The sickle cell illness experience under the qualitative lens

Lopes, Winnie Samanú Lima; Moreira, Martha Cristina Nunes; Gomes, Romeu

doi:10.1590/1413-81232023289.03812023

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ARTICLE • Ciênc. saúde coletiva 28 (09) • Sept 2023 • https://doi.org/10.1590/1413-81232023289.03812023EN linkcopy

The sickle cell illness experience under the qualitative lens

Authorship SCIMAGO INSTITUTIONS RANKINGS

This article aims to analyze the content of the qualitative production (2000-2023) on sickle cell disease to support the analytical category - the sickle cell disease experience. Methodologically, we conducted a qualitative, bibliographical study with a thematic content analysis anchored in the dialogue between the revised collection and the adopted theoretical-conceptual references. The thematic content analysis triggered eight interpretative dimensions: daily life and itineraries, care, reproductive decisions, stigma and its expressions, gender, participation, ethnicity, and religiosity. The sickle cell experience emerges and is related to exclusion, devaluation, ignorance, and invisibility, strongly allied to race components in nuances that distance it from the generic illness experience.

Key words:
Sickle cell disease; Experience; Chronic disease; Qualitative research; Bibliographic study

Category	References		Source
Daily life and therapeutic itineraries	Batista et al., 2011²²		BVS
	Cordeiro et al., 2013²³		BVS
	Forrester et al.,2015²⁴		BVS
	Foster and Ellis, 2018²⁵		BVS
	Freire et al., 2015²⁶		BVS
	Martins et al., 2019²⁷		BVS
	Ola et al., 2016²⁸		BVS
	Petri et al., 2020²⁹		BVS
	Roman et al., 2019³⁰		BVS
	Silva et al., 2013³¹		BVS
	Souza et al., 2011³²		BVS
	Weis et al., 2013³³		BVS
Care	Self-care	Tavares et al., 2017³⁴	BVS
		Cordeiro et al., 2014³⁵	BVS
		Costa et al., 2018³⁶	BVS
		Lacerda et al., 2019³⁷	BVS
		Matthie et al., 2019³⁸	BVS
		Nascimento et al., 2021³⁹	BVS
	Maternal care	Ramos et al., 2020⁴⁰	BVS
		Rocha et al., 2021⁴¹	BVS
		Silva et al., 2021⁴²	BVS
	Family care	Bernal and Patten, 2010⁴³	BVS
		Figueiredo et al., 2018⁴⁴	BVS
		Gesteira et al.,2020⁴⁵	BVS
		Graff et al., 2010⁴⁶	BVS
		Miranda et al., 2020⁴⁷	BVS
		Olwit et al., 2018⁴⁸	BVS
		Silva et al., 2013⁴⁹	BVS
	Health Professionals	Campelo et al., 2018⁵⁰	BVS
		Del Pino-Jones et al., 2019⁵¹	BVS
		Ferreira et al., 2013⁵²	BVS
		Pimentel et al., 2021⁵³	BVS
		Rodrigues et al., 2010⁵⁴	BVS
		Soares et al., 2014⁵⁵	BVS
	Care and Technology	Calvo-Gonzalez, 2016⁵⁶	ARCA
	Care and Technology	Hawkins et al., 2020⁵⁷	BVS
Reproductive decisions	Guimarães and Coelho, 2010⁵⁸		BVS
	Cox and Beauquier-Maccotta, 2014⁵⁹		BVS
	Guedes, 2012⁶⁰		BVS
	Pedrosa et al., 2021⁶¹		BVS
	Silva et al., 2021⁶²		BVS
Stigma and its expressions	Brito et al., 2021⁶³		BVS
	Carvalho et al., 2021⁶⁴		BVS
	Santos et al., 2022⁶⁵		BVS
	Sinha et al., 2019⁶⁶		BVS
Gender	Berghs et al., 2020⁶⁷		BVS
	Cordeiro and Ferreira, 2011⁶⁸		BVS
	Cordeiro et al., 2015⁶⁹		BVS
	Silva et al., 2018⁷⁰		BVS
	Sousa et al., 2021⁷¹		BVS
Participation	Bakshi et al., 2020⁷²		BVS
	Chakravorty et al., 2018⁷³		BVS
	Cho et al., 2020⁷⁴		BVS
	Jabour et al., 2019⁷⁵		BVS
	Lopes and Gomes, 2020²¹		ARCA
	Young et al., 2009⁷⁶		BVS
Ethnicity	Figueiró and Ribeiro, 2017⁷⁷		BVS
	Maio and Monteiro, 2005⁷⁸		ARCA
	Ramos et al., 2020⁷⁹		ARCA
	Rizzo and Fonseca, 2019⁸⁰		ARCA
	Silva et al., 2020⁸¹		ARCA
Religiosity	Cotton et al., 2012⁸²		BVS
Religiosity	Gomes et al., 2019⁸³		BVS

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[TFN2] Source: Authors, 2023.