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Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.
Paidipati, Cynthia P; Foxwell, Anessa M; Mooney-Doyle, Kim; Tiller, Deborah; Pinto-Martin, Jennifer; Ulrich, Connie M.
Afiliação
  • Paidipati CP; Loyola University Chicago, IL, USA.
  • Foxwell AM; University of Pennsylvania, Philadelphia, USA.
  • Mooney-Doyle K; University of Pennsylvania, School of Nursing, Philadelphia, USA.
  • Tiller D; University of Maryland, Baltimore, USA.
  • Pinto-Martin J; The Wistar Institute, Philadelphia, PA, USA.
  • Ulrich CM; University of Pennsylvania, School of Nursing, Philadelphia, USA.
J Fam Nurs ; 29(1): 89-98, 2023 02.
Article em En | MEDLINE | ID: mdl-35611586
Caregivers often face critical decisions, burdens, and perceived benefits related to a loved one participating in cancer clinical trial (CCTs). The purpose of this analysis was to better understand caregivers' perceptions on the benefits and burdens of participation in cancer clinical trials. Using a qualitative descriptive design, interviews with 20 caregivers of patient-participants from a larger parent study were conducted. Three major themes emerged. The benefits of research participation focused on enhancing the potential for saving a loved one's life, improving quality of life, and holding altruistic intentions. The burden of research participation emphasized a loved one's suffering as well as physical, emotional, logistical, and financial burden to caregivers. Caregiver moral distress highlighted distressing ethical encounters, such as making decisions on research participation and navigating suboptimal care. Understanding caregiver perceptions is an important step in designing future CCTs that minimize burdens and maximize patient and caregiver health and family-centered care.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Cuidadores / Neoplasias Tipo de estudo: Prognostic_studies / Qualitative_research Limite: Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Cuidadores / Neoplasias Tipo de estudo: Prognostic_studies / Qualitative_research Limite: Humans Idioma: En Ano de publicação: 2023 Tipo de documento: Article