sample.

TTM involves three procedures during treatment. Doctors will check the patient’s pulse, analyze the patient’s urine, and then ask questions on behavior and patient history. The pulse examination is extremely complicated – involving much more than simply beats per minute. There are 12 different pulses in TTM. The urine analysis also is extremely complicated. Tibetan doctors are trained for six years at the Men-Tsee-Khang institute in Dharamsala. As one informant said, all three procedures are necessary for a proper diagnosis. TTM treatment utilizes traditional medicine made from herbal remedies and combinations of spices and crushed minerals at the Men-Tsee-Khang facility in Dharamsala. The prescriptions have complicated instructions involving crushing the medicine into a powder and taking with certain foods (and avoiding other foods) at designated times during the day with water of a specific temperature.

There have been ongoing attempts to integrate services between Department of Health at the CTA and Men-Tsee-Khang. TTM doctors have short learning rotations at Delek Hospital and many clinic staff and nurses will refer patients to TTM practitioners if they have chronic conditions. Many allopathic practitioners interviewed reported using Tibetan medicine and TTM practitioner adamantly admitted to the role of allopathic medicine. Informants in both cases recognized the relationship they have to each other. One informant said that people will first go to allopathic facilities and later go to TTM facilities for chronic treatment. TTM doctors discussed how with certain conditions such as tuberculosis and HIV, they will refer patients immediately to allopathic care because it is beyond their treatment capabilities.

While many informants indicated that Tibetan medicine is good at treating chronic conditions, people use allopathic medicine to treat acute illnesses (or what is thought to be acute illness). Most informants report that for conditions such as infections or tuberculosis, Delek Hospital is preferred. The hospital has an excellent reputation throughout the Tibetan community-in-exile for its treatment of tuberculosis. Several informants talked about how younger Tibetans use allopathic medicine exclusively. As one informant said, many Tibetans have lost touch with TTM. Some informants reported that youth particularly prefer allopathic treatment because it is simpler. Children do not like the complicated instructions of Tibetan medicine and the restrictions it involves. Additionally, informants reported that many people like taking Tibetan medicine because it causes fewer side effects. These same informants described how allopathic medicine is faster-acting and thus it is taken when time an issue. Generally, for many less severe conditions people utilize allopathic pharmacies for symptomatic treatment. This is typical for conditions such as the flu and seasonal illnesses both among youth and adults. In interviews with pharmacists, Paracetamol seems to be the most sought after medicine. One informant discussed how people are self-medicating on such medicines which is causing other liver problems. For longer term chronic illnesses (including pain) and for terminal illness, most informants reported that older Tibetans will seek treatment from TTM practitioners.

Stigma

There were some themes of stigma reported among informants’ discussion of illness. Hepatitis B interestingly did not seem to have any stigma even though it is transmitted (in part) sexually and there appears to be a stigma around STIs. People were open about the prevalence of hepatitis and even shared their own status. On the other hand, while tuberculosis did not seem to have external stigma, there was reported resistance and fear of treatment. One informant reported that he had encountered several clients who did not want to be tested for tuberculosis for fear of the results. Another reported that people only go for testing when their cough is very bad. Such opinions may indicate some level of stigma though it is unclear if it is internal or external to the patient.

There does appear to be stigma against women’s health issues. While only a few spoke about women’s health, they did indicate that there is resistance to acknowledging and discussing it within the Tibetan community. These same informants spoke particularly about health issues among newcomer women in the Tibetan community. One informant said that there are instances of rape and sexual assault as women make the journey from Tibet to exile. Another spoke about how many women from Tibet have undergone forced sterilization. Still another spoke about how in such cases there are few opportunities for women to discuss health issues with anyone. There are few advocates specifically for women. An informant also discussed the high instance of domestic violence in the Tibetan community in Dharamsala. The informant said that such cases are typically unreported and there is little acknowledgement of the problem within health and social service agencies.

Additionally, there may be stigma around HIV, though this stigma does not seem significant from the interviews because there is a low prevalence of the virus within the Tibetan community. While there is HIV stigma and stigma around STIs there is not, as previously stated, much stigma around hepatitis B even though they are transmitted similarly. The stigma from HIV may be diffused though the Indian community where it is significantly more prevalent. Only a few informants mentioned HIV or AIDS stigma when asked.

The issue of stigma against newcomers for health ailments has been discussed in the academic literature though this was not a common theme in informants’ responses. Some did indicate that newcomers have more health problems than exile-born Tibetans, while some reported that such newcomers face sickness due to changes in culture, practice, and climate. It was not clear in the reporting whether such perceptions have led to stigmatization.

Health Needs

Health needs were a common theme in informants’ interviews though the ambiguity of the term “health needs” led to a variety of responses. Most informants spoke about the need for some kind of prevention-focused education concentrated on behavior changes though some spoke about physical infrastructure changes such as improved water systems. Several other informants spoke about the shared perception of the inevitability of disease implying that neither education nor infrastructure were capable improving health (or preventing morbidity). One said that people accept common diseases as unavoidable – people do not know of alternatives. Another spoke about reproductive health issues among older women saying that women see such conditions as the normal course of events in one’s life.

While prevention was the main theme of reported health needs – only a few informants spoke directly about preventative health care. One spoke about the need for more frequent check-ups while another spoke about building a preventative health care relationship with a doctor. Alternatively, most people spoke about health education. Some of the informants said that they had received health education infrequently and irregularly in the past and spoke about the benefit in regular weekly health talks. One informant spoke about how people need to hear about health education often for it to be effective. Another spoke about highlighting health education into a more formalized “health day” that involved lectures and physical health examinations. While most informants agreed that Tibetans understand health (prevention and treatment) to some degree, they also admitted that there needs to be a more robust understanding of disease transmission. As one informant said, people understand that HIV is transmitted through blood but it is believed to be only through “a lot of blood” rather than just a needle prick. Other informants said that people in some cases are completely misinformed about disease transmission.

There were a variety of reported means for such education. As stated above, people tended to agree that health education should be more common. Some informants mentioned health talks as the effective means for education while others spoke about advertisements and pamphlets. Several informants spoke about the potential of television to advertise health campaigns. People spoke about using Tibet TV (a Tibetan language television station available throughout the settlements in India and online) as the venue for such education. One informant said that few have access to Tibet TV online but using regular programming could be effective. Still another talked about how Tibetans tend to only watch Tibet TV for news and then watch movies and other programming on different channels.

There were several informants who discussed some kind of financial health need. One was very quick to respond that people need financial resources to address their health. The informant said that many cannot afford advanced care and in such cases people avoid necessary life-saving treatment. While there is financial assistance from the local Settlement Office (municipal service office), various NGOs, and the Department of Health, an informant spoke about the difficulty in accessing such assistance. Another informant spoke about how people are more concerned with their “daily bread” than with disease. The informant gave the example that people will cease tuberculosis treatment before the end of their full course if it interrupts with their work. Surprisingly, few spoke about funding for health programming. One informant said that the Tibetan issue is a “freedom issue” and that there is less priority among foreign donors to support health funding needs for Tibetans. Most of the funding addresses the political issue so there is more competition for fewer resources for health care.

Other Needs: Local Capacity

Beyond just health needs, a commonly reported need was some kind of improved local capacity within the Dharamsala community. This idea of local capacity could be broken down into two themes. The first definition of capacity could be interpreted as locally driven expertise and capability. Many informants discussed that health programming and development should be driven by local stakeholders rather than external partners. Alternatively, capacity could mean valued jobs and opportunities for Tibetans. Many spoke about the need for more jobs requiring higher education in addition to vocational training for unskilled Tibetans.

Local capacity in terms of improving capabilities seemed to be somewhat of a “buzz” term among informants. Several stated that there needs to be more “local capacity” without further explanation. Another described how there needs to be more locally generated health projects. The informant discussed how many projects are directed by external stakeholders to the community rather than through local community members. Similar to this, an informant reported that there is too much external help dissolving in the community while there needs to be more local participants in projects. Another discussed how there needs to be active self-empowerment of local people. People need to foster their own self-determination rather than depending on government or external support. According to one informant, funding is temporary – whether the funding is through local stipends or foreign investment, there needs to be capacity building when funding ceases. Such views seem to reinforce the perspective that financial support may degrade ability of local people to address their own needs. As one informant said, many people depend on foreign experts for development and health programs when in fact there is local expertise that is not being used. This informant went on to say, “look within, not without” for opportunity.

The other capacity perspective reported was a need for more valued job prospects. While one informant spoke of the opportunity for work in the community, many others reported that the plethora of jobs is under-valued by a large population of those with higher education. Many available jobs in the community are in the service industry or hospitality. One informant said that there are few high level jobs for people with university education. Another described how hundreds of qualified applicants will apply for just a handful of civil service jobs. There are fewer job opportunities for Tibetans in the Indian government because Tibetans living in India are not citizens thus the few Tibetan government jobs become that much more competitive. Also, as one informant described, Tibetans prefer to work among other Tibetans because they do not connect culturally with the Indian community. This preference in turn increases the competition for the few high level positions within the community. On the other hand, some Tibetans spoke about the need for more vocational training for unskilled and uneducated Tibetans. Several spoke about improving skills training for single women and newcomers from Tibet to improve their self-empowerment and ability to support themselves.

Health Assessment Conclusion

Amartya Sen said that a health analysis must balance internal health views with external health needs [17]. In the case of the Tibetan community in Dharamsala, the myriad of perceptions are not entirely congruent with the limited health literature. Furthermore, these internal perceptions within the Tibetan community are anything but homogenous. People have an understanding of disease built on experience and culture. Such a context leads to diverse understandings on disease transmission, treatment, and health needs (both physical and mental health). People in the Tibetan community interpret disease and illness in many cases through the lens of Buddhism. Those who are religious rely heavily on Buddhism in creating mental health resilience while those who are less devout still view health within the context of Buddhist ideals and TTM. In spite of such perspectives, people seem to have a foundation of basic health information and there is strong agreement to introduce more health education and more preventative care. People put a lot of emphasis on personal behavior in addition to Karma. Such an approach incorporating behavior and self-determination can also be seen in reporting of internal capacity and the theme of working towards a self-sustaining Tibetan community.

The external health situation in the Tibetan community seems in some ways to over-simplify the conditions of the Tibetan population-in-exile. Mental health research indicates a prevalence of post-traumatic stress symptoms that would not be unusual given past trauma. Such a picture of mental health within the Tibetan community is significantly more complex and may not accurately capture mental health issues among Tibetans. Mental health researchers have attempted to describe the method by which Tibetans become resilient to mental health trauma (if in fact they do), while many informants report low instances of mental health or emotional issues. Psychological measures and definitions of mental health and emotional stress used in mental health research may conflict with locally appropriate definitions and conceptions. Diverse internal perceptions must be considered together with the external health conditions for a more complete understanding of health and society.

Participation

The diverse framings of health among Tibetans in the Dharamsala community reveal two conclusions. The first: Tibetans represent a myriad of interests and needs, and the second: informants report needs that are not congruent with the current aid model within the community. This analysis argues that these are dependent conclusions. The difference between the expressed need for programs and the status quo results [in part] from a lack of understanding of the complexity of the community. Many informants expressed a need for regular health education and long term capacity building yet informants also spoke about terminal financial investment and short term volunteerism in the community. These seemingly opposing views between need and response are, as this analysis argues, a result of applied participation. Participation in the case of the Tibetan community is not through active “participatory” programs as it is in other development contexts, but rather it is a more subtle participation – mostly through the assumption of collective identity and collective action.

The process of participation is frequently used by development programs more as a concept for implementation then a concrete theoretical model [26]. In many cases it involves participatory techniques such as participatory learning and action (PLA), demand-driven approach (DDA), or participatory rural appraisal (PRA). Such technical processes are based on the assumption that underserved communities are marginalized and thus there needs to be an active attempt for inclusion of a community towards development outcomes [27]. The shortcoming of participation is not in the assumption that many of the most underserved and under-resourced communities are marginalized, but rather in how such solutions to marginalization are typically envisioned. Programmatic solutions are meant to be community-driven by local stakeholders, though are typically pre-planned interventions by external organizations [28]. Such pre-formed programs are based on a variety of assumptions: first, that communities consist of members with a shared vision; second, that the community wants a change; and third, that the community members all have equal voice in creating this change [29]. Wassermann has described this assumption pattern in South Africa with the commonly used idea of “Ubuntu.” The word itself is a concept loosely meaning “togetherness” or “shared community” among different cultures and languages in southern Africa. This concept has been used by many programs as the foundation for community participation when in fact different communities have local meanings that differ vastly from one another [29]. Thus such a term is not generalizable to entire populations. This comparison is apt for the Tibetan community-in-exile in regard to health and capacity needs. While the community falls under the umbrella of Buddhism and shares similar lenses, there are various interpretations of the same value systems.

The existence of such different interpretations of similar objective criteria such as health and disease creates inherent conflicting values. Thus, there cannot be a “single collective identity” by which to define the community [2]. There are many perspectives within a single community and aggregating people excludes alternative interpretations [30]. The local structure of a community has power structures that play into such participation. The most dominant narratives may dominate “participation” and more marginalized individuals may be further pushed from a democratic voice [30]. Tibetans living in India are all part of the refugee community, though aggregating people under a common “refuge” umbrella discounts the varied identities and differences between those born in exile and those born in Tibet under Chinese occupation and then immigrating to India. Those born in exile and those born in Tibet have different views of family, community, and social capital [31]. Additionally, those born in different regions of Tibet have markedly different cultures and language dialects from one another. Such constructions that participation depends on are based on many factors including lifestyle, history, religious practice, gender, age, and education, all of which differ from person to person in the Tibetan community. People define “community” according to such factors creating a plethora of definitions that are joined under a singular definition of Tibetan culture [32]. Unfortunately there is typically little understanding of such internal community structure before participatory programs begin [30].

By aggregating populations under a singular identity, there is a risk of further marginalizing specific populations. The power structure prior to “participation” contains dominant narratives such as community leaders and wealthier families, as well as alternative power narratives which usually consist of the poorer households and in many cases women [7]. Those with the least voice in a community are in many cases not included in the participatory decision making process. People in marginalized populations may be intimidated by such decision making as they are unused to power sharing within a community [2]. In this way, participation may appear indoctrinating as it “domesticates marginalized people” within a simulated power structure [2]. Women are particularly marginalized in this process as they play instrumental roles within a community that in many cases are not recognized with traditional hierarchies [33]. If a participatory development program is not well articulated, women and other marginalized population may not be included democratic sharing of decisions [33]. Within the Tibetan community, democratic decision making may reinforce traditional power structures and create barriers for women, newcomers from Tibet, the poorest, and the least educated community members. The creation of a “unified vision” within the Tibetan community may have further unintended consequences as it may fragment the population according to artificial identities [8]. Furthermore, power dynamics can exaggerate the different identities of a community and create more hostility and tension by highlighting such differences [7].

Aggregating communities into a participatory strategy may not only ostracize marginalized populations but may create development agendas that are not appropriate within a community [6]. The demands and strategies of development programs and participatory approaches are often unrealistic for poorer communities and highlight only one of many agendas for community development [26]. As expressed by several informants, the Tibetan issue has become the freedom issue and there is less funding priority for other pressing issues within the community including health education and preventative care. Donor agencies (as in the case of the Tibetan community) can create protocols for participation that exclude those agencies that interfere with such objectives [6]. Among NGOs in Dharamsala, health and social service NGOs are the least funded in place of political and advocacy focused organizations.

Discussion

This analysis has yielded many perceptions of health within the heterogeneous Tibetan community. There are differences between newcomers from Tibet versus those born in exile. The monastic community reports different mental health perspectives than the lay community. Issues affecting women seem to be rarely discussed except by the women’s advocacy organization. Social service and health organizations within the community differ from one another in strategy, output, and mission. Many informants cited the “middle way” teachings of the 14thDalai Lama as the foundation for their work and that of their organization yet there were organizations in Dharamsala that focused intently on the Tibetan freedom cause promoting the cause at the cost of one’s life. Additionally, many organizations orient themselves towards the preservation of Tibetan culture. This is particularly the case in the last decade as schools have shifted to all Tibetan curriculums and have moved towards using Tibetan language exclusively as the teaching medium. Informants spoke critically of the assimilation of Tibetans into Western culture losing the connection to Tibet and the fervor towards independence. Alternatively there are informants who expressed support of Tibetans moving abroad and seeking jobs where they can even it they are disconnected from the Tibetan community as a whole.

Health views are similarly divergent from one another. Many informants reported less severe ailments as more significant causes of morbidity focusing less on diseases such as tuberculosis and hepatitis. Some health professionals alternatively expressed irritation that people in the community were unaware of such severe health issues and were reluctant to seek immediate treatment. Some informants reported that there are mental health problems among Tibetans though others were adamant that such concerns do not exist among Tibetans in exile. While people seek treatment both from allopathic practitioners and from TTM, some allopathic doctors did not value TTM as a legitimate treatment modality beyond psychosocial support.

Conflict within the Tibetan community exists at a variety of levels. Informants had different agendas from one another demonstrating that there is no one particular perspective that represents that entirety of the Tibetan people in exile or much less in Dharamsala. In spite of such complexity, the community has been informally involved in participation as people have been aggregated towards certain dominant trajectories. As stated above, funding exists for the Tibetan freedom issue while there is reported inadequate funding for community health projects. Many informants spoke about how there is terminal funding for organizations but not sustainable funding for capacity building. Another informant described how their organization has to constantly search for different funders for yearly expenses. One informant described how funders lay out very particular criteria for how development agencies can benefit the Tibetan community yet avoid building the internal capacity of the community. Most every respondent spoke about the need for regular health education and job creation. Both of these needs reflect self-determination and self-sufficiency. Tibetans commonly reported building their own capability to meet their own needs yet this differs from the services they are currently being offered. One informant spoke about how such external capacity essentially ignores the internal expertise within the Tibetan community. By focusing on such external capabilities, rather than on local knowledge, there is a reinforcement of community deficits [34]. The aggregation of the community along a trajectory towards short term solutions rather than robust capacity building has focused community energy on misaligned goals. Thus, as one informant said, “there is a lot of wasted energy in the community.”

Reflexivity

Participation can create unintended consequences and misalignment of community needs but it can also foster a community-generated voice that leads to sustainable solutions [35]. To do so, development protocol must work “with the grain” [36]. Such a process must recognize all the different interests within a community and the role different members have [36]. In this way traditional participation – in which a community is tasked to work towards determined outcomes – can move towards more plural and inclusive “reflexive development.” The plurality of a system is dependent not only on understanding the complexity of a situation but also understanding how such varied views interact and exist within the environment [1]. Decision-making ultimately needs to reflect the goals of improving lives rather than the interests of a select few within the community [37]. The STEPS Centre has redefined the idea of sustainability to thus reflect valued progress. Sustainability has for many development programs existed in a managerial sense for the continuation of a program in and of itself, while through embracing the varied alternative perspectives within a community, there can be shift towards programs that sustain valued changes [1]. This move from concentrated agendas to plural social inclusion is valuable though it comes at a cost. By integrating and embracing complexity, there is also a natural shift towards complication. Many participatory approaches have been developed out of a need to reach a concrete development outcome (lower infant mortality, bed-net prevalence, vaccination rate, etc.). Rather, by embracing uncertain conclusions and ambiguous trajectories, there can be more valued changes that incorporate community expressed needs [1]. There must be long term investment based on perceptions and dependent on indigenous knowledge [4]. Reaching valued development also involves a focus on the capabilities-centered approach towards development rather than top-heavy programming. People need the opportunity to participate in such reflexive development without coercive participation [38].

Community Engagement

While aggregating varied identities can undervalue local resources, embracing complexity to a high degree is unproductive [1]. Yet reflexivity through diverse framings can still be a tool to reach a more valued development. There have been many attempts at understanding productive community engagement and many communities have benefited from mobilizing citizenry. Engagement in a theoretical sense is “formal” social integration [39]. It is the process of getting communities involved in decisions that affect them [40]. This in many ways is similar to participation though the following discussion on engagement reviews techniques that created positive change without oversimplifying the alternative narratives within a community. The focus of this engagement discussion is primarily on tools by which communities, such as the Tibetan community in Dharamsala can achieve reflexive development.

Effective community engagement needs first and foremost to be based on community defined needs [41]. As many informants discussed, expertise is often sought from external partners. Social service agencies reported relying heavily on foreigners who build little continuity in long term capacity development of an organization. Indigenous knowledge is necessary for effective “community driven” engagement [35]. Top-heavy programming based on scientific knowledge as opposed to local knowledge can erode local confidence. Informants discussed that when local projects are run by external partners, the capacity of the local community is questioned and degraded. Health development must build and foster social capital that already exists [41]. This does not mean creating uniformed social capital but rather recognizing the different conceptions of social capital among community members [31]. In this sense, embracing the indigenous system within a community and its inherent complexity involves a great deal of uncertainty. Consequently, one the most commonly cited tools for community mobilization around health care deliver involves utilizing some type of community-based health worker. Community-based health workers or community health workers (CHWs) are members of communities trained to provide basic health services. Their value over other health systems solutions is their connection to the community and the fact that they are already integrated into the local community and local social fabric [42]. CHWs utilize indigenous knowledge and can recognize existing forms of social capital. Within complex communities such as the Tibetan Dharamsala community, they can understand the tensions and cohesions of the community, though they can also represent an external entity to many people [43]. CHWs as a health engagement tool are most effective when they build upon already existing capacity [43]. Their effectiveness is based on their relationship to the community [44]. Thus a CHW may suffer from the same shortcomings of participatory development processes – not fully recognizing all the diverse framings within a community and oversimplifying health needs under certain pre-defined criteria.

This analysis does not necessarily argue that CHWs are the most effective model for pluralistic health development, but rather recognizes past achievements in CHWs mobilizing populations for health outcomes. CHWs have been able to focus on inequalities in health access because they can create access through home visits that formal health facilities cannot bridge [42]. They represent a venue for health promotion that is locally appropriate that can reach out to those who do not necessarily seek available health education [45]. Additionally, they can increase participation in already active advocacy organizations focusing particularly on marginalized communities [46]. One downfall of the CHW model is that that engagement in the community is highly based on the motivation of the CHW [47]. This process of mobilization becomes difficult as there needs to be individual incentives and community recognition of the worker [44]. Health mobilization is a time-consuming and complicated process. Informants expressed a need for such a process over simplified financial contributions. Participation tends to bypass the complication of local health solutions through a uniformed plan though such uniformity does not in many cases answer the needs of communities. Effective engagement is coordinated, integrated, and long-term [48]. Engagement in health must move from the simple to the complex as health delivery, health access, and disease etiology are integrated and dependent on many external factors. Interventions encounter “highly dynamic human-disease ecological systems” perceived and understood through “varied experiences and framings by different social groups” [49]. The long-term health outcomes of the Tibetan community-in-exile depend in part on how the community and external partners embrace such a multifaceted, yet realistic understanding of health.

Limitations

The first and perhaps most significant limitation was the method of data collection for the health assessment. The interviews with informants were conducted primarily in English with only a few interviews using translators. While many informants were fluent in English, some of the more complex health messages may not have been properly communicated. Additionally, it would have been helpful to first assess the proper terminology for certain physical and especially mental health concepts. A significant limitation is that this analysis favors macro health perspectives. Those interviewed were, at the time of interview, senior staff members of different organizations; Tibetans unassociated with NGOs or other institutions may report more variation in health perceptions. This would especially be the case for reporting of disease transmission as most interviewed for this assessment have higher levels of education than average Tibetans in the community. This assessment did not interview community stakeholders or community leaders not associated with formal organizations. Furthermore, this assessment only interviewed those associated with the Tibetan community. Among the informants, only several were non-Tibetan. Capturing a broader Indian perspective would expand the perceptions of health. The views expressed by informants captured in this analysis are extremely complex and are based on experience, Buddhism, and a personal relationship with the 14thDalai Lama. Such views are difficult to understand and more so, difficult to describe. While the analysis hopes to capture local opinions, communication may limit the accuracy of such reported views.

The research available on the Tibetan health issues is limited and primarily focuses on mental health topics. Research on tuberculosis among Tibetans and other important health issues such as the low fertility rate is almost non-existent. Additionally, the mental health evaluations reviewed in this analysis are limited by diagnostic criteria that may not be accurate within the Tibetan Buddhist community. Such mental health assessments may have inaccurately aggregated the population by false criteria. Respondents in this analysis indicated that while all Tibetans in Dharamsala are Buddhist, there are many levels of religious practice and devotion. Many assessments analyzed the mental health symptoms of newcomers from Tibet though as reported by informants, there are differences among newcomers dependent on their place of origin in Tibet including cultural practice, socio-economic background, and language.

An important limitation in this analysis is the critical evaluation of participation and its tendency to oversimplify complex social dynamics. While there are many framings within the Tibetan population, a great many people are unified under the Tibetan cause and are passionate about Tibetan freedom. Furthermore, while many have different levels of Buddhist practice, Tibetans in Dharamsala are uniformly Buddhist and almost entirely follow the teachings and lessons of the 14thDalai Lama. Every respondent cited some connection to the 14thDalai Lama – some see him as a religious teacher while some still see him as a political leader (even though he stepped down from his political role). Thus while complexity within the community is inherent, there are levels of cohesion that should not be ignored.

The context of this analysis is to understand the misalignment of reported needs with current programming and to better understand the perspectives of Tibetans in Dharamsala. While participation is in some ways painted as a negative component of the development process, there are positive uses of participation as a tool for social inclusion. Primary Health Care evolved in some ways from the urging of increased participation from the Alma Ata Conference [41, 50]. Such a push for participation brought forward the ideas of social inclusion and democratic voice in developing communities [41]. While this analysis examines how such a process can be marginalizing, it should be noted that such a conclusion is not universal.

Conclusion

In spite of such limitations, the results of this analysis indicate that the community in Dharamsala reports needs that are not being met. Respondents indicate a variety of significant diseases and many different descriptions of disease transmission. People discussed seeking treatment from a combination of allopathic care and TTM. Social stigmas were varied – many avoided discussing issues affecting women and mental health conditions, while people had different conclusions on newcomers’ health. While the 14thDalai Lama does act as a unifying force, his teachings may create a common trajectory not incorporated into development models. People in general discussed a desire for long term solutions versus short term results. Capacity and health education were commonly reported though many spoke of the lack of “valued” jobs and the rarity of health education. Thus there proves to be a discordance between needs and current practice. Participation can in this way be limiting, oversimplifying the community directly leading to misalignment. Health and development programs are guided by simplified (and often external) agendas leading many respondents to discuss the lack of value placed on internal expertise. Many expressed that Tibetans themselves tend to believe that they need outside assistance and in turn undervalue their own skills and knowledge. Such internalized oppression can be self-reinforcing [51]. On the other hand, real [valued] participation embraces indigenous knowledge and analyzes dynamics of “conflict, consensus building, and decision making” [30, 34]. Sustainable solutions are based on incorporating a broader understanding of a system within its environment [1]. The Tibetan community in Dharamsala embodies many the messages of peace promoted by the 14thDalai Lama. Such an identity should not be recognized as limiting for the various framings within the Tibetan community. For valued progress that is recognized and appreciated by all of a community, there needs to be an inclusivity of the plural social dynamics and varied health narratives of its members.

Recommendations

There is significant potential for further research on this topic of participation and health. The models of participation reviewed in this analysis are specifically from developing country contexts though there may be more relevant and robust models from an examination of developed countries. A more comprehensive analysis of participation models could help reveal more subtleties on the negative outcomes within the Tibetan community as it transitions to a more developed population.

This analysis is only an introduction to the health of the Tibetan community in Dharamsala. There are many other alternative narratives that must be considered in bridging health research to practice – especially the most marginalized members of the community. There are differing needs between those born in exile and those born in Tibet, between men and women, youth and elderly, monastic and lay, monks and nuns, and essentially every distinct cohort. The interviews in this analysis focused on local leaders and thus excluded the marginalized groups that the analysis itself argued are most commonly omitted. Special attention to the most marginalized perspectives may expose even more heterogeneity that should be considered in public health action.

There are many perspectives in the Tibetan community and each has its own validity in determining personal health outcomes. Objective health measures are appropriate only in so much as they respect the numerous subjective framings of health. People base their understandings of health on Buddhism, the 14thDalai Lama, the Tibetan political issue, the refugee context, local capacity, and foreign interests. Members of the Tibetan community have various needs and opinions and health programs should continuously reevaluate the needs of the community to effectively align with these numerous subjective framings. Public health action in the Tibetan community needs to be based on consistent research focusing on building more comprehensive understanding of local knowledge and capacity. Programmatic solutions in turn should build on this knowledge and focus on pluralistic solutions to meet the needs of a dynamic and complex community.