'Let him die in peace': understanding caregiver's refusal of medical oxygen treatment for children in Nigeria.

INTRODUCTION: Efforts to improve oxygen access have focused mainly on the supply side, but it is important to understand demand barriers, such as oxygen refusal among caregivers. We therefore aimed to understand caregiver, community and healthcare provider (HCP) perspectives and experiences of medical oxygen treatments and how these shape oxygen acceptance among caregivers of sick children in Lagos and Jigawa states, which are two contrasting settings in Nigeria. METHODS: Between April 2022 and January 2023, we conducted an exploratory qualitative study using reflexive thematic analysis, involving semistructured interviews with caregivers (Jigawa=18 and Lagos=7), HCPs (Jigawa=7 and Lagos=6) and community group discussions (Jigawa=4 and Lagos=5). We used an inductive-deductive approach to identify codes and themes through an iterative process using the theoretical framework of acceptability and the normalisation process theory as the analytic lens. RESULTS: Medical oxygen prescription was associated with tension, characterised by fear of death, hopelessness about a child's survival and financial distress. These were driven by community narratives around oxygen, past negative experiences and contextual differences between both settings. Caregiver acceptance of medical oxygen was a sense-making process from apprehension and scepticism about their child's survival chances to positioning prescribed oxygen as an 'appropriate' or 'needed' intervention. Achieving this transition occurred through various means, such as trust in HCPs, a perceived sense of urgency for care, previous positive experience of oxygen use and a symbolic perception of oxygen as a technology. Misconceptions and pervasive negative narratives were acknowledged in Jigawa, while in Lagos, the cost was a major reason for oxygen refusal. CONCLUSION: Non-acceptance of medical oxygen treatment for sick children is modifiable in the Nigerian context, with the root causes of refusal being contextually specific. Therefore, a one-size-fits-all policy is unlikely to work. Financial constraints and community attitudes should be addressed in addition to improving client-provider interactions.

Linking communities and health facilities to improve child health in low-resource settings: a systematic review.

Community-facility linkage interventions are gaining popularity as a way to improve community health in low-income settings. Their aim is to create/strengthen a relationship between community members and local healthcare providers. Representatives from both groups can address health issues together, overcome trust problems, potentially leading to participants' empowerment to be responsible for their own health. This can be achieved via different approaches. We conducted a systematic literature review to explore how this type of intervention has been implemented in rural and low or lower-middle-income countries, its various features and how/if it has helped to improve child health in these settings. Publications from three electronic databases (Web of Science, PubMed and Embase) up to 03 February 2022 were screened, with 14 papers meeting the inclusion criteria (rural setting in low/lower-middle-income countries, presence of a community-facility linkage component, outcomes of interest related to under-5 children's health, peer-reviewed articles containing original data written in English). We used Rosato's integrated conceptual framework for community participation to assess the transformative and community-empowering capacities of the interventions, and realist principles to synthesize the outcomes. The results of this analysis highlight which conditions can lead to the success of this type of intervention: active inclusion of hard-to-reach groups, involvement of community members in implementation's decisions, activities tailored to the actual needs of interventions' contexts and usage of mixed methods for a comprehensive evaluation. These lessons informed the design of a community-facility linkage intervention and offer a framework to inform the development of monitoring and evaluation plans for future implementations.

Misunderstood and underappreciated: a critical review of mental health advocacy and activism in low- and middle-income countries.

Mental health advocacy and activism have been highlighted as important in the effort towards creating environments for better mental health. However, relevant research in low- and middle-income country settings remains limited and lacks critical exploration. We seek to contribute to filling this gap by exploring driving factors behind mental health advocacy and activism efforts in low- and middle-income country settings. This review uses a critically informed thematic analysis employing conceptual frameworks of productive power to analyse peer-reviewed articles on mental health advocacy or activism over the last 20 years. We suggest that the current body of research is marred by superficial explorations of activism and advocacy, partly due to a lack of cohesion around definitions. Based on our findings, we suggest a conceptual framework to guide deeper explorations of mental health advocacy and activism. This framework identifies 'legitimacy', 'context' and 'timing' as the main dimensions to consider in understanding activism and advocacy efforts. The fact that they remain misunderstood and underappreciated creates missed opportunities for meaningful inclusion of lived experience in policy decisions and limits our understanding of how communities envision and enact change.

Inverting the deficit model in global mental health: An examination of strengths and assets of community mental health care in Ghana, India, Occupied Palestinian territories, and South Africa.

Global mental health [GMH] scholarship and practice has typically focused on the unmet needs and barriers to mental health in communities, developing biomedical and psychosocial interventions for integration into formal health care platforms in response. In this article, we analyse four diverse settings to disrupt the emphasises on health system weaknesses, treatment gaps and barriers which can perpetuate harmful hierarchies and colonial and medical assumptions, or a 'deficit model'. We draw on the experiential knowledge of community mental health practitioners and researchers working in Ghana, India, the Occupied Palestinian Territory and South Africa to describe key assets existing in 'informal' community mental health care systems and how these are shaped by socio-political contexts. These qualitative case studies emerged from an online mutual learning process convened between 39 academic and community-based collaborators working in 24 countries who interrogated key tenets to inform a social paradigm for global mental health. Bringing together diverse expertise gained from professional practice and research, our sub-group explored the role of Community Mental Health Systems in GMH through comparative country case studies describing the features of community care beyond the health and social care system. We found that the socio-political health determinants of global economic structures in all four countries exert significant influence on local community health systems. We identified that key assets across sites included: family and community care, and support from non-profit organisations and religious and faith-based organisations. Strengthening community assets may promote reciprocal relationships between the formal and informal sectors, providing resources for support and training for communities while communities collaborate in the design and delivery of interventions rooted in localised expertise. This paper highlights the value of informal care, the unique social structures of each local context, and resources within local communities as key existing assets for mental health.

The struggle for the social: rejecting the false separation of 'social' worlds in mental health spaces.

How are we to best grapple with the notion of the Social in mental health landscapes? This piece of speculative work explores a series of tensions that emerge in our attempt to contemplate, engage with, and address the social in mental health spaces. First, I will explore the tensions created by disciplinary demands for specialisation, questioning the value of this with regard to treating social and emotional bodies which continually reject such fragmentation. This line of inquiry then leads to reflection on the value of a social topology-enabled through the application of intersectionality principles, Black Sociological analytical frameworks, including the worldview approach, and societal psychological perspectives on knowledge and action. I argue the possibilities in actioning these approaches emerge through the application of a social-political economy of mental health, that holds the complexity presented by the totality of social life as it potentially relates to mental health. The piece seeks to advance a space of thinking on how we transition global mental health projects to be more effectively situated in a needed commitment for social justice as a remedy and repair to broken social worlds.

Mutuality as a method: advancing a social paradigm for global mental health through mutual learning.

PURPOSE: Calls for "mutuality" in global mental health (GMH) aim to produce knowledge more equitably across epistemic and power differences. With funding, convening, and publishing power still concentrated in institutions in the global North, efforts to decolonize GMH emphasize the need for mutual learning instead of unidirectional knowledge transfers. This article reflects on mutuality as a concept and practice that engenders sustainable relations, conceptual innovation, and queries how epistemic power can be shared. METHODS: We draw on insights from an online mutual learning process over 8 months between 39 community-based and academic collaborators working in 24 countries. They came together to advance the shift towards a social paradigm in GMH. RESULTS: Our theorization of mutuality emphasizes that the processes and outcomes of knowledge production are inextricable. Mutual learning required an open-ended, iterative, and slower paced process that prioritized trust and remained responsive to all collaborators' needs and critiques. This resulted in a social paradigm that calls for GMH to (1) move from a deficit to a strength-based view of community mental health, (2) include local and experiential knowledge in scaling processes, (3) direct funding to community organizations, and (4) challenge concepts, such as trauma and resilience, through the lens of lived experience of communities in the global South. CONCLUSION: Under the current institutional arrangements in GMH, mutuality can only be imperfectly achieved. We present key ingredients of our partial success at mutual learning and conclude that challenging existing structural constraints is crucial to prevent a tokenistic use of the concept.

Mental health services implementation in Colombia-A systematic review.

Colombia's mental health services have a complex history shaped by 60 years of armed conflict, a predominantly clinical approach to mental health, and social factors such as inequities and stigma. The 1990 Caracas declaration proposed a shift towards decentralised community mental health services and interventions based on the recovery approach and emphasis on social determinants of mental health in the Americas. Colombia has adopted these approaches in its legal and practical framework in recent years, but implementation has been uneven. This systematic review aims to contribute to mental health services understanding in Colombia by examining the barriers and facilitators to the implementation of mental health services in Colombia. A search was conducted to explore available peer-reviewed studies on Colombian mental health services across five databases (Medline, PubMed, Scopus, Scielo and BVS) on quantitative and qualitative research papers published in the last ten years and without language restrictions. The Consolidated Framework for Implementation Research (CFIR) was used to structure the analysis and identify barriers and facilitators during the implementation of mental health services. We adapted the CFIR to attend to gender, race and age informed by the Socio-Political Economy of Global Mental Health framework, given the importance of these factors to the Colombian health landscape. Finally, narrative synthesis was used to summarise the data. 1 530 records were identified, and 12 articles met all inclusion criteria and were included in the analysis. 8 papers described substance use disorders services, 11 involved multidisciplinary healthcare professionals, and 7 were implemented at a local scale. The primary barriers to implementation were the lack of coordination, high workloads, and low funding. Facilitators included the use of protocols, and the involvement of communities, stakeholders, users, and external champions. Findings suggest the continued importance of community and recovery approaches and efforts to improve coordination between multi-sector actors involved in the mental health spaces (e.g., public, and private organisations, users and their families).

Community perceptions matter: a mixed-methods study using local knowledge to define features of success for a community intervention to improve quality of care for children under-5 in Jigawa, Nigeria.

OBJECTIVES: In this study, we used the information generated by community members during an intervention design process to understand the features needed for a successful community participatory intervention to improve child health. DESIGN: We conducted a concurrent mixed-methods study (November 2019-March 2020) to inform the design and evaluation of a community-facility linkage participatory intervention. SETTING: Kiyawa Local Government Area (Jigawa State, Nigeria)-population of 230 000 (n=425 villages). PARTICIPANTS: Qualitative data included 12 community conversations with caregivers of children under-5 (men, older and younger women; n=9 per group), 3 focus group discussions (n=10) with ward development committee members and interviews with facility heads (n=3). Quantitative data comprised household surveys (n=3464) with compound heads (n=1803) and women (n=1661). RESULTS: We analysed qualitative data with thematic network analysis and the surveys with linear regression-results were triangulated in the interpretation phase. Participants identified the following areas of focus: community health education; facility infrastructure, equipment and staff improvements; raising funds to make these changes. Community involvement, cooperation and empowerment were recognised as a strategy to improve child health, and the presence of intermediate bodies (development committees) was deemed important to improve communication and solve problems between community and facility members. The survey showed functional community relations' dynamics, with high levels of internal cohesion (78%), efficacy in solving problems together (79%) and fairness of the local leaders (82%). CONCLUSIONS: Combining the results from this study and critical theories on successful participation identified community-informed features for a contextually tailored community-facility link intervention. The need to promote a more inclusive approach to future child health interventions was highlighted. In addition to health education campaigns, the relationship between community and healthcare providers needs strengthening, and development committees were identified as an essential feature for successfully linking communities and facilities for child health. TRIAL REGISTRATION NUMBER: ISRCTN39213655.

Pneumonia knowledge and care seeking behavior for children under-five years in Jigawa, Northwest Nigeria: a cross-sectional study.

Background: Between 2013 and 2022, Nigeria did not meet globally defined targets for pneumonia control, despite some scale-up of vaccinations, oxygen and antibiotics. A deliberate focus on community-based programs is needed to improve coverage of protective, preventive and treatment interventions. We therefore aimed to describe caregiver knowledge and care seeking behaviour for childhood pneumonia, in a high child mortality setting in Nigeria, to inform the development of effective community-based interventions for pneumonia control. Methods: We conducted a cross-sectional household survey in Kiyawa Local Government Area, Jigawa State, Nigeria between December 2019 and March 2020. We asked caregivers about their knowledge of pneumonia symptoms, prevention, risks, and treatment. A score of 1 was assigned for each correct response. We showed them videos of pneumonia specific symptoms and asked (1) if their child had any respiratory symptoms in the 2-weeks prior; (2) their subsequent care-seeking behaviour. Multivariate regressions explored socio-demographic and clinical factors associated with care seeking. Results: We surveyed 1,661 eligible women, with 2,828 children under-five. Only 4.9% of women could name both cough and difficulty/fast breathing as pneumonia symptoms, and the composite knowledge scores for pneumonia prevention, risks and treatment were low. Overall, 19.0% (536/2828) of children had a report of pneumonia specific symptoms in the prior two-weeks, and of these 32.3% (176/536) were taken for care. The odds of care seeking was higher among children: with fever (AOR:2:45 [95% CI: 1.38-4.34]); from wealthiest homes (AOR: 2:13 [95% CI: 1.03-4.38]) and whose mother first married at 20-26 years compared to 15-19 years (AOR: 5.15 [95% CI: 1.38-19.26]). Notably, the caregiver's knowledge of pneumonia was not associated with care seeking. Conclusion: While some socio-demographic factors were associated with care seeking for children with symptoms of Acute Respiratory Infection (ARI), caregiver's knowledge of the disease was not. Therefore, when designing public health interventions to address child mortality, information-giving alone is likely to be insufficient.

Patients' priorities around drug-resistant tuberculosis treatment: A multi-national qualitative study from Mongolia, South Africa and Georgia.

We conducted qualitative research exploring the treatment experience of people with DR-TB. We held nine focus group discussions with 57 adults undergoing/recently completed treatment for DR-TB in Georgia, Mongolia and South Africa. Translated transcripts were analysed using thematic analysis. We identified three higher order themes: (1) Treatment experience and the role of good relationships with healthcare providers: Treatment duration, pill burden and side-effects were challenging aspects of treatment. Side-effects/symptoms that were visible signs of illness were particularly troubling. Good relations with clinical staff helped combat fear and uncertainty regarding treatment. (2) Mental distress and opportunities for wellbeing: The shame, stigma and isolation people experienced as a result of their DR-TB diagnosis was an important cause of mental distress. No longer being infectious enabled people to resume work and socialising. Positive emotions emerged with good treatment outcomes. (3) Fear and worry along the treatment journey: Participants expressed fears about TB: infecting others; whether they would be able to endure treatment; side-effects; health consequences of treatment. Worries mostly disappeared with successful treatment. Alongside measuring side-effects, time to culture conversion and cure rates, future trials of DR-TB treatments should capture how quickly visible symptoms resolve, quality of life measures, and mental health outcomes.

Whose knowledge counts? Involving communities in intervention and trial design using community conversations.

BACKGROUND: Current debates in Global Health call for expanding methodologies to allow typically silenced voices to contribute to processes of knowledge production and intervention design. Within trial research, this has typically involved small-scale qualitative work, with limited opportunities for citizens to contribute to the structure and nature of the trial. This paper reports on efforts to move past typical formative trial work, through adaptation of community conversations (CCs) methodology, an action-oriented approach that engages large numbers of community members in dialogue. We applied the CC method to explore community perspectives about pneumonia and managing the health of children under-5 in Northern Nigeria to inform our pragmatic cluster randomised controlled trial evaluating a complex intervention to reduce under-5 mortality in Nigeria. METHODS: We conducted 12 rounds of community conversations with a total of 320 participants, in six administrative wards in Kiyawa Local Government Area, Jigawa state, our intervention site. Participants were male and female caregivers of children under five. Conversations were structured around participatory learning and action activities, using drawings and discussion to reduce barriers to entry. During activities participants were placed in subgroups: younger women (18-30 years of age), older women (31-49 years) and men (18 years above). Discussions were conducted over three 2-h sessions, facilitated by community researchers. Following an initial analysis to extract priority issues and perspectives on intervention structure, smaller focus group discussions were completed with participants in five new sites to ensure all 11 administrative wards in our study site contributed to the design. RESULTS: We identified enabling and limiting factors which could shape the future trial implementation, including complex power relationships within households and wider communities shaping women's health decision-making, and the gendered use of space. We also noted the positive engagement of participants during the CC process, with many participants valuing the opportunity to express themselves in ways they have not been able to in the past. CONCLUSIONS: CCs provide a structured approach to deep meaningful engagement of everyday citizens in intervention and trial designs, but require appropriate resources, and commitment to qualitative research in trials. TRIAL REGISTRATION: ISRCTN39213655. Registered on 11 December 2019.

Challenges and opportunities in coproduction: reflections on working with young people to develop an intervention to prevent violence in informal settlements in South Africa.

Coproduction is widely recognised as essential to the development of effective and sustainable complex health interventions. Through involving potential end users in the design of interventions, coproduction provides a means of challenging power relations and ensuring the intervention being implemented accurately reflects lived experiences. Yet, how do we ensure that coproduction delivers on this promise? What methods or techniques can we use to challenge power relations and ensure interventions are both more effective and sustainable in the longer term? To answer these questions, we openly reflect on the coproduction process used as part of Siyaphambili Youth ('Youth Moving Forward'), a 3-year project to create an intervention to address the social contextual factors that create syndemics of health risks for young people living in informal settlements in KwaZulu-Natal province in South Africa. We identify four methods or techniques that may help improve the methodological practice of coproduction: (1) building trust through small group work with similar individuals, opportunities for distance from the research topic and mutual exchanges about lived experiences; (2) strengthening research capacity by involving end users in the interpretation of data and explaining research concepts in a way that is meaningful to them; (3) embracing conflicts that arise between researchers' perspectives and those of people with lived experiences; and (4) challenging research epistemologies through creating spaces for constant reflection by the research team. These methods are not a magic chalice of codeveloping complex health interventions, but rather an invitation for a wider conversation that moves beyond a set of principles to interrogate what works in coproduction practice. In order to move the conversation forward, we suggest that coproduction needs to be seen as its own complex intervention, with research teams as potential beneficiaries.

Maternal mental well-being and recent child illnesses-A cross-sectional survey analysis from Jigawa State, Nigeria.

Child health indicators in Northern Nigeria remain low. The bidirectional association between child health and maternal well-being is also poorly understood. We aim to describe the association between recent child illness, socio-demographic factors and maternal mental well-being in Jigawa State, Nigeria. We analysed a cross-sectional household survey conducted in Kiyawa local government area, Jigawa State, from January 2020 to March 2020 amongst women aged 16-49 with at least one child under-5 years. We used two-stage random sampling. First, we used systematic random sampling of compounds, with the number of compounds based on the size of the community. The second stage used simple random sampling to select one eligible woman per compound. Mental well-being was assessed using the Short Warwick-Edinburgh Mental Wellbeing Score (SWEMWBS). We used linear regression to estimate associations between recent child illness, care-seeking and socio-demographic factors, and mental well-being. Overall 1,661 eligible women were surveyed, and 8.5% had high mental well-being (metric score of 25.0-35.0) and 29.5% had low mental well-being (metric score of 7.0-17.9). Increasing wealth quintile (adj coeff: 1.53; 95% CI: 0.91-2.15) not being a subsistence farmer (highest adj coeff: 3.23; 95% CI: 2.31-4.15) and having a sick child in the last 2-weeks (adj coeff: 1.25; 95% CI: 0.73-1.77) were significantly associated with higher mental well-being. Higher levels of education and increasing woman's age were significantly associated with lower mental well-being. Findings contradicted our working hypothesis that a recently sick child would be associated with lower mental well-being. We were surprised that education and late marriage, which are commonly attributed to women's empowerment and autonomy, were not linked to better well-being here. Future work could focus on locally defined tools to measure well-being reflecting the norms and values of communities, ensuring solutions that are culturally acceptable and desirable to women with low mental well-being are initiated.

Bringing an end to the silence: identifying priorities and solutions to addressing the mental health consequences of child marriage.

Despite its inclusion in Sustainable Development Goal 5 to end all harmful gendered practices by 2030, child, early and forced marriages continue to be a pervasive problem globally. While there is consistent evidence on the physical health consequences of child marriage, there is a lack of evidence and inquiry into the mental health consequence. We completed a change-oriented Delphi study to establish consensus on priority areas of research and intervention in relation to the mental health consequences of child, early and forced marriages. Invited experts (n = 11), survivors (n = 27) and professionals (n = 30) participated in our Delphi. Four rounds of data collection included: a blended in-person and online workshop with invited experts, an online mixed-methods questionnaire, focus groups in Zimbabwe with women who are survivors of child marriage and a repeat questionnaire sent to the first round of experts. Quantitative data were analysed using descriptive statistics and ranking methods, consistent with other Delphi studies. Qualitative data were analysed using thematic network analysis. Findings coalesced around three areas: perspectives on the relationship between mental health and child marriage, policy actions and treatment-driven solutions. Consensus was reached on 16 items across these areas which included the need to prioritize psychosocial and social interventions to improve mental health outcomes for women and girls in existing marriages. They also called for new approaches to advocacy to drive awareness of this issue in policy circles. Implications for future practice are discussed.

Using participatory action research to reimagine community mental health services in Colombia: a mixed-method study protocol.

INTRODUCTION: Mental healthcare systems are challenged by how they hear and respond to what marginalised communities experience as drivers of mental distress. In Colombia, this challenge intersects with wider challenges facing post-conflict reconstruction. Our pilot study will explore the feasibility and acceptability of a participatory approach to developing community-led participatory interventions for community mental health systems strengthening and mental health improvement, in two sites in Caquetá, Colombia. METHODS AND ANALYSIS: The project is divided into three distinct phases aligned with community participatory action research cycles: diagnostic, intervention and evaluation. This allows us to use a participatory approach to design a community-led, bottom-up intervention for mental health systems strengthening and the promotion of mental health and well-being.The diagnostic phase explores local understandings of mental health, mental distress and access to mental health services from community members and health providers. The intervention stage will be guided by a participatory Theory of Change process. Community priorities will inform the development of a participatory, learning and action (PLA) informed group intervention, with a community linkage forum. The pilot of the PLA intervention will be evaluated using MRC process evaluation guidelines. ETHICS AND DISSEMINATION: This project has received ethical approval from two sources. Universidad de Los Andes (2021-1393) and the University College London (16127/005). Dissemination of findings will include academic publications, community forums, policy briefs and visual media (cartoons, pod casts and short films).

Perceptions of child death in Jigawa State, Nigeria: a mixed-methods study on how sociocultural nuances shape paediatric mortality reporting.

BACKGROUND: Vital statistics are critical for effective public health and monitoring progress towards child survival. Nigeria has the highest global under-five mortality rate; however, deaths are often under- or misreported. OBJECTIVE: We explored perceptions of child deaths and socio-cultural factors influencing the reporting of child deaths in Jigawa State, Nigeria. METHODS: We conducted a triangulation mixed-methods study in Kiyawa local government area, Jigawa, including: four focus group discussions (FGDs) with 8-12 women, six key informant interviews (KII) with Imams, and process data from 42 verbal autopsies (VAs) conducted with caregivers of deceased children. Data was collected between November 2019-April 2021. Purposive sampling was used to recruit FDG and KII participants and two-stage systematic and simple random sampling was employed to recruit VA participants. Qualitative data was analysed using content analysis; VA data was described with proportions. RESULTS: Five categories emerged from FGDs: culturally grounded perceptions of child death, etiquette in mourning and offering condolence, formal procedures surrounding child death, the improving relationship between hospital and community, and reporting practices. Women expressed that talking or crying about a death was not culturally accepted, and that prayer is the most acceptable form of coping and offering condolence. Many women expressed that death was God's will. These findings correlated with VAs, in which visible signs of emotional distress were recorded in 31% of the interviews. Three categories emerged from KIIs: religion as part of formal procedures surrounding child death, communities support the bereaved, and multilayered reasons for unreported deaths. Imams serve a key role as community leaders, involved in both the logistical and religious aspects of their community, though they are not involved in mortality reporting. CONCLUSION: Religion plays a central role in burial practices, community mourning rituals, and expression of grief, but does not extend to reporting of child deaths. Imams could provide an opportunity for improving vital registration.