Exploring the potential use of patient and public involvement to strengthen Indonesian mental health care for people with psychosis: A qualitative exploration of the views of service users and carers.

BACKGROUND: Patient and public involvement (PPI) has the potential to strengthen mental health systems in Indonesia and improve care for people living with psychosis. Current evidence from other parts of the world demonstrates the need to understand the contexts in which PPI is to be enacted to ensure optimal implementation. OBJECTIVE: To understand service users' and carers' views on the current use and potential applicability of PPI within Indonesian mental health services. DESIGN: Qualitative study incorporating focus groups analysed using thematic analysis. SETTING AND PARTICIPANTS: Participants included 22 service users and 21 carers recruited from two study sites in Indonesia (Jakarta and Bogor). All participants had experience of psychosis either as a service user or carer. RESULTS: Despite the value attributed to PPI in relation to improving services and promoting recovery, current use of such activities in Indonesian mental health services was limited. Participants expressed a desire for greater levels of involvement and more holistic care but felt community organizations were best placed to deliver this because PPI was considered more congruent with the ethos of third-sector organizations. Additional barriers to PPI included stigma and low levels of mental health literacy in both health services and communities. DISCUSSION AND CONCLUSION: Participants felt that there was potential value in the use of PPI within Indonesian mental health services with careful consideration of individual contexts. Future aspirations of involvement enactment should ensure a central design and delivery role for third-sector organizations. Facilitators to global collaborative research in the context of the current study are also discussed.

Exploring the potential of civic engagement to strengthen mental health systems in Indonesia (IGNITE): a study protocol.

BACKGROUND: Indonesia has the highest rate of years of life lost to disability or early death from Schizophrenia than any other country in the world. More than 90% of people with mental illness do not get any treatment and tens of thousands of people with psychosis are illegally detained ('pasung') in the family home. Civic engagement, a core part of the recent World Health Organisation global strategy, has the potential to address some of these challenges through the development of person-centered models of care. The aim of the study is to develop a testable systems level, culturally appropriate, civic engagement framework for use in Jakarta and Bogor, Indonesia to strengthen local mental health services. METHODS: A mixed methods study underpinned by a realist approach will be undertaken across four phases in two study sites in Indonesia (Jakarta and Bogor). Phase 1 will explore the use of civic engagement across South East Asia by conducting a systematic review of existing evidence. By surveying 300 mental health professionals, phase 2 will identify the stakeholders, the sources of collaboration and the evidence used by professionals in decision making within local mental health systems and identify potential opportunities for civic engagement within the system. In order to explore the potential use of civic engagement within Indonesian mental health services and identify priorities for a culturally appropriate framework, phase 3 will undertake two focus groups with participants with experience of psychosis or caring for someone with psychosis (n = 20-30). Professionals and other key decision makers in a range of roles across the system at a national (n = 5) and local level (n = 10-15/site) will also take part in semi-structured interviews. Phase 4 will co-produce a civic engagement framework for use in Indonesia by synthesising evidence from phases 1-3 collaboratively with key stakeholders. DISCUSSION: Civic engagement is a potential way in which health services in low and middle income countries can address the burden of mental health conditions through the development of person-centred models of care. However, such approaches are underexplored in Indonesia. This study will work with local stakeholders to design a testable civic engagement framework for use in mental health services in Indonesia.

Incidence and Risk Profile of Dementia in the Regions of Middle East and North Africa.

BACKGROUND: The risk of dementia is reported as "epidemic" and "looming" over the Middle East and North Africa (MENA) region. For this, we performed a multi-language review and feasible analysis on the incidence of dementia to offer apt conclusions. METHODS: Totally, 3 databases (Magiran, Scientific Information Database, and PubMed) and 1 non-database source (Google) were searched in French, English, and Persian by using specific keywords and their combinations. All searches were independent and had no restriction for the year or type of publication. We also calculated cumulative incidence of dementia for Egypt and Israel-Palestine from relevant prevalence estimates by using standard formula. RESULTS: Little information on incidence was available, sparing Israel (2.4/100,000/year; pre-senile). Ten (48.0%) countries had none-to-little information (of any kind) on dementia, indicating considerable awareness deficit in this region. Cumulative incidence of dementia in Egypt and Israel-Palestine was 2.7% over 20 years (55 new cases) and 14.7% (130 new cases) over 6 years, respectively. In Lebanon, cumulative incidence was 7.5% over 20 years. Data looked across dementia-related factors (i.e., fertility rate, polygamy, violence, hypovitaminosis D, diabetes, hypertension, life expectancy, age structure) did not seem to support epidemic proportions of dementia for MENA. CONCLUSIONS: MENA is youthful and dementia here is neither likely to be an epidemic nor looming over. The only possible exception might be Arab pocket in Israel. To us, previous attributions on dementia do not seem to be based on the realities of this region and, therefore, may prevent pragmatic addressal of dementia. Lastly, values-based collaborations are invited to jointly fill the awareness deficit in a unique low-cost manner.

Determinants of psychological morbidity in survivors of the earthquake and tsunami in Aceh and Nias.

BACKGROUND: The goal of this study was to collect information to inform the design of a mental health response following the massive December 2004 earthquake and tsunami in Aceh and North Sumatra, Indonesia. As well as exploring the effect on mental health of direct exposure to the tsunami the study was designed to examine the effect on mental health of immediate post-disaster changes in life circumstances (impact). METHODS: Information was collected from a sample of 783 people aged 15 years and over in earthquake and tsunami-affected areas of Aceh and Nias, 616 Internally Displaced Persons (IDPs) and 167 non-IDPs. The structured questionnaire that was designed for data collection consisted of demographic information, measures of disaster exposure and of changes in life circumstances (impact), the extended version of the Self-Reporting Questionnaire (SRQ), and a brief measure of resilience. Group comparisons, contrasting responses of IDPs and non-IDPs, were by chi-square for frequency data and t-tests for ordinal or continuous data. Hierarchical multiple linear regression analyses were performed to examine the relative contributions to psychopathology of demographic variables and measures of exposure, impact and resilience. RESULTS: High rates of psychopathology, including symptoms of anxiety and affective disorders and post-traumatic stress syndrome, were recorded in the overall sample, particularly in Internally Displaced Persons (IDPs) who experienced more substantial post-disaster changes in life circumstances (impact). The IDP group experienced significantly more SRQ symptoms than did the non-IDP group. Demographic factors alone accounted for less two percent of variance in SRQ-scores. Higher SRQ-20 scores were observed among women, those with lower education, those with diminished resilience beliefs, those experiencing high scores on disaster impact, those experiencing direct exposures to the disaster, and due to (unmeasured) conditions related to being an IDP. The greatest effect among these was due to disaster impacts. The pattern was similar when considering post-traumatic stress symptoms separately. CONCLUSIONS: Negative changes in a person's life circumstances following a disaster appear to have as important an effect on psychopathology as the direct experience of the disaster. Ameliorating the extent and duration of post-disaster negative changes in life circumstances may play an important role in prevention of post-disaster psychological morbidity.

Human rights of persons with mental illness in Indonesia: more than legislation is needed.

BACKGROUND: Although attention to human rights in Indonesia has been improving over the past decade, the human rights situation of persons with mental disorders is still far from satisfactory. The purpose of this paper is to examine the legal framework for protection of human rights of persons with mental disorder and the extent to which Indonesia's international obligations concerning the right to health are being met. METHODS: We examined the Indonesian constitution, Indonesian laws relevant to the right to health, the structure and operation of the National Human Rights Commission, and what is known about violations of the human rights of persons with mental illness from research and the media. RESULTS: The focus of the Indonesian Constitution on rights pre-dated the Universal Declaration, Indonesia has ratified relevant international covenants and domestic law provides an adequate legal framework for human rights protections. However, human rights abuses persist, are widespread, and go essentially unremarked and unchallenged. The National Human Rights Commission has only recently become engaged in the issue of protection of the rights of persons with mental illness. CONCLUSION: More than legislation is needed to protect the human rights of persons with mental illness. Improving the human rights situation for persons with mental illness in Indonesia will require action by governments at national, provincial and district levels, substantial increases in the level of investment in mental health services, coordinated action by mental health professionals and consumer and career organisations, and a central role for the National Human Rights Commission in protecting the rights of persons with mental illness.

Association of PIP5K2A with schizophrenia: a study in an indonesian family sample.

PIP5K2A variants have been shown to be associated with schizophrenia in Caucasian populations. This study tested 12 PIP5K2A SNPs for association with schizophrenia in a sample of 152 sib-pair families of Indonesian descent. All SNPs had previously been tested for association with schizophrenia in a German family sample by Schwab et al. [2006; Mol Psychiatry] and seven SNPs were nominally associated with schizophrenia in this previous study. The purpose of the study was to examine whether previously implicated PIP5K2A variants influence susceptibility to schizophrenia in populations of non-European descent. No single markers showed nominal association with schizophrenia in this Indonesian family sample, however multi-marker haplotypes including a previously associated exonic SNP marker revealed nominally significant association (P = 0.03). Power to detect association was greater than 80% for all previously implicated variants except for rs11013052, where power was greatly reduced due to the low minor allele frequency of this marker in the Indonesian sample. An explorative study combining the results of this study with those of our previous study indicated that rs11013052 was significantly associated with schizophrenia in the combined sample (P = 0.002). The results of this study suggest that any contribution of previously implicated DNA variants within the PIP5K2A gene to schizophrenia susceptibility in the Indonesian population is only minor.