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

Manejo familiar de niños que experimentanenfermedad decélulas falciformes: um estúdio cualitativo

ABSTRACT

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.

Descriptors:
Family; Child; Anemia Sickle Cell; Pediatric Nursing; Primary Health Care

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