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mabendroth

Caregivers of Persons with Parkinson’s Disease be part of an Important Parkinson’s disease Study

24 posts in this topic

I’m sending this message today because I am a nurse researcher dedicated to helping family caregivers and would like to share information about a research study.  The purpose of the study is to explore factors that influence the well-being of caregivers of persons with Parkinson’s disease. The results will help us develop initiatives to assist caregivers.

Your input is important because it offers you an opportunity to be heard. You will help people in the health care field understand your caregiving experiences and find better ways to improve services for you and other caregivers.

Persons eligible to participate need to be 18 years of age or older and need to be currently or previously a caregiver of a living person with Parkinson’s disease.

Anyone interested in being in the study will complete an online survey which will take about 10 minutes. The survey items will include sharing your caregiving experiences (i.e. how you view caregiving) and asking some demographic questions. Your participation is voluntary. All responses will be kept confidential.   

If you are an informal caregiver of a person with Parkinson’s disease and wish to take part in this study or would like more information, please send an email to me, Dr. Maryann Abendroth, nursing faculty at Northern Illinois University, at mabendroth@niu.edu or call at (815) 753-0812. Participants will receive a $10.00 gift for being in the study.

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Hello everyone,

 

I’m sending this message with added information about my research study about caregivers of persons with Parkinson’s disease.

If any caregiver of a person with Parkinson’s disease is interested in the study I described in my previous post (Oct 1st), you can go directly to the following website to learn about the study and complete the survey.

 

http://tinyurl.com/2013caregivers

 

Your input is important because it offers you, as a caregiver, an opportunity to be heard. You will help people in the health care field understand your experiences and find better ways to improve services for you and other caregivers.  

 

As I mentioned before, you are eligible to participate if you are 18 years of age or older and currently or were previously an informal caregiver of a living person with Parkinson’s disease.

 

When you click on the above website, there will be a page describing the study and then you will be able to complete an online survey which will take about 10 minutes. The survey items will include sharing your caregiving experiences (i.e. how you view caregiving) and asking some demographic questions. Your participation is voluntary. All responses will be kept confidential. Cargeivers can receive a $10.00 gift for being in the study if they wish.

 

If you would like to learn more about this project, please email me, Dr. Maryann Abendroth, nursing faculty at Northern Illinois University School of Nursing and Health Studies in DeKalb, Illinois. My email is: mabendroth@niu.edu   My phone is: (815) 753-0812.

 

Otherwise you can click on the link directly and go to the study site. Thank you for your interest in this important project.

 

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Thank you for the $10, arrived quick! Hope my participation helped! :)

Edited by LoveMyHubby

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I'm glad you received it, and yes, your participation helped! We already have 150 caregivers who responded and are hoping for 50 more. If you come across other caregivers who may be interested, please let them know about the study.  Thank you and have a good holiday season.

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I just participated.. one question if I may suggest you adapt .. I am not retired, nor do I work a "full or part-time job".. I am a caregiver.. its a 24 hour a day job..  I am glad to particpate.

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Thanks so much for participating. I appreciate the recommendation and agree that caregiving is a 24 hour a day job. I had been a caregiver for my mom years ago. Have a good New Year!

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Dear Caregivers,

I wanted to thank you for participating in the study of caregivers of persons with Parkinson's disease. There are now enough participants so, I've closed the link to the survey. We will begin to anlyze the responses and come up with some conclusions.  If anyone has any questions about the study please email me at   mabendroth@niu.edu    

Your participation was appreciated!

Maryann Abendroth, Ph.D., RN

Northern Illinois University School of Nursing & Health Studies

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Yes I will let post the outcome of this study when the results are published. 

 

In the meantime, I published an article in January from another study related to caregivers of persons with Parkinson's disease. Here is the reference and a summary.

 

Abendroth, M., Greenblum, C.A., & Gray, J.A. (2014). The value of peer-led support groups among caregivers of persons with Parkinson’s disease. Holistic Nursing Practice, 28(1), 48-54. DOI 10.1097/HNP.0000000000000004.

Summary: Many persons with Parkinson’s disease are cared for by family members. The strain of caregiving can negatively affect the health of the caregiver and affect long-term care decisions, making caregiver support a priority. This study highlights the importance of peer-led support groups for family caregivers of persons with Parkinson’s  disease.The findings revealed four themes (illness uncertainty, broken connections, intimate connections, and a lifeline to other caregivers) that characterized the process of experiencing peer-led support groups.
 

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Dear Caregivers of persons with Parkinson's Disease,

 

I wanted to thank you for participating in the caregiver study from 2013-2015. As promised I am reporting our findings.

 

Two hundred twenty-three caregivers of persons with Parkinson’s disease across the United States took participated in the caregiver study by completing the survey during 2013 and 2014.  Twenty-nine states were represented in the study. The majority of participants were female (80%) who were on average 65 years old. Participants were 91% White (non-Hispanic) and most were married (77%).  The length of time they were caregivers ranged from less than one year to greater than 15 years. Most caregivers were wives of persons with Parkinson’s disease however, husbands and adult children also took part in the study. Persons with Parkinson’s disease who were under the care of the caregivers in the study had varied levels of mobility ranging from being bedbound to walking independently.

Overall, caregivers reported a moderate amount of risk of strain while caring for persons with Parkinson’s disease. Specifically, caregiver strain risk was reflected in several survey items which included being overwhelmed due to caring for the whole household (53%) and becoming like a parent due to caregiving responsibilities (71%).  

These survey Items could be found in the following article;
Abendroth, M. (2015). The development and initial validation of a Parkinson's Disease Caregiver Strain Screen. Journal of Nursing Measurement, 23(1), 4-21. doi: 10.1891/1061-3749.23.1.4.

Results from this completed study will be documented in an upcoming manuscript that has been accepted for publication.
Abendroth, M. (accepted, 2015). Psychometric testing and modification of the Parkinson's Disease Caregiver Strain Risk Screen. Journal of Nursing Measurement.

Thank you for your participation. I would value your assistance in future studies to benefit caregivers.

 

Maryann Abendroth, PhD, RN

Northern Illinois University School of Nursing and Health Studies
 

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Thank you for sharing the results! Will look forward to the full article. I'd forgotten that I'd done the survey!!!

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No offense but I find theses findings so odd. If 71 % felt like they had become a parent then add being responsible for the whole household's needs and the stress level should be more likely in the 80's or 90%.

 

I think wives are hesitant to complain due to thinking it is their duty. Which I actually agree with to a point. But when the caregiver's entire life is submerged, you have a recipe for disaster. No matter how I love my dh giving up my whole life to him is a bit much. JMO

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Thank  you for your comments. Let me clarify.  The overall risk for strain level was based on calculating the score of several items together which resulted in an overall moderate level of strain risk.

 

I picked 2 specific items out of the many items that made up the instrument to measure risk for strain.  The two that I picked out to share did have high percentages of positive responses, which I felt caregivers should know about.

 

You are so right - I have found over the course of studies that caregivers who are submerged as you say - need alot of support.  Thank you.

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Did you account for how long the patient had had Parkinson's, degree of severity of symptoms, whether patient had dementia and Parkinson's psychosis, ambulatory or wheelchair or bedridden, age of patient and caregiver, existing health conditions of caregiver, whether caregiver was caring for more than one person, whether the caregiver had family help? I know as a caregiver my answers to a survey would have been very different at five years from diagnosis, 10 years, 15 years, and now 18+ years.

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Thank you for your comment. Yes we looked at how long caregivers had been in that role and saw that persons who had been caregivers for a longer time were at a higher risk for strain. We are going to look at those variables even more closely in the next study. Thank you again!

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