P3‐506: INTEGRATION OF STAKEHOLDER INPUT TO DEVELOP A CAREGIVER SURVEY

Traditional approaches to instrument development recommend using published literature and existing instruments as the bases for creating new tools; however, these approaches often do not capitalize on stakeholder input. As part of a pragmatic trial, we sought to ensure that our survey reflects the values and priorities of our target audience. As such, we combined stakeholder engagement methods with traditional survey development techniques. We will describe our efforts to integrate both strategies to create a survey that measures caregivers' perceptions and satisfaction of nursing home care for persons with dementia (PWD). A scoping review of experiences of informal caregivers of PWD and a systematic review of existing instruments that measured relevant themes were planned to inform item development. Caregiver interviews were performed to gather additional qualitative information. Stakeholders were integrated into the planning process via an Advisory Committee (AC) and survey expert panel. The AC comprised of 19 stakeholders, whom guided the design of the reviews, interviews, and makeup of expert panel (e.g. diversity, types of caregivers). The expert panel (n=7) included three child caregivers, one spousal caregiver, one researcher, and two clinicians, and reflected diversity with respect to gender, education, and geographic location. Integrating feedback from both the AC and expert panel throughout the review process, the scoping review yielded nine themes of informal caregivers' perspectives: communication; transition to nursing home; quality of care; quality of life; informal caregivers' role; dementia knowledge; medication use; end of life processes; and finances. The themes are currently under review for existing instruments via systematic review. Qualitative data, with input from stakeholders, will be used to reveal additional themes. Item development will be informed by synthesizing information from the reviews and qualitative interviews. The expert panel will participate in content validation of the developed survey. Our stakeholders input and perspectives have been interwoven throughout the traditional survey development processes, providing a more comprehensive and real-world perspective in instrument development. This may lead to more reliable and valid survey scores on which to make generalizations.