Ativismo e redes sociais de cuidadoras de pessoas com TEA

Abstract

This thesis aimed to analyze the influence or relationship of social networks with the engagement of caregivers in activism for people with Autism Spectrum Disorder (ASD) in the cities of Belém and Ananindeua. Three specific objectives were formulated: 1) to investigate the activism related to disability in national and international scientific literature; 2) to characterize the activism of caregivers of people with ASD in Belém and Ananindeua; and 3) to understand the configuration of the social network that structures the activism of caregivers of people with ASD in these cities. To investigate these objectives, three independent studies were organized. Study 1, "Activism and Disability: An Integrative Literature Review," aimed to investigate activism related to disability in national and international scientific literature to identify activists, verify forms of organization and activism, and understand the research methodologies. This involved following the six steps recommended for an integrative review and the PRISMA statement (2020), using descriptors such as "political activism," "disabled," and "disabled persons" in databases like PsycINFO, SCOPUS, and SciELO. Out of four search strategies, 47 articles were identified, 10 were selected, and five were included in the review. The results highlighted that the research methodology was qualitative, including three theoretical articles with conceptual and historical analyses and two empirical studies using interviews, one with participant observation. Study 2, "From Care to Activism: Perceptions of Caregivers of People with ASD," aimed to characterize the activism of caregivers in Belém and Ananindeua by analyzing sociodemographic profiles, motivations, practices, demands, achievements, and time management between activism and care. This observational, crosssectional, descriptive study with a qualitative approach involved 30 caregivers engaged in activism, selected intentionally through the snowball technique. The Sociodemographic Inventory and the Reference Activists Survey were used for data collection, analyzed through Content Analysis. The results showed that most activists were between 41 and 50 years old, with higher education, identified as brown, Catholic, married, formally employed, with a family income of 3 to 5 minimum wages, and without benefits from income transfer programs. Activism motivation ranged from the lack of state support to participation in civil groups and entities that provide welcoming and information. Activist practices included raising awareness about ASD, participating in political debates, and using digital technologies. The demands focused on public policies and family support, while the achievements highlighted legislation, social rights, and social visibility. Time management revealed challenges related to overload, the importance of the support network, and the need for flexibility, emphasizing the balance between care responsibilities and activism. Study 3, "Activism of Caregivers of People with ASD: A Study from the Perspective of Social Network Analysis," aimed to understand the activism of caregivers of people with ASD in Belém and Ananindeua, mapping their social network and analyzing the sociometry of the network and the centralization of the involved entities. This observational, cross-sectional, exploratory, and descriptive study with a quantitative approach involved 30 activists identified through the snowball technique. The Sociodemographic Inventory and the Reference Activists Survey were used for data collection, respecting ethical considerations. Data analysis was conducted in NodeXL Pro software using the Clauset-Newman-Moore algorithm. The results identified 7 main groups in the network, revealing varied patterns of connection and cohesion. Groups 1 and 4 stood out; the former, composed of 17 activists from nine different entities, and the latter, notable for its high density of connections, both demonstrating significant internal cohesion through reciprocal citations, indicating a robust flow of information. The research also pointed to self-citation within certain entities, suggesting a concentrated flow of information and an expanded impact on the social capital of the activists. The results emphasize influential leadership in activism, group cohesion, and the centrality of entities. The studies achieved the thesis objectives, showing that caregivers of people with ASD are organized into groups and entities of society. Activism resulted in a network of relationships composed of 7 groups, characterized by female predominance, high density in some groups, and homophily due to participation in the same group. This network facilitated the flow of communication and social capital for caregivers and groups, enabling the execution of activism.