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

Abstract

Background: Social inclusion is a human right for all people, including people with mental illness. It is also an important part of recovery from mental illness. In Timor-Leste, no research has investigated the social experiences of people with mental illness and their families. To fill this knowledge gap and inform ongoing mental health system strengthening, we investigated the experiences of social inclusion and exclusion of people with mental illness and their families in Timor-Leste. Methods: Eighty-five participants from the following stakeholder groups across multiple locations in Timor-Leste were interviewed: (1) people with mental illness and their families; (2) mental health and social service providers; (3) government decision makers; (4) civil society members; and (5) other community members. Framework analysis was used to analyse interview transcripts. Results: People with mental illness in Timor-Leste were found to face widespread, multi-faceted sociocultural, economic and political exclusion. People with mental illness were stigmatised as a consequence of beliefs that they were dangerous and lacked capacity, and experienced instances of bullying, physical and sexual violence, and confinement. Several barriers to formal employment, educational, social protection and legal systems were identified. Experiences of social inclusion for people with mental illness were also described at family and community levels. People with mental illness were included through family and community structures that promoted unity and acceptance. They also had opportunities to participate in activities surrounding family life and livelihoods that contributed to intergenerational well-being. Some, but not all, Timorese people with mental illness benefited from disability-inclusive programming and policies, including the disability pension, training programs and peer support. Conclusions: These findings highlight the need to combat social exclusion of people with mental illness and their families by harnessing local Timorese sociocultural strengths. Such an approach could centre around people with mental illness and their families to: increase population mental health awareness; bolster rights-based and culturally-grounded mental health services; and promote inclusive and accessible services and systems across sectors.

Religious Mosque Leaders (Khateebs): Awareness, Perceptions, Practices and Attitude towards Mental Health, Riyadh Region, Saudi Arabia

“…Evidently, the prevalence of MDs, determined by age, gender, marital status, ethnicity socioeconomic status, rural residents, migration and displacement, unemployment, poverty, associated physical diseases, life events, disastrous wars, and conflicts varies across the world and is on the rise globally [32][33][34][35][36][37] evidenced by Mosque leaders who perceived common occurrence of MDs in Saudi Arabia. Despite global concerted efforts to improve the image of patients with MDs, stigma, negative attitudes, social exclusion, being dangerous to society, and discrimination contingent on multiple factors still persist against mentally ill population around the world and our study supported this notion [38][39][40][41][42][43]. Unlike family therapy and family and socio-religious supports that mediate protective role [44][45][46], unhealthy family interactions embedded in unhealthy criticisms, over-involvement and hostile attitude towards mentally ill patients tend to worsen their condition, cause relapse, acute psychotic decompensation, rehospitalization and poor outcome [47,48] that partly substantiated by the present online survey.…”

Access to health care for people with disabilities in rural Malawi: what are the barriers?

“…With regard to the perceived attitudes of community members towards disability, the findings of this study contrast with those of other studies conducted in Malawi [35,39], in that our participants generally reported that their community was supportive, and that even those who did experience social exclusion because of their disability did not find it affected their access to health care. Some studies have found that stigmatisation and discrimination at the community level discourages people with disabilties from attending health services [40,41]. It might be inferred, therefore, that the feelings of exclusion and restricted freedom described by some of our participants could 'delay the decision the seek care' but, when asked, our participants denied that this was the case.…”

Service user and family participation in mental health policy making in Timor-Leste: a qualitative study with multiple stakeholders

“…Practically, there was no service user organisation to facilitate individual and collective engagement of Timorese people with mental illness, who have limited opportunities to develop advocacy skills due to their exclusion from society and public services (i.e. education, social welfare, legal) [36]. Socially, Timorese norms do not legitimise the role of people with mental health problems in decision making [43], particularly for high level national policies, as has been found in other LMICs [16,19].…”

“…This latter frame may focus on reducing the community-based and systemic exclusion confronted by Timorese people with psychosocial disabilities (e.g. exclusion from education, employment, confinement and physical restraint) [36] and the combating of the biomedical model of mental illness, which is a well-documented challenge to social participation for people with mental health problems [45][46][47]. Disability rights have been a powerful impetus for uniting people with psychosocial disabilities in some countries in the Asia Pacific [10], and there is already a strong disability sector in Timor-Leste for people with physical and sensory disabilities [48].…”

“…In many HICs, mental health service user and family participation are now approached separately to account for the unique, and sometimes conflicting, needs and views of these identity groups [15,50] [51]. However, previous research in Timor-Leste identified a central role of family in mental health such that individual needs and preferences are defined and enacted in relation to family [36]. Hence, further consideration is needed to ensure that participatory mechanisms for mental health reflect Timorese sociocultural organisation around family.…”