Social inclusion and exclusion of people with mental illness in Timor-Leste: a qualitative investigation with multiple stakeholders

Social exclusion of people with mental illness remains an unresolved global public health and human rights challenge [1]. Social exclusion and social inclusion are not simply the inverse of each other, and there is no consensus on definitions [2]. We adopt the World Health Organisation (WHO) definition of social exclusion as: “the dynamic, multi-dimensional processes driven by unequal power relationships interacting across four main dimensions - economic, political, social and cultural - and at different levels including individual, household, group, community, country and global levels.” [3]. We define social inclusion in relation to the right to full participation in society espoused through the United Nations Convention on the Rights for Persons with Disabilities (UNCRPD) [4]. That is, social inclusion involves feeling accepted, having individual and collective agency to determine participation, and the removal of structural and attitudinal barriers to participation [5, 6].

Stigma is a key determinant of social exclusion [3]. Stigma is a social and subjective process involving problems of knowledge, prejudicial attitudes, and discriminatory behaviour [7‐9]. Across countries, stigmatising beliefs often cast people with mental illness as dangerous, unpredictable and unintelligent; beliefs which are enacted through discriminatory and exclusionary behaviours [10‐12]. Globally, many people with mental illness are excluded from employment (economic exclusion), denied legal rights to vote, marry or own land (political exclusion), and ostracized (sociocultural exclusion) [13‐16].

Stigma, discrimination and social exclusion have deleterious effects on people with mental illness. Stigmatising attitudes towards people with mental illness are linked to poor well-being and self-esteem [17]. Mental illness and social isolation are both linked with early death through the direct and indirect pathways of chronic disease and lifestyle factors [18, 19]. Mental illness stigma and discrimination also impede help-seeking and access to health care, which inhibits recovery [11].

Promoting social inclusion of people with mental illness is consequently a key goal of human rights and global mental health programming to achieve people-centred mental health care [20]. Interventions to promote social inclusion aim to minimize the impact of attitudinal, structural and behavioural drivers of social exclusion. In high-income countries (HICs), social inclusion of people with mental illness has been promoted through community-based mental health, employment and housing services, legislative protections, and anti-stigma interventions [21]. There is good evidence that supported employment programs for people with mental illness and interventions to reduce mental health stigma (e.g. mental health education, direct contact with people with mental illness) are effective in HICs [22, 23].

However, research about social inclusion of people with mental illness (i.e. theory, prevalence, experiences of, and interventions) from low- and middle-income countries (LMICs) is sparse, which is problematic because explanatory models and consequences of mental illness, and the extent of stigma and social exclusion, differ across cultures [6, 24]. The communitarian orientation of many LMICs locates responsibility for the individual, their illness and stigma with the family [24‐26]. There is an emerging body of evidence related to social inclusion and exclusion of people with mental illness in Asia, but only a few studies have examined the perspectives of people with mental illness and their families, and even fewer have explored positive effects of inclusion [27‐30].

In Timor-Leste, a LMIC in South-East Asia, the limited available research about mental health has focused primarily on health service access, illness prevalence, and customary healing [25, 31, 32]. The recently approved National Mental Health Strategy Timor-Leste 2018–2022 strives for a comprehensive people-centred mental health system, including programming to eliminate stigma and discrimination towards people with mental illness [33]. This study aims to investigate the experiences of and opinions about social inclusion and exclusion of Timorese people with mental illness from the perspective of multiple stakeholders. This is essential information for developing programs that promote social inclusion relevant to the local Timorese sociocultural context, and also for providing a starting point for deeper theoretical consideration on the topic grounded in LMIC knowledge.

Individual and group interviews with a range of stakeholders were conducted in communities, health facilities and workplaces. Data were collected between September 2017 and August 2018 as part of TH’s PhD project investigating people-centred mental health care in Timor-Leste. This research was intended to inform the implementation of the National Mental Health Strategy Timor-Leste 2018–2022 [33]. Ethical approval was obtained from University of Melbourne Human Ethics Sub-Committee (1749926) and National Institute of Health in Timor-Leste (1070MS-INS/DE-DP/CDC-DEP/IX/2017).

Findings are structured using the sociocultural, economic and political dimensions of the WHO definition of social exclusion [3]. Findings on access to health are reported elsewhere [44]. Participant quotes are labelled as: person with mental illness (PWMI); family member (FM); service provider (SP); decision maker (DM); civil society member (CS); and other community member (OT). Table 2 presents the themes and sub themes of social inclusion and exclusion.

We report here an investigation of multiple perspectives on the social inclusion and exclusion of people with mental illness in Timor-Leste. People with mental illness in Dili, Baucau, Venilale and Laclubar faced widespread sociocultural, economic and political exclusion. Nonetheless, experiences of social inclusion for people with mental illness were also described at both the family and community levels.

The stigmatising beliefs that Timorese people with mental illness are dangerous, lack capacity and have an incurable illness are consistent with stereotypes that have been reported in both HICs and LMICs [12, 46]. Sometimes these beliefs were related to the sociocultural conceptualisation of mental illness as a sign of intractable ancestral punishment, as has been reported in other parts of Asia [30]. Mental illness may appear intractable to people in Timor-Leste due to the lack of effective mental health care, which means that people may not witness the possibility of recovery [32, 44]. Attributing the cause of mental illness to the family (past and present) and the consequent shame they experience has been described globally [10, 47], and underscores the importance of adopting a family-centred approach to mental health care, stigma reduction and social inclusion in Timor-Leste.

Some features of mental illness can make it difficult for unwell people to fulfil prescribed family and social roles (e.g. lack of concentration and motivation may hinder reciprocal relationships with community members). Because of these unfulfilled social roles, community members may perceive people with mental illness negatively and keep social distance [28]. Timorese people, including extended family members, may also distance themselves from people with mental illness because they fear some illness behaviours (e.g. aggression) [48, 49]. Social distancing towards people with mental illness is seen elsewhere in Asia, with a large study of 960 adults in India finding that participants reported more social distancing when they believed that people with mental illness were dangerous [49]. Specific to Timor-Leste, social distancing may also relate to a fear from family and community members that they will be economically burdened because of the need to contribute (i.e. money or livestock) to healing rituals, or even that they may become ‘spiritually contaminated’ themselves if they are involved in spiritual processes to resolve their family’s history of mental illness. In this setting, rights-based approaches to mental health offer an alternative narrative and approach to support people with mental illness.

The marginalisation and vulnerability of people with mental illness in Timor-Leste was also a prominent finding. Despite protection under the Timorese constitution, people with mental illness experienced multiple forms of discrimination and violence that included bullying, physical and sexual violence, and confinement. These findings echo previous human rights reports emerging from Timor-Leste and globally [1, 50, 51]. Confinement and restraint are explained as ways to protect people with mental illness in many countries [1, 28, 52]. However, research from Indonesia and Ghana demonstrates that families also employ chaining when they feel inadequately supported and have to attend to competing demands [52, 53]. Our findings highlight the urgent need for the Timor-Leste government to provide effective mental health treatment as a strategy for promoting recovery and social inclusion as well as reducing reliance on chaining and confinement.

The stigma, discrimination and social exclusion of people with mental illness in Timor-Leste reflect an unsupportive and restrictive environment cutting across multiple levels. Participants reported that many people with mental illness were excluded from formal employment, educational, social protection and legal systems. Timorese people who are unwell and excluded for lengthy periods often lacked the skills and education required for independent living and employment, which, over time, become increasingly difficult for them to acquire [54]. They may also opt out of activities or not disclose their illness because they anticipate stigmatizing attitudes and discrimination [55]. This underscores the importance of interventions to combat individual, community and systemic forms of discrimination in order to accommodate the rights, needs and perspectives of people with mental illness and their families.

The exclusion of people with mental illness from formal systems may be explained in part by Timor-Leste’s broader development challenges [50]. Despite enormous progress since independence, Timor-Leste’s national employment rate is only 53, and 86% of people with disability in Timor-Leste do not receive the disability pension [37, 40]. Inconsistent legal and political practices regarding people with mental illness may reflect a lack of legislative infrastructure [56], including a lack of clarity in the Timorese constitution regarding the rights of people with mental illness in the absence of UNCRPD ratification [57]. Given the low (under) estimated population proportion of Timorese people with mental illness, promoting their social inclusion may not be a government development priority.

Examples of inclusion of people with mental illness in Timor-Leste were also described. Family and community structures promoted unity, acceptance and responsibility for people with mental illness. The closeness of the community, particularly in rural areas, increased community members’ exposure to and familiarity with people with mental illness, which has been found to reduce stigma and social distancing [49, 58]. People with mental illness were also able to derive social capital by participating in activities surrounding family life and livelihoods (i.e. agricultural and domestic tasks) that contributed to intergenerational well-being and hence actively promoted their sense of belonging [59]. Contribution to livelihoods was identified by people with mental illness in India and Nepal, other communitarian contexts, as an important aspect of social inclusion [26]. Despite their minimal formal involvement in disability persons organisations, some people with mental illness have benefited from participation in the burgeoning disability-rights movement in Timor-Leste, which promotes the availability of the disability pension and CBR course. Inclusion of people with mental illness within the mainstream disability-rights movement is a key focus of development practice throughout the Asia Pacific due to recognition that such movements have tended to concentrate on people with physical or sensory disabilities [60]. In Timor-Leste, existing networks of peers with mental illness could be mobilised to strengthen civil society representation of people with mental illness.

This study has several limitations. There is a risk that participants did not disclose relevant negative experiences, especially to a foreign interviewer, which may mean that we did not capture the full range of experiences. We could not explore the effects of illness type on social exclusion as we did not undertake clinical assessment of participants. Our sample was not representative and was unlikely to encompass the most vulnerable people with mental illness because we recruited people in contact with health and social services, most of whom were from Venilale and Baucau. However, we believe the emphasis on rural-dwelling Timorese was important because most of the population lives outside urban centres. In addition, other stakeholder groups also described the inclusion and exclusion of people with mental illness across Timor-Leste, thereby providing some triangulation of findings.

Future research could employ more participatory methods (e.g. Photovoice) to further engage the voices of Timorese people with mental illness so that they can tell their own stories and use research as a practice of inclusion [61]. Further investigation of the prevalence and extent of these experiences of social exclusion, and to better identify protective factors that promote the social inclusion of people with mental illness in different regions of Timor-Leste is indicated.

While this article has concentrated on the multi-faceted exclusion of Timorese people with mental illness and their families, there are local cultural strengths that can be harnessed for realising social inclusion. Social inclusion can be promoted by emphasizing the synergies between human rights and Timorese sociocultural values of acceptance, unity and responsibility. There is a clear need to increase population awareness of mental health and illness in general, and strategies for inclusion in particular. Such mental health education should incorporate the sociocultural conceptualisations of mental distress and the priorities of people with mental illness and their families, including practical barriers families face when caring for unwell family members (i.e. time and resource demands). There is an urgent need for the Timor-Leste government to prioritise the development of rights-based mental health services that offer an explanation of, and approach to, mental illness that complements sociocultural practices. Given that health is just one aspect of social inclusion, attention is also needed to ensure that services and systems across sectors are inclusive and accessible for people with mental illness and their families.