Promoting Equity, Diversity, and Inclusion in Surveys: Insights from a Patient-engaged Study to Assess Long COVID Healthcare Needs in Brazil.

BACKGROUND AND OBJECTIVE: Long COVID (LC) refers to persistent symptoms after acute COVID-19 infection, which may endure for months or years. LC affects millions of people globally, with substantial impacts on quality of life, employment, and social participation. Ensuring access to effective, patient-centered care for LC demands evidence, grounded in inclusive representation of those affected by the condition. Yet survey studies frequently under-represent people with the most disabling disease presentations and racially and socio-economically marginalized groups. We aimed to describe a patient-engaged approach to developing a survey to inform public LC healthcare, and to assess its implementation in terms of enabling participation by diverse LC patients in Brazil. METHODS: Survey development was iterative, achieved through an interdisciplinary collaboration among researchers including people living with LC, and grounded in three guiding principles: (1) evidence-based; (2) inclusive, intersectional, and patient-centered understanding of chronic illness and research participation; and (3) sensitivity to the context of healthcare access. RESULTS: The product of our collaboration was a longitudinal survey using a questionnaire assessing: LC symptoms; their clinical and functional evolution; and impacts on quality of life, household income, health service access, utilization, and out-of-pocket expenses. We illustrate how we operationalized our three principles through survey content, instrument design, and administration. 651 participants with diverse LC symptoms, demography, and socio-economic status completed the survey. We successfully included participants experiencing disabling symptoms, Black and mixed race participants, and those with lower education and income. CONCLUSION: By centering patient experience, our novel, principles-based approach succeeded in promoting equity, diversity, and inclusion in LC survey research. These principles guiding patient-engaged collaboration have broad transferability. We encourage survey researchers working on chronic illness and in other contexts of marginalization and inequality to adopt them.

Social Psychology of and for World-Making.

ACADEMIC ABSTRACT: Social psychology's disconnect from the vital and urgent questions of people's lived experiences reveals limitations in the current paradigm. We draw on a related perspective in social psychology1-the sociocultural approach-and argue how this perspective can be elaborated to consider not only social psychology as a historical science but also social psychology of and for world-making. This conceptualization can make sense of key theoretical and methodological challenges faced by contemporary social psychology. As such, we describe the ontology, epistemology, ethics, and methods of social psychology of and for world-making. We illustrate our framework with concrete examples from social psychology. We argue that reconceptualizing social psychology in terms of world-making can make it more humble yet also more relevant, reconnecting it with the pressing issues of our time. PUBLIC ABSTRACT: We propose that social psychology should focus on "world-making" in two senses. First, people are future-oriented and often are guided more by what could be than what is. Second, social psychology can contribute to this future orientation by supporting people's world-making and also critically reflecting on the role of social psychological research in world-making. We unpack the philosophical assumptions, methodological procedures, and ethical considerations that underpin a social psychology of and for world-making. Social psychological research, whether it is intended or not, contributes to the societies and cultures in which we live, and thus it cannot be a passive bystander of world-making. By embracing social psychology of and for world-making and facing up to the contemporary societal challenges upon which our collective future depends will make social psychology more humble but also more relevant.

Beyond performance and protocols: early responders' experiences of multiple accountability demands in the response to the 2015 Nepal earthquake.

Critics have long questioned the push for professionalised and performance-driven accountability in the humanitarian sector, yet the matter is largely treated as a 'back office' issue of standards, guidelines, and processes. Scant attention is paid to the accountability demands experienced by early responders to disasters. Set in the contested climate of the emergency response to the earthquake in Nepal on 25 April 2015, and drawing on interviews with 15 early responders, this paper reveals three forms of accountability demands: (i) accountability as compliance; (ii) accountability as the object of government regulation; and (iii) accountability as public opposition and interrogation. Beyond the performance-centric, non-governmental organisation-driven understanding of accountability, early responders to the earthquake experienced multidirectional accountability demands, not only from donors and beneficiaries, but also from the national government and wider public. Engaging with public criticism is a significant feature of early responders' responsibility that warrants further consideration by the humanitarian community.

The social underpinnings of mental distress in the time of COVID-19 - time for urgent action.

We argue that predictions of a 'tsunami' of mental health problems as a consequence of the pandemic of coronavirus disease 2019 (COVID-19) and the lockdown are overstated; feelings of anxiety and sadness are entirely normal reactions to difficult circumstances, not symptoms of poor mental health.  Some people will need specialised mental health support, especially those already leading tough lives; we need immediate reversal of years of underfunding of community mental health services.  However, the disproportionate effects of COVID-19 on the most disadvantaged, especially BAME people placed at risk by their social and economic conditions, were entirely predictable. Mental health is best ensured by urgently rebuilding the social and economic supports stripped away over the last decade. Governments must pump funds into local authorities to rebuild community services, peer support, mutual aid and local community and voluntary sector organisations.  Health care organisations must tackle racism and discrimination to ensure genuine equal access to universal health care.  Government must replace highly conditional benefit systems by something like a universal basic income. All economic and social policies must be subjected to a legally binding mental health audit. This may sound unfeasibly expensive, but the social and economic costs, not to mention the costs in personal and community suffering, though often invisible, are far greater.

Beyond the binaries: reshaping pain communication through arts workshops.

Pain is difficult to communicate and translate into language, yet most social research on pain experience uses questionnaires and semi-structured interviews that rely on words. In addition to the mind/body dualism prevalent in pain medicine in these studies pain communication is characterised by further value-laden binaries such as real/unreal, visible/invisible, and psychological/physical. Starting from the position that research methods play a role in constituting their object, this article examines the potential of participatory arts workshops for developing different versions of pain communication. Twenty-two participants were involved in workshops using drawing, digital photography, sound and physical theatre to explore pain communication. The use of arts materials made pain tangible. By manipulating pain-related objects, participants could consider alternative relationships to their pain. Pain's sociality was also explored, with relations with clinicians and others emerging as potentially cooperative rather than adversarial. Discussions considered whether pain felt internal or external, and whether it was possible to conceive of a self without pain. We argue that the socio-material context of participatory arts workshops enabled these alternative versions of pain. Such methods are a useful addition to medical sociology's heavy reliance on qualitative interviewing.

Front-line perspectives on 'joined-up' working relationships: a qualitative study of social prescribing in the west of Scotland.

Cross-sector collaboration has been promoted by government policies in the United Kingdom and many western welfare states for decades. Literature on joint working has focused predominantly on the strategic level, neglecting the role of individual practitioners in putting 'joined-up working' into practice. This paper takes the case of 'social prescribing' in the west of Scotland as an instance of joined-up working, in which primary healthcare professionals are encouraged to refer patients to non-medical sources of support in the third sector. This study draws on social capital theory to analyse the quality of the relationships between primary healthcare professionals and third sector practitioners. Eighteen health professionals and 15 representatives of third sector organisations participated in a qualitative interview study. Significant barriers to collaborative working were evident. The two stakeholder groups expressed different understandings of health, with few primary healthcare professionals considering non-medical sources of support to be useful or relevant. Health professionals were mistrustful of unknown third sector organisations, and concerned about their accountability for referrals that were not successful or positive for the patient. Third sector practitioners sought to build trust through face-to-face interactions with health professionals. However, primary healthcare professionals and third sector practitioners were not connected in effective networks. We highlight the ongoing imbalance of power between primary healthcare professionals and third sector organisations. Strategic collaborations should be complemented by efforts to build shared understandings, trust and connections between the diverse front-line workers whose mutual co-operation is necessary to achieve effective joined-up working.

Transition to parenthood during the transition to modernity in Jordan: New parents' views on family and healthcare support systems.

AIMS AND OBJECTIVES: This study aims to explore new parents' experiences of family support during their transition to parenthood. BACKGROUND: Family support is widely considered a crucial factor in contributing toward positive outcomes for parents during transition to parenthood. However, inter-generational and socio-cultural differences among family members in understandings and practices of childcare can be a source of tension between new parents and family members. Few studies have examined the role of family support in the context of rapid social change taking place in Middle Eastern countries. This study aims to address this gap by examining the parenting experiences of young Jordanian couples within the family context they are embedded in. RESEARCH DESIGN AND METHODS: A qualitative study was conducted in Jordan involving sixty semi-structured, in-depth interviews. Twenty mothers, twenty fathers, and twenty family members identified as support providers were interviewed. RESULTS: The key theme, "it's too much" emerged from interviews to describe the nature of family support experienced by new parents from marriage to pregnancy and until after the arrival of their first child. The study found varied interpretations of traditional child-care practices among older and younger generation of family members, leading to family conflict. This study also found that the lack of credible information from the health system about child-care compelled them to accept the only available information for them from their parents, often times with much resistance and reluctance. This created a situation of stress and anxiety among young parents and undermined the potential for healthy parenting experience. This study also found that not all social support during early days of parenthood led to beneficial health outcomes to mother and child."Social visiting" by family members to hospital and home, was particularly found to interfere with new parents' pursuit toward privacy and family bonding, immediately following the birth of child. CONCLUSION: This study has produced a new understanding of the experience of Jordanian new parents' transition to parenthood. This study particularly sheds light on the current dilemma in which these Jordanian new parents find themselves in, which reflect a clash between traditional and modern values. Although the findings aim to contribute to the body of literature that deals with cultural influences on new parents' experiences in Jordon, the learning could be relevant to the other contexts in the Middle Eastern societies.

Empty rituals? A qualitative study of users' experience of monitoring & evaluation systems in HIV interventions in western India.

In global health initiatives, particularly in the context of private philanthropy and its 'business minded' approach, detailed programme data plays an increasing role in informing assessments, improvements, evaluations, and ultimately continuation or discontinuation of funds for individual programmes. The HIV/AIDS literature predominantly treats monitoring as unproblematic. However, the social science of audit and indicators emphasises the constitutive power of indicators, noting that their effects at a grassroots level are often at odds with the goals specified in policy. This paper investigates users' experiences of Monitoring and Evaluation (M&E) systems in the context of HIV interventions in western India. Six focus groups (totalling 51 participants) were held with employees of 6 different NGOs working for government or philanthropy-funded HIV interventions for sex workers in western India. Ten donor employees were interviewed. Thematic analysis was conducted. NGO employees described a major gap between what they considered their "real work" and the indicators used to monitor it. They could explain the official purposes of M&E systems in terms of programme improvement and financial accountability. More cynically, they valued M&E experience on their CVs and the rhetorical role of data in demonstrating their achievements. They believed that inappropriate and unethical means were being used to meet targets, including incentives and coercion, and criticised indicators for being misleading and inflexible. Donor employees valued the role of M&E in programme improvement, financial accountability, and professionalising NGO-donor relationships. However, they were suspicious that NGOs might be falsifying data, criticised the insensitivity of indicators, and complained that data were under-used. For its users, M& E appears an 'empty ritual', enacted because donors require it, but not put to local use. In this context, monitoring is constituted as an instrument of performance management rather than as a means of rational programme improvement.

A qualitative method for analysing multivoicedness.

'Multivoicedness' and the 'multivoiced Self' have become important theoretical concepts guiding research. Drawing on the tradition of dialogism, the Self is conceptualised as being constituted by a multiplicity of dynamic, interacting voices. Despite the growth in literature and empirical research, there remains a paucity of established methodological tools for analysing the multivoiced Self using qualitative data. In this article, we set out a systematic, practical 'how-to' guide for analysing multivoicedness. Using theoretically derived tools, our three-step method comprises: identifying the voices of I-positions within the Self's talk (or text), identifying the voices of 'inner-Others', and examining the dialogue and relationships between the different voices. We elaborate each step and illustrate our method using examples from a published paper in which data were analysed using this method. We conclude by offering more general principles for the use of the method and discussing potential applications.

Evidence synthesis in international development: a critique of systematic reviews and a pragmatist alternative.

Systematic reviews are an instrument of Evidence-Based Policy designed to produce comprehensive, unbiased, transparent and clear assessments of interventions' effectiveness. From their origins in medical fields, systematic reviews have recently been promoted as offering important advances in a range of applied social science fields, including international development. Drawing on a case study of a systematic review of the effectiveness of community mobilisation as an intervention to tackle HIV/AIDS, this article problematises the use of systematic reviews to summarise complex and context-specific bodies of evidence. Social development interventions, such as 'community mobilisation' often take different forms in different interventions; are made successful by their situation in particular contexts, rather than being successful or unsuccessful universally; and have a rhetorical value that leads to the over-application of positively valued terms (e.g. 'community mobilisation'), invalidating the keyword search process of a systematic review. The article suggests that the policy interest in definitive summary statements of 'the evidence' is at odds with academic assessments that evidence takes multiple, contradictory and complex forms, and with practitioner experience of the variability of practice in context. A pragmatist philosophy of evidence is explored as an alternative. Taking this approach implies expanding the definition of forms of research considered to be 'useful evidence' for evidence-based policy-making; decentralising decisions about 'what works' to allow for the use of local practical wisdom; and prioritising the establishment of good processes for the critical use of evidence, rather than producing context-insensitive summaries of 'the evidence'.

Too much information: visual research ethics in the age of wearable cameras.

When everything you see is data, what ethical principles apply? This paper argues that first-person digital recording technologies challenge traditional institutional approaches to research ethics, but that this makes ethics governance more important, not less so. We review evolving ethical concerns across four fields: Visual ethics; ubiquitous computing; mobile health; and grey literature from applied or market research. Collectively, these bodies of literature identify new challenges to traditional notions of informed consent, anonymity, confidentiality, privacy, beneficence and maleficence. Challenges come from the ever-increasing power, breadth and multi-functional integration of recording technologies, and the ubiquity and normalization of their use by participants. Some authors argue that these evolving relationships mean that institutional ethics governance procedures are irrelevant or no longer apply. By contrast, we argue that the fundamental principles of research ethics frameworks have become even more important for the protection of research participants, and that institutional frameworks need to adapt to keep pace with the ever-increasing power of recording technologies and the consequent risks to privacy. We conclude with four recommendations for efforts to ensure that contemporary visual recording research is held appropriately accountable to ethical standards: (i) minimizing the detail, scope, integration and retention of captured data, and limiting its accessibility; (ii) formulating an approach to ethics that takes in both the 'common rule' approaches privileging anonymity and confidentiality together with principles of contextual judgement and consent as an ongoing process; (iii) developing stronger ethical regulation of research outside academia; (iv) engaging the public and research participants in the development of ethical guidelines.

Evaluating social outcomes of HIV/AIDS interventions: a critical assessment of contemporary indicator frameworks.

INTRODUCTION: Contemporary HIV-related theory and policy emphasize the importance of addressing the social drivers of HIV risk and vulnerability for a long-term response. Consequently, increasing attention is being given to social and structural interventions, and to social outcomes of HIV interventions. Appropriate indicators for social outcomes are needed in order to institutionalize the commitment to addressing social outcomes. This paper critically assesses the current state of social indicators within international HIV/AIDS monitoring and evaluation frameworks. METHODS: We analyzed the indicator frameworks of six international organizations involved in efforts to improve and synchronize the monitoring and evaluation of the HIV/AIDS response. Our analysis classifies the 328 unique indicators according to what they measure and assesses the degree to which they offer comprehensive measurement across three dimensions: domains of the social context, levels of change and organizational capacity. RESULTS AND DISCUSSION: The majority of indicators focus on individual-level (clinical and behavioural) interventions and outcomes, neglecting structural interventions, community interventions and social outcomes (e.g. stigma reduction; community capacity building; policy-maker sensitization). The main tool used to address social aspects of HIV/AIDS is the disaggregation of data by social group. This raises three main limitations. Indicator frameworks do not provide comprehensive coverage of the diverse social drivers of the epidemic, particularly neglecting criminalization, stigma, discrimination and gender norms. There is a dearth of indicators for evaluating the social impacts of HIV interventions. Indicators of organizational capacity focus on capacity to effectively deliver and manage clinical services, neglecting capacity to respond appropriately and sustainably to complex social contexts. CONCLUSIONS: Current indicator frameworks cannot adequately assess the social outcomes of HIV interventions. This limits knowledge about social drivers and inhibits the institutionalization of social approaches within the HIV/AIDS response. We conclude that indicator frameworks should expand to offer a more comprehensive range of social indicators for monitoring and evaluation and to include indicators of organizational capacity to tackle social drivers. While such expansion poses challenges for standardization and coordination, we argue that the complexity of interventions producing social outcomes necessitates capacity for flexibility and local tailoring in monitoring and evaluation.

Health behavior change models for HIV prevention and AIDS care: practical recommendations for a multi-level approach.

Despite increasing recent emphasis on the social and structural determinants of HIV-related behavior, empirical research and interventions lag behind, partly because of the complexity of social-structural approaches. This article provides a comprehensive and practical review of the diverse literature on multi-level approaches to HIV-related behavior change in the interest of contributing to the ongoing shift to more holistic theory, research, and practice. It has the following specific aims: (1) to provide a comprehensive list of relevant variables/factors related to behavior change at all points on the individual-structural spectrum, (2) to map out and compare the characteristics of important recent multi-level models, (3) to reflect on the challenges of operating with such complex theoretical tools, and (4) to identify next steps and make actionable recommendations. Using a multi-level approach implies incorporating increasing numbers of variables and increasingly context-specific mechanisms, overall producing greater intricacies. We conclude with recommendations on how best to respond to this complexity, which include: using formative research and interdisciplinary collaboration to select the most appropriate levels and variables in a given context; measuring social and institutional variables at the appropriate level to ensure meaningful assessments of multiple levels are made; and conceptualizing intervention and research with reference to theoretical models and mechanisms to facilitate transferability, sustainability, and scalability.

Sensitizing questions: a method to facilitate analyzing the meaning of an utterance.

Much social science research entails interpreting the meaning of utterances, that is, phrases spoken, written or gestured. But how should researchers interpret the meaning of such utterances? A recent surge of research, informed by dialogism, emphasizes the contextual, social and unfinished nature of meaning. The present article operationalizes dialogism theory into six 'sensitizing questions' which can guide analysis. The questions are: (1) What is the context? (2) What is the speaker doing? (3) Who is being addressed? (4) Who is doing the talking? (5) What future is constituted? (6) What are the responses? Each question (and 16 sub-questions) is illustrated by analyzing the potential meanings of a single utterance. The article is a contribution to the development of new forms of 'method' for interpretative qualitative research. These methods aid the 'human instrument' to become a sensitive, theoretically-informed, and accountable analyst.

The impact of community mobilisation on HIV prevention in middle and low income countries: a systematic review and critique.

While community mobilisation (CM) is increasingly advocated for HIV prevention, its impact on measurable outcomes has not been established. We performed a systematic review of the impact of CM within HIV prevention interventions (N = 20), on biomedical, behavioural and social outcomes. Among most at risk groups (particularly sex workers), the evidence is somewhat consistent, indicating a tendency for positive impact, with stronger results for behavioural and social outcomes than for biomedical ones. Among youth and general communities, the evidence remains inconclusive. Success appears to be enhanced by engaging groups with a strong collective identity and by simultaneously addressing the socio-political context. We suggest that the inconclusiveness of the findings reflects problems with the evidence, rather than indicating that CM is ineffective. We discuss weaknesses in the operationalization of CM, neglect of social context, and incompatibility between context-specific CM processes and the aspiration of review methodologies to provide simple, context-transcending answers.

Reimagining community health psychology: maps, journeys and new terrains.

This special issue celebrates and maps out the 'coming of age' of community health psychology, demonstrating its confident and productive expansion beyond its roots in the theory and practice of small-scale collective action in local settings. Articles demonstrate the field's engagement with the growing complexity of local and global inequalities, contemporary forms of collective social protest and developments in critical social science. These open up novel problem spaces for the application and extension of its theories and methods, deepening our understandings of power, identity, community, knowledge and social change - in the context of evolving understandings of the spatial, embodied, relational, collaborative and historical dimensions of health.

Trust the process: community health psychology after Occupy.

This article argues that community health psychology's core strategy of 'community mobilisation' is in need of renewal and proposes a new way of conceptualising community health action. Taking the Occupy movement as an example, we critique modernist understandings of community mobilisation, which are based on instrumental action in the service of a predetermined goal. Aiming to re-invigorate the 'process' tradition of community health psychology, we explore possibilities of an open-ended, anti-hierarchical and inclusive mode of community action, which we label 'trusting the process'. The gains to be made are unpredictable, but we suggest that the risk is worth taking.

Beyond ideal speech situations: adapting to communication asymmetries in health care.

Inclusive, unconstrained and honest communication is widely advocated as beneficial and ethical. We critically explore this assumption by reflecting upon our research in acute care, informal care and public health. Using Habermas' ideals of dialogue to conceptualise ideal speech, we concur with observations that health care is often characterised by intractable exclusions and constraints. Rather than advocating implementing the ideals of dialogue, however, we examine how people adapt to these difficult and intransigent contexts. Non-ideal contexts, we find, sometimes call for non-ideal responses. Deception and furthering personal interests, and thus departing from the ideals of dialogue, can be adaptive responses.

Systematic review of reviews of behavioural HIV prevention interventions among men who have sex with men.

Men who have sex with men (MSM) remain one of the groups most at risk of HIV. The growing evidence-base on behavioural HIV prevention interventions includes systematic review-level evidence, including reviews specific to MSM populations. Here, we provide an up-to-date review of these systematic reviews in which we examined the effectiveness of behavioural HIV prevention interventions among MSM. A systematic search of electronic databases, including MEDLINE, EMBASE, Cochrane Database of Systematic Reviews, PsycInfo, from January 2000 to October 2010, along with hand searches of the reference lists of retrieved documents were conducted. Inclusion criteria included: study design limited to systematic reviews and meta-analyses; methodological quality; and review to focus on MSM and behavioural interventions. A narrative synthesis was conducted. Across the four included meta-analyses (102 studies; 52 independent studies), there was strong and consistent evidence for group- and community-level interventions being associated with reductions in UAI (27-30% and 30%, respectively) and increases in condom use amongst MSM, but inconsistent evidence for the effectiveness of individual-level interventions. Skills-building, trained professionals delivering the training and theory-based interventions were also consistently effective. The inherent limitations of the review of review method within a changing health domain meant it was difficult to develop contemporary and directly transferable guidance to HIV prevention policy development. However, the analysis does demonstrate a need for a step change in the kinds of data that are collated in the development of future systematic reviews of HIV prevention interventions among MSM.