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Are you caring for an elderly parent? [Study] 
Started by mbastaw
06 Mar 2014, 4:06 PM
Dear Virtual Hospice community,

My name is Marina Bastawrous and I am a 3rd year PhD student at the University of Toronto. With the permission of the community moderator, I'd like to tell you more about my research and invite you to participate by taking a simple survey. Below are the details. Thank you for the opportuntiy to share this with you!

Are you caring for an elderly parent? Would you like to share your experience to help others in the future?

Our study is looking for adult children who are caring for a parent and are in contact with other caregivers either online or in person.

The goal of the study: To learn about the online and in person peer support relationship between adult children and other caregivers.

Who can participate: Individuals who are: 1) 18 years or older; 2) Living in Canada; 3) Caring for a parent; 4) Helping their parent with any of their usual activities or medications and 5) In contact with other caregivers online or in person.

Your role: To answer an online survey that should take 30-45 minutes to complete. You will be able to stop and resume the survey at any time and do not need to finish it all at once. At the end of the survey, you will be invited to participate in an optional 45-60 minute telephone interview. The goal of the interview is to learn about your experiences and relationship with other caregivers in more detail. The interview is optional and you may choose to only complete the survey.

To learn more about the study and to take the survey please visit:


For more information: Contact
Marina at 416-978-5694 or marina.bastawrous@utoronto.ca


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Reply by moderator | modératrice
06 Mar 2014, 4:23 PM
Welcome Marina. 

Thank you for providing this opportunity to the members of our community. So often people share on the forums and say "if I had only known before" or "thank you for that suggestion, it so helpful to have someone to talk these things through with".

Our members look for support, but more often than not, they also want to help others. There's no guidebook that has all the answers on how to care for an aging parent. Every situation is different. That's the real value in having a community of people who have been there and who are there now to help out.

I'm sure some of our members will be happy to complete your survey and help out.

Marina, will you share the results of your survey with us when it is published?
We love to see the results of our contributions.

For example:

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Reply by mbastaw
06 Mar 2014, 4:29 PM
Thank you for this warm welcome, Colleen! I truly look forward to learning from the experiences of the Virtual Hospice community.

I can't wait to share the results with everyone. In the past, I have held webcasts to present my research and will certainly send out an invitation to the community when the study is complete.
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Reply by moderator | modératrice
09 Mar 2014, 2:16 AM
Does anyone have any questions for Marina about this study? 
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Reply by mbastaw
09 Mar 2014, 4:18 AM
I would be more than happy to provide additional information and to answer any questions Smile
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Reply by kathykastner
11 Mar 2014, 1:09 PM
Hi Marina,
My own involvement is with my most delightful 93-year old father in law (who has all his wits, and regularly bemoans not having a woman in his life :)  He lives in an assisted living facility, where all residents are mobile, so is surrounded by fellow 70, 80 and 90 year olds.

Your survey made me reflect on how little interaction the adult children have with one another when we see eachother at social events - although we'd have lots to share and compare and maybe even effect some change.

Nor have I ever seen adult children taking their parents out in groups (like used to happen when mothers/parents got together and took their babies out)

From my involvment with tweet chats aimed at adult children taking care of their parents, I know the value of on-line, peer to peer support/connectivity - but I think these are still very early days of virtual connection.

And now, finally... my question:
With these being early days in caregiver connectivity, might I ask what do you hope to accomplish with results?
Upwards and onwards!

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Reply by mbastaw
11 Mar 2014, 8:19 PM
Thank you so much for sharing a little about your caregiving experience, Kathy! It has reminded me (for the second time this week) that although caregiving can be challenging, it can also be joyous and rewarding. As a researcher, I find these reminders important because it encourages me to learn "what is going well" for caregivers in addition to capturing the challenges they face. 

One of those things that I think is "going well" but could be even better is support exchange bewteen caregiving peers. In my own life, I know that I always value sharing my struggles and victories with others who have gone through similar experiences (e.g. other PhD students when it comes to school-related issues). Canadian Virtual Hospice really highlights that this is the case with family caregivers as well! Who better to give you advice, emotional suport and relevant information than another caregiver who can relate to what you're going through? 

My research really focuses-in on that caregiver-to-caregiver relationship.  I am hoping to learn how caregivers interact (online and in person) and how they develop relationships with one another.  I hope that gaining this knowledge will help us improve caregivers' ability to connect and receive support from one another in the future!

Thanks so much for starting the conversation, Kathy. I really hope others join in! I look forward to discussing further and answering other questions :)


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Reply by NatR
11 Mar 2014, 10:39 PM
Hi Marina,

my apologies for not welcoming you here....although as a caregiver I was never in charge of my own parents....they lived too far away.

I can say that despite being "consulted " or made aware of health changes , or problems with care or a birthday party plan etc, I still felt excluded and unable to give much input...because of distance and time factors.  

it is very hard...as the one child with POA rights will make decisions...and everyone else necessarily has to nod their head even if they would have liked to add something to the mix.  

I have have heard this from a friend as well...she feels very much on the edge of the situation as she is not the decision maker...and feels her input isn't valued or considered

i can comment on what Kathy said, about how families do not take out their parents, do not do "play dates" as moms do for their children...and of course our senior family members need and yes deserve chances to interact with family and friends.
It's easier said than done.
i must also say that generally, in the senior age group it's difficult to gain interaction because our seniors may have hearing, vision, ability restrictions, their former friends are no longer alive, or nearby, and opportunities to get them together are few.
Add weather conditions such as our Canadian winter to complicate things...for outings:) 

as far as caregiver to caregiver peer relationship go....It takes time and opportunity to connect them...whether in community or online due to the very difficult  job and the extent of caregiving duties...always on duty, too exhausted to get out...can't take your family member with you...so many reasons.

it takes effort to find the best times to chat, interact etc.  From my experience caring for a family member, not a parent....there are times when you just don't care anymore because you are too tired, lack of sleep, overloaded - that you just want to be alone and not talk, not even able to concentrate on a book or program, or the energy to go for a walk.
and the overload is the problem....burnout is next...

i know that working as a caregiver in facilities we all searched each other out, made friends with our team mates and made a point of coffee before work, a walk or lunch on a day off, or a chat before or after shift..trying to support each other, talk about caregiving strategies to deal with time constraints or residents who were challenging.  

Caregiving is definitely better shared, whether family or facility....and for many to find online peer support takes internet, interest, time and energy to search out the right group ot forum.....it's really like looking for a needle in a haystack for many. Bi also think it's an individual thing...what works for one may not work for another.

i am sure others will comment and perhaps have a different experience.  I am sure that if you walked up to family members caring for their parents...say in a hospital, or on a shopping trip, or in a restaurant...or wherever you find caregivers and parents...that a lot are unaware of online support and would also find it hard to make the time to attend chats, conversations...they are busy working,  doing laundry, shopping for food, running on empty....raising children as well, sandwich generation.

Thats my feeling, and I hope it helps to hear from one of so very many caregivers out there.

best of luck with your research and survey.  I look forward to hearing how the results turn out;)
good evening,
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Reply by Digger
12 Mar 2014, 3:36 PM
Hi Marina,

I don't meet the criteria for your study but as a hospice volunteer i see how children interact with their parents/my clients.

The broader issue of communication between caregivers often focuses on the challenge of a specific illness. For example, Parkinsons and Alzheimers/dementia situations where support groups bring people together.

Another aspect is with impending loss and grief.

The two questions I wished i had asked my father before he died:
Where do you want to die? and What are you most afraid of?

I am bolder now and most folks i see at the end of life apprecriate that approach.

Perhaps communication needs to be preceded by some direct questions, these create the context for a deeper dialogue. We tend to ramble otherwise. The dying don't have too much time for that.
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Reply by moderator | modératrice
12 Mar 2014, 3:40 PM
Welcome back Digger. 

It looks like you and Kathy are thinking on the same wave length regarding communication and to ask questions and have the conversation. See the thread Kathy started here:

When to start the conversation about 'end of life' wishes/planning 

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