O presente estudo, de natureza descritivo-exploratória, pretendeu contribuir para a compreensão da experiência psicológica da doença crónica complexa na fratria em idade escolar. A amostra foi constituída por sete famílias de crianças em cuidados paliativos, tendo seis mães e uma avó preenchido um questionário sócio demográfico. Foram entrevistados nove irmãos saudáveis, com idades entre os 6 e os 9 anos, através de uma história infantil ilustrada e da elaboração de uma narrativa baseada no seu desenho sobre a fratria. Os resultados da análise qualitativa evidenciam oito categorias principais: compreensão da doença, representação do irmão doente, impacto emocional, ocupação de tempos livres e responsabilidades, perspetivas sobre o futuro, relação fraterna, dinâmicas familiares e fratria imaginária. A reduzida dimensão da amostra e a diversidade de doenças constituem limitações deste estudo. Retiram-se implicações para a intervenção psicológica na fratria, sugerindo-se investigações futuras que explorem a rivalidade fraterna e outras faixas etárias.
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive–exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive–deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children’s needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety’ management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father’s experience.
During the state of global emergency of the COVID-19 pandemic, online cultural events have multiplied and gained space in our lives. However, this relationship between contemporary art and digital media has been developing for decades. In this paper, the authors cover the curatorial and preparation process for the virtual pavilion The Destinies of Senses that was part of the 4th edition of the digital art biennial The Wrong, which took place from November 2019 to March 2020, bringing to discussion the curation of online exhibitions, aesthetics post-digital, and the creation process of these artists. The authors approach in more detail one of the projects that integrated the exhibition and that combines fashion production, print media, and digital art.
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