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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:COVID-19 is a major threat to public safety, and emergency public health measures to protect lives (e.g., lockdown, social distancing) have caused widespread disruption. While these measures are necessary to prevent catastrophic trauma and grief, many people are experiencing heightened stress and fear. Public health measures, risks of COVID-19 and stress responses compound existing inequities in our community. First Nations communities are particularly at risk due to historical trauma, ongoing socio-economic deprivation, and lack of trust in government authorities as a result of colonization. The objective of this study was to review evidence for trauma-informed public health emergency responses to inform development of a culturally-responsive trauma-informed public health emergency framework for First Nations communities. We searched relevant databases from 1/1/2000 to 13/11/2020 inclusive, which identified 40 primary studies (and eight associated references) for inclusion in this review. Extracted data were subjected to framework and thematic synthesis. No studies reported evaluations of a trauma-informed public health emergency response. However, included studies highlighted key elements of a "trauma-informed lens," which may help to consider implications, reduce risks and foster a sense of security, wellbeing, self- and collective-efficacy, hope and resilience for First Nations communities during COVID-19. We identified key elements for minimizing the impact of compounding trauma on First Nations communities, including: a commitment to equity and human rights, cultural responsiveness, good communication, and positive leadership. The six principles guiding trauma-informed culturally-responsive public health emergency frameworks included: (i) safety, (ii) empowerment, (iii) holistic support, (iv) connectedness and collaboration, (v) compassion and caring, and (vi) trust and transparency in multi-level responses, well-functioning social systems, and provision of basic services. These findings will be discussed with First Nations public health experts, together with data on the experiences of First Nations families and communities during COVID-19, to develop a trauma-integrated public health emergency response framework or "lens" to minimize compounding trauma for First Nations communities.

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.

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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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