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    Scopus© Citations 1  1
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    Therapeutic trajectories of families with rare diseases in Chile from the perspectives of patients, carers, and healthcare workers: a qualitative study
    (Springer Science and Business Media LLC, 2025-02-25)
    CABIESES VALDES, BALTICA BEATRIZ  
    ;
    OBACH KING, ALEXANDRA ALICE  
    ;
    Antonia Roberts
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    REPETTO LISBOA, MARIA GABRIELA  
    Background 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.
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    Exploring contextual factors for management and prevention of running-related injuries: runners and experts’ perspectives
    (BMJ, 2025-04)
    BESOMI MOLINA, MANUELA  
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    Roa-alcaino Sonia
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    Ángela Lombardi
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    Rocío Vélez-Rivera
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    LEPPE ZAMORA, JAIME ESTEBAN  
    Running is one of the most accessible and popular physical activities worldwide; however, injuries are the main barrier to sustaining running practice. While quantitative studies have explored prevalence and risk factors, a critical gap exists in understanding subjective experiences, perceptions and contextual influences on injury management and prevention. This qualitative study aimed to explore the perspectives of runners and experts regarding injury perception, management and prevention, as well as the contextual influence of these processes. Using a secondary data analysis approach, this study drew from qualitative semistructured interviews with Chilean runners (n=15) and running experts (n=6). Thematic analysis, guided by an interpretivist approach, uncovered intrinsic factors (identity, motivation, stress and self-learning) and extrinsic factors (environment, information sources, marketing, peer advice, professional guidance, racing, stereotype and clothing) that shaped runners’ behaviours. Less experienced runners associated injury risk with asphalt surfaces, faced challenges in discerning online information reliability and found motivation in peer advice. Experts emphasised the multifactorial nature of running-related injuries, including previous injuries and training-related factors. Both groups acknowledged a global tendency among runners to resist rest when discomfort arose. This research contributed to a nuanced understanding of injury perception, management and prevention, bridging scientific knowledge with individual experiences. Clinicians may use this information to enhance the therapy alliance and set realistic expectations about the runner’s rehabilitation process.
      1Scopus© Citations 3
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    Exploring the characteristics of cancer-centred civil society organisations in Chile: A qualitative study
    (Public Library of Science (PLoS), 2025-05-16)
    Antonia Roberts
    ;
    Francisca Vezzani
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    CABIESES VALDES, BALTICA BEATRIZ  
    ;
    OBACH KING, ALEXANDRA ALICE  
    ;
    CAMPAÑA, CARLA  
    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.</jats:p> 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.
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    Your baby has down syndrome: a reflexive thematic analysis of breaking the news to parents
    (Springer Science and Business Media LLC, 2025-05-06)
    TENORIO DELGADO, MARCELA  
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    Johanna Sagner-Tapia
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    Renata Garibaldi
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    Vaso Totsika
    Scopus© Citations 1  6
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    Unravelling the potential relationship between the climate crisis and the health of migrant children in LAC: perceptions from migrant parents and healthcare professionals in Chile
    (BMJ, 2024-12)
    CARREÑO CALDERON, ALEJANDRA ANGELICA  
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    Alice Bluckaz
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    CABIESES VALDES, BALTICA BEATRIZ  
    <jats:sec><jats:title>Introduction</jats:title><jats:p>Latin America and the Caribbean (LAC) is one of the regions most affected by the climate crisis, which is connected to international migration through a complex nexus. During the last years, migratory flows on the continent have increasingly included children and adolescents who are migrating through non-authorised crossing points. The existing literature shows how inequities negatively affect migrant children and the role that healthcare systems can play to mitigate them.</jats:p></jats:sec><jats:sec><jats:title>Objective</jats:title><jats:p>Based on a qualitative study, the paper aims to analyse the role of the climate crisis on the healthcare needs of migrant children from LAC who are currently living in Chile, from the point of view of parents from five main countries of immigration in Chile and healthcare professionals.</jats:p></jats:sec><jats:sec><jats:title>Method</jats:title><jats:p>An exploratory study was conducted in Arica, Antofagasta and Santiago. In-depth interviews with 20 migrant parents and 20 healthcare professionals were carried out. The interviews were transcribed verbatim and a thematic analysis was performed.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Three findings emerged from this study: (1) food insecurity affects LAC migrant children in their country of origin and during their migratory trajectories to Chile, (2) natural disasters and environmental degradation in the countries of origin are not the only drivers of migration for LAC families but also prevent returns, even when they remain undocumented and (3) LAC migrant children are exposed to urban pollution and contaminants in informal settlements due to difficulties in accessing formal housing, among others.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>The climate crisis must be integrated into the study of migrant health in LAC, considering the current context of multiple political, health and economic crises in the region. Healthcare professionals and communities play a central role in creating interventions to build sustainable and resilient universal healthcare systems.</jats:p></jats:sec>
    Scopus© Citations 1  1
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