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Treating the Disease and Meeting the Person with the Illness - Patient Perspectives of Needs During Infective Endocarditis – A Qualitative Study Passed

Tuesday May 14, 2024 15:44 - 16:30 Poster Arena

Presenter: Helena Lindberg

Track: Posters, Living with health, illness, suffering

Poster can be found in location 40.

Background: Infective endocarditis (IE) is a rare but severe infectious disease. Patients with IE are treated for weeks in the hospital and have profund impairments on health. New treatment modalities increase the options for outpatient care. Little is known of how patients perceive their health on hospitalization. We aimed to explore the needs of patients with IE during hospitalization and the first months after discharge. Methods: In this qualitative study, 20 patients (45-86 years of age) hospitalized due to IE in Swedish hospitals were interviewed at a median of 112 (67-221) days after hospitalization. Data were analysed with qualitative content analysis identifying eight subcategories, two categories and an overall theme. Results:  The overall theme illuminated a spectrum of needs between treating the disease and meeting the person with the illness. The categories expressed: 1) the need for medical excellence explored by the needs for diagnosis and attention to complications; treatment and follow-up; soon home-coming; and reliable healthcare. Patients with IE needed care in specialized units, longed to go home and feared shortcomings of healthcare. Symptoms of fatigue, wasting, cognitive and mental distress were often neglected. 2) The need for person-centred care were explored by the needs for knowledge; reorientation; health restoration and to be seen as unique. Personalized information led to knowledge of the disease and started reorientation towards recovery. Conclusions:  This explorative study shows the needs in a spectrum between medical excellence and person-centred care. Care in specialized units secure the quality, early discharge is requested, and the outpatient care needs to develop with preserved safety, medical excellence and person-centred care. The disease trajectory after discharge show slow progress and the possibility of impinging this is still unclear. Identification of delayed recovery and rehabilitation are important fields for future studies.  

Language

English

Seminar type

Poster

Conference

GCPCC

Authors

Helena Lindberg, Johan Vaktnäs, Magnus Rasmussen, Ingrid Larsson

Lecturers

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Helena Lindberg Presenter

PhD student, Senior Consultant Infectious Diseases
Lund University

The work with infectious diseases since 1998 led me lately to special studies on infective endocarditis, i.e. heart valve infections, and I have now passed the half-time exam.
The curiosity on the experiences of my patients introduced me to the field of person-centred care.
On this conference I present a poster on the subject "Treating the disease and meeting the person with the illness - patient perspectives of needs during infective endocarditis". Welcome!