Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents
| Autor: | Janet A. Deatrick, Elicia C. Wartman, Dava Szalda, Elizabeth S. Ver Hoeve, Lisa A. Schwartz, Alexandra M. Psihogios, Lindsay M. Anderson |
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| Rok vydání: | 2019 |
| Předmět: |
Adult
Male Parents Patient Transfer Gerontology Transition to Adult Care medicine.medical_specialty Adolescent Aftercare Survivorship Health informatics Young Adult 03 medical and health sciences 0302 clinical medicine Cancer Survivors Neoplasms Survivorship curve Health care medicine Humans 030212 general & internal medicine Child Oncology (nursing) business.industry Public health Palliative Care Patient Preference Focus Groups Long-Term Care Digital health Focus group humanities Cross-Sectional Studies Oncology 030220 oncology & carcinogenesis Structured interview Female business Qualitative research |
| Zdroj: | Journal of Cancer Survivorship. 13:620-631 |
| ISSN: | 1932-2267 1932-2259 |
| Popis: | This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions. Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes. Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools. These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models. Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families. |
| Databáze: | OpenAIRE |
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