日期:
2020 年 — 2026 年
2020
2021
2022
2023
2024
2025
2026
影响因子:

Navigating disclosure in new romantic partnerships as an adolescent or young adult with Li-Fraumeni syndrome

对于患有李-弗劳梅尼综合征的青少年或青年来说,如何在新的恋爱关系中坦白自己的病情?

Rising, Camella J; Huelsnitz, Chloe O; Forbes Shepherd, Rowan; Wilsnack, Catherine; Boyd, Patrick; Sleight, Alix G; Thompson, Ashley S; Hutson, Sadie P; Khincha, Payal P; Werner-Lin, Allison

Relating to the Body Under Chronic Cancer Threat: Implications for Psychosocial Health Among Adolescents and Young Adults with Cancer Predisposition Syndromes

慢性癌症威胁下的身体状况:对患有癌症易感综合征的青少年和青年心理健康的影响

Rising, Camella J; Forbes Shepherd, Rowan; Sleight, Alix G; Boyd, Patrick; Wilsnack, Catherine; Thompson, Ashley S; Huelsnitz, Chloe O; Hutson, Sadie P; Khincha, Payal P; Werner-Lin, Allison

Defining the complex needs of families with rare diseases-the example of telomere biology disorders

明确罕见病家庭的复杂需求——以端粒生物学疾病为例

Wilsnack, Catherine; Rising, Camella J; Pearce, Emily E; Forbes Shepherd, Rowan; Thompson, Ashley S; Majid, Alina; Werner-Lin, Allison; Savage, Sharon A; Hutson, Sadie P

Diet and physical activity behaviors: how are they related to illness perceptions, coping, and health-related quality of life in young people with hereditary cancer syndromes?

饮食和身体活动行为:它们与患有遗传性癌症综合征的年轻人的疾病认知、应对方式和健康相关的生活质量有何关系?

Rising, Camella J; Huelsnitz, Chloe O; Shepherd, Rowan Forbes; Klein, William M P; Sleight, Alix G; Wilsnack, Catherine; Boyd, Patrick; Feldman, Alexandra E; Khincha, Payal P; Werner-Lin, Allison

"Crying in the Wilderness"-The Use of Web-Based Support in Telomere Biology Disorders: Thematic Analysis

《荒野中的哭泣》——网络支持在端粒生物学疾病中的应用:主题分析

Pearce, Emily Eidenier; Majid, Alina; Brown, Toniya; Shepherd, Rowan Forbes; Rising, Camella; Wilsnack, Catherine; Thompson, Ashley S; Gilkey, Melissa B; Ribisl, Kurt M; Lazard, Allison J; Han, Paul Kj; Werner-Lin, Allison; Hutson, Sadie P; Savage, Sharon A

A "rotating menu" of medical uncertainty for families affected by telomere biology disorders: A qualitative interview study

端粒生物学疾病患者家庭面临的医疗不确定性如同“轮换菜单”:一项定性访谈研究

Pearce, Emily; Majid, Alina; Brown, Toniya; Wilsnack, Catherine; Rising, Camella; Thompson, Ashley S; Shepherd, Rowan Forbes; Niknafs, Arman; Werner-Lin, Allison; Gilkey, Melissa B; Ribisl, Kurt M; Hutson, Sadie P; Han, Paul K J; Savage, Sharon A

Embodied risk for families with Li-Fraumeni syndrome: Like electricity through my body

李-弗劳梅尼综合征患者家庭所面临的身体风险:就像电流穿过我的身体

Werner-Lin, Allison; Forbes Shepherd, Rowan; Young, Jennifer L; Wilsnack, Catherine; Merrill, Shana L; Greene, Mark H; Khincha, Payal P

Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit

不断变化且相互交织的需求:儿科重症监护病房中,父母在撤除生命维持治疗期间及之后的经历

Broden, Elizabeth G; Werner-Lin, Allison; Curley, Martha A Q; Hinds, Pamela S

Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation

儿科重症监护病房需要机械通气的临终关怀护理

Broden, Elizabeth G; Hinds, Pamela S; Werner-Lin, Allison; Quinn, Ryan; Asaro, Lisa A; Curley, Martha A Q

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care

李-弗劳梅尼综合征青少年及青年家庭沟通挑战:对心理社会护理的启示

Rising, Camella J; Wilsnack, Catherine; Boyd, Patrick; Sleight, Alix G; Hutson, Sadie P; Khincha, Payal P; Werner-Lin, Allison