Facing ignorance: people with rare disorders and their experiences with public health and welfare services
This qualitative study shows that people with rare disorders may experience barriers that can be related to the fact that the disorder is labelled ‘rare’ when they access health and welfare services. Service-providers within a range of sectors and services seemed to be reluctant to get involved in s...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
| Published: |
Stockholm University Press
2012-02-01
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| Series: | Scandinavian Journal of Disability Research |
| Subjects: | |
| Online Access: | https://www.sjdr.se/articles/447 |
| _version_ | 1797710093558480896 |
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| author | Lisbet Grut Marit H. Kvam |
| author_facet | Lisbet Grut Marit H. Kvam |
| author_sort | Lisbet Grut |
| collection | DOAJ |
| description | This qualitative study shows that people with rare disorders may experience barriers that can be related to the fact that the disorder is labelled ‘rare’ when they access health and welfare services. Service-providers within a range of sectors and services seemed to be reluctant to get involved in situations that imply diagnoses that are unknown to them. Further, they seemed to be reluctant to accept information offered to them by the user and they hesitated to seek up information by themselves. If the professionals got involved they tended to base their judgements on their personal assumptions, consequently followed by incorrect actions. The service-providers' negative responses represent a significant barrier for accessing adequate services and assistance for people with rare disorders. These experiences cut across the various disorders in the study and they cut across the various services. |
| first_indexed | 2024-03-12T06:47:12Z |
| format | Article |
| id | doaj.art-62e1bb332a74471d896256874f0afb3b |
| institution | Directory Open Access Journal |
| issn | 1501-7419 1745-3011 |
| language | English |
| last_indexed | 2024-03-12T06:47:12Z |
| publishDate | 2012-02-01 |
| publisher | Stockholm University Press |
| record_format | Article |
| series | Scandinavian Journal of Disability Research |
| spelling | doaj.art-62e1bb332a74471d896256874f0afb3b2023-09-03T00:30:10ZengStockholm University PressScandinavian Journal of Disability Research1501-74191745-30112012-02-01151203210.1080/15017419.2011.645870376Facing ignorance: people with rare disorders and their experiences with public health and welfare servicesLisbet Grut0Marit H. Kvam1Department of Health Research, SINTEF Technology and Society, Blindern, Oslo, NorwayDepartment of Health Research, SINTEF Technology and Society, Blindern, Oslo, NorwayThis qualitative study shows that people with rare disorders may experience barriers that can be related to the fact that the disorder is labelled ‘rare’ when they access health and welfare services. Service-providers within a range of sectors and services seemed to be reluctant to get involved in situations that imply diagnoses that are unknown to them. Further, they seemed to be reluctant to accept information offered to them by the user and they hesitated to seek up information by themselves. If the professionals got involved they tended to base their judgements on their personal assumptions, consequently followed by incorrect actions. The service-providers' negative responses represent a significant barrier for accessing adequate services and assistance for people with rare disorders. These experiences cut across the various disorders in the study and they cut across the various services.https://www.sjdr.se/articles/447rare disordersdisabilityhealth and welfare services |
| spellingShingle | Lisbet Grut Marit H. Kvam Facing ignorance: people with rare disorders and their experiences with public health and welfare services Scandinavian Journal of Disability Research rare disorders disability health and welfare services |
| title | Facing ignorance: people with rare disorders and their experiences with public health and welfare services |
| title_full | Facing ignorance: people with rare disorders and their experiences with public health and welfare services |
| title_fullStr | Facing ignorance: people with rare disorders and their experiences with public health and welfare services |
| title_full_unstemmed | Facing ignorance: people with rare disorders and their experiences with public health and welfare services |
| title_short | Facing ignorance: people with rare disorders and their experiences with public health and welfare services |
| title_sort | facing ignorance people with rare disorders and their experiences with public health and welfare services |
| topic | rare disorders disability health and welfare services |
| url | https://www.sjdr.se/articles/447 |
| work_keys_str_mv | AT lisbetgrut facingignorancepeoplewithraredisordersandtheirexperienceswithpublichealthandwelfareservices AT marithkvam facingignorancepeoplewithraredisordersandtheirexperienceswithpublichealthandwelfareservices |