Background: Loneliness, depression, and isolation are common feelings among caregivers (CG) of stroke survivors. We have shown previously that the Retreat and Refresh Stroke Camp (RRSC) offers emotional support to CG. In this study, we focus on CG quality of life (QOL) to more appropriately plan programs to meet CG needs.
Methods: QOL of stroke CG attending the RRSC in 2015 was assessed using the Adult Carer Quality of Life Questionnaire (ACQOLQ). Emails were sent to all CG with a link to the survey on Survey Monkey.
Results: The ACQOLQ consists of 40 weighted questions (0-3) with both positive and negative wording. A score of 81+ indicates high quality of life and scoring 0-40 indicates a low quality of life. There are eight subcategories on the questionnaire including: support for caring, caring choice, caring stress, money matters, personal growth, sense of value, ability to care, and care satisfaction. Scoring 0-5 is low, 6-10 is midrange, and 11+ is high. 41 CG responded to the survey. 41.03% of caregivers care greater than 70 hours per week. Average duration of caring was 7.34 years. The average CG age was 61.55 (40/41 responses) ranging from 29 to 80. 85.37% of respondents were female and 95% were Caucasian. The average ACQOLQ score was 66.94, indicating a mid-range QOL. 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 ACQOLQ provides a benchmark for QOL assessment for the RRSC CG. We can surmise from this limited sample the camp may play a role in improving the self-worth and confidence of CG 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 CG to develop strategies for increasing CG freedom, money management, and general support for CG.