This project aims to create and validate measures to assess the engagement of caregivers (those who support people with chronic health conditions) in research. In order to assess the aspects that help or hinder caregiver engagement in research, the study team will qualitatively analyze transcripts from interviews with caregivers. The USOAR student will support this work by assisting in qualitative analysis (for which they will receive training) and literature reviews.
Nearly 53 million people living in the US are caregivers, family and friends who support people living with chronic health conditions. Caregiving is highly complex and has broad psychological, physical, and economic consequences. Caregivers often experience high levels of stress, burden, burnout, depression, morbidity, and isolation. However caregiving is very rewarding and many family caregivers have reported positive experiences including a sense of giving back to someone who has cared for them, the satisfaction of knowing that their loved one is getting excellent care, personal growth and increased meaning and purpose in one’s life.
Often, caregivers have been excluded from research and specifically research that engages them. It is important that they be included in order to create more effective and impactful research outcomes that would affect them.
The project focuses on understanding and addressing all aspects that help or hinder a caregiver’s ability to meaningfully engage in research. We are creating and validating a measure of research engagement by a wide range of caregivers. To do this, we will first identify barriers and facilitators that shape a caregiver’s ability to engage in research using semi-structured interviews. Based on those findings, we will then develop and validate the measure.
The undergraduate student assisting with this project will help with general project support, data collection, qualitative analysis, and writing. Specifically, they will work with a graduate student to conduct human subjects research, get training in de-identifying interview transcripts, training in the qualitative data analysis software NVivo, learn how to support qualitative data analysis, and conduct literature reviews. They may also have the opportunity to sit in and observe participant interviews and meetings with collaborators across the country.
o Detail-oriented
o Ability to work well in a team-based setting
o Ability to follow through on deadlines
o Comfort asking questions where additional clarity or support is needed
o Interest in exploring research at the intersection of health sciences, engineering, and social sciences
o Ability to work 10/hrs per week through the end of the semester
o Qualitative research methods
o Hands-on experience with caregiving research and working directly with the community, and its importance
o Develop problem-solving skills
o Learn about the ethics of conducting human subjects research
o Gain experience with a multidisciplinary group of researchers across UVA and Vanderbilt University