Research as intervention? Exploring the health and well-being of children and youth facing global adversity through participatory visual methods

Abstract

201)Over the last decade, global health research has taken a turn towards using knowledge generated through translation (from health professionals to the community) and dissemination (from research results to the wider audience). However, Greenhalgh and Wieringa (2011) suggest 'that while "translation" is a widely used metaphor in medicine, it constrains how we conceptualize and study the link between knowledge and practice' (p. 501). Often the knowledge garnered from such research projects comes from health professionals rather than reflecting the lived experiences of people and communities. Likewise, there has been a gap in 'translating' and 'disseminating' the results of participatory action research projects to policymakers and medical practitioners. This article will look at how using participatory visual methodologies in global health research with children and youth facing global adversity incorporates the multiple functions of translation and dissemination so that research becomes a means of intervention. Drawing from a literature review of participatory visual methods as media, content and processes of global health research, this paper raises practical, theoretical and ethical questions that arise from research as intervention. The paper concludes by exploring what lessons emerge when participatory visual methodologies are integrated into global health research with children and youth facing global adversity.

Place as a Social Determinant of Health: Narratives of Trauma and Homeland among Palestinian Women

“…Regarding theory, it is essential we prioritise and build upon frameworks that help us examine the relationships between power, place and well-being. These provide a foundation for research rooted in creative and collaborative research modalities, including community-based participatory research, and the use of sketch maps, participatory GIS and arts-based approaches (D'Amico et al, 2016;Kwan, 2008;Smith, 2016;Wallerstein et al, 2017). Regarding education and preparation for practice, strengthening our pedagogical focus on place coincides with the movement for social work education to better confront and counter multiple, ongoing consequences of colonisation (Tamburro, 2013)-and not, as Tuck and Yang (2012) emphasise, in a metaphoric sense, but in a sense that recognises the centrality of land and place.…”

A systematic literature review of the ethics of conducting research in the humanitarian setting

“…Future research/initiatives: Strengthen the relationships between humanitarian aid groups and academic institutions. [11,59] Research is justified insofar as it is not compromising relief efforts [60] MSF's refusal to participate in research on treatment rationing [55] The evolution form pure researcher to researcher-practitioner [61] Justification for research in conflict setting [62] Explanation of MSFs ethics of studying HIV medication rationing [63] Generally limited resources in these settings [64] Effective research design might inhibit optimal treatment initiatives [53] Reassessing a participant's consent during the experiment [44] Informed consent in the setting of a particularly fatal disease [46] Use of a "gatekeeper" when seeking informed consent [21] A more nuanced view of consent might be more suitable for emergencies [21] More flexible approach to consent [22] "Humanitarian misconception" [27] Challenges of consenting children [65] Consent during disasters may be coercive [23] Exclusion of groups may undermined justice [38] Regional collaboration for ethical review [66] Dynamic consent [38,44] Participants may find it difficult to separate consent for research from receiving aid [27,38,46] Use of gatekeepers for attaining consent [21] Acceptance of less rigid consent procedures in the humanitarian setting [21,22] Forcing participants to relive trauma for the purpose of research raises ethical questions [44,65] Unavoidable coercion [23] Tensions:…”

“…Consensus that children should be involved as research participants [67] Researchers must anticipate urgent issues [43,70] Consenting children to relive trauma for the purpose of research [65] Fundamental right that children be allowed to participate in research [43,67,70] Challenges of consenting children [65,70] Tensions:…”

“…However, as participants are synthesizing novel content during the study, and are often encouraged to draw on traumatic experiences as inspiration for this content, fully informed consent is impossible. This is because neither participants nor investigators can completely anticipate which direction their facilitated creative endeavors might turn [44,65]. This type of research may require more creative or dynamic forms of consent such as frequent check-ins with participants, or "dynamic consent", as described above.…”

Prioritizing young people's emotional health support needs via participatory research

“…, D'Amico et al . , Gomez & Ryan ) and is a valid approach to accessing and representing youth perspectives (Lavis & Hewson , Pryjmachuk et al . , Yardley et al .…”