Ciência_Iscte
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Descrição Detalhada da Publicação
Learning to Live with a Chronic Rheumatic Disease
Título Livro
People Being Patients: International, Interdisciplinary Perspectives
Ano (publicação definitiva)
2014
Língua
Inglês
País
Portugal
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Abstract/Resumo
(Nota: o livro tem data de publicação de 2013 mas só foi efectivamente publicado em 2014)
...
A chronic illness can be viewed as a challenge to the patient, demanding new
learning and adaptation to different habits and ways of living. A rheumatic disease,
at any stage, always affects the person at a psychological, social, spiritual and
emotional level. The way a patient reacts to a chronic illness varies and may
depend on his emotional condition. With the progressive development of a
rheumatic disease there arise increasingly severe limitations affecting the patient’s
life. Consequently, the hope for a better condition often fades away in time, giving
way to despair. At a certain moment, patients, family members and even
caregivers, are confronted with the impossibility of healing. Sometimes is even
very difficult to find a good way to relieve suffering or provide better health
conditions to the patients. It is vital to help patients to accept their situation and to
adapt to the limitations and disabilities derived from a rheumatic disease,
encouraging their autonomy, emotional balance and self-care. If they feel confident
in treatments and health care, they are more motivated to finding new objectives in
their lives, knowing is always possible to improve in some aspect. Here we aim to
understand the perceptions of patients with a rheumatic disease of their own illness
and perspectives in life. We developed a focus-group with eleven patients to
address several topics, such as their expectations on the future, the way they
adapted to a chronic disease and what they would like to change in their lives. The
participants revealed that they are frequently aware of the need to make changes in
their lives, adapting to the life events in which they are involved, and discovering
their rights and duties in each circumstance. In general, despite their illness, doubts
and fears, they do not wish to be a burden to anyone. So, they show some
confidence in the future, discovering their capacities to deal with their health
problems.
Agradecimentos/Acknowledgements
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Palavras-chave
Chronic illness, rheumatic disease, patient, disability, pain, suffering, health professionals, caregivers, nursing
English