The lived experience of depression: a bottom-up review co-written by experts by experience and academics.

We provide here the first bottom-up review of the lived experience of depression, co-written by experts by experience and academics. First-person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of depression, family members and carers, representing a global network of organizations. The material was enriched by phenomenologically informed perspectives and shared with all collaborators in a cloud-based system. The subjective world of depression was characterized by an altered experience of emotions and body (feeling overwhelmed by negative emotions, unable to experience positive emotions, stuck in a heavy aching body drained of energy, detached from the mind, the body and the world); an altered experience of the self (losing sense of purpose and existential hope, mismatch between the past and the depressed self, feeling painfully incarcerated, losing control over one's thoughts, losing the capacity to act on the world; feeling numb, empty, non-existent, dead, and dreaming of death as a possible escape route); and an altered experience of time (experiencing an alteration of vital biorhythms, an overwhelming past, a stagnation of the present, and the impossibility of the future). The experience of depression in the social and cultural context was characterized by altered interpersonal experiences (struggling with communication, feeling loneliness and estrangement, perceiving stigma and stereotypes), and varied across different cultures, ethnic or racial minorities, and genders. The subjective perception of recovery varied (feeling contrasting attitudes towards recovery, recognizing recovery as a journey, recognizing one's vulnerability and the need for professional help), as did the experience of receiving pharmacotherapy, psychotherapy, and social as well as physical health interventions. These findings can inform clinical practice, research and education. This journey in the lived experience of depression can also help us to understand the nature of our own emotions and feelings, what is to believe in something, what is to hope, and what is to be a living human being.

Evaluating a prototype digital mental health literacy intervention for children and young people aged 11-15 in Java, Indonesia: a mixed methods, multi-site case study evaluation.

BACKGROUND: The Improving Mental Health Literacy Among Children and Young People in Indonesia (IMPeTUs) intervention is a co-produced, evidence-based digital intervention designed to improve anxiety and depression focused mental health literacy and self-management among people aged 11-15 in Java, Indonesia. This study aimed to evaluate the usability, feasibility and preliminary impact of our intervention. METHODS: Mixed methods, multi-site case studies based on a theory of change. Pre-and post-assessments of a range of outcomes and qualitative interviews/focus groups with children and young people (CYP), parents and facilitators. The intervention was implemented in 8 health, school and community sites across Java, Indonesia (Megelang, Jakarta and Bogor). Quantitative data designed to understand the impact of and feasibility of evaluating the intervention collected from 78 CYP who used the intervention were analysed descriptively. Qualitative data from interviews and focus groups collected from 56 CYP, 49 parents/caregivers and 18 facilitators were analysed using framework analysis. RESULTS: Qualitative data analysis indicated high levels of usability and acceptability for the interface aesthetic, personalisation, message presentation and navigation. Participants reported minimal burden and no negative outcomes associated with the intervention. CYP, parents and facilitators identified a range of direct and spill over effects of interventions engagement, some of which were not anticipated at study outset. Quantitative data highlighted the feasibility of intervention evaluation, with high levels of recruitment and retention across study time points. Minimal changes were identified in outcomes pre-to-post intervention, which may in part be due to a lack of scale relevance and/or sensitivity to the intervention mechanisms indicated in the qualitative data. CONCLUSIONS: Digital mental health literacy applications are potentially an acceptable and feasible way to prevent burdens of common mental health problems amongst CYP in Indonesia. Our intervention and evaluative processes will be further refined prior to definitive evaluation.

Gone Too Soon: priorities for action to prevent premature mortality associated with mental illness and mental distress.

Globally, too many people die prematurely from suicide and the physical comorbidities associated with mental illness and mental distress. The purpose of this Review is to mobilise the translation of evidence into prioritised actions that reduce this inequity. The mental health research charity, MQ Mental Health Research, convened an international panel that used roadmapping methods and review evidence to identify key factors, mechanisms, and solutions for premature mortality across the social-ecological system. We identified 12 key overarching risk factors and mechanisms, with more commonalities than differences across the suicide and physical comorbidities domains. We also identified 18 actionable solutions across three organising principles: the integration of mental and physical health care; the prioritisation of prevention while strengthening treatment; and the optimisation of intervention synergies across social-ecological levels and the intervention cycle. These solutions included accessible, integrated high-quality primary care; early life, workplace, and community-based interventions co-designed by the people they should serve; decriminalisation of suicide and restriction of access to lethal means; stigma reduction; reduction of income, gender, and racial inequality; and increased investment. The time to act is now, to rebuild health-care systems, leverage changes in funding landscapes, and address the effects of stigma, discrimination, marginalisation, gender violence, and victimisation.

Predicting self-harm and suicide ideation during the COVID-19 pandemic in Indonesia: a nationwide survey report.

BACKGROUND: It is estimated that 77.0% of suicide cases occurred in low-and-middle-income countries (LMICs), which would increase because of the COVID-19 pandemic and socioeconomic inequity. However, there is lack of reports on this topic from LMICs, especially during the pandemic. Therefore, this nationwide study aimed to explore self-harm and suicide ideation and its predictive variables during the pandemic in Indonesia as a MIC with the highest COVID-19 fatality rate in Asia. METHODS: Non-random sampling online survey was conducted nationwide between 25 May and 16 June 2021. The collected data were demographic variables (i.e. age group), loneliness from social isolation using The UCLA Loneliness Scale Six Items (ULS-6), and self-harm and suicide ideation using item 9 of The Patient Health Questionnaire-9 (PHQ-9). Predictive model was analyzed using hierarchical logistic regression. RESULTS: A total of 5211 participants from all 34 provinces in Indonesia completed the survey. Among 39.3% of them reported self-harm and suicide ideation during the pandemic, which significantly correlated with loneliness. The predictive variables associated with the likelihood of self-harm and suicide ideation were age, residence, job, religion, sex-gender, sexual orientation, HIV status, disability status, and loneliness. The predictive model showed a significant goodness-of-fit to the observed data (x2 [ (15)] = 1803.46, p < .001), RN2 = .40. CONCLUSION: Four out of 10 Indonesians experienced self-harm and suicide ideation during the COVID-19 pandemic, particularly people within the age range of 18-24, living in the Java Island, unemployed/student/retired and freelancer, women, members of minority and marginalized communities, and experience of loneliness during the pandemic.

Children and young people's beliefs about mental health and illness in Indonesia: A qualitative study informed by the Common Sense Model of Self-Regulation.

BACKGROUND: Mental illness is a leading cause of disease burden amongst children and young people (CYP). This is exacerbated in low- and middle-income (LMIC) countries which often have embryonic care structures. Understanding and targeting illness beliefs is a potentially efficacious way of optimising the development of health prevention interventions. These beliefs remain relatively underexplored in CYP in LMIC contexts. Aim: To develop an in-depth understanding of CYPs beliefs about mental health and illness in Indonesia. METHODS AND FINDINGS: Semi-structured interviews (n = 43) combined with photo elicitation methodology were undertaken with CYP aged 11-15 from Java, Indonesia. Our sample comprised those living with (n = 19) and without (n = 24) high prevalence mental health conditions, specifically anxiety or depression. Data were analysed using framework analysis, informed by the Common Sense Model of Self-Regulation of Health and Illness. Positive mental health and illness were dichotomised in accounts with mental health typically characterised as an absence of mental disturbance. This contributed to attributions of abnormality and the marginalisation of those with mental illness. Mental illness was conceptualised as a single entity, commonly arising from individual failings. This prompted feelings of self-stigma in those with lived experience of mental illness. Analysis identified marked differences in the perceived time dimensions of positive mental health and illness with mental illness conceived as less transient than episodes of positive mental health. Illness beliefs appeared relatively consistent across the two groups of CYP although some nuanced differences were identified. CYP with anxiety and depression were less likely to believe that mental illness could be diagnosed visually, more likely to uphold multiple causal factors and endorse the potential efficacy of professional input. CONCLUSIONS: Public health interventions to increase understanding may be necessary to develop healthcare systems to reduce treatment barriers, optimise return on investment and enhance population health effect.

The role of behavioural immune system and belief in COVID-19 misinformation on COVID-19 protective behaviours in Indonesia.

This study (N = 1306) investigated the role behavioural immune system and specific beliefs in COVID-19 misinformation in predicting COVID-19 protective behaviours. By analysing the data from an online survey, we found that germ avoidance significantly predicted social distancing and was negatively correlated to transportation use. Belief in conspiracy theories and non-psychological cures and prevention methods were negatively associated to social distancing, while the latter also predicted lower preventive commodities purchasing. These findings suggested that germ aversion should be incorporated in the promotion of COVID-19 prevention behaviours and that any misinformation related to COVID-19 should be minimized to improve people's protective behaviours.

Mental health literacy amongst children with common mental health problems and their parents in Java, Indonesia: a qualitative study.

Background: Optimising mental health literacy (MHL) at the individual and population level can be an effective mental health improvement and prevention tool. However, concepts of MHL are largely based on evidence from high-income countries. Little is known about the manifestation and role of MHL in countries where collectivist health and social cultures are dominant. Aim: This study aimed to examine the MHL of Indonesian children and young people (CYP) with experience of common mental health problems and their parents. Methods: Semi-structured interviews with 40 participants (19 CYP aged 11-15 with experience of common mental health problems and 21 parents) from three areas of Java, Indonesia. Data were analysed using framework analysis, informed by Jorm's 1997 Mental Health Literacy Framework. Results: Parents and CYP demonstrated relatively low levels of MHL defined from a conventional perspective. Religiosity and spirituality were salient in participants' accounts, particularly parents, as were narratives about personal responsibility. These beliefs appeared to contribute to a high level of self-blame for mental illness, self-reliance for symptom management, the foregrounding of support from spiritual/traditional healers and a reduced propensity to access professional help. CYP were heavily reliant on family support, but parents often felt they were not best placed to communicate with their children about mental health. Providing trusted, technology-based sources of mental health information were advocated by CYP. Conclusion: Robust efforts are needed to improve MHL in low- and middle-income countries drawing on culturally appropriate approaches to reduce stigma and optimise timely, effective help-seeking for CYP. Enhancing parental and family level literacy may be efficacious, especially when combined with mechanisms to facilitate open communication, as may the development of standalone interventions directly developed to reach younger generations. Future research may usefully establish the comparative efficacy and acceptability of these different approaches.

Improving mental health literacy among young people aged 11-15 years in Java, Indonesia: the co-development of a culturally-appropriate, user-centred resource (The IMPeTUs Intervention).

BACKGROUND: Many mental health problems emerge in late childhood and contribute significantly to the global burden of disease. Adverse outcomes can extend into adulthood if left untreated. This impact is exacerbated in low- and middle-income countries where significant treatment gaps persist. Improving mental health literacy may offer an effective strategy for early intervention but remains underexplored in these contexts. METHODS: An intervention was co-developed with children and young people (CYP) by undertaking a needs analysis combined with stakeholder consensus activities. A systematic review of mental health literacy interventions in South-East Asia was undertaken in addition to semi-structured interviews with 43 children and young people (19 with and 24 without experience of anxiety and depression), 19 parents of children with experience of mental health problems and 25 education and health professionals. A focus group was also held with 8 key stakeholders immersed nationally in policy and practice. Interview schedules explored participants' experiences of mental health, unmet needs and priorities for intervention. Data were synthesised and presented at a 3-day co-production workshop. Attendees included 13 CYP, 6 parents/guardians, 2 teachers, 8 health professionals, 2 academics and 3 game designers. Consensus exercises were utilised to identify the preferred format, content and delivery of the intervention. A smaller group of patient and public involvement contributors worked with designers to further iterate the intervention. RESULTS: An immersive storyline digital application was co-developed for young people aged 11-15 with the primary aim of improving mental health literacy and self-management. The intervention comprises two chapters; one depression focussed, and the other anxiety focussed. The storyline format is interspersed with interactive games and exercises to promote engagement and encourage self-management. CYP also take part in group sessions delivered by trained facilitators before and after intervention use to discuss outcomes of and issues raised during the game. CONCLUSION: The IMPeTUs intervention has been co-designed for CYP aged 11-15 to improve mental health literacy and enhance self-management abilities. To the best of our knowledge, this is the first Indonesian digital intervention to improve mental health literacy and self-management for this population. Implementation, acceptability, and impact are currently being explored in a multi-site case study evaluation.

Stigma of mental illness and cultural factors in Pacific Rim region: a systematic review.

BACKGROUND: Although cultural factors play a crucial role in experience of stigma, there is scant review on the impact and importance of culture on stigma of mental illness across Pacific Rim Region. This study aims to investigate: 1) the cultural factors related to stigmatizing beliefs about mental illness in Pacific Rim region, and 2) culture-specific measures and interventions on stigma of mental illness. METHODS: A systematic search of papers was conducted in the MEDLINE, Embase, CINAHL, Web of Science, PsycINFO, Scopus, Cochrane Library and Google scholar through January 2003 to April 2019. RESULTS: Forty-one studies in Pacific Rim region which met the inclusion criteria were included in the study. The rate of stigma of mental illness (e.g., public stigma: from 25.4 to 85.2%) was relatively high in Pacific Rim region. Culture factors (e.g., Collectivism, Confucianism, face concern and familism, religion and supernatural beliefs) contributed to people's stigmatizing behaviors and attitudes toward persons with mental illness, their relatives and mental health professionals. Certain measurements were developed and employed to assess different type of cultural factors related to stigma of mental illness. CONCLUSIONS: Cultural factors play an important role in influencing the rate and performance of stigma of mental illness. Further research on stigma of mental illness and culture-specific interventions to reduce the stigma should be conducted in the Pacific Rim region.

Evaluating the acceptability of a co-produced and co-delivered mental health public engagement festival: Mental Health Matters, Jakarta, Indonesia.

BACKGROUND: Public engagement events are an important early strategy in developing a meaningful research agenda, which is more impactful and beneficial to the population. Evidence indicates the potential of such activities to promote mental health literacy. However, this has not yet been explored in Indonesia. AIM: This paper describes a mental health public engagement festival carried out in Indonesia in November 2018 and uses evaluation data to consider the acceptability and use of such activities in Indonesia in the future. METHOD: Evaluation data was collected from 324 of the 737 people who attended a six-day mental health festival comprising 18 events including public lectures, film screenings, arts activities, exercise classes and panel discussions. Attendees were asked to evaluate the festival in terms of its quality, benefits and areas for improvement. Descriptive statistics were used to analyse the evaluation data. 87 service users, carers, academics and professionals also engaged in a research prioritisation exercise to collaboratively determine mental health research priorities for Indonesia. RESULTS: Participants evaluated the festival extremely positively with a significant majority (92%) rating the quality of the festival as good or excellent. Attendees reported an increase in their understanding of mental health issues and identified intended behaviour change including an increased propensity for future engagement with mental health research. Key strengths of the festival included the central role of patients, carers and the local community in the design and delivery of the festival which promoted emotional engagement and development of shared understanding and the use of international experts which in attendees' opinion further enhanced the credibility of festival activities. CONCLUSION: This manuscript indicates that a co-produced mental health public engagement festival is a potentially acceptable way to increase awareness of mental health in Indonesian populations. Future festivals should be larger in scope and target men, older people and the general public to maximise benefit and incorporate rigorous evaluation of effectiveness.

Improving mental health literacy among young people aged 11-15 years in Java, Indonesia: co-development and feasibility testing of a culturally-appropriate, user-centred resource (IMPeTUs) - a study protocol.

BACKGROUND: Depression and anxiety are two of the leading causes of disease burden in low-to-middle income coutnries. The World Health Organisation has engaged in a programme of scaling-up mental health services, but significant challenges remain. Improving mental health literacy in children and young people, a core part of recent, global health strategies has the potential to address some of these challenges. The study aims to co-develop and feasibility test, a culturally-appropriate toolkit to promote depression and anxiety focused mental health literacy and self-management skills in Indonesia, for children aged 11-15 years. METHODS: A mixed methods study comprising four phases. Through a systematic review of existing evidence, phase 1 will review approaches to improve mental health literacy and self-management in South East Asia and critically review current evidence regarding intervention effect. Phase 2 will explore stakeholders' views on depression, anxiety and mental health more broadly and identify priorities for the intervention through the use of semi-structured interviews and/or focus groups with policy makers, clinicians, teachers, adolescent service users, carers and young people aged 11-15. Phase 3 will comprise iterative workshops with local stakeholders to present our findings and co-produce a testable, culturally appropriate toolkit to promote mental health literacy and depression/anxiety focused self-management in 11-15 year olds in Java, Indonesia. Phase 4 comprises feasibility evaluation of our developed intervention via nine in-depth case studies (Jakarta, Bogor and Magelang). We will examine the impact, acceptability and feasibility of our prototype intervention and produce evidence-based guidelines for wider implementation. DISCUSSION: Tools to support mental health literacy and self-management are a low cost way in which mental health services in LMICs can attempt to address the burden of anxiety and depression amongst children and young people. However, this is an underexplored area in Indonesia. Working closely with local stakeholders, this study will design and undertake feasibility evaluation of co-produced mental health literacy and anxiety and depression focussed interactive self-management tools. This abstract has also been published on the funders website (UK Research and Innovation. Improving Mental Health Literacy Among Young People aged 12-15 years in Indonesia 2019).