Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder
A specialist nurse for over 20 years, Sandra reflects on her experience of finding ways to deliver effective care for a young girl with a very rare clotting disorder. Symptoms of the girl’s disorder were evident from birth and through an emergency use request Sandra and the care team enabled her fam...
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| Format: | Article |
| Language: | English |
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Sciendo
2024-02-01
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| Series: | The Journal of Haemophilia Practice |
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| Online Access: | https://doi.org/10.2478/jhp-2024-0001 |
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| author | Hibner Sandra |
| author_facet | Hibner Sandra |
| author_sort | Hibner Sandra |
| collection | DOAJ |
| description | A specialist nurse for over 20 years, Sandra reflects on her experience of finding ways to deliver effective care for a young girl with a very rare clotting disorder. Symptoms of the girl’s disorder were evident from birth and through an emergency use request Sandra and the care team enabled her family to access a treatment that at the time was in clinical trial. Poor venous access meant there was a need to adapt how treatment was administered and she worked with the girl’s parents to ensure that she was treated effectively. Alongside educating the parents, Sandra highlights the importance of her role in educating co-workers and other hospital staff likely to come into contact with the girl, to ensure that she always had access to timely and appropriate care. She also reflects on other instances where thinking creatively enabled patients in her care access to treatments that may not otherwise have been accessible. Now retired, Sandra continues to be involved in advocacy for people with bleeding disorders. |
| format | Article |
| id | doaj-art-b972990cffc842d7a7929864f8eeacbb |
| institution | Kabale University |
| issn | 2055-3390 |
| language | English |
| publishDate | 2024-02-01 |
| publisher | Sciendo |
| record_format | Article |
| series | The Journal of Haemophilia Practice |
| spelling | doaj-art-b972990cffc842d7a7929864f8eeacbb2025-02-02T15:48:30ZengSciendoThe Journal of Haemophilia Practice2055-33902024-02-01111111310.2478/jhp-2024-0001Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorderHibner Sandra0Member of the Board of the Southwestern Ohio Hemophilia Foundation (SWOHF) and Family Annual Meeting of Hemophiliacs in Ohio (FAMOHIO), Dixie, AmericaA specialist nurse for over 20 years, Sandra reflects on her experience of finding ways to deliver effective care for a young girl with a very rare clotting disorder. Symptoms of the girl’s disorder were evident from birth and through an emergency use request Sandra and the care team enabled her family to access a treatment that at the time was in clinical trial. Poor venous access meant there was a need to adapt how treatment was administered and she worked with the girl’s parents to ensure that she was treated effectively. Alongside educating the parents, Sandra highlights the importance of her role in educating co-workers and other hospital staff likely to come into contact with the girl, to ensure that she always had access to timely and appropriate care. She also reflects on other instances where thinking creatively enabled patients in her care access to treatments that may not otherwise have been accessible. Now retired, Sandra continues to be involved in advocacy for people with bleeding disorders.https://doi.org/10.2478/jhp-2024-0001inherited blood coagulation disordersthrombophiliapurpura fulminanstherapeutic relationshipnursesprofessional practice |
| spellingShingle | Hibner Sandra Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder The Journal of Haemophilia Practice inherited blood coagulation disorders thrombophilia purpura fulminans therapeutic relationship nurses professional practice |
| title | Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder |
| title_full | Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder |
| title_fullStr | Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder |
| title_full_unstemmed | Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder |
| title_short | Living, Caring, Learning - Thinking outside the box to solve care challenges in a rare blood disorder |
| title_sort | living caring learning thinking outside the box to solve care challenges in a rare blood disorder |
| topic | inherited blood coagulation disorders thrombophilia purpura fulminans therapeutic relationship nurses professional practice |
| url | https://doi.org/10.2478/jhp-2024-0001 |
| work_keys_str_mv | AT hibnersandra livingcaringlearningthinkingoutsidetheboxtosolvecarechallengesinarareblooddisorder |