Category: Brain Injury; Clinical Practice (assessment, diagnosis, treatment, knowledge translation/EBP, implementation science, program development)
Objective : To describe what family caregivers experience when caring for an adult with disordered consciousness following a severe brain injury to improve shared decision making.
Design : Caregivers actively collaborated in cross-disciplinary qualitative investigation using grounded theory design. 1:1 semi-structured interviews conducted using WebEx.
Setting : Not applicable.
Participants (or Animals, Specimens, Cadavers) : Thirteen family caregivers of persons with disordered consciousness following a severe brain injury were recruited using snowball sampling.
Interventions : Not applicable.
Main Outcome Measure(s) : Not applicable.
Results : Fifteen narrative interviews conducted with 13 caregivers. All interviews were transcribed and coded by four researchers and two caregiver partners using Saldana's coding manual and a narrative medicine framework.1,2 Thematic and content analysis used in reviewing transcripts for themes both within and across participant data.3-5 Emerging themes include: 1) caring for a loved one once discharged home, 2) communicating with healthcare providers about loved one's responses to stimuli, 3) becoming the voice for their loved one, and 4) challenges navigating the healthcare system. The data offer rich descriptions of what caregivers experience day to day as well as regarding their encounters with providers. For example, one caregiver shared calling their state senator to advocate for their loved one to go to a rehabilitation program because they were denied further services by their providers. Caregivers described finding and using community resources to navigate the healthcare system.
Conclusions : Interview narratives provided an opportunity for caregivers to tell their stories of caring for their loved ones and express their positive and frustrating experiences with providers and the healthcare system. The framework of narrative medicine facilitates an appreciation and nuanced understanding of caregivers' voices in order to advance shared decision making with this vulnerable population.
Jennifer Weaver– Adjunct Professor, Research Associate, The George Washington University, College Park, Maryland
Christina Papadimitriou– Associate Professor, Departments of Interdisciplinary Health Sciences and Sociology, Oakland University, Rochester, Michigan
Trish Kot– Caregiver partner and consultant, The George Washington University, Homer Glen, Illinois
Ann Guernon– Clinical Research Manager, Hines VA, Sugar Grove, Illinois
Paige Ford– Caregiver consultant, The George Washington University, Summerville, Georgia
Elizabeth Elgin– Student, The George Washington University, Washington, District of Columbia
Andrew Jones– Research Assistant, George Washington University, Glastonbury, Connecticut
Trudy Mallinson– Professor, George Washington University, Washington, District of Columbia
Theresa Pape– Clinical Neuroscientist, Edward Hines Jr. Veterans Administration Hospital, Hines, Illinois