Sunday, June 18, 2017

Quality of Life of Caregivers

The following is from a survey conducted by Dr. Maureen Mathews with assistance from the following medical professionals and Retreat & Refresh Stroke Camp staff:  Judith Beck, Michael Gibbons, Anna Bogner,  Jan Jahnel, Lauren Kramer, Clayton McNeil, Deepak Nair, Marylee Nunley,  Larry Schaer, Teresa Swanson-Devlin, Candace Couri, Manas Upadhyaya,  David Wang, and OSF HEALTHCARE, Peoria, IL. 
Quality of Life of Caregivers Attending a Stroke Camp

• Loneliness, depression, and isolation are common feelings among caregivers of stroke survivors. 
• We have shown previously that the Retreat & Refresh Stroke Camp (RRSC) offers emotional support to caregivers
• In this study, we focus on caregivers' quality of life to more appropriately plan programs to meet caregivers' needs. 

• Quality of life of stroke caregivers attending the RRSC camps in 2015 was assessed.
• Adult Carer Quality of Life Questionnaire  was utilized. 
• Emails were sent to all caregivers with a link to the survey on Survey Monkey.

Adult Caring Quality Of Life  Questionnaire 
• The Adult Carer Quality of Life Questionnaire consists of 40 weighted questions (0-3) with both positive and negative wording. 
• High quality of life is indicated by a score of 81 or greater. 
• Moderate quality of life is indicated by a score of 41-80. 
• Low quality of life is indicated by a score of 0-40. 

[Blog Editor Note] The questionnaire's subcategories are indicated in the graph below and the age groups are identified by color code. I apologize for the graph's blurry print. Dr. Mathews' original graphic is much better than I was able to reproduce on this blog.

There are eight subcategories on the questionnaire: 
• support for caring 
• caring choice 
• caring stress 
• money matters 
• personal growth 
• sense of value 
• ability to care 
• care satisfaction. 
• Scoring 0-5 is low, 6-10 is midrange, and 11+ is high.

Quality of Care by Age Group
Adult Carer Quality of Life Questionnaire (ACQOLQ)

  • 41 caregivers responded to the survey. 
  • 41.03% of caregivers provide care greater than 70 hours per week. 
  • Average duration of caring was 7.34 years. 
  • The average caregivers' age was 61.55 (40/41 responses) ranging from 29 to 80 years old. 
  • 85.37% of respondents were female and 95% were Caucasian. 
  • The average Adult Carer Quality of Life Questionnaire score was 66.94, indicating a mid-range quality of life. 
  • Seven had a high quality of life and 4 had a low quality of life. 
Of the eight subcategories, 
  • support for caring averaged 6.4; 
  • caring choice, 7.26; 
  • caring stress, 8.49; 
  • money matters, 7.83; 
  • personal growth, 8.07; 
  • sense of value, 9.13; 
  • ability to care, 10.15; and 
  • care satisfaction, 9.61.

The Adult Carer Quality of Life Questionnaire provides a benchmark for quality of life assessment for the RRSC caregivers

We can surmise from this limited sample the camp may play a role in improving the self-worth and confidence of caregivers in addition to feelings of appreciation due to relatively high ‘ability to care’ and ‘carer satisfaction’ scores on average. Moreover, RRSC must reach out to at-risk populations where stroke incidence is notably higher. 

The Camp Directors will use this information to develop more opportunities for caregivers to develop strategies for increasing caregivers freedom, money management, and general support for caregivers.

[Blog Editor Note] Thank you Maureen for giving of your time and effort to produce this. You have been a long time, valuable supporter of our camps and I appreciate your involvement very much. 

• Bugge, C., Alexander, H., & Hagen, S. (1999). Stroke patients‚Äô informal caregivers. Patient, caregiver, and service factors that affect caregiver strain. Stroke, 30, 1517-1523.

• McCullagh, E., Brigstocke, G., Donaldson, N., & Kalra, L. (2016). Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke, 3, 2181-2186.

• Opara, J. & Krystyna, J. (2010). Quality of life of post-stroke patients and their caregivers. Journal of Medicine and Life, 3, 216-220.

• Van Puymbroeck, M. & Rittman, M. (2005). Quality of life predictors for caregivers at 1 and 6 months post stroke: Results of path analyses. Journal of Rehabilitation Research and Development, 42, 747-760.

• Williams, L., Weinberger, M., Harris, L., Clark, D., & Biller, J. (1999). Development of a stroke-specific quality of life scale. Stroke, 30, 1362-1369.

Sunday, June 11, 2017

A Time for Everything

Phil Bell is retired pastor from the University Baptist church in Macomb, Illinois. He had a massive ischemic stroke January 4, 2012. He still writes articles every couple of months in the local newspaper under the Street & Steeple section. That is a place where local pastors contribute every week in rotation.
By Phil Bell

It has been announced that the former LaMoine Hotel building has been converted into an extended care facility. That building has undergone many transformations and uses since its’ initial purpose. My wife and I remember, as, I’m sure, some of you do, going to the Tack Room café for lunch in it. For a time, Macomb’s daily newspaper called the building it’s home. You may well have your own identification with it. 

 In some ways a building is like a person. There are seasons of life, each with its’ own struggles and purposes. An Old Testament book of our Bible puts it this way, “There is an appointed time for everything. There is a time for every event under heaven.” The Bible tells us that Solomon was the wisest man who ever lived or who will ever live. He wrote, under the inspiration of the Holy Spirit, the book of Ecclesiastes from which the preceding quote is taken. Ecclesiastes 3, beginning with verse 1, goes on to list some of those events, such as “a time to give birth, a time to die; a time to plant, a time to uproot what was planted; a time to throw stones and a time to gather stones; a time to weep and a time to laugh; and a time to keep and a time to throw away; among others. 

We Baby Boomers probably best remember these words from the Byrds’ song, “Turn Turn Turn.” It may be the only pop and rock song taken directly from Scripture! We must accept the seasons of our lives much the same as we accept the calendar’s seasons. For instance, we could refuse to acknowledge that here in Macomb, the temperature gets into the eighties and nineties in summer and continue to wear sweaters and coats, but we’d be very uncomfortable! 

Every so often, each of us finds him or herself in a season of life not to her or his choosing. I, certainly, would never have chosen to be living in this season, (as a stroke survivor), of recovery! I could refuse to accept that and be miserable all day. I admit that pretty much defined my first weeks after the stroke. Even now, while I’m on board with physical therapy once a week at MDH with PT, Victor and at home every other day, except Sunday, with home therapist, wife, Nancy, I don’t really enjoy doing it!! 

Of the plethora of seasons, there is no season for sinning and another for restraining from sinning. God expects us to refrain from sinning in all of life’s seasons! You, too, may be like I am, in that you long for past seasons of your life. I’ll refer you to a phrase I’ve heard, “Things aren’t what they used to be, but, then, they never were!” There’s a lot of truth to that. 

I believe Solomon was saying, not only, that there are seasons of life, but, also, to be happy and fulfilled we must, with God’s help, embrace the particular season in which we find ourselves! I’ve tried to do that with my writing. 

At present, I have no less than seven books at some stage of completion. Including “Finding Purpose In Pain,” an elaboration of a previous Street & Steeple article. One fiction novel, “Few Expectations, is finished and my most enjoyable books to write are “God’s In His heaven And All’s Right With The World,” an account of the Cubs winning the World Series Championship, and three Bible book commentaries I’m authoring : “More Than Conquerors” ( Romans ). “Equality With God Something Expendable” (Philippians), and “I Retract And Am Instructed” ( Job ).  

This article’s point is: Live your life fully and passionately, for, indeed, there is a time for everything and we must embrace the season in which we find ourselves or be miserable.

Sunday, June 4, 2017

Boston Stroke Camp

Last June (2016) we held another weekend camp (Friday-Sunday) in Boston, Massachusetts. Here's a look at the people and some of the activities we enjoy. We provide camps for stroke survivors and their caregivers throughout the country. Please call us to see if we have a camp in your area. 800-688-5450. To learn more about us go to our website:

Some wonderful Boston volunteers and our Camp Exec

More wonderful Boston volunteers and RRSC staff