Vivências de pessoas com hipertensão pulmonar no Brasil: afetos, desafios e potencialidades

Abstract

The objective of this study was to understand the lived experiences of people with Pulmonary Arterial Hypertension (PAH), identifying the suffering resulting from social injustices and analyzing, from a psychosocial and socio-historical perspective, the factors of potentiation and depotentiation involved in their processes of social exclusion and inclusion, as well as proposing guiding axes for public health policies. In the Brazilian context, rare diseases affect approximately 65 per 100,000 people, including chronic and disabling conditions associated with non-apparent bodily disabilities. These conditions impact mobility, work capacity, and quality of life, contributing to processes of social invisibility and inequality. The research is grounded in Brazilian and Latin American Social Psychology from a psychosocial and socio-historical perspective, drawing on concepts such as lived experience (perejivanie), affects, ethical-political suffering, social exclusion/inclusion, and power to act as expressed in the narratives. This is a documentary, descriptive, and qualitative study, conducted through thematic content analysis of 53 public patient testimonies available on the website of a national association, complemented by a reflexive autoethnographic resource. The units of analysis were sentences and paragraphs with complete meaning, considering the full testimony as the unit of context. The results revealed experiences marked by early restrictions, loss of autonomy, difficulties in accessing health care, work, and social protection, as well as physical, emotional, social, and systemic suffering, often aggravated by failures in public policies. At the same time, potentiating affects such as hope, gratitude, and family support emerged, sustaining strategies for the continuity of life. The analyses were organized into the categories Experiences, Affects, Challenges, and Potentials, inductively constructed from the empirical material and theoretical framework, enabling a socially situated understanding of the meanings produced around living with PAH and supporting the proposal of public policies aimed at accessibility, care, and social inclusion.