Eric C Blackstone, Susan R Mazanec, Barbara J Daly, Jennifer A Dorth, Alberto J Montero, Mark P Aulisio, Patricia T Brandt, Helen Foley, Sana Loue
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引用次数: 0
Abstract
Purpose: Family caregivers assist cancer patients in making medical decisions, yet their roles in clinical trial decisions remain understudied. This study aimed to determine how caregivers participate in clinical trial decisions from the perspectives of both caregivers and research staff.
Methods: Family caregivers of patients offered participation in a clinical trial and clinical trial staff were recruited for focus groups and semi-structured interviews. Participants were asked about caregiver roles in clinical trial decisions and practices of staff to include caregivers during the informed consent process.
Results: Qualitative analysis revealed these caregiver themes: promoting patient autonomy, influential factors, and burdens of participation. Themes specific to clinical trial staff included the following: caregiver role in decision, approaches to caregiver inclusion, caregiver utility to trial staff, and navigating challenging situations. Caregivers reported helping patients make better decisions without influencing them, while clinical trial staff viewed caregivers as highly influential. The hope for therapeutic benefit was a strong motivator for caregivers to support participation in the trial despite burdens they encountered. Clinical trial staff found caregivers to be useful in facilitating communication and adherence to the study protocol.
Conclusion: Caregivers should be included early in clinical trial discussions due to their key role in decision-making and facilitating adherence. Clinical trial staff would benefit from training on communication with caregivers and identifying support to alleviate caregiver burden. The cancer research community should explore ways to decrease caregiver burden when possible or provide compensation when caregivers sacrifice time and effort to facilitate clinical trial participation.
期刊介绍：
Supportive Care in Cancer provides members of the Multinational Association of Supportive Care in Cancer (MASCC) and all other interested individuals, groups and institutions with the most recent scientific and social information on all aspects of supportive care in cancer patients. It covers primarily medical, technical and surgical topics concerning supportive therapy and care which may supplement or substitute basic cancer treatment at all stages of the disease.
Nursing, rehabilitative, psychosocial and spiritual issues of support are also included.
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