Caregiver stress: The crucial, often unrecognized byproduct of chronic disease

September 11, 2019

Science Daily/Elsevier

There is growing evidence that caregivers of patients with cardiovascular disease (CVD) are vulnerable to developing their own poor cardiovascular health. Investigators report in the Canadian Journal of Cardiology, published by Elsevier, on a proof-of-concept couples-based intervention in a cardiac rehabilitation setting. This intervention has shown potential for reducing caregiver distress, and future studies are evaluating its impact on both caregivers' and patients' cardiovascular health.

Nearly half of Canadians have been in caregiving roles to family and friends, with similar figures in the United States and Europe. A caregiver is broadly defined as someone who provides informal or unpaid work to a family member or friend with a chronic condition or disability. Caregivers provide crucial, rarely remunerated support to sick family members or friends. About 40 per cent of caregivers, of whom more than half are women, report high psychological, emotional, physical, social, and financial stresses imposed by the caregiving role. These factors can contribute to a higher risk of CVD among caregivers themselves. However, despite an appreciation of these issues, few approaches have been effective in reducing caregiver stress. This need is expected to increase because pressures on "cardiac" caregivers are projected to rise in the next decade as the population ages, length of hospital stays decline, and CVD and associated risk factors continue to increase.

"It is abundantly clear that caregivers need to be better supported!" said lead investigator Heather Tulloch, PhD, Division of Cardiac Prevention and Rehabilitation, University of Ottawa Heart Institute (UOHI), and University of Ottawa, Ottawa, ON, Canada. First author, Karen Bouchard, PhD, postdoctoral fellow in behavioral medicine at UOHI added, "Caregivers are critical for patients' cardiovascular health management and are an invaluable healthcare resource, contributing enormously to the Canadian healthcare system. Individuals who care for their partners may experience additional cardiovascular risk -- a risk that should be recognized and to which we should respond."

In this narrative review, investigators look at evidence from the fields of health psychology and relationship science and highlight the direct (e.g., physiological) and indirect (e.g., behavioral, emotional) factors that link caregiver distress with caregivers' own cardiovascular risk. For example, caregivers are more likely to continue to smoke and less likely to be physically active than individuals who provide no or low levels of care; their diets tend to be high in saturated fat intake leading to greater body mass indexes; they spend less time engaging in self-care activities and report poor preventive health behaviors; they experience less or disordered sleep; and demonstrate poor adherence to medication. Spousal caregivers have higher levels of depressive symptoms, physical and financial burden, relationship strain, and lower levels of positive psychological wellbeing compared to adult children caregivers, for example.

The researchers report that the risk of hypertension and metabolic syndrome may be directly related to high-intensity caregiving, defined as providing more than 14 hours of caregiving per week over two consecutive years. They also report findings that estimate the economic contribution of caregivers' unpaid labor to be $26 billion annually in Canada, which is projected to increase to $128 billion by 2035 (likely translating to over a trillion dollars each in the USA and Europe).

The investigators contend that the cardiovascular health of both patient and caregiver could be improved by enhancing the quality of the patient-caregiver relationship. They describe a proof of concept testing of Healing Hearts Together, a relationship-enhancement and educational program for patients and partners. Based on attachment theory, which states that close emotional bonds are essential when faced with a threat such as a cardiac event, the program guides couples through conversations in which they review information on heart health and attachment; share their unique experiences with heart disease with partners and peers; and learn to clearly communicate their need for connection and reassurance. This connection enhances couple satisfaction and problem solving. Participants reported improvements in relationship quality, mental health, and select quality of life measures. A controlled evaluation of the impact of the program on cardiovascular risk factors is underway.

"The aim of Healing Hearts Together is to increase emotional accessibility and responsiveness in couples facing CVD," explained Dr. Tulloch. "Taken together, couples-based interventions in a cardiac rehabilitation setting may be a timely and appropriate approach to reduce caregiver distress and enhance caregivers' comprehensive health outcomes. There is an emerging opportunity to care for those who care for their partners and enhance the health of both. It is important that healthcare professionals recognize the burden of caregiving and act sensitively and strategically to address these challenges."

"Detrimental effects of the caregiving experience are greater among middle-aged caregivers, those known as the 'sandwich generation,' because they balance paid work commitments and interpersonal relationships with care delivery tasks for parents, children, and/or partners," commented Monica Parry, NP-Adult, MEd, MSc, PhD, University of Toronto, Toronto, ON, Canada, in an accompanying editorial. She points out that men and women deal differently with caregiving and, as the landscape of heart disease in women is changing, so must our approach and understanding of the caregiving experiences of men. For example, male caregivers may struggle with the societal views of caring; feel invisible at times; and may be unsure how to assimilate the caring role, masculinity, and accessing help for themselves. "We are facing an epidemic of caregiver burden. Caregivers cannot remain under-researched, under-diagnosed, under-treated and/or under-supported," she concluded.

https://www.sciencedaily.com/releases/2019/09/190911091400.htm

Coping skills program helps social service workers reduce stress, trauma after disasters

July 25, 2019

Science Daily/University of Illinois at Urbana-Champaign, News Bureau

Social work professors found that a mental health intervention called Caregivers Journey of Hope can bolster social service workers' emotional resilience and ability to cope with the stress and trauma associated with disasters such as Superstorm Sandy.

An intervention called Caregivers Journey of Hope can help social service workers -- especially those with the least experience in the field -- to mitigate the stress and trauma they may experience when they're helping community members recover from disasters, a new study found.

There's a significant need for mental health interventions for social service workers, who are at high risk of burnout, chronic stress and emotional distress in disaster recovery, said the study's co-authors, University of Illinois social work professors Tara Powell and Kate M. Wegmann.

"Since many people in helping professions may be trying to rebuild their own lives while helping traumatized people in the community, providing these workers with the training and tools to practice physical, emotional and social self-care is critical to helping them reduce their own stress and avert burnout," said Powell, who led the study.

Powell and her co-authors examined the impact that the Caregivers Journey of Hope workshop had on 722 professionals who assisted victims of Superstorm Sandy in New York and New Jersey.

Sandy ravaged the Eastern Seaboard of the U.S., Canada and the Caribbean during October 2012, killing more than 200 people and causing more than $70 billion in damage. New York and New Jersey were among the hardest-hit regions on the U.S. mainland, where 87 people died and more than 650,000 homes were damaged or destroyed, according to the study.

Powell co-developed the Caregivers Journey of Hope curriculum while working for Save the Children. The curriculum was designed to bolster the resilience of social workers, teachers and children in New Orleans and reduce emotional distress they experienced as a result of Hurricane Katrina in 2005.

Recovery from disasters often takes years, Powell and Wegmann noted in the study. Working closely with traumatized clients and vicariously experiencing their terror and pain can adversely affect the mental health of counselors and social workers.

In turn, this distress can trigger a host of emotional, behavioral, physical and interpersonal problems, negatively affecting caregivers' job performance and personal lives, according to the study.

Obtaining social support can be especially important for counselors because the often-confidential nature of their work prevents them from discussing traumatizing or stressful experiences outside the workplace, the researchers wrote.

"The half-day Caregivers Journey of Hope workshop gives front-line care providers an opportunity to process disaster-related stress in a safe, confidential environment, build social support and develop strategies to cope with stressors in the workplace and at home," Powell said. "A wealth of research over the past couple of decades has illustrated that higher levels of stress are associated with lower levels of social support."

Working in small groups, workshop participants share their experiences; explore the types, sources and effects of stress; and develop solutions, such as ways they can build their social support networks. They also discuss strategies for rebuilding their communities and for enhancing individual and community-level recovery.

Powell and Wegmann tested the intervention with social workers and counselors from 37 agencies in New York and New Jersey after Sandy.

Participants reported substantial decreases in their stress levels and showed significant improvements on all of the other measures surveyed, the researchers found.

Caregivers who were newest on the job -- those with one to four years' experience -- benefitted the most, showing the greatest gains in their ability to recognize the signs and effects of stress and in their perceived ability to cope with taxing situations.

"This finding is of particular importance, as those with less experience in the social service field are at a higher risk for experiencing various forms of caregiver distress," Wegmann said. "Research has shown that those who perceive that they can actively cope with stressors or who have higher coping self-efficacy tend to have better health and mental health outcomes."

https://www.sciencedaily.com/releases/2019/07/190725092540.htm

Taking care of people with TBI: New tool could speed caregiver research

April 17, 2019

Science Daily/Michigan Medicine - University of Michigan

A traumatic brain injury happens in an instant: a battlefield blast, a car crash, a bad fall. But the effects can last a lifetime -- and can leave the survivor dependent on daily care from their loved ones for decades.

Now, a new tool seeks to give a voice to those caregivers, who spend countless hours tending to the daily needs of family members whose moods, thinking and abilities seemed to change overnight.

Developed by researchers from across the country who worked with hundreds of caregivers of people with TBI, it provides a new standard way to measure the physical, mental and emotional effects of caring for survivors of TBI.

The researchers hope it can form the basis for a new wave of research that could inform clinical care for patients and their caregivers, as well as, caregiver training and support programs, and even caregiver reimbursement policies.

They've published the results of a rigorous evaluation of the tool in a special supplement to the journal Archives of Physical Medicine and Rehabilitation, and are sharing the tool on several platforms for researchers.

They also hope the tool, called TBI-CareQOL Measurement System, could be useful to researchers who want to study caregivers of other patients whose "new normal" is very different from the one they had before, and isn't likely to change.

Many TBI survivors suffered their injury in the prime of life, and many during service to the nation. TBI is the most common injury among service members who returned from the wars in Iraq and Afghanistan, with nearly 384,000 service members and veterans affected. One-third of them, and another 90,000 civilians who sustain TBIs each year, are left with moderate to severe disability from their injury.

"Caregivers of persons with TBI are underserved and overlooked," says Noelle Carlozzi, Ph.D., the University of Michigan Medical School psychologist who led the effort. "The medical system treats the patient and sends them home, but behind many of our severely injured patients are family caregivers who we don't do enough to train, support or study in a scientific way."

Carlozzi heads the Center for Clinical Outcomes Development and Application, based in the Department of Physical Medicine and Rehabilitation of Michigan Medicine, U-M's academic medical center.

A team effort

In the new papers, she and her colleagues from Northwestern University, Wayne State University/the Rehabilitation Institute of Michigan, the Walter Reed National Military Medical Center/Defense and Veterans Brain Injury Center, Baylor College of Medicine/TIRR Memorial Hermann, and the University of Delaware lay out how they developed and tested the TBI-CareQOL tool.

The team worked with 560 caregivers who took care of 344 civilians and 216 military service members or veterans who had suffered a TBI more than a year earlier. They found the caregivers through their own institutions and through outreach efforts from the Hearts of Valor caregiver support network run by the Operation Homefront nonprofit organization, and by the Brain Injury Association of Michigan.

By taking time out of their already busy schedules to fill out banks of computerized questionnaires that the research team developed, the caregivers made it possible to create the new tool.

The researchers also got permission to look at the medical records of the patients the caregivers were taking care of, so they could know the severity of the injury and other information.

Thanks to this help, Carlozzi says, the TBI-CareQOL tool should enable a much stronger form of research on caregivers' health and quality of life. This could help bring new resources to this field of study.

Capturing many measures

The tool includes measures of how much of a sense of loss the caregiver feels for themselves or the loved one they're caring for, how much anxiety they feel about their ability to tend to their loved one's needs, how trapped they feel in their role as caregiver, and how much strain the daily demands of their loved one's care places on them. This latter measure includes feelings of being stressed, overwhelmed or even downtrodden by caregiver responsibilities.

Carlozzi notes that in addition to these new measures, the new tool includes standard measures of health-related quality of life used to study patients with many conditions. Called PROMIS measures, they have been previously validated in other studies; the new papers validate them among caregivers of people with TBI.

The team envisions that most caregivers who take part in future studies that use the TBI-CareQOL tool will do so on tablets, smartphones or computers. They've designed it so that caregivers answer questions most pertinent to them based on their answers to previous questions -- which means it takes up the shortest time possible but still gets complete information. A paper form will also be available.

The computerized version will be available through Assessmentcenter.net, as well as other online data capture systems. They will also make it available through a website that the team is developing. In the meantime, paper forms are available by contacting Carlozzi.

Potential uses

Measuring caregivers' current state, and how it changes over time, could become part of the routine clinical care for patients with TBI, she says. How well a caregiver is faring can affect how well the patient does, for instance with therapy, medications and behavioral health issues.

"We hope that in addition to the TBI-CareQOL being used for research, clinicians will adopt these measures to screen caregivers during office visits by patients with TBI, and figure out who needs additional services," she says, noting that caregivers usually attend their loved ones' appointments because patients with TBI can have trouble remembering or accurately reporting what their clinicians said or recommended.

Assessing caregivers could also help fine-tune the financial, social and service support they receive from various sources. Currently, some family caregivers who have lead responsibility for caring for current and former military service members with TBI can receive compensation for their time. So can some caregivers of people injured in automobile accidents in states with no-fault auto insurance.

But often these payments are not enough to provide a level of income similar to what they could receive in the workplace, even though many caregivers have to leave their jobs or cut back on their hours in order to care for a loved one with serious lasting issues from their TBI. That financial stress can often compound the emotional stress caregivers feel.

In upcoming papers, Carlozzi and her colleagues will report their findings from measures related to disruption of family life -- a topic that has special importance to military and veteran caregivers, who often have small children to care for at the same time they're caring for a TBI-survivor spouse. They also hope to do more to measure sleep and activity levels in caregivers.

"Thanks to the efforts of all our partners, and our funding from the National Institutes of Health and the Defense and Veterans Brain Injury Center, we're glad to share this validated, rigorous tool for assessing the quality of life of caregivers of persons with TBI, which we hope will provide a much-needed understanding of their lives and opportunities to help improve their care," says Carlozzi.

https://www.sciencedaily.com/releases/2019/04/190417111443.htm