Equity and inclusivity in research: co-creation of a digital platform with representatives of marginalized populations to enhance the involvement in research of people with limited literacy skills

To improve health equity, as well as equity in research, community-engaged research and participatory research needs to be inclusive. Equity in health research refers to the principle that anyone affected by research or who can benefit from its outcomes should have equal opportunities to contribute to it. Many researchers advocate the importance of promoting equity in research and engage in processes that foster the research involvement of lay persons, patients, and community members who are otherwise “absent” or “silent”. Still, people with limited literacy skills who experience unwarranted structural barriers to healthcare access have little involvement in research. Low literacy is a major barrier to equity in health research. Yet there exist approaches and methods that promote the engagement in research of people with literacy challenges. Building on our previous research projects conducted with community members using participatory visual and sound methods (participatory mapping, photovoice, digital storytelling, etc.), we embarked on the co-creation of a digital platform in 2017. Our aim in this commentary is to report on this co-creation experience that was based on a social justice-oriented partnership. The development of the online platform was overseen by a steering committee made up of workers from community organizations involved with people with limited literacy skills, students, and researchers. In the development process, the co-creation steps included a literature review, informal interviews with key informants, and discussion and writing sessions about format and content. After numerous challenges raised and addressed during co-creation, the Engage digital platform for engagement in research went live in the winter of 2020. This platform presents, on an equal footing, approaches and methods from academic research as well as from the literacy education community engaged with people with limited literacy skills.

Boiotian Inscriptions in Epichoric Script

This chapter provides a critical presentation of the most important Boeotian inscriptions in epichoric script published since the revision of Local Scripts in 1990. It allows us to follow the development of Boeotian epigraphy from the Archaic period well into the early fourth century BC. Several new inscriptions supplement information derived from the literary sources; one in particular spectacularly vindicates the good faith of Herodotus. Archaeologically, such texts have allowed the identification of major ancient sites. Epigraphically, they display a remarkable uniformity that allows us to talk of a Boeotian koine. Historically, they challenge established ideas of limited literacy. Recent finds also unequivocally demonstrate that the Boeotian script was still being used well into the fourth century and approximately down to the period of the so-called Theban hegemony. An appendix provides the editio princeps of a funerary epigram inscribed in epichoric script.

Developing a protocol for adapting multimedia patient-reported outcomes measures for low literacy patients

Background Self-administration of patient-reported outcomes measures (PROMs) by patients with low literacy is a methodologic and implementation challenge. There is an increasing emphasis on patient-centered care and wider adoption of PROMs to understand outcomes and measure healthcare quality. However, there is a risk that the use of PROMs could perpetuate health disparities unless they are implemented in an inclusive fashion. We present a protocol to adapt validated, text-based PROMs to a multimedia format (mPROMs) to optimize self-administration in populations with limited literacy. We describe the processes used to develop the protocol and the planned protocol implementation. Methods/Design Our study protocol development was guided by the International Quality of Life Assessment (IQOLA) protocol for translating and culturally adapting PROMs to different languages. We used the main components of IQOLA’s protocol to generate a conceptual framework to guide development of a Multimedia Adaptation Protocol (MAP). The MAP, which incorporates human-centered design (HCD) and takes a community-engaged research approach, includes four stages: forward adaptation, backward adaptation, qualitative evaluation, and validation. The MAP employs qualitative and quantitative methods including observation, cognitive and discovery interviews, ideation workshops, prototyping, user testing, co-creation interviews, and psychometric testing. An iterative design is central to the MAP and consistent with both the IQOLA protocol and HCD processes. We will pilot test and execute the MAP to adapt the Patient Reported Outcomes Measurement Information System (PROMIS) Upper Extremity Short Form for use in a mixed literacy hand and upper extremity patient population in Baltimore, Maryland. Discussion The MAP provides an approach for adapting PROMs to a multimedia format. We encourage others to evaluate and test this approach with other questionnaires and patient populations. The development and use of mPROMs has the potential to expand our ability to accurately capture PROs in limited literacy populations and promote equity in PRO measurement.

Detecting anxiety and depression among people with limited literacy living with chronic low back pain in Nigeria: adaptation and validation of the hospital anxiety and depression scale

Background The Hospital Anxiety and Depression Scale (HADS) is one of the most popular measures of anxiety and depression. The original HADS is mostly used in Nigeria precluding people with limited literacy. This study aimed to cross-culturally adapt and psychometrically test the HADS for rural and urban Nigerian Igbo populations with chronic low back pain (CLBP) who have limited literacy. Methods The HADS was forward translated, back translated, and appraised. Face and content validity was ensured by pre-testing the translated measure among a convenience sample of twelve rural Nigerian dwellers with CLBP. Reliability utilising Cronbach’s alpha, intraclass correlation coefficient, Bland–Altman plots and minimal detectable change were investigated amongst a convenience sample of 50 people living with CLBP in rural and urban Nigerian communities. Construct validity testing involving correlations between Igbo-HADS and Roland Morris Disability Questionnaire measuring self-reported back pain-specific disability, World Health Organisation Disability Assessment Schedule assessing generic self-reported disability, Fear Avoidance Beliefs Questionnaire measuring fear avoidance beliefs, and eleven-point box scale assessing pain intensity, and exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) among a random sample of 200 adults with CLBP in rural Nigerian communities were conducted. Results Idioms and colloquialisms were difficult to adapt. Internal consistency was good (α = 0.78) and acceptable (α = 0.67) for anxiety and depression subscales respectively. Intraclass correlation coefficients were very good (ICC ≃ 0.8) for both subscales. Minimal detectable change was 6.23 and 5.06 for anxiety and depression subscales respectively. The Igbo-HADS and the anxiety subscale had strong correlations (≃ 0.7) with generic self-reported disability; moderate correlations (≃ 0.5–0.6) with pain intensity, self-reported back pain-specific disability, and fear avoidance beliefs. The depression subscale had the lowest correlations (≃ 0.3–0.4) with these outcomes. The EFA produced a two-factor structure with cross-loading of items. The CFA showed poor fit indices for the EFA structure, the original two-factor structure, and one-factor structure. Conclusion The HADS may not be suitable for assessing anxiety and depression, or emotional distress in this population due to difficulty achieving cross-cultural equivalence with western idioms; and the expression of emotional distress through somatisation in this culture.

Eclectic Traditional Value Hub Model or four-in-one: An Innovative Booster of Community Quadriliteracy among Adults in Rwandan Rural Communities

Various studies on literacy have been conducted worldwide, but there is paucity of studies that explored adult literacy from the perspectives of African traditional values. Many African communities, including Rwanda, still experience a low level of literacy in the 21st century. As a contribution to address this literacy gap, an innovative model coined “Eclectic Traditional Value Hub Model” is being implemented in selected Rwandan rural communities to promote quadriliteracy, community literacy and digital literacy among adults with limited literacy. The newness of this model is twofold: firstly, it draws from a range of African and Rwandan traditional values; secondly, it boosts parallel literacy practices in four languages, namely Kinyarwanda, English, French and Kiswahili, by which it is described as “Four-in-One”. This study reports on one year’s implementation of this model, exploring its level of success in accelerating quadriliteracy and community digital literacy and numeracy among Rwandan communities. Participants include University of Rwanda lecturers who initiated the model, graduates from secondary schools who are literacy trainers in their local communities and trainees who are citizens with limited literacy including motorists, street vendors, small-sized business people and others who strive to uplift their literacy levels. The successful stride of this model is that about ten thousand community members from Eastern province are accelerating their literacy practices through translingual and cross-lingual practices. We recommend the application of this model to other African settings with more African traditional values and assess its impact in minimising the high illiteracy rate reported in various corners of Africa.

Scoping Review: Valid and Reliable Health Literacy Assessment Tools Used in Low- and Middle-Income Countries

Background and PurposeDespite the importance of health literacy (HL) in health outcomes, most HL assessment tools are developed and used in first world, English speaking countries, and their applicability in low and middle-income countries (LMICs) is unclear. The purpose of this review is to examine valid and reliable tools used to assess HL among people in LMICs.MethodsA literature search of three databases was conducted with 20 final articles.ResultsCurrent HL assessment tools used in LMICs rely on participant's literacy and focus on measuring people's functional HL rather than reflecting the evolving definitions of HL.ConclusionsMore research needs to be conducted to better understand how people with limited literacy acquire and apply HL, and HL assessment tools need to assess various aspects of HL beyond one's functional HL.