Everyday Impact of Having a Rare Diagnosis. A Questionnaire Study

Aim: To study the physical, psychosocial, emotional and financial impact of having a rare diagnosis. Background: A whole spectrum of problems were known in the member groups of Rare diseases Sweden such as lack of care and treatment, negative encounters and long waiting time to get the diagnosis. Me...

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Bibliographic Details
Published in:Nordic journal of nursing research 2009, Vol.29 (3), p.13-17
Main Authors: Wallenius, Elisabeth, Möller, Kerstin, Berglund, Britta
Format: Article
Language:English
Subjects:
Community medicine
Diagnosis
Disability Research
Evaluation
Folkhälsomedicinska forskningsområden
handikappvetenskap
MEDICIN
MEDICINE
Periodic health examinations
Physical diagnosis
Public health medicine research areas
Quality of life
rare diagnosis
Rare diseases
Samhällsmedicin
Social medicine
Socialmedicin
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Summary:Aim: To study the physical, psychosocial, emotional and financial impact of having a rare diagnosis. Background: A whole spectrum of problems were known in the member groups of Rare diseases Sweden such as lack of care and treatment, negative encounters and long waiting time to get the diagnosis. Methods: A specific questionnaire was mailed to members of the association (n=2983). Findings: The results are presented under the categories ‘contacts with health care and society,’ ‘consequences of getting the wrong diagnosis, ‘family experiences in daily life’, ‘extra expenses related to the rare diagnosis and ‘positive effects of having a rare diagnosis.’ The result shows that these groups are risking to be treated arbitrarily when needing service from the society. When comparing reimbursement and need of time for personal care, some respondents reported high need of personal time but low reimbursement as well as the opposite. Conclusion: In summary, having a rare diagnosis is very apparent for the individual in all situations in life. The individual's ability to achieve his/her social rights is often more conclusive than the disability itself.
ISSN:0107-4083
2057-1585
1890-4238
2057-1593
DOI:10.1177/010740830902900304