Collaborative Multi-Condition Caregiving Initiative

Families are essential members of the healthcare team who provide care for their loved ones. We believe that family caregivers of persons with a wide variety of conditions (e.g., dementia, autism, spinal cord injury) have shared experiences and needs, yet research has rarely acknowledged the similarities. With 1U4U funding, we will conduct a series of caregiver focus groups, with the aim of uncovering and articulating similarities and differences across diverse caregiving relationships (e.g., parent, child, spouse) and health conditions. These data will have twofold impact: 1) inform a white paper synthesizing the until-now fragmented and isolated bodies of research, and 2) serve as the first-step in creating a caregiver stakeholder board to facilitate engagement of experienced caregivers who will inform future research conducted by scholars and clinicians at the University of Utah. Community-engaged research practices allow for the most efficient translation of research results into real-world care and clinical practice. This proposal embodies the spirit of OneU by: 1) developing an authentic community-university partnership, 2) enhancing the research activities of scholars and clinicians from Academic Affairs and Health Sciences, and 3) resulting in a better understanding of family caregivers’ experiences and needs. These activities are vital to informing research and changing the way that family members are included in and supported by traditional health care practices.

Current Status

2021-09-12
ABSTRACT: The purpose of this 1U4U project was to examine the experiences of family caregivers who provide care to individuals across a broad range of ages, caregiving relationships, and health conditions. Family caregiver research has typically been siloed by health condition or by caregiving relationship. Our team worked with the Clinical and Translational Science Institute’s Community Collaboration and Engagement Team to host three virtual focus groups with a diverse sample of twenty-six family caregivers. We conducted a qualitative analysis and found that participants expressed many shared experiences, despite having unique caregiving situations. We identified themes among their a) experiences: Doing It All; Changes Over Time; Complex Emotions; and Expectations and b) needs: Breaks and Care of Self; Help, Support and Resources; and Understanding and Recognition. These findings emphasize that many elements of the caregiving experience transcend care recipient age, condition, and relationship. The evidence of shared caregiver experiences can guide efficiencies in policy and practice, such as pooling of existing resources and supports, and the expansion of existing interventions, to meet the needs of a broader population of caregivers. Our interdisciplinary team will continue to maintain connection with community caregivers to inform policy, future research, and improved services.