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    Exploring the feasibility and effectiveness of a naturalistic family centered intervention to enhance early interactions in toddlers with Down syndrome
    (Springer Science and Business Media LLC, 2025-04-09)
    Ana Mendoza-García
    ;
    Andrés Aparicio
    ;
    Paulina Sofía Arango
    ;
    TENORIO DELGADO, MARCELA  
    This study analyses the feasibility and effectiveness of BabyMICARE, a manualised intervention programme aimed at improving the interactions between caregivers and infants and toddlers with Down syndrome. The programme’s goal is to enhance caregivers’ sensitivity and reduce directivity during early interactions, particularly during play and daily routines. A pre-test and post-test design was used with 40 dyads of infants with Down syndrome and their caregivers, who were divided into a control group (n = 20) and an intervention group (n = 20), based on baseline scores in key interaction subscales. Sessions were conducted over 10 weeks by trained psychologists. Parent-infant interaction was assessed using the MACI coding system, which measures aspects such as sensitive responsiveness, directivity and the level of reciprocity between the parent and the child. The programme showed high feasibility, with a 100% attendance rate but some rescheduling. Caregivers evaluated it positively. The intervention group demonstrated significant improvements in five of eight MACI scales, particularly in sensitive responsiveness and nondirectiveness, while no changes were observed in the control group. The results suggest that BabyMICARE is a feasible and effective intervention for promoting more responsive, less directive interactions, which may be crucial in fostering children’s development.
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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
    ;
    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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    Patient and Carer Experiences with Bladder Cancer: Results from a Global Survey in 45 Countries
    (2023)
    Lydia E. Makaroff
    ;
    Alex Filicevas
    ;
    Shannon Boldon
    ;
    Patrick Hensley
    ;
    Peter C. Black
      7Scopus© Citations 8
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    Impact of Social Isolation on People with Dementia and Their Family Caregivers
    (2021)
    Lílian Viana dos Santos Azevedo
    ;
    Ismael Luis Calandri
    ;
    SLACHEVSKY CHONCHOL, ANDREA MARÍA  
    ;
    Héctor Gastón Graviotto
    ;
    Maria Carolina Santos Vieira
    <jats:p>Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries.</jats:p>
    Scopus© Citations 56  10
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    Scopus© Citations 2  1
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      10  1Scopus© Citations 55
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    Predictors of unmet needs in Chilean older people with dementia: a cross-sectional study
    (2019)
    Thamara Tapia Muñoz
    ;
    Andrea Slachevsky
    ;
    María O. León-Campos
    ;
    Michel Madrid
    ;
    Alejandra Caqueo-Urízar
    Scopus© Citations 29  2