دورية أكاديمية
Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey
| العنوان: | Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey |
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| المؤلفون: | Faith Gibson, Lorna A. Fern, Bob Phillips, Helen Gravestock, Sonia Malik, Amy Callaghan, Karen Dyker, Mike Groszmann, Leila Hamrang, Rachael Hough, Demi McGeachy, Sue Morgan, Sam Smith, Sheela Upadhyaya, Helen Veitch, Max Williamson, Jeremy Whelan, Susie Aldiss |
| المصدر: | Health Expectations, Vol 24, Iss 5, Pp 1593-1606 (2021) |
| بيانات النشر: | Wiley, 2021. |
| سنة النشر: | 2021 |
| المجموعة: | LCC:Medicine (General) LCC:Public aspects of medicine |
| مصطلحات موضوعية: | cancer, information, James Lind Alliance, support, teenage, young adult, Medicine (General), R5-920, Public aspects of medicine, RA1-1270 |
| الوصف: | Abstract Objective We conducted a UK‐wide survey to identify the top 10 research questions for young people's cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer. Design James Lind Alliance Priority Setting Partnership. Participants Young people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population. Methods Eight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis. Results The 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research. Conclusions The need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes. Patient/public contributions Patients and carers were equal stakeholders throughout. |
| نوع الوثيقة: | article |
| وصف الملف: | electronic resource |
| اللغة: | English |
| تدمد: | 1369-7625 1369-6513 |
| Relation: | https://doaj.org/toc/1369-6513; https://doaj.org/toc/1369-7625 |
| DOI: | 10.1111/hex.13276 |
| URL الوصول: | https://doaj.org/article/e6ae08058ac9448ea7b5ae895fabf6a7 |
| رقم الأكسشن: | edsdoj.6ae08058ac9448ea7b5ae895fabf6a7 |
| قاعدة البيانات: | Directory of Open Access Journals |
Full Text Finder | تدمد: | 13697625 13696513 |
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| DOI: | 10.1111/hex.13276 |