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. 
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Quality of Life of Caregivers Attending a Stroke Camp

Introduction

• 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. 

Methods 

• 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)

Results 

• 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.

Conclusions 

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. 

References

• 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.
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