Engagement of Canadian Patients with Rare Diseases and Their Families in the Lifecycle of Therapy: A Qualitative Study

被引:0
|
作者
Andrea Young
Devidas Menon
Jackie Street
Walla Al-Hertani
Tania Stafinski
机构
[1] University of Alberta,Health Technology and Policy Unit, School of Public Health
[2] University of Adelaide,School of Public Health
[3] University of Calgary,Cumming School of Medicine
关键词
D O I
暂无
中图分类号
学科分类号
摘要
引用
收藏
页码:353 / 359
页数:6
相关论文
共 50 条
  • [1] Engagement of Canadian Patients with Rare Diseases and Their Families in the Lifecycle of Therapy: A Qualitative Study
    Young, Andrea
    Menon, Devidas
    Street, Jackie
    Al-Hertani, Walla
    Stafinski, Tania
    PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, 2018, 11 (03): : 353 - 359
  • [2] Therapeutic trajectories of families with rare diseases in Chile from the perspectives of patients, carers, and healthcare workers: a qualitative study
    Báltica Cabieses
    Alexandra Obach
    Antonia Roberts
    Gabriela Repetto
    Orphanet Journal of Rare Diseases, 20 (1)
  • [3] Impact of inherited retinal diseases on Canadian patients and families: a mixed-methods study
    Kherani, Imaan Z.
    Andrews, Chad
    Pereira, Jennifer A.
    Moniz, Larissa S.
    Qian, Cynthia X.
    CANADIAN JOURNAL OF OPHTHALMOLOGY-JOURNAL CANADIEN D OPHTALMOLOGIE, 2023, 58 (06): : 532 - 538
  • [4] Coping strategies of patients affected by rare diseases A qualitative focus group study
    Depping, Miriam K.
    Uhlenbusch, Natalie
    Loewe, Bernd
    JOURNAL OF PSYCHOSOMATIC RESEARCH, 2019, 121 : 156 - 156
  • [5] Health and socio-educational needs of the families and children with rare metabolic diseases: Qualitative study in a tertiary hospital
    Maria Tejada-Ortigosa, Eva
    Flores-Rojas, Katherine
    Moreno-Quintana, Laura
    Carmen Munoz-Villanueva, Maria
    Luis Perez-Navero, Juan
    Gil-Campos, Mercedes
    ANALES DE PEDIATRIA, 2019, 90 (01): : 42 - 50
  • [6] Diagnosis of rare diseases under focus: impacts for Canadian patients
    Esquivel-Sada D.
    Nguyen M.T.
    Journal of Community Genetics, 2018, 9 (1) : 37 - 50
  • [7] Determining Commonalities in the Experiences of Patients with Rare Diseases: A Qualitative Analysis of US Food and Drug Administration Patient Engagement Sessions
    Catherine Mease
    Lewis J. Fermaglich
    Karen Jackler
    Shawn Shermer
    Kathleen L. Miller
    The Patient - Patient-Centered Outcomes Research, 2024, 17 : 25 - 37
  • [8] Determining Commonalities in the Experiences of Patients with Rare Diseases: A Qualitative Analysis of US Food and Drug Administration Patient Engagement Sessions
    Mease, Catherine
    Fermaglich, Lewis J.
    Jackler, Karen
    Shermer, Shawn
    Miller, Kathleen L.
    PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, 2024, 17 (01): : 25 - 37
  • [9] Family therapy sessions with refugee families; A qualitative study
    Björn G.J.
    Gustafsson P.A.
    Sydsjö G.
    Berterö C.
    Conflict and Health, 7 (1)
  • [10] Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany
    Stefanie Witt
    Kaja Kristensen
    Silke Wiegand-Grefe
    Johannes Boettcher
    Janika Bloemeke
    Christina Wingartz
    Monika Bullinger
    Julia Quitmann
    Orphanet Journal of Rare Diseases, 16