More than ten times a day, 67 year-old Margie helps her husband get up to use the bathroom, eat a meal or get in and out of bed, and struggles to push his wheelchair up the ramp that provides access to their home.
Margie is one of the estimated 42.1 million unpaid, informal caregivers who each year, provide support valued at more than $450 billion to adults, usually family members, with physical disabilities and other conditions that impose limitations on daily activities. And like many informal caregivers, she suffers from chronic back, shoulder and knee pain from the physically demanding work -- pain that sometimes prevents her from caring for her husband.
According to a new study from researchers at The Ohio State University, Margie's experience is common, particularly among the estimated 14 million "high burden" caregivers (defined by the National Alliance for Caregiving and the AARP as people who spend more than 21 hours a week assisting care recipients with activities of daily living).
"Almost all of the caregivers who participated in our study said they experience significant musculoskeletal discomfort related to caregiving activities, and that this discomfort can interfere with their ability to provide care, work and participate in life activities," said Amy Darragh, PhD, an occupational therapist at Ohio State's School of Health and Rehabilitation Sciences who won a pilot grant from the Ohio State Center for Clinical and Translational Science to study caregiver injuries.
The research, based on questionnaires and interviews with 46 informal caregivers, showed that across four weeks, 94% reported experiencing musculoskeletal pain in at least one body part, with the lower back (76%), knees, shoulder and wrist (43% each) being the most common sites for discomfort. More than 78% of caregivers said that the pain impacted their ability to provide care, and 66% said the pain impacted their overall quality of life.
Darragh conducted the study with Carolyn Sommerich, PhD and Steve Lavender, PhD from Ohio State's Departments of Integrated Systems Engineering and Orthopaedics and Marc Campo, PhD from the Department of Physical Therapy at Mercy College (Dobbs Ferry, NY). The research team asked caregivers to identify the tasks they felt were most physically demanding. Caregivers reported that transfers, toileting, bathing, stair navigation, and recovery from falls were the most difficult to perform.
"Interestingly, professional caregivers report similar experiences, but they have access to both training and technology that help them reduce their risk of injury. Informal caregivers may not receive training in how to handle patients without injuring themselves or their loved one" said Darragh. "Our research offers a first look at which tasks may carry the highest risk of injury, and may inform development of interventions to protect these high-burden caregivers."
The study results, published in the Journal of Applied Gerontology, are helping Darragh and her team to do just that.
Using the pilot study's findings, the team, supported by a grant from the Cummins Endowment, are developing and testing an intervention protocol that is efficient, cost effective and flexible, and can be used across multiple diagnoses and care environments. The team is currently validating the protocol and hopes to test it in a larger population in 2015.
"Our protocol is considering multiple factors in order to reduce the risk of caregiver injury -- the task itself, the frequency of the tasks, the home environment, the relationship between the caregiver and care recipient, access to resources -- factors that are important to consider together," said Darragh.
Darragh, who is a nationally recognized expert on caregiver injuries and safe patient handling, suggests the following tips for informal caregivers, particularly those who provide high intensity care that requires physically demanding tasks:
1) GET TRAINED. Local resources, including hospitals, the Red Cross and area agencies on aging will offer training classes for caregivers. The National Alliance for Caregiving has an online library of resources that can help.
2) GET ORGANIZED. Document everything you are doing and keep a list of your activities. Maintain good records, keep track of who you talk to. File notes on resources and support groups.
3) GET HELP. Don't be afraid to ask family members and friends to help. Be willing to accept help when it's offered. "Keep a list of big and small things you could use help with right by the phone so when people offer, you have it right there," suggests Darragh. If you ever feel like you can't keep yourself or your care recipient healthy and safe, Darragh suggests it's time to seek additional resources. "Caregiving is hard, and as illnesses change, needs change. It's OK if you aren't able to do it on your own anymore."
4) GET CARE. Take care of yourself! Keep healthy. "Caregivers have a hard time putting themselves first sometimes," said Darragh. Eat well, sleep well, see your physician regularly. Be sure to take small breaks for yourself every day.
5) GET INFORMED. Learn about available community resources such as adult day care, respite programs, support groups and volunteers that can help. Even if you don't need the resources now, you may later.
"Millions of people and our healthcare system rely on these caregivers. Many caregivers value caring for a friend or family member, however they may also be at risk of pain, discomfort or injury from performing caregiving activities," said Darragh. "The more we know about what they go through, the better interventions, resources and technologies we can develop to keep them and their loved ones safe and healthy."
Materials provided by Ohio State University Center for Clinical and Translational Science. Note: Content may be edited for style and length.
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