Caregiver Perspectives on the Benefits, Burdens, and Moral Distress of Participation in Cancer Clinical Trials.
| Autor: | Paidipati, Cynthia P., Foxwell, Anessa M., Mooney-Doyle, Kim, Tiller, Deborah, Pinto-Martin, Jennifer, Ulrich, Connie M. |
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| Předmět: |
CAREGIVER attitudes
CLINICAL trials ETHICS HUMAN research subjects RESEARCH methodology BURDEN of care INTERVIEWING QUALITATIVE research FAMILY-centered care FAMILY attitudes PSYCHOLOGY of caregivers QUALITY of life FINANCIAL stress ACCESS to information MENTAL depression CANCER fatigue SOUND recordings RESEARCH funding THEMATIC analysis DECISION making in clinical medicine NEEDS assessment ANXIETY PSYCHOLOGICAL distress |
| Zdroj: | Journal of Family Nursing; Feb2023, Vol. 29 Issue 1, p89-98, 10p |
| Abstrakt: | 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. [ABSTRACT FROM AUTHOR] |
| Databáze: | Complementary Index |
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