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Topic The effects of writing about being a Caregiver Go to previous topic Go to next topic Go to higher level

By jsmitch On 2014.07.20 14:05
Let me introduce Amy Fuhrmann, M.S., a doctoral student under the supervision by Mary Ann Hoffman, Ph.D. in the Department of Counseling, Higher Education, and Special Education at the University of Maryland, College Park.

Amy is doing research to better understand the experience of caregivers. More specifically, her research is designed to explore the effects of writing about your experiences as caregiver.

I will let her explain in more detail. I just wanted everyone to know the research is genuine.


By Fuhrmann On 2014.07.20 18:21
Thank you so much, Jim.

I am working on research to understand the experiences of caregivers like yourself and to provide some type of care for you as well.

Below, you can find information about the study and a link to participate!

Caregivers rarely get the attention they deserve in research, and I hope that this can change things for the better.

Online Study for Caregivers

Are you an unpaid caregiver for a loved one? Do you provide care on a daily basis for at least 3 hours per day? Are you at least 18 years of age? If you answered “yes” to all of these questions, you may be eligible to participate in a study conducted by researchers at the University of Maryland.

The study explores participants’ caregiving experiences through 2 surveys and 3 writing exercises. Some people find writing as a way to record what happens to them or as a way to talk about difficult experiences. There has been great interest in recent years with writing to understand important experiences in your life.

Often times care for a patient takes precedence, and the wellbeing of the caregiver is largely ignored. This is your chance to help other caregivers and help researchers to develop ways to improve the lives of caregivers.

The 2 surveys and 3 writing exercises will be spaced out so that you complete one per week for five weeks. It will take approximately 15-25 minutes of your time each week. You can complete the entire study online. This research is being conducted by Amy Fuhrmann, M.S. and Mary Ann Hoffman, Ph.D., professor and co-director of the counseling psychology program at the University of Maryland, College Park. If you would like to participate in this research, please contact Amy Furhmann at or follow the link below. To participate, you must meet the eligibility requirements of the screening questionnaire.

Thank you!

By Lynnie2 On 2014.07.21 12:16
I am a caregiver and over 18 but don't give care for 3 hours per day. My spouse isn't that needy yet, although I do kept him on track for certain things and drive him around now.
I won't qualify for the study but here are some of my thoughts.

Last Spring we went to a Parkinson's Conference (not in USA) and they had four speakers for the day, plus a room full tables with a various things to help the PWP and the caregivers . It was an interesting day, but my spouse didn't get as much out of it as I did. The speakers who where doctors were showing graphs, etc and explaining their research, but my spouse said one was talking too fast. It takes him longer to comprehend things and very slow reading.
They did have an interesting lady speaker who had Parkinson's and we could have listen to more of her thoughts. Unfortunately she was the last speaker of the day. She even had us up dancing!

There was a university student who wanted caregivers to join a study. He would call them for an interview which would take about an hour.
I signed up, but he hasn't called yet.

Anyway, a it is my experience as a caregiver is hard, especially watching your spouse's health decrease, especially when he doesn't help himself a great deal. I'm not in his shoes though, so it's unfair of me.........
To the many caregivers out there.........there are good days and bad days so we just have to take the days as they come and hope their progression is slow
Take care

By carman96 On 2014.07.23 12:36
I just completed the first survey. Interesting. Of course in the middle of it I had to help my husband to the bathroom. Then he fell on his butt and I had to help him up. I helped him back to bed and finished the survey.
One of the questions should be "were you able to finish this survey without being interrupted? Yes or no?"
Don't know if participating will help anyone but I think any research done on caregiving is a good thing.

By Fuhrmann On 2014.07.23 14:43
Thanks for your kind words, Lynnie and Carman.

Lynnie - perhaps you do qualify for the study, as driving your husband around, helping to prepare meals for him, etc. can all be seen as "care." I hope you will consider participating.

Carman - Your insights are wonderful. Often, as psychologists, we find that people caring for a loved one do not have time to come to an hour of therapy because of all that they do. Your description confirms that reality.

Thank you all for taking an interest in this. I want to shine a bright light on your experiences to help clinicians of all kind to understand how to help YOU.

I noticed that several people indicated interest in participation but did not complete the first survey. If you did not answer all of the items in the survey, I cannot contact you to begin the writing. I encourage you to retake the survey by clicking on the link in my initial post.

Very best,

By carman96 On 2014.07.24 10:55
Amy, thank you. It is nice to know that there are researchers that are concerned about us caretakers. If we're not physically and emotionally healthy then the people that we care for are not getting the best care possible from us.

By Fuhrmann On 2014.07.24 17:52
Absolutely. I am thinking of doing a follow-up study about the physical and psychological well-being of caretakers.

By jcoff012 On 2014.07.24 18:35
My PWP is my husband, who was dx five years ago. We are in a rather unique situation in many ways, because we come into this journey with a good basic understanding of PD, after his Mom's twenty two years plus battle.

Therein is the rub...while he has the tremors, blank stare, and other problems, he is still highly functioning. Of course, we know that can end rather abruptly. He needs me more for the bolstering of his ego as his body is failing, and as a guide along the way. Our journey has been more of one of balance, mental, and physical decline, which does not require the intense caregiving as many on the forum. Are you interested in those experiences, too? As always, I am here because of the support, kindness, and the knowledge that only someone who has gone before can impart...and to offer whatever we are learning, or have learned in the past. Jane

By Fuhrmann On 2014.07.24 20:33
Hi Jane,

I believe that each person's unique experience can provide valuable perspective about caring for a loved one. I would love if you would be part of the study. Please remember that preparing meals, driving, paying bills, etc. can all be considered "time spent providing care."

This community of people who -- as you so eloquently said -- offer support, kindness, and knowledge is truly tremendous. I thank you all for sharing what you have learned with me.

By Saldev On 2014.07.26 10:37
I have been writing about my experience as a caregiver of a PWP for a decade. I am collecting my essays for a book. I have found writing depressing at times, deepening my grief and rage, but eventually healing and calming. I would be happy to participate in the research project.

By HangingOn On 2014.07.27 09:53
I started the questionnaire. First of all using acronyms is not the best thing without an explanation of what they mean. First questionnaire in my opinion did not apply to Parkinson's Disease from me "Googling" what IES-D meant. Might be a great idea, but for someone not in that field of study, need definitions of the acronyms.

By Fuhrmann On 2014.07.27 16:51
Hi Saldev,

It sounds like you have a great deal to contribute! It'd be great if you would participate in the study, and you can do that by clicking the link in my first post.

Hi HangingOn,

You make a good point about the acronyms. One of the reasons for use of acronyms is to avoid explicit labeling of what is being measured. For example, if we as researchers tell someone that we are measuring if someone is a good employee, that person might know to respond in ways that would make them look like a good employee. The ambiguity allows for more integrity in the research. That being said, I really appreciate your feedback, and will consider an alternative to the acronyms.

By Fuhrmann On 2014.07.30 16:41
As a follow up to my last message, I want to let you know that I have changed the survey to be more straight forward in terms of labeling the scales.

Thank you all so much for your interest and participation.


By Fuhrmann On 2014.09.13 11:18
UPDATE: I have changed the surveys to make it easier (and faster) to participate.

Thank you to everyone who has taken an interest in this study. I continue to hope that it can provide some valuable information and support for caregivers like you.

By Mary556 On 2014.09.15 07:12
Thanks so much for your work, Amy. I went to your web page a few weeks ago but have been stessed for time and did not complete the survey yet.
Just wondering what is your timeframe for someone to participate, i.e. will you stop accepting responses as of a certain date, or do you have a goal number of participants before you begin your actual study?

God bless all caregivers and their loved ones.

By Fuhrmann On 2014.09.15 12:26
Hi Mary,

I am accepting new participants through October 16th. I would welcome you to join whenever you can take time for yourself between now and then.

Very best,

By Fuhrmann On 2014.09.24 13:23
And here's the online brochure!

By Fuhrmann On 2014.10.02 16:48
I'm so happy to say that I can now "thank" participants with more than words! For past and future participating caregivers, you will be able to choose from a $10 Amazon or Starbucks gift card upon completing the study!!!

By jcoff012 On 2014.10.02 19:39
Amy, as I said in a personal email, no need to do more than say thank you. I would rather believe our participation helps your research or helps someone else to continue to improve the lot of caregivers...If you feel the need to do something, please donate to a worthy cause. I am proud of you for caring to do this and did not expect any reward. Thank you again and best of luck in the future.

By Fuhrmann On 2014.10.06 14:24
Thanks for your kind words. I am more than happy to do what I can to capture the experiences of caregivers. I also want to say that if people do not want to accept the $10 gift card, I will make a donation to the charity of their choice.

By moonswife On 2014.10.06 22:01
Amy, I am sticking strictly to the 20 minute rule, but I have so much to say that I am saying in chronologically. If your study is to see if we feel less stressed after we write, consider it is stress NOT being able to type fast enough to satisfy my brain. As for the donation, give to a hungry child. Ask any elementary school secretary. She knows who comes to school on an empty stomach.

By Daybyday On 2014.10.09 15:04
How about donating any unclaimed donations, like mine for example, to the dear dedicated administrator of this wonderful website which is, to some caregivers, a real lifeline. So much great information here. Thank you so so much.

By makrivah On 2014.10.09 23:47
I agree! This forum MUST stay in operation. Great idea.

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