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  • IRB: ETHICS & HUMAN RESEARCH

Caregivers of Orthopedic Trauma Patients: Perspectives on Participating in Caregiver-Related Research

Informal caregivers of orthopedic trauma patients, such as family members and friends who are not part of the medical team, provide a wide range of care and support through several phases of caregiving: immediate postinjury caregiving in the hospital, caregiving throughout recovery in the hospital, transition to rehabilitation facilities, and home-based care. Additional research is needed to understand what caregivers experience throughout the recovery process for orthopedic trauma patients and how to support these caregivers. Yet some commentators contend that research with caregivers should not be conducted so as to avoid causing additional emotional stress and trauma associated with discussing a loved one’s traumatic injury and subsequent care. There is evidence from other populations, including trauma patients themselves, however, that participation in research does not result in added emotional stress or trauma. This substudy used a qualitative approach to analysis of in-depth, semistructured interviews conducted with caregivers who had participated in the parent study on caregiver needs and whose patients had experienced severe orthopedic trauma and were hospitalized for a minimum of five days. The substudy consisted of two interviews: the first conducted at the end of each caregiver’s participation in the parent study, and the second roughly 12 months later. The aim was to understand the caregivers’ experiences of participating in research, including why they chose to participate, whether participation was burdensome or traumatic, whether there was any benefit to participation, and whether they would participate again. We hope our findings help researchers and institutional review board members design and evaluate research studies of caregivers.

Holzer J. and Bradford A. Caregivers of orthopedic trauma patients: Perspectives on participating in caregiver-related research. IRB: Ethics & Human Research 2014;36(5): 8-12.

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