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 8 publications

(4 citation statements)

References 16 publications

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“…Life is dynamic, and other events will challenge the identity construction with biographical oscillations and flows. 15 , 35 , 36 Hence, medical encounters will always be a relationship challenge. Bias in the choice of the families is possible, but care was taken to choose objectively (upon the advice of healthcare professionals implicated in the care of the children, all unknown to the main researcher).…”

Section: Discussionmentioning

confidence: 99%

“…Several authors discuss the experience of a chronic illness as a biographical disruption or rupture. 14 , 15 Then, biographical work is done to construct the resolution of suffering associated with the presence of the illness in our life. 16 As we choose the aspects of self-realization and the realization of an existential project as our main theme of spirituality, we amalgamate the concepts of the search of meaning, identity and achievement of a life project into the construction of the concept of spiritual identity .…”

Section: Introductionmentioning

confidence: 99%

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Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity

Lafrenaye

Dumas

Gosselin

et al. 2021

Qual Res Med Healthc

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Parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. Our objective was to understand why those parents’ interactions with the medical world were so different, ranging from hostile to collaborative, with the themes of identity, spirituality and serenity. A grounded theory design based on the narrative identity framework was used to interview sixteen parents. Three categories emerged: i) Parents in the Almighty category delegate all their power to God or medicine and are the most suffering parents as they do not author their life; ii) Parents in the Me category make every decision on their own causing much anxiety, and they become rebarbative to the medical world; iii) Parents in the Guide category take advice from others, while remaining the authors of their stories and are the most serene parents. Understanding and recognizing these categories can have a major impact on communication with those families.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity

Lafrenaye

Dumas

Gosselin

et al. 2021

Qual Res Med Healthc

View full text Add to dashboard Cite

show abstract

“…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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“…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

Moreira

Nascimento

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

Cited by 8 publications

References 16 publications

Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity

Parents living with a child afflicted by a life-limiting medical condition: Typology of their narrative identity

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

Adoecimentos raros e o diálogo associativo: ressignificações para experiências morais

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