A new Canadian study focusing on caregiver outcomes of critically ill patients reveals that caregivers of intensive care unit (ICU) survivors, who have received mechanical ventilation for a minimum of seven days, are at a high risk of developing clinical depression persisting up to one year after discharge.
The study, led by Dr. Jill Cameron, Affiliate Scientist at Toronto Rehabilitation Institute-University Health Network (UHN) highlights the need to consider the mental health of caregivers in post-ICU care. While caregiver assistance can be beneficial to patients, such care may have negative consequences for caregivers, including poor health-related quality of life, emotional distress, caregiver burden, and symptoms of post-traumatic stress disorder.
Published in the New England Journal of Medicine on May 12, 2016, the study’s findings suggest patients’ illness severity, functional abilities, cognitive status and neuropsychological wellbeing are not associated with caregiver outcomes. Alternatively, characteristics of the caregiver and individual caregiving situation play a significant role in determining outcomes over the follow-up year.
This study is part of Phase one of the RECOVER Program, a multi-phase project, involving 10 intensive care units across Canada, co-led by Drs. Margaret Herridge, Scientist at the Toronto General Research Institute, and Cameron, in collaboration with the Canadian Critical Care Trials Group. The project aims to identify risk factors for patients and families with the goal of designing rehabilitation models to improve outcomes.
“In the world of critical illness, a lot of research has focused on making sure people survive — and now that people are surviving, we need to ask ourselves, what does quality of life and wellbeing look like afterwards for both patients and caregivers,” says Dr. Cameron, also Associate Professor, Department of Occupational Science & Occupational Therapy and Rehabilitation Sciences Institute, Faculty of Medicine at University of Toronto.
“We need to intervene and support caregivers of all patients, not just the ‘sickest’ patients. Caregivers are not a uniform body of individuals — they have different needs unique to their caregiving situation.”
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, health-related quality of life, sense of control over life, and impact of providing care on other activities. 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.
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.
A parallel companion study evaluating patients led by Dr. Herridge, also a Professor of Medicine at University of Toronto has been published in the American Journal of Respiratory and Critical Care Medicine. This project showed that patients who had been on a mechanical ventilator for one-week could be divided into disability risk groups using age and length-of-stay in an intensive care unit and that these groups determine one-year recovery and illuminate the details of functional disability in daily life.
“These findings will help patients and families make vital decisions about embarking on and also continuing treatment in an intensive care unit,” says Dr. Herridge.
“We need to educate patients, families and the public about what we can realistically offer in terms of functional outcome and quality of life for those patients with complex critical illness and who may come to the ICU in a debilitated state or may be older. We want people to understand and make informed choices about their care, given their circumstances.”
The next phase of this research will focus on developing models of rehabilitation to optimize patient recovery and a program for caregivers to better prepare them for their caregiving role, including education and information on community-based resources, access to home care, and how they can draw on social and psychological support.
- Jill I. Cameron, Leslie M. Chu, Andrea Matte, George Tomlinson, Linda Chan, Claire Thomas, Jan O. Friedrich, Sangeeta Mehta, Francois Lamontagne, Melanie Levasseur, Niall D. Ferguson, Neill K.J. Adhikari, Jill C. Rudkowski, Hilary Meggison, Yoanna Skrobik, John Flannery, Mark Bayley, Jane Batt, Claudia dos Santos, Susan E. Abbey, Adrienne Tan, Vincent Lo, Sunita Mathur, Matteo Parotto, Denise Morris, Linda Flockhart, Eddy Fan, Christie M. Lee, M. Elizabeth Wilcox, Najib Ayas, Karen Choong, Robert Fowler, Damon C. Scales, Tasnim Sinuff, Brian H. Cuthbertson, Louise Rose, Priscila Robles, Stacey Burns, Marcelo Cypel, Lianne Singer, Cecilia Chaparro, Chung-Wai Chow, Shaf Keshavjee, Laurent Brochard, Paul Hébert, Arthur S. Slutsky, John C. Marshall, Deborah Cook, Margaret S. Herridge. One-Year Outcomes in Caregivers of Critically Ill Patients. New England Journal of Medicine, 2016; 374 (19): 1831 DOI: 10.1056/NEJMoa1511160
Explanations of PTSD focus primarily on the way that the mind is affected by traumatic experiences. Theorists speculate upon facing overwhelming trauma, the mind is unable to process information and feelings in a normal way. It is as if the thoughts and feelings at the time of the traumatic event take on a life of their own, later intruding into consciousness and causing distress. Pre-traumatic psychological factors (for example, low self-esteem) may make this process worse (for example, low self-esteem may be reinforced by a brutal rape). Post-traumatic reactions by others (for example, a raped woman who is viewed by family as “dirty”) and by the self (for example, physical discomfort caused by memories of the rape) may also play a role in influencing whether such symptoms persist. It is hypothesized that only after successful reprocessing of the traumatic event(s) do PTSD symptoms decrease. In addition, powerful new techniques for studying the brain, its structures and its chemicals
Why don’t people practice what they preach? New research sheds light on this age-old question, especially when it comes to powerful people who preach from a high moral ground. “This research is especially relevant to the biggest scandals of 2009, as we look back on how private behavior often contradicted the public stance of particular individuals in power,” said Galinsky, the Morris and Alice Kaplan Professor of Ethics and Decision in Management at the Kellogg School. “For instance, we saw some politicians use public funds for private benefits while calling for smaller government, or have extramarital affairs while advocating family values. Similarly, we witnessed CEOs of major financial institutions accepting executive bonuses while simultaneously asking for government bailout money on behalf of their companies.” Researchers sought to determine whether power inspires hypocrisy, the tendency to hold high standards for others while performing morally suspect behaviors oneself.
Believe it or not, both the public and policy-makers often get their ideas from the media. When those ideas are formed about something as serious and impactful as posttraumatic stress disorder, it’s important for the media to tell the story in the right way.
With that in mind, Drexel researchers examined how the country’s most influential paper, the New York Times, portrayed posttraumatic stress disorder (PTSD) from the year it was first added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (1980) to present day (2015).
“Mass media shape public awareness about mental health issues and affect mental illness problem recognition, management, and treatment-seeking by providing information about risk factors, symptoms, coping strategies, and treatment options,” said Jonathan Purtle, DrPH, assistant professor in Drexel’s Dornsife School of Public Health and the study’s principle investigator. “Mass media also influence community attitudes about mental illness and educate policymakers about whether and how to address them.”
Between 1980 and 2015, 871 news articles mentioned PTSD. In theirAmerican Journal of Orthopsychiatry paper, Purtle and his co-authors, Katherine Lynn and Marshal Malik, pointed out three specific issues in the Times’ coverage that could have negative consequences.
“New York Times portrayals of populations affected by PTSD do not reflect the epidemiology of the disorder.”
The Drexel team found that 50.6 percent of the Times’ articles focused on military cases of PTSD, including 63.5 percent of the articles published in the last 10 years.
In actuality, Purtle’s past research showed that most PTSD cases are related to noncombat traumas in civilians. The number of civilians affected by PTSD is 13 times larger than the number of military personnel affected by the disorder.
Occurrences are also much more likely in those who survive non-combat traumas, which include sexual assault (30-80 percent of survivors develop PTSD), nonsexual assault (23-39 percent develop it), disasters (30-40 percent) and car crashes (25-33 percent), among other causes. Veterans of the wars in Afghanistan and Iraq have just a 20 percent occurrence of PTSD.
However, coverage like that in the Times leads the general public to believe that a PTSD diagnosis requires some military component. And 91.4 percent of all legislative proposals involving PTSD between 1989 and 2009 focused only on military populations, with 81.7 percent focusing on combat as a cause (the next highest cause was sexual assault, at 5.5 percent).
“PTSD was negatively framed in many articles.”
Self-stigma attached to PTSD has been identified as a strong barrier to seeking treatment.
As such, with fewer and fewer articles over the years mentioning treatment options (decreasing from 19.4 percent of all PTSD-focused articles in 1980-1995 to just 5.7 percent in 2005-2015), it is particularly harmful when articles focused on negative portrayals of those with PTSD.
Purtle and his researchers found that 16.6 percent of the articles were about court cases in which the defendant potentially had PTSD, while 11.5 percent of other articles talked about substance abuse.
“These negative themes could create misconceptions that people who have PTSD are dangerous and discourage employers from hiring prospective employees with the disorder,” Purtle said.
“Most themes in the New York Times PTSD articles pertained to proximal causes and consequences of the disorder.”
Most articles in the study’s 35-year focus centered on the traumatic exposure that led to PTSD, as well as the symptoms that result from the disorder. They rarely told stories of survivors and prevention.
Although nearly three quarters of articles mentioned a traumatic cause of PTSD, concepts such as risk/protective factors or prevention were barely mentioned. Risk/protective factors were only mentioned in 2.6 percent of articles and prevention was only mentioned in 2.5 percent.
Almost a third of the articles reviewed discussed some kind of symptom — nightmares (13.1 percent of the time), depression (12.3 percent) and flashbacks (11.7 percent) being most common.
“This narrow focus could inhibit awareness about PTSD resilience and recovery and constrain discourse about the social determinants of traumatic stress, which is needed to garner political support for policy interventions,” the Drexel team wrote.
What Can Be Done?
Purtle, Lynn and Malik believe that broadening the discourse on PTSD can lead to better outcomes. Some ways that that can be achieved are focusing on survivor narratives that discussing resiliency and recovery, or talking about research that doesn’t wholly focus on the military causes of the disorder.
- Jonathan Purtle, Katherine Lynn, Mashal Malik. ‘Calculating the Toll of Trauma’ in the Headlines: Portrayals of Posttraumatic Stress Disorder in the New York Times (1980–2015).. American Journal of Orthopsychiatry, 2016; DOI: 10.1037/ort0000187
In analyzing the articles the New York Times has written about post-traumatic stress disorder over the last 35 years, researchers found some troubling trends in the influential paper’s coverage.
When it comes to human potential and high stakes performance, most of us think of things like nutrition, exercise, sleep and stress reduction. What typically doesn’t come to mind is gratitude. And while there is plenty of evidence in the research literature that gratitude is good for us, can it enhance our performance?
First, a quick rundown of the benefits of gratitude:
• Gratitude improves psychological health by increasing happiness and reducing depression (Emmons, 2007).
• Gratitude improves self-esteem.
• Gratitude reduces stess
In a study conducted by Emmons (2007), 45 adults were taught to “cultivate appreciation and other positive emotions. Salivary DHEA/DHEAS and cortisol levels were measured, autonomic nervous system function were assessed and emotions were measured using a psychological questionnaire. Individuals were assessed before and 4 weeks after receiving training in the techniques.
THE RESULTS: There was a mean 23% reduction in cortisol and a 100% increase in DHEA/DHEAS in the Ss. Increased coherence in heart rate variability patterns were measured in 80% of the S’s during the use of the techniques.”
For years, research has shown gratitude not only reduces stress, but it may also play a major role in overcoming trauma. A 2006 study published in Behavior Research and Therapy found that Vietnam War Veterans with higher levels of gratitude experienced lower rates of Post-Traumatic Stress Disorder. A 2003 study published in the Journal of Personality and Social Psychology found that gratitude was a major contributor to resilience following the terrorist attacks on September 11. Recognizing all you have to be thankful for – even during the worst times of your life – fosters resilience.
Grateful people sleep better. Writing in a gratitude journal improves sleep, according to a 2011 study published in Applied Psychology: Health and Well-Being. Spend just 15 minutes jotting down a few grateful sentiments before bed, and you may sleep better and longer.
Steps to Practicing Gratitude – Lorie Hood (2012)
- Get comfortable. Wiggle anything that needs to be wiggled. Maybe roll your shoulders or tip your head from side to side.
- Take a few slow, deep breaths.
- Begin to breathe in through your nose and out through your mouth. Breathe at whatever pace is right for you.
- Allow to come to your mind someone or something for which you feel grateful. If nothing comes right away, just keep breathing, enjoy the quiet and let your body relax. Just let go.
- If/when something or someone does come to your mind, think of that person, pet or experience and the reasons you feel such gratitude.
- In your mind, remember the experience or even tell the person specific reasons you feel so grateful. You can say, in your mind, “remember the time when…”
- As you remember, allow the pictures to come to your mind and as the memories come up allow yourself to FEEL the feeling of gratitude. You will likely feel the swelling and warmth around your heart. This is a physiological and very real thing and it is very healing to your body.
Now, allow that warmth to spread out throughout your body. Keep breathing. You can do this for as long as you would like. Remember — This is about you giving your physical body a break. Just breathe…in through your nose and out through your mouth and let your body relax.
When you feel ready, wiggle your fingers. Wiggle your toes. Take a big, deep breath and stretch. Open your eyes and welcome this new feeling.
In that short exercise, your body relaxed and your blood vessels opened up and all of the natural flow of blood and oxygen came more into balance. You can do this anytime, anywhere.
© Lorie Hood 2016
R. A. Emmons (2007) Thanks! How the new science of gratitude can make you happier. New York: Houghton Mifflin.Original study: Emmons, R. A. & McCullough, M. E. (2003) Counting blessings versus burdens: An experimental investigation of gratitude and subjective well being in daily life, Journal of Personality and Social Psychology 84: 377-89.