Person: Obach, Alexandra
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Obach
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Alexandra
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Alexandra Obach
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Publication El rol de nuevas organizaciones de la sociedad civil en la promoción de salud sexual en Chile(2023) Obach, Alexandra; Sadle, Michelle; Roberts, Antonia; Marín, MatíasEl artículo que da cuenta de los resultados de dos investigaciones cualitativas ejecutadas entre 2020 y 2022, tiene como propósito, desde un enfoque de salud global, salud colectiva y vulnerabilidad estructural, reflexionar en torno al rol que juegan nuevos actores de la sociedad civil en la promoción de la salud sexual, de derechos sexuales y en la prevención y detección del VIH en Chile. Estos actores son organizaciones de la sociedad civil conformadas por jóvenes profesionales de la salud que han construido espacios de información, promoción y atención en salud sexual y reproductiva fuera del sistema formal de salud; y organizaciones lideradas por jóvenes LGBTIQA+ en torno a información en sexualidades en general, y a acceso a prevención y detección del VIH en particular. El artículo contribuye en mostrar la importancia que tienen estos nuevos actores en las trayectorias terapéuticas en materia de salud sexual de jóvenes en Chile, y la relevancia aún mayor que han adquirido desde el inicio de la pandemia de Covid-19 The article which gives an account of the results of two qualitative investigations carried out between 2020 and 2022, has the purpose, from a global health, collective health and structural vulnerability approach, to reflect on the role played by new civil society actors in the promotion of sexual health, sexual rights and in the prevention and detection of HIV in Chile. These actors are civil society organizations led by young health professionals who have built spaces for information, promotion, and care in sexual and reproductive health outside the formal health system; and organizations led by LGBTIQA+ youth around information on sexualities in general, and access to HIV prevention and detection in particular. The article contributes to show the importance that these new civil society actors have in therapeutic trajectories in the field of sexual health of young people in Chile, and the even greater relevance that they have acquired since the beginning of the Covid-19 pandemic.Publication Therapeutic trajectories of families with rare diseases in Chile from the perspectives of patients, carers, and healthcare workers: a qualitative study(2025) Cabieses, Báltica; Obach, Alexandra; Roberts, Antonia; Repetto, GabrielaBackground Rare diseases are conditions that have a low prevalence in the population and a high disease burden and are often chronic and progressive. International evidence concerning the experience of people and families living with rare diseases is scarce, leading to late and erroneous diagnoses, as well as non-specific treatments. This study explored the therapeutic trajectories of people and families living with rare diseases within Chile’s public and private healthcare systems from the perspective of patients, caregivers, and medical teams, including the initial symptoms, first consultation, testing, diagnosis, treatment, and follow-up. Methods A qualitative exploratory study was conducted through multiple case studies. Sixty participants were interviewed in person and/or virtually: patients (n = 16), caregivers (n = 22), healthcare workers (n = 20), and two patient organisation leaders. The material was analysed using thematic analysis. The project was approved by the Scientific Ethics Committee of Facultad de Medicina Clínica Alemana, Universidad del Desarrollo. Results After similar initial symptoms and first consultation, three main types of trajectories were identified: (i) the path taken by those who reach a diagnosis for a disease that has specific treatment available; (ii) the journey of those who reach a diagnosis for their health condition, but their disease does not have a specific treatment available; and (iii) the trajectory of those who have not reached a diagnosis and receive symptomatic treatments for symptoms. Conclusions The therapeutic trajectories of patients with rare symptoms are similar in terms of initial symptoms and first consultation. However, their paths diverge at the diagnostic stage, with diverse experiences related to these journeys, largely based on having a diagnosis and whether there is a specific treatment. Rare conditions in Chile requires further attention and urgent action that considers those who live with them and their families.Publication Exploring the characteristics of cancer-centred civil society organisations in Chile: A qualitative study(2025) Roberts, Antonia; Vezzani, Francisca; Cabieses, Báltica; Obach, Alexandra; Campaña, Carla; Espinoza, ManuelBackground: In Chile, civil society organisations in health have been historically active in population health and specifically in cancer; they have had an important role in addressing patients' and families' necessities. Although they occupy a central role, there is no clarity about who they are, how they are organised, the goals that guide their performance and how they materialize social participation in health. Based on that, this study aimed to explore the characteristics of civil society organisations that work in cancer in Chile and to identify the networks they build with other actors to achieve their goals. Materials and methods: Qualitative case study using semi-structured online interviews with organisation representatives, politicians, decision-makers and academics related to cancer in Chile. Content analysis was performed, admitting emerging categories from the participants' narratives. Results: Three main profiles of organisations were identified: (i) Long-established organisations focused on influencing public policy and decision-making in cancer, (ii) Growing organisations focused on informing and supporting families and patients, (iii) Newly established organisations focused on patient well-being, such as sports activities. Relationships between groups and other actors involve perceived benefits like the growth of the organisations and funding for activities. However, perceived barriers and inequities are also identified, mainly lack of financial resources, competition between organisations and insufficient information. Discussion: The objectives of civil society organisations in cancer are diverse and reflect multiple ways of practising social participation in health. Tensions generate unequal participation and missed opportunities to promote public health in cancer in Chile. The study highlights the importance of recognising cancer social organisations as essential actors in public health. It is crucial to involve them in formulating and implementing comprehensive responses to maximise the opportunities for progress in this field.