2.1 Projects

- ProjectUsers of the IDIN Network (International Development Information Network)in Social Sciences, in the future, referred to in the text as IDIN Project. Selected and supported by the Information Sciences Division of the International Development Research Center - IDRC, IDRC Project 91-0278 (1992), coordinated by CLACSO (Latin American Commission of Social Sciences) 1992-1993, developed in the Department of Research in Information and Documentation of CIESU. Responsible: Martha Sabelli, associate researcher Cristina Pérez Giffoni, and methodology advisor Constanza Moreira.

Publications: ^{Pérez Giffoni, M.C. & Sabelli, M. (1995}), ^{Sabelli, M. & M. C. Pérez Giffoni (2010a)}, ^{IDRC Project 91-0278. (1992)}.

-ProjectStudy on needs, use, and production of information of workers in the metallurgical sector and related branches (UNTMRA) , in the future,UNTMRA Project, selected and financially supported by CSIC, 1994-1996, EUBCA.Responsible: Cristina Pérez Giffoni and Martha Sabelli; advisors in the topic Ana Pioli and in the methodology José Enrique Fernández.

Publications: ^{Pérez Giffoni, M. C. and Sabelli, M. (1999}), ^{Pérez Giffoni, M.C. and Sabelli, M. (2010b)}.

-Project Strengthening the methodology of distance education applied to the development of dairy systems (in the future, referred to in the text as Dairy Farmers Project), jointly with the School of Veterinary Medicine, UdelaR, selected and funded by CSIC, 1996-1999, EUBCA.Responsible: Martha Sabelli and María Cristina Pérez Giffoni, assistant researcher Paulina SzafranMaiche.

Publications: ^{Sabelli, M. and Pérez, M. (2001}), ^{Sabelli, M. and M. C. Pérez Giffoni (2010b}).

-Project Informed to decide: the needs and use of information in the environment of science and technology development , in the future, referred to in the text as S & T Decision-Makers Project.It was selected and financially supported by the Fund Prof. Clemente Estable, 1997-1998, Department of Research in Information and Documentation of CIESU. Responsible: Martha Sabelli, associate researcher María Cristina Pérez Giffoni, methodology advisor José Enrique Fernández, S y T advisor Gisela Argenti, assistant researcher Paulina SzafranMaiche.

Publications: ^{Sabelli, M., Fernández, J.E.; Pérez Giffoni, M. C. (2010}); ^{Sabelli, M.; Fernandez, J.E. & Pérez Giffoni, M.C. (1999}).

-Project Use of electronic information by academics at the University of the Republic: effects and perspectives , in the future, referred to in the text as UdelaR Academics Project.It was selected and funded by CSIC (R+D projects), 2000-2002, EUBCA.Responsible María Cristina Pérez and Martha Sabelli, methodology advisor José Enrique Fernández, collaborators Paulina SzafranMaiche and Julio Castro.

Publications: ^{Pérez Giffoni, M. C. and Sabelli, M. (2004}), ^{Pérez Giffoni, M.C. and Sabelli, M. (2010c)}.

2.2 Research objectives

The aims and objectives of the projects comprise a double dimension: the one inherent to the theoretical and methodological perspectives presented in each one on the field of information behavior and the one inherent to each situation-problem identified in a specific user community. The latter guides the scope of the research questions and the unit of analysis,as it is where the barriers, conflicts, and facilitators of the phenomenon of information transfer and flow emerge and, in short, in the contexts of individuals as subjects under investigation in their family, social, and work environment, in their daily life and their role as citizens.

2.3 Theoretical and methodological references

Summarizing the theoretical references supporting the research in this short work is a difficult challenge to overcome. We have opted for a brief mention of the main perspectives or metatheories and their leading theoreticians, referring to the publications of our authorship and co-authorship cited in the bibliography.

In the period 1992-1993, the researches adhered from the beginning to the user-centered approaches, called “alternative paradigms” by B. Dervin and M. Nilan, and specifically in the contributions of Sense-Making in an early form in Ibero-America (there is no literature that mentions it until that date)and its constructivist approaches and the models of Tom Wilson, the “master” of this disciplinary field, with his contributions to the different phases and dimensions of the phenomenon of information needs and behavior and his models of 1981 and 1996, especially INISS Project.

Undoubtedly, B. Hjøland’s Domain Anlytic Approach and other perspectives of socio-cognitive approaches from the mid-1990s onwards have contributed ideas and methods (^{Hjørland, B. &Albrechtsen, H. 1995}).

Each project is described in the book in 2010 ( ^{Pérez, M.C and Sabelli. M., 2010}a) and includes textual references of each one, where the citation of Sense-Making in 1993: ^{Dervin& Nilan (1986}) and the investigations of Michael Nilan and colleagues (^{Nilan et al. 1987}, ¹⁹⁸⁸, ¹⁹⁸⁹, ¹⁹⁹¹) as well as Tom Wilson and colleagues on the INISS project: ^{Roberts, N. & Wilson, T.D. (1988}) and with D.R. Streatfield (1977,1979, ¹⁹⁸¹) and ^{Line, M.(1971},¹⁹⁸⁰) on INFROSS project. Also, the influence of Nicholas ^{Belkin (Belkin, N. 1982}; ^{Belkin, N., Oddy, R.N. & Brooks, H.M. 1982a},^b ) with his ASK (Anomalous State of Knowledge) model. The book is digitized, and we have made it available on ResearchGate.

Part of the texts included are extracts of conferences in the Seminars of Information Users coordinated by Dr. Juan José Calva González, published in books that can be consulted (^{Sabelli, M. 2021}).

2.4 Typology of user communities, objectives, and territorial scope

The typology of the communities investigated can be summarized as follows:

2.5 Methods

The methods and techniques selected are closely related to the theoretical perspective that guides the research approach and, at the same time, to the experience from the inside of the emerging problem and the questions it raises. The design process of the projects has an immanent anchorage in the previous stages, that is, the close contact and empathy with the research subjects and those who can support us in the process of essential interaction in the construction of the research.

- In-depth interviews

They allowed us to obtain information on aspects such as opinions, perceptions, attitudes, and feelings that are often not observable. The grounded theory of Glaser and Strauss, from the 1960s, stands out.

Examples: S&T Decision-Makers Project (1997-1998): in-depth interviews with qualified informants in the decision process;UNTMRA Project (1994-1996): in-depth interviews with union leaders as qualified informants.

-Surveys with open-ended and closed-ended questions with critical incident technique.

The presence of the critical incident technique derives from the influence of Brenda Dervin’s Sense-Making methodological theory, the micro-moment time-line interview method, describing problematic situations and the search for information. It was applied in our research in a limited way to ask interviewees to recall a problem situation of research search, and the steps followed (gaps, helps, etc.) that are identified by the interviewee and especially, how he/she constructed the sense, i.e., from his/her perception of the episode.

Examples: Self-administered survey: IDIN Project (1992-1993), applied in the five regions. It was supported by the regional nodes of the IDIN Network, in charge of distributing and receiving it. A total of 145 responses were collected: Latin America: 58, Asia and the Pacific: 5, Europe: 26, Africa: 22, and Arab countries: 34. In Uruguay and Argentina, the survey was administered through a personal interview.

The survey form included: 1. respondent data; 2. information uses and needs; 3. use and needs of information in an experience; and 4. proposals for change. The data collected were coded and tabulated in DBase for further automatic processing with the SPSS utility package. It should be noted that the third part on Information use and needs in a personal experience posed critical incident technique through the sequential description, by the respondent, of a problematic situation in the search for information, which occurred in the last six months.

Face-to-face survey: UNTMRA Project (1994-1996). The data collection method consisted of a survey of 79 workers by interview, enriched by in-depth interviews with union leaders as qualified informants. The survey was structured in the following areas: 1. identification data (personal, demographic, work context, and training); 2. general opinions on information; 3. union and work information: need, access, means; 4. technical information: need, access, means; 5. business information: need, access, means; 6. use of information; 7. own production and flow of information; 8. use of technology; and 9. barriers to access. The data collected were coded and tabulated for automatic processing with the SPSS statistical package.

Face-to-face survey-interview: UdelaR Academics Project (2000-2002). A survey was applied personally by members of the research team and Librarianship students to a purposive sample of 151 teachers from the 18 services of UdelaR (13 schools, 2 colleges, 2 institutes, and 1 bachelor’s degree).The unit of analysis was the individual as a teacher-researcher. The survey form included 62 open and closed questions, covering data on the interviewee, type of electronic communication used and frequency of use, access to services, training received, own publications in electronic media, and a critical incident. Excel spreadsheets were used for automatic data processing. In-depth interviews and bibliographic and documentary analyses were also carried out.

-Focus groups

Being a collective interview technique that allows the observation of the interaction between the actors, showing the levels of consensus within relatively homogeneous groups, it is used by some projects.

Example: 3 focus groups: S&T Decision-Makers Project (1997-1998). First, 14 interviews were conducted with qualified informants from UdelaR, CONICYT, Ministry of Industry, National Quality Committee, OPP, Institute of Statistics (INE), and INIA. Guidelines for in-depth interviews were designed and applied to 12 decision makers from UdelaR, OPP, MEC, CONICYT, National Quality Committee, INIA, and the Chamber of Industries in order to approach the description of problematic situations that trigger the search for and use of information and the context in which this process took place. Based on the results of the qualitative analysis of the interviews, three focus groups were implemented: intermediaries from information units (libraries and documentation centers) in S&T, and second and third were made up with generators of statistical information and indicators of S&T, and decision-makers in the area, from UdelaR(second) and MEC, CONICYT, INIA and Clemente EstableBiological Research Institute (third).

- Methodological approach to the Dairy Farmers Project

This approach deserves a separate section due to its specificity.

The interview forms and guidelines were designed after a fluid dialogue in several meetings with the School of Veterinary Medicine team, who knew the community and, therefore, conveyed their vision of the dairy farmers and their socio-cultural context. The variables defined about the farmers are linked to demographic aspects, training, occupational, sociological (interaction with local institutions and groups), environment, motivations, and links with formal and informal information systems.

Data was collected through visits to the production units and observing the producers and their families in their work and living environment.Knowledge was obtained about the image dairy farmers had of information, their relationship with it, their needs, behaviors and satisfaction of needs, use of formal and informal sources and channels, problems and obstacles encountered, and possible ways to improve the situation. Most of the interviews were group interviews. At the same time, qualified informants linked to institutions that were seen as agents of support for the dissemination and transfer of information, promoting community participation, were interviewed.

2.6 Some results to consider from the first stage

The line of research began in an integrated manner with the teaching of User Studies at the former EUBCA with Cristina Pérez Giffoni, a colleague who was co-responsible for this fundamental period of User Studies. In 1992, by an unforeseen, fortuitous, and fortunate event (serendipity maybe), we were invited to carry out a User Study of the IDIN Network by the director of the Information Sciences Program of the IDRC, Fay Durrant Ph.D., when she interviewed us at the end of the SINUR Project - Urbanization Information Service (1987-2001) developed at CIESU, supported by this Program. And with great audacity, in a few minutes, we decided to accept the most ambitious project of the 30 years, being international and covering five regions of the world. Dr. Durrant’s orientation to the methodological theories of Sense Making, not known and disseminated in Ibero-America, through the courses and research of Brenda Dervin -her professor at Syracuse University- and Michael Nilan, was an essential starting point for our self-training, shared with Cristina Pérez Giffoni, whom we invited to participate. Thus, Sense-Making was integrated with Tom Wilson’s theories and models that dominated our perspectives since the 1970s, especially the INISS Project, with antecedents from the INFROSS Project Information Requeriments of Social Scientific and University of Sheffield projects that influenced the IDIN Project. The learning in the successful design and its execution, and especially the reading of articles thanks to the excellent newspaper library of the EUBCA and IDRC Library (Ottawa, Canada),which facilitated the consultation of several journals where those responsible for this research disseminated them in the 70s and 80s, was relevant for the continuation of the studies.

This project had a significant impact ten years later from the EUBCA in the formulation, selection by CSIC, UdelaR, and execution of the UdelaRAcademics Project, where much of its theoretical framework and methodology was reproduced by focusing on a community of social science researchers.

Actionresearch characterized the other projects of the period, the so-called UNTMRA of unionized metalworkers and that of milk producers (dairy farmers) in unfavorable contexts.

The self-reflective spiral in its different stages (planning, action, observation, and reflection), which characterizes this type of research, dialectically interrelates the theoretical and the practical, the individual and society. In this spiral, there are moments of problematization, diagnoses, proposals for change, implementation of the proposal, and evaluation in a participatory manner, giving rise to new problematizations. One of the most important results for the following stage was the continuous reflection on the reality approached to learn about it and transform it into a participatory process of the community involved. Since those years, we have considered that research should be at the service of the community and seek to solve its problems and needs, allowing a critical analysis of the process and an appropriation of its different phases and results by those involved.

Likewise, the spiral of actionresearch entails linking with other disciplines and their academic actors and incorporating them creatively and critically in the dynamics of understanding interdisciplinary phenomena. Inherent to this approach is the creation of circumstances and mechanisms that promote attitudes, habits, and forms of interdisciplinary work, fostering the integration of knowledge and experiences. In short, it motivated interdisciplinarity and the formation of interdisciplinary teams that characterized the second stage.

In short, this investigative approach to the flow of information and knowledge in society favors a participatory positioning with the community in the research process and a closer and more flexible relationship with academia and professionals in the topics under study.

The dairy farmers project contributed to the incorporation of participatory work with social and institutional actors: the rural school and the dairy farmers’ cooperative. Also, the coexistence and exchange with women of the dairy farms, with their needs, desires, concerns, and eagerness to improve, impacted a gender perspective that emerged from the shared reality and influenced the second stage.

Another aspect was the decision of the research team, not foreseen in the design of the project and its resources, to add to the newsletters (“Tambo Informativo”) included in the initial formulation, the creation of two libraries (“Bibliotambo” ): one in a rural school and the other in a cooperative of dairy farmers, to promote reading among young people and adults, and especially for rural women living in unfavorable socio-cultural contexts. In the second stage, we have foreseen informative products to be created and evaluate their access and use.

The interdisciplinary research and extension work developed in the project and the exchange built with the community showed us the possibilities and potential of the theoretical-methodological approach shared and applied with the extension area of the School of Veterinary Medicine, as they will be with other schools in the second stage.

Undoubtedly, they are a rich antecedent of an integrative vision that we expressed at the International Conference on conceptions of Library and Information Science - CoLIS 7, London, 2010 (^{Sabelli, 2010}) and in Informatio (^{Sabelli, 2008b}), and, especially, in our doctoral thesis (^{Sabelli, 2008a}).

Finally, we also had the experience of researching non-users in the S&T Decision-Makers Project, since the research showed the non-existence of indicators in S & T.

2.7 Final reflections

The research of this period gave rise to reflections interwoven with the theoretical frameworks, a fabric formed between empirical research and theories. The interrelationship is rewarding and motivates new research. These are difficult paths in small countries with scarce resources such as Uruguay, but the interpretative and social approaches of a university committed to inclusive, integral, and democratic principles make it possible to move forward.

Introduction

From 2008 to the present, the focus was on disadvantaged communities in the context of vulnerability. The research subjects were young women (2008-2010), adolescents (2010-2015), older women (2017-2019), and family members of children with Autism Spectrum Syndrome (ASD) (2021-2023). We seek to understand the social realities of information and information technologies insofar as most investigations incorporate the development and use of ICTs in the quest to disseminate inclusive information

In the period 2008-2015, we focused on young women and adolescents. The primary motivation from the perspective of information behavior research is the absence and limitations of access to inclusive information. Information services to the community that are easily accessible and adequate to the needs of young people and adolescents in unfavorable contexts remain a historical debt regarding public information policies in several Latin American countries. Information is essential to achieve social rights in their many diverse manifestations; at the workplace, within the community and family, or at an individual level. The disinformation of adolescents and young people appears as an obstacle to their development and social integration. Consequently, it is essential to study their information behavior, taking their concerns, expectations, and problems into account from a participatory and horizontal point of view, emphasizing local knowledge and facilitating the integration of qualified information.

The urban fabric is divided into micro-worlds, different places where communities live in social, economic, and cultural contexts that compose the everyday background and the way each region is inhabited. The concept, transfer, use, and assimilation of information will present singular characteristics according to different urban communities. The most vulnerable sectors, where vulnerability is associated with poverty and lack of skills and abilities that facilitate the development of human and social capital, do not easily recognize the value of information beyond the most urgent needs of everyday life. Nevertheless, the fact that such sectors are not frequently in a position to appropriate the contents by their own means is utterly disturbing. In addition to this, and paradoxically, in this over-communicated world, we were able to identify difficulty accessing and using information from the immediate surroundings, the city itself, or even the neighborhood, particularly the most necessary and relevant data to achieve social integration. (^{Sabelli, 2012b})

3.1 Projects

-Project Towards Building Information Services for the Community: a study of access and use of information by women from unfavorable contexts (zone 9 of Montevideo) , in the future, referred to in the text as Project Women and inclusive information, 2008-2010, EUBCA, selected and supported by the University of the Republic's CSIC (Sector Commission for Scientific Research) in their official call aimed at Social Inclusion and the Metropolitan Integration program (PIM). The research team is composed of library and information science teachers and researchers, and sociologists. Responsible: Martha Sabelli, associate researcher and advisor in the topic (women) Verónica Rodríguez Lopater, associate researcher Ingrid Bercovich, assistant researcher Paulina Szafran Maiche, and student interns Liliana Chávez, Graciela Mallet, Jimena Núñez, Lucia Valeta, and Diego Aguirre

The unit of analysis were young women and adolescents - users/non-users of information living in disadvantaged contexts in an area of Montevideo characterized by precarious neighborhoods called "asentamientos".

Publications:

^{Sabelli, M. & Rodríguez Lopater, V. (comps.) (2012}); ^{Sabelli, M. (2012a}); ^{Sabelli, M. (2012b}), . ^{Sabelli, M., Rodríguez Lopater, V., Bercovich, I.&, Szafran Maiche, P. (2012)}.

- Project Information and Communication Strategies Focused on Young People and Adolescents Within the Field of Public Health: Analysis and Proposals (RAP (Level One Attention Network) - ASSE (State Health Services Administration) zone 9 of Montevideo), 2010-2012, in the future referred to in the text as Project Adolescent and Health Services, selected and financially supported by the Information and Communication Academic Development Program - PRODIC. It was carried out throughout the period 2010-2012 by the GIISUR Group - Research group on information and communication for social inclusion and integration of the University of the Republic (Uruguay), created in 2009 by researchers on Information and Library Science, Communication Science, Computer Engineering, Sociology, and Social And Cultural Anthropology, addressing the social issues to be solved from the complementary and coordinated perspectives of the disciplines mentioned above (^{Sabelli et al. 2013}, ^{Sabelli et al. 2014}). The final report was published in 2015 (^{Sabelli and Rasner, 2015}).

Responsible: Martha Sabelli and Jorge Rasner. Teams: sub-team of the School of Engineering's Institute of Computing: Laura González, Flavia Serra, advisor Raúl Ruggia. Sub-team of Information Science, Paulina Szafran, María Cristina Pérez Giffoni, Jimena Nuñez Ansua, Lucía Valeta, Graciela Mallet, Sociologist Ingrid Bercovich, Lourdes Díaz (2014-2015), Andrea Cristiani (2014-2015) and Carol Guilleminot (2014-2015). Sub-team of Communication: Eduardo Alvarez Pedrosian, Victoria Cuadrado, Gonzalo Cortizo, Pamela Viera.

The subject-object of this research, carried out in the period, are the vulnerable population communities in Montevideo's disadvantaged neighborhoods. In particular, the research focuses on teenagers called "Ni Ni" (young people and teenagers who neither study nor work) and how they access, search, and use health-related information. This topic is of great interest given the recent implementation (2008) of the Integrated National Health System in the country and the development of health services in primary care, which focus on these social sectors.

The project continued when it was presented and selected in the FIC call for Prodic research groups in 2013-2015: Information and communication strategies focused on young people and adolescents in the field of health: analysis and proposals (RAP-ASSE, Paysandú, 2014-2015). Therefore, the study had a second stage during the years 2014-2015 by research group GIISUR in Paysandú; the research was developed in a small city in the North of the country (Paysandú capital) in order to carry out a comparative analysis with the project implemented in the capital city Montevideo (2010-2012). Its objective was to collect data with the support of teachers and students. The GIISUR interdisciplinary team moved to the University of the Republic campus in Paysandú university center for several periods. The comparison between the results of the two projects was based on the similarities and differences of these results, as well as the diverse points of view of the interdisciplinary research team.

Publications:

^{Sabelli, M. (2014}); ^{Sabelli, M. (2015a}); ^{Sabelli, M. (2015b}); ^{Sabelli, M. (2016}); ^{Sabelli, M. & Rasner, J. comp. (2015)}; ^{Sabelli, M., Rasner, J., Pérez Giffoni, M. C., & Álvarez Pedrosian, E. (2013)}; ^{Sabelli, M., Rasner, J., González, L., Pérez Giffoni, M.C.; Álvarez Pedrosian, E. & Ruggia, R. (2014)}; ^{Miguel, A., Montero, L., Saint Martin, I. (2019}).

- Project Perspective of old age and gender in disadvantaged environments: towards inclusive strategies of information and communication, The Ibirapita Plan and the Attention System (April 2017 to April 2019), in the future referred to in the text as InfoCoMayores Project, selected and supported by the University of the Republic's CSIC (Sector Commission for Scientific Research). Responsible: Martha Sabelli. Developed in the Information Institute of the School of Information and Communication of the University of Republic, Research Group GIISUR.

The research team of the InfoCoMayores project was formed by information science researchers, sociologists, communication scientists, and computer engineers. They worked in two university-level sub-teams and acted independently of the Ibirapitá Plan. The first one will be called the FIC team, which has ten years of experience in researching information behavior in disadvantaged backgrounds research, is responsible for the presentation and coordination of the project, is formed by one information science senior researcher, five information science junior researchers and a sociologist, and information science students, who carried out the study of informative behavior: Carol Guilleminot, Andrea Cristiani, Jimena Nuñez, Paulina Szafran, Lourdes Díaz, Ingrid Bercovich. The second one is the INCO team of the School of Engineering's Institute of Computing, incorporated in the second year of the project research, which was carried out by three students in the development of their undergraduate project entitled Portal de accesibilidad del Plan Ibirapitá (Portal of accessibility of the Ibirapitá Plan) of Alejandro Miguel, Luciano Montero, and Inés Saint Martin, guided by the teacher tutors Cecilia Apa, Ewelina, Bakala and Laura González, and the honorary advisors Rosario Aguirre (Sociology, gender) and Raúl Ruggia (Computer Engineering).

Publications

^{Sabelli, M. (2020a}); ^{Sabelli, M. (2020b});. ^{Sabelli, M. comp.(2023} in press)

- Project Inclusive and integrative information for families of children and adolescents with Autism Spectrum Disorder (ASD): access, use, appropriation, and mediators. InFam-ADS

It is a research project selected and supported by the University of the Republic's Sector Commission for Scientific Research (CSIC) in the 2020 call for R&D projects. It is developed at the Information and Society Department, Information Institute, at the School of Information and Communication of the University of Republic, together with the Pediatrics Chair C of the School of Medicine. Martha Sabelli (FIC, Udelar) and Ana Laura Casuariaga (Faculty of Medicine, Udelar) are in charge of the project. Team members: School of Medicine: Noel Cuadro (2021-2023), Carolina Álvarez (2021-2023); Information Institute: Raquel Chávez (2021), Andrea Cristiani (2021-2023), Carol Guilleminot (2021-2023), Ingrid Bercovich (2021-2023), Patricia Choca (2021-2023) and María Eugenia Arrejuría (2022-2023). The project has two highly-qualified honorary advisors: Prof. Dr. Gustavo Giachetto and Dra. Kristin Sohl. The project's background is the final thesis of a recent graduate with the Bachelor's Degree in Library Science, entitled Comportamiento informativo de familiares de personas con Trastorno del Espectro Autista (TEA): un estudio de caso (Chávez, 2019) ("Information Behavior of Family Members of People with Autism Spectrum Disorder (ASD): A Case Study"), defended in November 2019 and a participant of the team in the first year 2021.

The scenario exposed in Chávez's study challenges us in this study; it shows us distressing situations that overwhelm members of a society that does not show knowledge about and solidarity with the problems of the families of 1 in 88 children born with ASD in Uruguay.

In this sense, we intend to investigate the access, the flow of information and communication, and the appropriation of information content about their children with ASD by family members in the contexts of their daily lives, as well as the sources of information they access and use, taking family members and professional and social mediators as the unit of analysis. The project aims at ordinary citizens whose children have some form of ASD. Inclusive information is an essential bridge for empowering families and social mediators involved in supporting children with ASD.

The gender perspective is considered based on the results of the FIC team's research background, Chávez's research (2019), and the international ones cited. Mostly, women assume the care of children with ASD, confirming the statements made on gender in the InfoCoMayores Project. The complexity of this informative phenomenon supports the creation of the aforementioned interdisciplinary team, specialized in the area of informative behavior of Information Science, and of a national and international team highly specialized in the area of ASD in Medicine.

Publications

^{Chávez, R. & Sabelli, M. (2020})

3.2 Research objectives

The objectives of the four research projects in this stage emerged, on the one hand, from the research processes and the results on the information behavior of communities of ordinary citizens in unfavorable situations in the first stage. On the other hand, from the views and ideas supported by the project leaders and teams concerning the deficiencies and limitations in the access, use, and appropriation of necessary, relevant, valuable, and reliable information for the personal and social development of social sectors in unfavorable situations and, especially, vulnerable in the contexts in which they live.

The exposed results of the first stage showed a greater vulnerability in young and adolescent women but also older women. The gender perspective emerged from the studies without being a preconceived proposal, which further legitimizes the orientation of the projects, intertwined with each other and forming a spiral built from the interdisciplinary work with and for the communities investigated.

In order to know the objectives as well as the next headings, we refer to and suggest the publications cited, available and of public access, authored by the project teams, where the dimensions and research questions, the results, the main reflections and perspectives are inserted.

3.3 Theoretical and methodological references

As in the first part, each project had specific reference frameworks related to the typology of the communities studied in unfavorable situations (young women and adolescents, older women, relatives of children and adolescents with ASD) in relation to the access, use, and appropriation of inclusive information according to their needs. It is worth mentioning the permanence of the "master" Tom Wilson, who continued to guide us with his ideas, research, and Tom Wilson's models 1981, 1997, 2020 and the contributions from contemporary ethnographic and phenomenological perspectives (^{Wilson 1981}, ¹⁹⁸⁴, ^1997a,^b, ^1999a,^b, ^2006,a,^b).

Consistent and closely related to these approaches is the social constructionist of Sanna ^{Talja, Touminen et al. (2005}, ²⁰⁰⁷, ²⁰¹⁵) and significantly, closely interrelated with the study of disadvantaged communities in their daily lives, the Everyday Life Information Seeking (ELIS) of ^{Savolainen (1995}, ²⁰⁰², ²⁰⁰⁴, ²⁰⁰⁵, ^2008a, ^2008b), ^{Agosto. & Hughes-Hassell (2005}), ^{Hersberger (2001}, ²⁰⁰²-³, ²⁰⁰⁵), and the precious contributions of Elfreda ^{Chatman (1996}, ¹⁹⁹⁹). Finally, the influence of the ideas and theory of Karen E. ^{Fisher (2004}, ²⁰⁰⁵, ²⁰⁰⁶, ²⁰⁰⁷) and J. ^{Bronstein (2017}, ²⁰¹⁸, ²⁰¹⁹) and S.^{Buchanan et al (2019}) about the role of information intermediaries.

It is worth noting the great contribution of the two fundamental books of the 2000s, essential for postgraduate courses and the updating of interdisciplinary concepts. The book by Donald O. ^{Case and L.M.Given (2016}), a new edition to be published this year, and that by Karen E. ^{Fisher, Sanda Erdelez & Lynne Mckechnie (2005}).

The publications corresponding to each project include the bibliography consulted and cited.

Women and Inclusive information and Adolescents and Health Services Projects

The theoretical-methodological approach is based on the contributions of information behavior theories, especially the one on information poverty (^{Chatman, 1987}, ¹⁹⁹⁶, 2005; ^{Le Dantec, 2011}), the social constructionist perspective, research in the area of ELIS (^{Savolainen, 2008a}), studies referred to Lay Information Mediary Behavior (LIMB) and information ground theory (^{Fisher et al., 2005}; ^{Fisher, Durrance and Hinton, 2004}; ^{Fisher, Landry and Naumer, 2007}), and others.

These referents helped us comprehend the information behaviors and information practices of a particular community of users (adolescents in vulnerable contexts) and the potential mediators in the field of health care (health care staff of primary health care services). It is a complex phenomenon where actors perform in different situations and places. Contributions from LIMB, the "information ground" theory, and the conceptualization and valuing of the "place" in everyday life were significant for our project. These concepts have been reviewed and analyzed in papers about the "information worlds of individuals" by Liangzhi ^{Yu (2011}). Discussion arising from the topic and the approach of space, "the places," and the temporal dimension promote new reflections on Popper's three worlds.

- InfoCoMayores Project

Within the framework of the InfoCoMayores Project, an extensive and exhaustive bibliographic compilation has been carried out. It is a bibliography of national, regional, and global scope, covering 132 articles, papers, and books addressing the subject of the elderly and tablets from different disciplinary approaches. The relevant topics have to do with the focus of the project and have been characterized by their specificity concerning the research's topics of interest and seeking to represent in it the plurality of approaches to the same topic.

In the line of theoretical-methodological referents of the project above, the study is crossed by an interdisciplinary look fed by selecting some approaches that help to explore and understand the informative behavior better. Among them, we highlight the concept of information poverty and the role of mediators by Elfreda A. Chatman, who, in the 1980s and 1990s, did research on women in situations of information poverty. Her theory on the concept of the life on the round (^{Chatman 1987}, ¹⁹⁹², ¹⁹⁹⁶, ¹⁹⁹⁹, ²⁰⁰¹) of poor women living in information poverty marks a new and precious interdisciplinary approach to our older women in small worlds. She defines the concept as "a public form of life in which things are implicitly understood" (^{Chatman, 1999}, p. 212) and analyzes information flow between insiders and outsiders in these small settings. His theory on information in contexts of poverty formulates factors that influence the needs and access to information in these communities: secrecy, deception, risk-taking, and the relevance or usefulness of the situation (^{Chatman, 1996}, p. 195-197).

Reijo Savolainen's and his colleagues' notion of the phenomenon of information as practice, which has social constructionism as a reference, is central to our exploration of the subjects-objects of study in their everyday life, and we accompany the ELIS model approach. Its approach and the application of qualitative methods, including discourse analysis of people's perceptions of their competencies as information seekers and users, constitute an essential contribution to this work proposal (^{Savolainen, 1999}, ²⁰⁰², ²⁰⁰⁴, ²⁰⁰⁵, ^2008a,^b).

Research on the role of information mediators and the notion of information ground by Karen E. Fisher (ex K. E. ^Pettigrew) and her co-authors ( ^{Fisher et al. 2005}, ²⁰⁰⁶, ²⁰⁰⁷) are innovative contributions to Information Science and the field in particular.

The bibliography recovered on older adults and ICT is broad and interdisciplinary. Between the main referents on third agers as users of tablets are authors from the United States, Australia, the United Kingdom, and the Nordic countries. The pioneer works of ^{Williamson and colleagues (1980}, ¹⁹⁹⁶, ¹⁹⁹⁷, ²⁰⁰⁹, ²⁰¹⁰, 2015) and most recent works from diverse disciplines, like those by ^{Alvseike et al. (2011}), ^{Barnard et al. (2013}), ^{Magsamen-Conrad et al. (2015}), ^{Veinot& Williams (2012}), ^{Vorrink et al (2017}), ^{Vroman et al. (2015}), ^{Wright (2014}), are also relevant to this research.

- InFam-ADS Project

The project continues with the framework of the previously mentioned referents, especially Chatman, Savolainen, Fisher, and colleagues.

The literature on the informational behavior of parents of children with ASD is very scarce; Chávez (2019) reviews five investigations: ^{Gibson, Kaplan, and Vardell (2017}), ^{Grant, Rodger, and Hoffmann (2015}), ^{Hartley, Barker y Seltzer, et al. (2010}), ^{Mackintosh, Myers y Goin-Kochel (2005}), ^{Martinović y Stričević (2016}) identified as the closest antecedents to their recent research (2019) and as mentioned above, motivating this research project. Some works have been significant referents of empirical research conducted in different countries. They all express the absence of studies on the access and flow of information of family members of people with ASD or other different capabilities.

Some research resulted in a significant contribution to elaborate the project, for example, the articles by ^{Gowen, Christy, & Sparling (1993}), ^{Murphy & Tierney (2006}), ^{Bilal (2010}, July), ^{Mitchell& Sloper (2002}), ^{O'Reilly, Karim, & Lester (2015}), ^{Mulligan, Steel, MacCulloch, & Nicholas, D. (2010}), ^{Walker's book (2012}), and we highlight the very recent article from China by ^{An, Na, & Zhang, (2019}).

3.4 Typology of user communities, objectives, and territorial scope

3.5 Methods

The main ideas, theories, and methods of the four investigations are presented in detail in the publications of each project. The emphasis is placed on the adaptation to the typology of the subjects studied and the role of social mediators. The theoretical and methodological references, learning, and the impact of each project's results on subsequent ones are analyzed. Public information policies aimed at these social sectors are also considered.

- Project Women and Inclusive information

The research strategy is based on qualitative methods: observation, focus groups, workshops, and in-depth interviews:

- Project Adolescents and Health Services

In order to collect the necessary information, the research strategy was based on the following sources of qualitative nature:

- Project InFoMayores

A mix of methods was applied (Paysandú and Rocha): in-depth interviews with qualified informants (15), a questionnaire (a survey with open and closed questions to a sample of 163 users and 21 non-users of the Ibirapitá Plan), in-depth interviews with qualified informants and trainers (interviews with 10 trainers), observation of 15 tablet-distribution workshops, focus groups and validation workshops of the digital solution designed for tablets applied in two capital cities (Paysandú and Rocha) and two small towns (Quebracho and La Paloma) with the collaboration of community organizations; 7 focus groups with older women and their tablets; research on local information, identification, and collection.

In the second year (May 2018 - April 2019), the following activities were carried out by FIC and INCO teams: focus groups with the older women to deepen the identification of their local information needs, design of a digital information resource by INCO team in collaboration with the FIC team, two stages of participatory workshops with users to validate the product designed for tablets with local information in the selected cities. These were organized by the FIC team, supporting participatory validation of the product by older women. Some of them participated in the focus groups.

Finally, in-depth interviews with the trainers as mediators were carried out in Paysandú and Rocha, and in the last two months of the project, volunteers were interviewed; this was a new figure created to support the plan.

- Project InFam-ADS

The research methodology uses qualitative techniques to interpret and understand the meaning and sense of the information. The data collection techniques are in-depth interviews with qualified informants and questionnaires to family members and professional and social mediators. The data collection techniques mentioned below have been applied in the projects with excellent results in the period 2008-2019: 10 in-depth interviews have been applied to qualified informants (10), professionals, and technicians in the health area, and 8 to members of the management or commissions of associations of families of children and adolescents with ASD. The interviews were recorded and transcribed with the consent of the anonymity of the interviewees. The analysis was carried out using the MAXQDA qualitative analysis software purchased by the project.

The survey planned for the second year was transferred to the third year (2023) due to problems related to the pandemic and its impact on health professionals and technicians, and families. The questionnaire will be applied in the first months of 2023 to intentionally selected family interviewees, with closed and open questions, with a number between 70 to 100, considering the saturation of the information obtained. A questionnaire will also be applied to professional and social mediators (pediatricians and other specialties related to children with ASD, members of family associations) with closed and open questions ranging between 20 and 30. Focus groups composed of mothers in vulnerable situations will be a fundamental research method.

The analysis of transcripts of the interviews with qualified informants, open-ended questions from the questionnaires, and the speeches of the focus groups will be analyzed with MAXQDA for the assignment and linking of codes. The structure that will govern the analysis will be organized according to the analysis dimensions and the questions the project seeks to answer.

3.6 Some results to consider from the second stage

Considering the results is more appropriate from the approach of external evaluators and specialists in the disciplinary field and, more relevantly, because of the wide diversity of social and political actors and people involved as subjects object in the research. The perspective from the "inside" is biased by experiences throughout personal and group academic experiences, but also in the relationship with communities, not always similar and consensual. Therefore, what is expressed here responds to a vision of the author, a starting point for discussion by those who participated with commitment and sense of belonging in these years of unavoidable and permanent challenges, in a complex path such as approaching the life of human beings in a daily life characterized by information poverty.

From our perspective, we selected those results identified as the most relevant, sought after but sometimes accidental, which (serendipity?) appear as unalterable and singular traces in a path full of beliefs and optimism concerning ordinary people. Therefore, we avoid reviewing written notes, whether personal or shared in co-authorships. Readers can go directly to the reports published in books, articles, and chapters.

First, check the close relationship between empirical research and theoretical perspectives, step by step, project by project, how the relationships between research processes, results, and some of the outstanding ideas of our beloved theorists (among them Wilson, Chatman, Savolainen, Fisher and colleagues, Brenda Dervin) were tightened. Although we did not talk about models, each idea and theory could be confirmed. We leave it to others to opine and identify the influence of the models; we have not opted for a specific one, and in fact, we are not aware of the influence of each, undoubtedly enormous and permanent.

Secondly, the initial concern, supported by the background of the first stage, as mentioned, for the construction of what we call inclusive information, overcoming what we differentiated early on and called the information gap, differentiating it from the digital gap in the 90s, which guided our doctoral thesis in the early 2000s (^{Sabelli, 2008}). In this way, we collaborated in forming the GIISUR Group, interdisciplinary and united in pursuit of social inclusion and integration through information and communication. Each project manifested shortcomings and limitations in the information and communication flow phenomena from inside and outside the surveyed communities and made proposals.

Thirdly, the discovery of new dimensions related to the results of each investigation applied in the subsequent one. In this way, the encapsulation of young women and adolescents helped us discover in the dialogue with them a new revelation for us, possibly debatable: the lack of life projects, related to low self-esteem, makes information and the consequent search, that is, to be informed, unnecessary. A daily life characterized by the poverty of information, only altered when "a fire" occurs, an unavoidable need in their daily life, basically inserted in their immediate context: their home and children. However, when asked who they resorted to, the mother appeared, but also the health staff of the polyclinics and primary care health centers of the recently created National Integrated Health System (SNIS). Likewise, to perceive the condition of the Ni Ni, a social and cultural problem of the country, both female and male adolescents, who were at the center of the Project of Adolescents and Health Services.

Fourthly, finding that reliability appears as a sine qua non condition both in the flow of information within the community and in the researcher-researched relationship. Over the 30 years of research, its presence in the approaches and improvements of the projects has been unquestionable. A reason for conversation when starting research teams; in five minutes, a trust gained in years of work with the community can be lost.

Health information, or more precisely from health services, in fifth place, clearly emerges as a place, a third place, created by the SNIS by incorporating more than a million people in a country of just over 3 million. Our research subjects objects go there, especially women.

Sixth, to include in the second and third projects the development of information resources and not limit ourselves to studying information behavior. Therefore, it was extended towards a participatory construction and evaluation with the researched community. In keeping with ICT times, designing electronic information resources in an interdisciplinary and participatory manner and evaluating them jointly was not only a substantial contribution to the results but also, they feel that their opinions and suggestions are respected, being part of a community of practice.

Finally, and continuing in the final reflections, the role of the so-called social mediators of information; without them, it is not possible to create the essential bridges with the potential users of desirable, necessary, and pertinent information who live in social isolation in small worlds, and harmed with false or inadequate information.

Finally, we must also say that Uruguay is a somewhat complex country, with discourses often inconsistent with the desirable and urgent actions in public information policies. Although the policy designs and their rapid implementation - not adequately disclosed at the end of the period - in 2005-2019 were very estimable, among them the agendas of ANII, Ceibal Plan, and Ibirapitá Plan.

3.7 Final reflections

Reflecting today with optimism and hope is complicated. These are times of uncertainty, where death is around the corner; millions of people must leave their homes because of war or lack of food, and vulnerable sectors are growing worldwide. These are days when algorithms connect and penetrate our lives and identities, making us doubt where they are created and their purposes. Political, economic, social, and cultural power is increasingly concentrated; in short, so is the creation and dissemination of information. The future of the discipline of the field of information behavior is embedded in this present and near future.

Nevertheless, we must face these challenges and encourage the new generations; there have always been tools, sources, resources, and information services possible to create and use, even in very adverse situations and with few resources.

In this challenge, we believe that we must act together with the social mediators of information to build a model. We assume this debt, dilated by the multiple academic activities, to write about them, collecting the experiences of the projects and trying to approach a modest theory full of the writer's limitations. It is a promise, in the end, if life allows us.