Using Your Caregiving Knowledge to Help Researchers Help Others
I realized recently that I’ve been in caregiving mode for about a decade now. I took care of my mother starting in 2005 when she was placed in a nursing home near me following her Alzheimer’s diagnosis. By the time she died in 2007, my father had moved into a duplex about a mile from where I live. He ended up moving in with me in 2010 after he suffered a few falls (luckily with no broken bones) and was unable to put his compression stockings on by himself.
Dad’s health seemed to remain stable for the next three years until he took a tumble on my front step and fell on his back, which already kept him in chronic pain. We ended up in the emergency room to ensure that he didn’t have any broken bones. Fortunately, he didn’t and the medical staff asked him to check with his primary care physical later in the week. I joined Dad at that appointment where his doctor did a double take when he found that Dad’s blood pressure was exceptionally low. We were immediately sent back to the emergency room and Dad was admitted to the hospital with heart issues. After a week in the hospital and another month in a rehab facility, Dad was released to return home with the assistance of home health. With that service, he received a visit from a nurse once a week, a visit from an aide to help him shower twice a week, and a physical therapist who came in 2-3 times a week during various stages. Yet throughout that period, I was the main person who dealt with his day-to-day needs. Because of that role, I’ve had to learn a lot of really important lessons over the past year about caregiving that differed from the assistance I gave to Mom. I also have had to learn a lot of important lessons about caring for myself while serving as a hands-on 24/7 caregiver.
Throughout this tenure as a caregiver, I also have been working on (and trying to complete) a graduate degree. I understand the drive to understand a situation in order to help others and that many researchers struggle to find people willing to participate in a study.
Based on both of these experiences, I’d encourage caregivers who are part of this HealthCentral community to consider participating in a new study being conducted by Amy Fuhrmann, M.S. and Dr. Mary Ann Hoffman, professor and co-director of the counseling psychology program at the University of Maryland, College Park. They are looking for unpaid caregivers who are at least 18 years of age who provide at least three hours of care each day to participate in a study focused in understanding caregiving experiences. They will ask participants to complete two online surveys as well as five writing exercises. These assignments will be spaced out so you’ll only have to complete one per week over a five-week period (which should be manageable for most caregivers). The researchers believe that these exercises will take less than a half-hour of your time each week. If you would like additional information about this research, please contact Amy Furhmann at firstname.lastname@example.org or follow this link to get to the screening questionnaire.
Your participation will definitely provide valuable insight to these researchers about the challenges of caregiving. The added benefit of participating in this study is that you will be doing something good for you – reflecting on your caregiving. By writing down what you’re dealing with, you’ll get a chance to stop (which we caregivers rarely do) and think about what you’re facing. This chance to reflect may lead you to new insights that you may previously not considered. In fact, you may find – like I did – that regularly writing about your caregiving experiences helps you become a better caregiver in both the short run as over the long haul.
And if you are interested in participating in other studies related to caregiving, you might want to check out the research registry at the Family Caregiver Alliance’s National Center on Caregiving. This registry offers a professional listing of publically and privately supported surveys, studies and clinical trials that are targeted to caregivers who are helping someone with a chronic disabling health condition. You may be able to find other studies in which you can participate.
Primary Source for This Sharepost:
Family Caregiver Alliance. (ND). Research registry.
Richards, K. L, (2014). Online study for caregivers recruiting. HealthCentral.com’s Chronic Pain site.