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Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis.

ABSTRACT: The concept of patient engagement in health research has received growing international recognition over recent years. Yet despite some critical advancements, we argue that the concept remains problematic as it negates the very real complexities and context of people's lives. Though patient engagement conceptually begins to disrupt the identity of "researcher," and complicate our assumptions and understandings around expertise and knowledge, it continues to essentialize the identity of "patient" as a homogenous group, denying the reality that individuals' economic, political, cultural, subjective and experiential lives intersect in intricate and multifarious ways.Patient engagement approaches that do not consider the simultaneous interactions between different social categories (e.g. race, ethnicity, Indigeneity, gender, class, sexuality, geography, age, ability, immigration status, religion) that make up social identity, as well as the impact of systems and processes of oppression and domination (e.g. racism, colonialism, classism, sexism, ableism, homophobia) exclude the involvement of individuals who often carry the greatest burden of illness - the very voices traditionally less heard in health research. We contend that in order to be a more inclusive and meaningful approach that does not simply reiterate existing health inequities, it is important to reconceptualize patient engagement through a health equity and social justice lens by incorporating a trauma-informed intersectional analysis. This article provides key concepts to the incorporation of a trauma-informed intersectional analysis and important questions to consider when developing a patient engagement strategy in health research training, practice and evaluation. In redefining the identity of both "patient" and "researcher," spaces and opportunities to resist and renegotiate power within the intersubjective relations can be recognized and addressed, in turn helping to build trust, transparency and resiliency - integral to the advancement of the science of patient engagement in health research.

SUBMITTER: Shimmin C

PROVIDER: S-EPMC5547533 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:BackgroundUNderstanding Factors that explain Avoidable hospital admission Inequalities-Research study (UNFAIR) addresses how to reduce health inequalities, particularly for avoidable hospital admissions. Our Patient and Public Involvement and Engagement (PPIE) members broached that health inequalities are complex, challenging to understand and communicate. They identified a need to explore diverse views, including people who have a higher risk of health inequalities. With limited public-facing resources relating to the public's understanding or emotions around health inequalities, this project aimed to fill this gap using co-leadership and co-production.MethodsMembers of the public worked with researchers to co-produce and run PPIE workshops. This project was co-led by a member of the public and a researcher. One online workshop open to anyone in England accompanied by three face-to-face workshops were held. Public contributors, including people living in diverse communities, were invited. Inclusive involvement opportunities were offered including flexible ways of involvement and remuneration. To strengthen the key messages' rigour, transcriptions of the audio-recordings from each workshop, with facilitator notes, were analysed using thematic analysis. From the key messages, an animation was co-produced with public contributors with the public's voice being integral throughout.Key messagesA total of 58 people took part capturing intersecting and multiple dimensions of marginalisation including people with a range of ages, genders, ethnicities, socioeconomic backgrounds, and members of communities who face exclusion (including people with learning difficulties and experiencing ill-health). The animation highlighted powerful lived experience, for example, some people are dying earlier than expected. Health inequalities conjured up powerful emotions, such as anger and hopelessness. Public views of how to address health inequalities included respecting, accepting and valuing everyone, regardless of, for example, where people live. The animation is publicly available for use by anyone, including decision makers across the health and care system.ConclusionsThrough co-leadership and co-production, this project is an example of inclusive PPIE. This project provided a way for the public's voice to influence policy and practice to inform understanding and action to address health inequalities. The animation provides powerful insights into what health inequalities mean to people with examples of lived experience and corroborates the moral argument for action by decision makers.Patient and public contributionMembers of the public, including people who were affected or at higher risk of health inequalities, co-led this project and were involved as co-creators and developers from the inception of the project to completion. Their involvement was integral and documented in full throughout the project.

Project description:Background: Playgrounds provide children with many sensory, motor, and socioemotional experiences that are critical to child development. Unfortunately, playgrounds also represent an environment where children with disabilities experience barriers to accessing play. Structures and materials that are prominently found in almost all playground designs (e.g., swings, slides, sand) can present as obstacles for many children with disabilities to engage in independent play. Aims: This scoping review engaged in the empirical literature to address the research question, "What are the evidence-informed recommendations for designing inclusive playgrounds to enable participation for children with disabilities?" Consideration was given not only to the physical design of playgrounds, but also the playgrounds' surrounding built and social environments. Methods: A systematic search of Medline, PsycINFO, CINAHL, EMBase, ERIC and Scopus was conducted. Only peer-reviewed literature published in English between January 1990 and January 2021, with a primary focus on inclusive playground structure design related to any type of disability were included. Data extraction included the study author(s), year of publication, country of origin, purpose, disability types considered, methods, sample characteristics and key findings. Key findings were synthesized into evidence-informed recommendations, which were later collated, using inductive content analysis, into five broader thematically congruent groups. Results: Thirty-five studies were included using case study (n = 17); observational (n = 6); survey (n = 5); experimental (n = 4); and multiple study (n = 3) designs. Thirteen evidence-based recommendations and one promising practice were categorized into five broad playground elements: entry points; surfacing and paths; features to foster inclusive play; staffing/supervision; and design process. Conclusion: These recommendations build upon previous design-based best-practices that focused exclusively on the physical design of the playground. Our recommendations have implications for how future playgrounds should be designed to maximize usability and inclusiveness and the overall playground experiences for children with disabilities.

Project description:BackgroundHealth inequities remain a public health concern. Chronic adversity such as discrimination or racism as trauma may perpetuate health inequities in marginalized populations. There is a growing body of the literature on trauma informed and culturally competent care as essential elements of promoting health equity, yet no prior review has systematically addressed trauma informed interventions. The purpose of this study was to appraise the types, setting, scope, and delivery of trauma informed interventions and associated outcomes.MethodsWe performed database searches- PubMed, Embase, CINAHL, SCOPUS and PsycINFO-to identify quantitative studies published in English before June 2019. Thirty-two unique studies with one companion article met the eligibility criteria.ResultsMore than half of the 32 studies were randomized controlled trials (n = 19). Thirteen studies were conducted in the United States. Child abuse, domestic violence, or sexual assault were the most common types of trauma addressed (n = 16). While the interventions were largely focused on reducing symptoms of post-traumatic stress disorder (PTSD) (n = 23), depression (n = 16), or anxiety (n = 10), trauma informed interventions were mostly delivered in an outpatient setting (n = 20) by medical professionals (n = 21). Two most frequently used interventions were eye movement desensitization and reprocessing (n = 6) and cognitive behavioral therapy (n = 5). Intervention fidelity was addressed in 16 studies. Trauma informed interventions significantly reduced PTSD symptoms in 11 of 23 studies. Fifteen studies found improvements in three main psychological outcomes including PTSD symptoms (11 of 23), depression (9 of 16), and anxiety (5 of 10). Cognitive behavioral therapy consistently improved a wide range of outcomes including depression, anxiety, emotional dysregulation, interpersonal problems, and risky behaviors (n = 5).ConclusionsThere is inconsistent evidence to support trauma informed interventions as an effective approach for psychological outcomes. Future trauma informed intervention should be expanded in scope to address a wide range of trauma types such as racism and discrimination. Additionally, a wider range of trauma outcomes should be studied.

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Moving towards a more inclusive patient and public involvement in health research paradigm: the incorporation of a trauma-informed intersectional analysis.

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