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      The illness of women and men with sickle cell disease: a Grounded Theory study1

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          Abstract

          Objective:

          to understand the meanings given by women and men with sickle cell disease on the illness experience.

          Method:

          analytical study with a qualitative approach, conducted with 17 adults with sickle cell disease using the Theory Based on Data, or Grounded Theory, as theoretical-methodological referential. Data were collected between the years of 2012 and 2013, in an individual in-depth interview. All the interviews were recorded and analyzed according to the Grounded Theory comparative analysis technique.

          Results:

          data show four categories which group the experience of illness, the feelings experienced and the path to living with sickle cell disease.

          Conclusions:

          it was possible to understand that the experience was built by a process in which these people redefined the meaning of their lives, applying new directions to life and to care regarding the experience of the illness. In the context of chronic disease, the nurse's care is also seen in this study as a foundation, providing attention, directions, and guidance through the required confrontations. Understanding the experience lived by these people, it is possible to enlarge the dimensions and the essence of nursing care required throughout life.

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          Most cited references30

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          Perceived discrimination, patient trust, and adherence to medical recommendations among persons with sickle cell disease.

          Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known.
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            Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease.

            Perceived discriminatory experiences in society have been associated with a higher burden of pain among some minority patient populations.
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              The impact of gender roles on health.

              The present research focused on a sample of Spanish undergraduate women and men to evaluate whether gender was related to substance use and chronic illness. This research examined the associations of conformity to masculine norms for men and conformity to feminine norms for women with substance use in chronic illnesses. Spanish male (n = 226) and female (n = 234) college undergraduates completed measures of chronic diseases, alcohol and tobacco consumption, and conformity to gender norms. Multivariable regression analyses demonstrated that being female was related to lower alcohol and cigarette consumption but a greater rate of chronic illnesses. Although masculinity did not explain the rate of chronic illnesses, specific feminine and masculine gender norms were related to alcohol and tobacco use and prevalence of chronic diseases. The present study provides insights for further cross-cultural psychological studies on the mediating effect of self-reported conformity to gender norms (rather than only sex) on health. Limitations and implications are discussed.
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                Author and article information

                Journal
                Rev Lat Am Enfermagem
                Rev Lat Am Enfermagem
                rlae
                Revista Latino-Americana de Enfermagem
                Escola de Enfermagem de Ribeirão Preto / Universidade de São Paulo
                0104-1169
                1518-8345
                Nov-Dec 2015
                : 23
                : 6
                : 1113-1120
                Affiliations
                [2 ]PhD, Adjunct Professor, Escola de Enfermagem, Universidade Federal do Recôncavo da Bahia, Santo Antônio de Jesus, BA, Brazil. Scholarship holder from Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), Brazil
                [3 ]PhD, Adjunct Professor, Escola de Enfermagem, Universidade Federal da Bahia, Salvador, BA, Brazil
                [4 ]Master's student, Escola de Enfermagem, Universidade Federal da Bahia, Salvador, BA, Brazil. Scholarship holder from Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES), Brazil
                Author notes
                Corresponding Author: Ane Caroline da Cruz Santos Universidade Federal da Bahia. Escola de Enfermagem Av. Dr. Augusto Viana, S/N Bairro: Canela CEP: 40110-060, Salvador, BA, Brasil E-mail: anecaroline_ef@ 123456hotmail.com
                Article
                10.1590/0104-1169.0594.2656
                4664012
                26626003
                230958d1-2d31-4854-adca-ec9c8cf93f14

                This is an open-access article distributed under the terms of the Creative Commons Attribution License

                History
                : 03 December 2014
                : 17 May 2015
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 16, Pages: 8
                Categories
                Original Articles

                chronic disease,anemia, sickle cell,nursing
                chronic disease, anemia, sickle cell, nursing

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