24 May Many Caregivers Report High Levels of Depression and Loss of Control Over Their Lives
MedicalResearch.com Interview with:
Jill Cameron, PhD
Canadian Institutes of Health Research New Investigator
Department of Occupational Science and Occupational Therapy
Rehabilitation Sciences Institute
Faculty of Medicine,
University of Toronto
MedicalResearch.com: What is the background for this study? What are the main findings?
Dr. Cameron: In the world of critical illness, a lot of research has focused on helping people to survive – and now that more people are surviving, we need to ask ourselves, what does quality of life and wellbeing look like afterwards for both patients and caregivers? The aim of our research was to identify factors associated with family caregiver health and wellbeing during the first year after patients were discharged from the Intensive Care Unit. We examined factors related to the patient and their functional wellbeing, the caregiving situation including the impact it has on caregivers everyday lives, and caregiver including their sense of control over their lives and available social support. We used Pearlin’s Caregiving Stress Process model to guide this research.
From 2007-2014, caregivers of patients who received seven or more days of mechanical ventilation in an ICU across 10 Canadian university-affiliated hospitals were given self-administered questionnaires to assess caregiver and patient characteristics, caregiver depression symptoms, psychological wellbeing, and health-related quality of life. Assessments occurred seven days and three, six and 12-months after ICU discharge.
The study found that most caregivers reported high levels of depression symptoms, which commonly persisted up to one year and did not improve in some. Caregiver sense of control, impact on caregivers’ everyday lives, and social support had the largest relationships with the outcomes. Caregivers’ experienced better health outcomes when they were older, caring for a spouse, had higher income, better social support, sense of control, and caregiving had less of a negative impact on their everyday lives. No patient characteristics or indicators of illness severity were associated with caregiver outcomes.
Poor caregiver outcomes may compromise patients’ rehabilitation potential and sustainability of home care. Identifying risk factors for caregiver distress is an important first step to prevent more suffering and allow ICU survivors and caregivers to regain active and fulfilling lives.
MedicalResearch.com: What should readers take away from your report?
Dr. Cameron: Our findings suggest that family caregiver health and wellbeing outcomes are more closely related to characteristics of the caregiver and caregiving situation than patient characteristics including functional abilities and neuropsychological wellbeing. This suggests that when determining which caregivers are in need of support, we can’t base this decision on the level of sickness of the patient. We need to screen the caregivers themselves to identify those in need of care and support. Our findings suggest caregivers with low levels of social support, poor sense of control over their situation, and whose caregiving is more likely to impact their everyday lives are more likely to experience poor outcomes and are in need of support from the health care system.
MedicalResearch.com: What recommendations do you have for future research as a result of this study?
Dr. Cameron: Future research should continue to be theoretically driven and follow caregivers longitudinally. Qualitative research involving in depth interviews will enhance our understanding of ways to assist, support, and care for family caregivers across the illness trajectory. Interventions and models of care that target those caregivers in need of support should be developed and tested and ultimately implemented into the health care system.
MedicalResearch.com: Is there anything else you would like to add?
Dr. Cameron: Ultimately, adopting a family centered model of care has the potential to improve the health and wellbeing of family caregivers and their care recipients. One example of adopting this approach concerns the transition of the patient back home. Patients and their caregivers should be assessed for their readiness to go home and provided with education and training to optimize this transition. Once home, families should continue to be monitored and provided with additional supports as needed as they adjust to life in the community. A family centered approach can be incorporated across the care continuum to optimize caregiver and patient outcomes.
One-Year Outcomes in Caregivers of Critically Ill Patients
Jill I. Cameron, Ph.D., Leslie M. Chu, B.Sc., Andrea Matte, B.Sc., George Tomlinson, Ph.D., Linda Chan, B.A.Sc., Claire Thomas, R.N., Jan O. Friedrich, M.D., D.Phil., Sangeeta Mehta, M.D., Francois Lamontagne, M.D., Melanie Levasseur, M.D., Niall D. Ferguson, M.D., Neill K.J. Adhikari, M.D., Jill C. Rudkowski, M.D., Hilary Meggison, M.D., Yoanna Skrobik, M.D., John Flannery, M.D., Mark Bayley, M.D., Jane Batt, M.D., Claudia dos Santos, M.D., Susan E. Abbey, M.D., Adrienne Tan, M.D., Vincent Lo, P.T., B.Sc., Sunita Mathur, P.T., Ph.D., Matteo Parotto, M.D., Denise Morris, R.N., Linda Flockhart, R.N., Eddy Fan, M.D., Ph.D., Christie M. Lee, M.D., M. Elizabeth Wilcox, M.D., Najib Ayas, M.D., Karen Choong, M.D., Robert Fowler, M.D., Damon C. Scales, M.D., Tasnim Sinuff, M.D., Brian H. Cuthbertson, M.D., Louise Rose, R.N., Ph.D., Priscila Robles, P.T., Ph.D., Stacey Burns, R.N., Marcelo Cypel, M.D., Lianne Singer, M.D., Cecilia Chaparro, M.D., Chung-Wai Chow, M.D., Shaf Keshavjee, M.D., Laurent Brochard, M.D., Paul Hébert, M.D., Arthur S. Slutsky, M.D., John C. Marshall, M.D., Deborah Cook, M.D., and Margaret S. Herridge, M.D., M.P.H., for the RECOVER Program Investigators (Phase 1: towards RECOVER) and the Canadian Critical Care Trials Group
N Engl J Med 2016; 374:1831-1841
May 12, 2016 DOI: 10.1056/NEJMoa1511160
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