CARING FOR THE PERSON WITH RARE DISEASE. INTEGRATIVE REVIEW
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Abstract
Objective: To know the current state of development of the thematic area of the caregiver of people with rare diseases and to determine the trends and challenges for nursing research. Methods: Descriptive integrated review, in which a search was carried out in Ovid, Oxford University Press, Sage, Science Direct databases, limited between the years 2009 - 2020, using MeSH and DeCS terms such as rare diseases, family caregiving, care, caregivers, likewise, crossbreeding with some specific diseases was sought (Duchenne syndrome, Lysosomal Storage disease, Genetic disorders, MECP2 duplication syndrome). Results: Three themes emerge from the data tabulation: Emotional responses that refer to how caregivers can experience various emotions. The need for clear and complete professional information: the authors report needing clear information about the disease and the last topic called strategies to face the situation of caring as that circumstance in which caregivers, especially of children, generate strategies to face the care of people with rare diseases. Conclusions: Research shows how caregivers of people with a rare disease face great multidimensional challenges, with few studies specifically describing how the main caregiver cares. Therefore, initiating research into the phenomenon will allow Nursing to build, from professional fields, its progress and increase, in the future, the guarantee of excellence in the care of people with a rare disease that limits mobility, thus achieving becomes evident in interdisciplinary teams.
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