Introduction:

Sickle cell anemia (SCA) is a genetic hematological disease for which the only potentially curative treatment is Hematopoietic Stem Cell Transplantation (HSCT).

Objective:

To comprehend the meanings attributed to illness and treatment by adolescents with SCA undergoing HSCT.

Method:

An exploratory study with a qualitative approach. The convenience sample comprised eight adolescent patients. Semi-structured individual interviews were conducted, audio-recorded, and transcribed in full. Data were subjected to reflexive thematic analysis.

Results:

Three thematic categories were developed: Living with the illness (difficulties in dealing with the restrictions of SCA); Surviving the transplant (decision to undergo transplantation and difficulties experienced in the ward); and Living post-transplant (resumption of activities and improvement in quality of life).

Discussion:

The decision to undergo transplantation was guided by the expectation of a cure and/or the suspension of conventional treatments. The major challenges faced during the hospitalization period were related to the need for protective isolation in the ward, involving restrictions on social contact and discontinuation of school life. After the transplant, adolescents gradually resumed some of the interrupted activities and reclaimed plans for the future.

Conclusion:

Overall, the treatment was perceived as a positive experience, despite the risks and challenges faced along the way. In health intervention planning, the multidisciplinary healthcare team must consider stress-inducing events related to the moment of diagnosis, the transplantation decisionmaking process, limitations experienced in the ward, and social reintegration post-HSCT.

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