An Evaluation of the Family Informal Caregiver Stroke Self-Management Program.

BACKGROUND: Caregivers are often unprepared and overwhelmed with the responsibilities of providing care to stroke survivors, which can lead to negative physical and psychological effects. PURPOSE: To evaluate the impact of the Family Informal Caregiver Stroke Self-Management (FICSS) program on burden and life changes resulting from providing care among family caregivers of stroke survivors. METHODS: A prospective pre-test and post-test design using quantitative and qualitative data was used to evaluate the program with a convenience sample of 42 caregivers. The four-module facilitated program consisted of small group-guided discussion. Quantitative evaluations were completed at baseline, 2 weeks and 6 months (post-intervention), and qualitative data were collected at 2 weeks and 6 months. Life changes and burden were measured using the Bakas Caregiving Outcome Scale (BCOS) and the Oberst Caregiving Burden Scale (OCBS), respectively. RESULTS: The BCOS scores increased consistently over time, showing significant differences at 6 months compared with 2 weeks (mean difference: 5.29, 95% confidence interval [CI]: 0.30-10.28, p=0.04) and baseline (mean difference: 7.58, 95% CI: 2.92-12.23, p=0.001). The OCBS time scores decreased consistently over time, showing a significant difference at 6 months compared with baseline (mean difference: -5.20, 95% CI: -0.96 to -9.44, p=0.02). The OCBS difficulty scores fluctuated over time, resulting in no overall difference from baseline to 6 months. Qualitative themes were consistent with the positive quantitative findings. CONCLUSION: Study results suggest that the FICSS program may result in reduced caregiver burden and improved life changes resulting from providing care.

Pilot evaluation of the family informal caregiver stroke self-management program.

BACKGROUND: Due to the abrupt onset of a stroke, caregivers are often unprepared for the role, have extensive needs and are at risk for negative outcomes. Interventions facilitating development of coping and problem solving skills are shown to decrease the negative effects of caregiving. The Family Informal Caregiver Stroke Self-Management (FICSS) program was developed to address the unmet needs of family caregivers of stroke survivors. OBJECTIVE: To evaluate the content, format and resource materials of the FICSS program with 10-12 family caregivers of stroke survivors within Central South Ontario. METHODS: The FICSS program is a four-module education and support series of facilitated small group discussions. Topics included: balancing changing roles, managing behaviour changes, sexuality/intimacy, and community linkages. Each module was evaluated weekly and by focus group one month after the program. RESULTS: Eleven family caregivers of stroke survivors with three years of mean caregiving experience participated. Caregivers valued the opportunity to share experiences and learn from others who understood what they were going through. Recommendations were made to improve the program topic areas, content and flow. CONCLUSIONS: The pilot evaluation of the program validated the content of the FICSS program and indicated recommendations for improvement.