Exploring the Perceived Self-management Needs of Young Adults With Osteogenesis Imperfecta
| Autor: | Charlotte E Anderson, Argerie Tsimicalis, Alisha Michalovic, Frank Rauch, Kelly Thorstad |
|---|---|
| Rok vydání: | 2020 |
| Předmět: |
Adult
Male medicine.medical_specialty Leadership and Management Nurse practitioners MEDLINE Assessment and Diagnosis 03 medical and health sciences Young Adult 0302 clinical medicine Mentorship medicine Humans Transitional care 030212 general & internal medicine Young adult Qualitative Research Advanced and Specialized Nursing Health Services Needs and Demand Self-management 030504 nursing business.industry Self-Management Osteogenesis Imperfecta LPN and LVN medicine.disease Osteogenesis imperfecta Family medicine Female 0305 other medical science business Qualitative research |
| Zdroj: | Clinical nurse specialist CNS. 34(3) |
| ISSN: | 1538-9782 |
| Popis: | Purpose To explore the perceived self-management needs of young adults with osteogenesis imperfecta (OI) with the goal of optimizing the self-management and transitional care services. Methods A qualitative descriptive study was performed with young adults diagnosed with OI. Two semistructured interviews were conducted before and after their first appointment with a nurse practitioner in the adult healthcare settings (a new partnership initiated by the pediatric hospital). Data were transcribed and descriptively analyzed. Results Seven participants with OI types I, III, and IV were interviewed. Ages ranged from 23 to 34 years, and years since discharge from the pediatric hospital ranged from 3 to 10. Four themes emerged including (1) dropped in the jungle, with no one to call; (2) they do not know how to treat me; (3) I feel like I'm going to get back in the loop; and (4) self-managing what I know, how I know. Conclusions Similar to other childhood-onset conditions, adolescents and young adults with OI require education and mentorship, and clinicians in the adult healthcare system need to be prepared and supported to receive them. Collective efforts are needed to improve the self-management and transitional care needs for young adults with OI. |
| Databáze: | OpenAIRE |
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