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Enfermería Nefrológica

versão On-line ISSN 2255-3517versão impressa ISSN 2254-2884

Resumo

LUQUE LLAOSA, Marta Beatriz; FUENMAYOR DIAZ, Amaranta; MATAMALA GASTON, Anna  e  FRANQUET BARNILS, Esther. Perceptions in the daily life of the patient with autosomal dominant polycystic kidney disease. Enferm Nefrol [online]. 2017, vol.20, n.4, pp.342-351. ISSN 2255-3517.  http://dx.doi.org/10.4321/s2254-28842017000400008.

Introduction:

Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common hereditary kidney disease. It is the third cause of end-stage chronic kidney disease (ESRD) in adulthood.

Objective:

To know and understand the life experience of people with ADPKD and the repercussions felt in all areas of their daily life, from a bio-psycho-social and spiritual perspective, to offer quality nursing care.

Material and Method:

Qualitative study based on the methodological paradigm of the Grounded Theory of Glaser and Strauss and on the constructivist paradigm.

The participants were people diagnosed with ADPKD, who were in phases prior to the initiation of renal replacement therapy. The size of the sample was given by the saturation of the data and it was of 12 participants who were part of two focus groups. The conversations were recorded in audio and transcribed for the later analysis of their content.

Technique:

Focus Group. Two groups were carried out, of an average of two hours, with the presence of a moderator and two observers.

Results:

Five major conceptual categories emerged: experience / coping mechanisms, repercussions of the hereditary factor, physical symptoms and quality of life, future prospects and expectations of the healthcare environment.

Conclusions:

The life experience of people with ADPKD does not present a single thought, but there are points of dissent in various aspects that make each experience unique and individual. A multidisciplinary care is crucial from the moment of the diagnosis, in which nursing is one of the fundamental pillars in the accompaniment, listening and orientation of people with ADPKD and their families, from their autonomous and collaborative role.

Palavras-chave : polycystic kidney disease; hereditary disease; qualitative research; grounded theory; quality of life; coping.

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