Date Presented 4/20/2018
Stroke can lead to occupational loss and increase perceived burden in care partners. Implications of this study suggest that care partner needs must be addressed to enhance occupational participation, improve mental health and vitality, and potentially improve rehabilitation for people with stroke.
Primary Author and Speaker: Jackie Einerson
Additional Authors and Speakers: Alexandra Terrill
Contributing Authors: Beth Cardell, Lorie Richards
PURPOSE: Chronic stroke affects occupational participation for people with stroke and their care partners. Research on female care partners suggests that decreased participation in valued activities can lead to occupational loss, which is associated with increased perceived burden, poorer mental health, and lower vitality (Kniepmann, 2012). High levels of perceived burden during the first year occur in nearly 25% of care partners (Kruithof et al., 2016). Unfortunately, care partners’ needs are often unaddressed by health care providers (Bakas et al., 2014). Attending to care partner needs could potentially improve not only care partner outcomes but also rehabilitation and recovery of the person with stroke. Research to support these phenomena is limited. The purpose of this study was to explore changes in occupational participation and feelings of perceived burden experienced by care partners of people with stroke and to identify potential clinical implications using occupation–based assessments.
METHOD: For this cross–sectional, descriptive mixed methods study, data were collected from couples coping with stroke during in–person assessments as part of a behavioral intervention pilot. Participants were recruited in university–affiliated outpatient neurology and rehabilitation clinics. Participants included 11 community–dwelling, cohabiting couples at least 6 mo poststroke. Seven participants with stroke and four care partners were women. Mean age was 53.4 (range = 27–77).
Participants, in separate rooms, completed the Activity Card Sort (ACS), Caregiver Strain Index (CSI), and in–person qualitative interviews. The ACS assesses changes in occupational participation in four areas of daily activities (instrumental, low physical demand, high physical demand, and social). The CSI has 13 items that assess five major domains (employment, financial, physical, social, and time). Endorsing seven or more items suggests a higher amount of care partner perceived burden. Descriptive statistics, Pearson correlations, and t tests examined the relationships between ACS and CSI scores–specifically, how the amount of current and retained activities in the four domains were related to care partner perceived burden.
RESULTS: Care partner perceived burden was significantly and negatively correlated with low physical demand leisure activities (r = –.83), social participation (r = –.74), and overall activity retention (r = –.82; p < .01). Care partners who reported higher feelings of perceived burden (score >7) reported significantly greater decreases in overall activity retention, t(4) = 3.57, p = .02, M = 74%, after their partner’s stroke. More specifically, the two areas most affected were social participation (M = 65%, SD = .08) and low physical demand leisure (M = 64%, SD = .15). Of note, the care partner with the highest level of perceived burden (score = 11) reported the least retention in instrumental activities (73%), high physical demand leisure activities (50%), and overall activity retention (63%). Care partners reported similar findings during the in–person interviews.
CONCLUSION: Stroke can negatively affect occupational participation of both people with stroke and their care partners. Our results suggest that occupational retention by care partners, with associated increased levels of perceived burden, can be negatively affected after their partner’s stroke, although further prospective studies are needed to examine this finding. Implications of our results suggest that occupational therapy practitioners must address the needs of care partners to enhance occupational participation in all areas, especially in the presence of perceived burden. Addressing this need in care partners could potentially improve care partners’ mental health and vitality, which could in turn improve rehabilitation outcomes for people with stroke.
References
Bakas, T., Clark, P. C., Kelly–Hayes, M., King, R. B., Lutz, B. J., & Miller, E. L. (2014). Evidence for stroke family caregiver and dyad interventions: A statement for healthcare professionals from the American Heart Association and American Stroke Association. Stroke, 45, 2836–2852. https://doi.org/10.1161/str.0000000000000033
Kniepmann, K. (2012). Female family carers for survivors of stroke: Occupational loss and quality of life. British Journal of Occupational Therapy, 75, 208–216.https://doi.org/10.4276/030802212X13361458480207
Kruithof, W. J., Post, M. W., van Mierlo, M. L., van den Bos, G. A., de Man–van Ginkel, J. M., & Visser–Meily, J. M. (2016). Caregiver burden and emotional problems in partners of stroke patients at two months and one year post–stroke: Determinants and prediction. Patient Education and Counseling, 99, 1632–1640. https://doi.org/10.1016/j.pec.2016.04.007
