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Vol. 24 - Num. 94

Original Papers

Impact of sickle cell disease on the families of affected patients. Qualitative study of their experiences, perceptions and needs

Ana Bernat Nogueraa, Ainhoa Iscar Ortsb, Ana Mascaró Garcíac, Xènia Chela Álvarezd, Trinidad Planas Juane

aPediatra. CS Son Gotleu. Palma . Islas Baleares. España.
bEnfermera. CS Son Gotleu. Palma. Islas Baleares. España.
cMediadora cultural. CS Son Gotleu y Escuela Graduada. Palma. Islas Balerares. España.
dSocióloga. Unidad de Investigación de Atención Primaria de Mallorca. Palma. Islas Baleares. España.
eEnfermera. CS Son Gotleu. Palma de Mallorca. España.

Correspondence: A Bernat. E-mail: ana.bernat@ibsalut.es

Reference of this article: Bernat Noguera A, Iscar Orts A, Mascaró García A, Chela Álvarez X, Planas Juan T. Impact of sickle cell disease on the families of affected patients. Qualitative study of their experiences, perceptions and needs. Rev Pediatr Aten Primaria. 2022;24:e207-e215.

Published in Internet: 20-06-2022 - Visits: 448

Abstract

Introduction: sickle cell disease is a genetic disease that mainly affects the population of African ancestry. It requires repeated and protracted hospitalizations thereby impairing quality of life. The impact of the disease in life is worse in socially vulnerable individuals. This study aimed to establish the concerns, beliefs and needs of the families of children and adolescents affected by sickle cell disease, their knowledge of sickle cell disease, the psychosocial impact of the disease, the satisfaction with health care services and the potential stigma surrounding the disease.

Material and methods: qualitative study through interviews with relatives of affected individuals.

Results: we conducted 20 interviews. We explored how families dealt with the disease; the social and family environment; concerns, emotions, and coping strategies; which resources were wanted versus not, and the satisfaction with the care received. The most salient results of the analysis were the impact of the diagnosis, the good level of knowledge about the symptoms and treatment and differences in the knowledge about the causes of the disease. The caregiver role was associated with female sex. Organizing family life and work was a frequent source of stress. We identified concerns about the disease and everyday life, negative and positive emotions and feelings and different coping strategies. Participants expressed the resources they wished for, such as aid for the sick child. They expressed a positive perception of the care received.

Conclusions: in-depth interviews with families of affected individuals help improve our understanding of their experiences and needs, and therefore also improve the care provided to paediatric patients with sickle cell disease.

Keywords

Quality of life Sickle cell disease

 

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