Caring News
February 2016 -  Issue 4

Welcome to STC's Caring News

As our days begin to stay lighter longer we're reminded that spring is coming.  We hope this issue of Caring News brightens your day as well. 
This month we are featuring a short summary of the STC research. Later in the year we will post a comprehensive report in a special "Research Study" section on the website.
Check out a story from a STC group in D.C. that illustrates how their team was able to jump into action again and again and again over the course of many years. And enjoy a story from February's REALSIMPLE magazine - it is filled with caregiving advice from many perspectives...including STC.

The Role of Unpaid Volunteers in a Group Caregiving Approach:
Validation of the Share The Care™ Program
Short Summary of Findings by Amy Hegener, Researcher

The purpose of the study was to find out what effect participation in STC has on the three types of group participants: Primary Caregivers, Group Members and Care Recipients. There were three overarching Research Questions: 
  • Does participation reduce the level of burden experienced by caregivers?  
  • Does participation improve the group member's confidence in their caregiving skills?
  • Is there a relationship between the program's unique structure, emphasizing a shared group experience, and group members' satisfaction?
Data was collected through on-line surveys, followed by telephone interviews with a sample of survey respondents that were structured to capture more qualitative information.  A total of 134 people participated in the surveys and/or interviews.  Most were from the US however there were respondents from Canada, Australia, the United Kingdom and Hong Kong.

There are a few limitations to the study methods that merit mention.  First, with many on-line surveys, the sample consisted mostly of white, fairly well educated people who were not working full time at the time of the survey.  We know this is not a representative sample because of the hundreds of examples of STC groups that have formed across the nation and around the world by people of many ethnicities, levels of education and social-economic status.  Second, the study by design was retrospective, meaning that the experiences reported are those of people reflecting on an experience that has already taken place.  Future research, should funding become available, might take a closer look at the in-the-moment experience of all three groups or explore how they experience participation over time.    

Despite the limitations, the study's findings resonate to the many people who have participated in STC groups over the organization's twenty year history.  A full research paper is forthcoming, but some of the study's highlights include: [...]        

Download/View this entire preliminary 7 page PDF with charts
Later this year we will be adding a special"Research Study" Section on the website with an in-depth report.

Sheila and Amy will be presenting a 90 minute workshop:
"The Global Applicability of SHARE THE CARE™  An Evidence-Informed Caregiving Program" at the Aging In America Conference 2016 in Washington DC on March 23rd 12:30-2:00.   Gregory L. Johnson will also be presenting and M.C. "Terry" Hokenstad has volunteered to be the Moderator for this workshop.
If you have questions contact: 

To Go The Distance
STC Organizers
Over the last 20 years the same group of runners
have organized three times to share the care.

By Ron Stevenson

Share The Care came out in December 1995.  In January 1996, I read a review of the book in The Washington Post. My good friend, Damon Hart was dying of cancer. I bought a copy of the book, read it, and gave the book to Damon and his wife Joanie to see if they would be comfortable letting others into Damon's end of life struggles. Joanie thought taking care of Damon was her responsibility. Damon wanted to lighten Joanie's load so we organized an initial group meeting with friends from our running group. Once organized, the group took on a self-perpetuating energy that was amazing to observe. The group functioned beautifully until Damon's death a few weeks later. 

Damon and I had run many miles together. We had organized weekend wilderness runs for our friends. Running his final race with him, his family and friends was a privilege for all of us.

Damon & Ron

 " My husband, Damon, died of cancer twenty years ago at the young age of 51.  That was the unlucky part.  The lucky part was that we had a wonderful supportive group of friends and that Damon was relatively well and able to do the things he loved up until a few weeks before he died."    
Joanie Hart
Ten years later, Charlie Roberts, a member of the Share The Care group for Damon was diagnosed with brain cancer. Charlie was a retired Navy officer and also a member of our running group. His wife Nancy did an amazing job taking care of Charlie but was eventually overwhelmed with the demands of his care. 

The same core group of runners organized again to form a Share The Care group. Charlie's group expanded to include former military officers from his local chapter of the VFW. This time it was easier because we had done it before. Computers were more powerful and we knew how to use spreadsheets to organize contact information and to use email address groups to communicate the weekly schedule . Charlie's group lasted until his death about six months later.
Charlie _ Nancy
Charlie & Nancy

"I cannot say enough and am very thankful for the love, generosity, and assistance that our STC group provided to both of us. STC became a symbol to me of friendship and everlasting goodness that has stayed with me all the past eight years and will be with me always
Nancy McClintok
Fifteen years later, two members of the first two Share The Care groups, Richard and Roberta, were in a serious auto accident. They were on their way to a three generation family vacation in North Carolina. The family was traveling in two cars. Richard and Roberta's car with their granddaughter collided with another car, about 22 miles from their destination.

Richard and Roberta and the driver of the other car were seriously injured. Their eleven year old granddaughter suffered a concussion, a bloody nose and a severely jammed toe. She was in the back seat with Roberta whose back was broken in two places by the collision. Richard was driving and the impact pushed the engine of his car over his left foot breaking 22 of the 24 bones. He had to be cut out of their car.
Richard & Roberta
Richard & Roberta
After about a week in a North Carolina hospital, their daughter drove Roberta back to Washington, DC. An ambulance brought Richard to a Georgetown hospital. Roberta's back had not been completely diagnosed. She was trying to walk around their three story town house in Georgetown although immobilized by a removable, full upper body cast. It is amazing how much stuff falls on the floor when you can no longer bend over to pick it up. She couldn't drive to visit Richard and she couldn't drive to visit her doctor in Baltimore for a definitive diagnosis of her injuries.  

My wife, Pam, and I moved into their townhouse for a few days while we organized our third Share The Care group. Because they had participated in the previous two Share The Care groups, our longtime, now seriously injured friends, knew how it worked.

We had an excellent turn out for the very important initial meeting of participants. We explained how the group functions to friends, neighbors, and family most of whom had never participated in Share The Care. Our meeting room in a Georgetown real estate office was filled with our core group and about thirty other friends, neighbors and co-workers. We encouraged everyone to invite others. Over the next few weeks, the group quickly grew to about 100 participants. Our group's efforts were needed for about six months.

Share The Care has seven guiding principles that hold a group together through good times and bad. Principal #2 is; "It won't Work Unless Everyone Gains Something Personally". I witnessed this principal to be true. The life of every participant in all three groups was enriched by their Share The Care experience.

Our running group still meets once a week on the C & O Towpath along the Potomac River to exercise. Many of us are in our 60's 70's and 80's so now there is more walking than running. We meet outdoors all year, in all kinds of weather to exercise, and of course, to celebrate being alive with our friends.
Pam & Ron
Organizers Pam & Ron
"Ron and Pam were a driving force to organize the STG groups and they deserve a huge well-deserved thank you for reaching out to all three groups and coordinating the initial meetings and computer assistance."  
 Nancy McClintok


Real Simple Magazine

More Caregiving Articles from  REALSIMPLE Magazine that you may find interesting.
Care to Share?

We would love to hear your caregiving stories, see your videos, share your pictures or advice on our website. Your stories and thoughts will help others that find themselves on the  paths that you have traveled.

View some of your stories  here.
View some of your photos  here.
View some of your advice  here.

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American Childhood Cancer Organization formerly Candlelighters Childhood Cancer Foundation 
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