Rupturas e continuidades biográficas nas experiências e trajetórias familiares de crianças com fibrose cística

Castellanos, Marcelo Eduardo Pfeiffer; Barros, Nelson Filice de; Coelho, Sandra Straccialano

doi:10.1590/1413-81232018232.16252017

Cited by 7 publications

(2 citation statements)

References 16 publications

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“…The diagnosis is difficult to understand, generating indignation and frustration, because the idealized child throughout pregnancy is not the one they now have. This fact triggers a rupture in their life trajectories (11) .…”

Section: Discussionmentioning

confidence: 99%

Family management ofchildren who experience sickle cell disease: a qualitative study

et al. 2020

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Objective: to know the family management experience of children with sickle cell disease in the light of the Family Management Style Framework. Methods: a qualitative case study carried out between September/2015 and July/2016 with 12 members of eight families registered in a blood center in Minas Gerais. The semi-structured interviews were recorded, and the data were analyzed and interpreted by the hybrid model thematic analysis. Results: three management styles were identified: five families in the accommodating style; two families in the struggling style; and only one family in the enduring style.It was noted that empowerment was paramount in the acquisition of skills and abilities to care for these children. Final considerations: family management knowledge of children with sickle cell disease provided a reflection on nurses’ role in supporting, orienting and encouraging the empowerment of these families aiming at the search for comprehensive care.

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Section: Discussionmentioning

confidence: 99%

Family management ofchildren who experience sickle cell disease: a qualitative study

et al. 2020

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“…These same caregivers or people living with these rare and long-term illnesses may often be in a context of activism. This perspective of chronicity traverses and underpin our reflections on rare illnesses [20][21][22][23][24][25][26][27][28][29] , making us return in this dialogue to people's moral experience, and not to the disease object in its medicalized realm.…”

Section: Introductionmentioning

confidence: 99%

Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais

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Campos

et al. 2019

Ciênc. saúde coletiva

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Resumo Neste artigo, buscamos discutir a experiência de familiares de crianças e adolescentes com doenças raras como uma experiência moral. A experiência moral se caracteriza pelo sofrimento que é lido, coletivamente, como acontecimento catastrófico, mobilizando recursos para significação e sentido que possibilitem reconstruções identitárias, valoração de novas trajetórias a partir de um diagnóstico raro, assim como a busca de pares. Nesse sentido, é fundamental a construção de relações de reconhecimento, alteridade e pertencimento. A partir de uma perspectiva interacionista simbólica, os resultados mostram dois núcleos: (1) o susto como surpresa diante do diagnóstico inesperado, levando a busca de pares e promoção do reconhecimento social; (2) o custo envolvido com a trajetória de uma doença rara que implica um trabalho de care e a aquisição de capital associativo como possibilidade de fortalecimento e construção de capital social de cuidado à saúde.

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Imagined futures: Occupation as a means of repair following biographical disruption in the lives of refugees

Hart

2022

Journal of Occupational Science

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Rupturas e continuidades biográficas nas experiências e trajetórias familiares de crianças com fibrose cística

Cited by 7 publications

References 16 publications

Family management ofchildren who experience sickle cell disease: a qualitative study

Family management ofchildren who experience sickle cell disease: a qualitative study

Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais

Imagined futures: Occupation as a means of repair following biographical disruption in the lives of refugees

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