A Person-Centered Approach Understanding Stroke Survivor and Family Caregiver Emotional Health.

ABSTRACT: BACKGROUND: The purpose of this study was to incorporate a person-centered approach to understand the emotional health needs and perspectives of stroke survivors (SSs) and their caregivers. METHODS: In collaboration with 4 SSs and caregivers as research partners, quantitative data were collected to assess poststroke emotional health needs, and qualitative data were collected to gain insight into SS and caregiver emotional health perspectives after stroke. RESULTS: Forty surveys (n = 26 SSs, n = 14 caregivers) were collected. The predominate emotional health needs were frustration (65%), anxiety (54%), and stress (50%) for SSs and stress (71%), worry (57%), and frustration (57%) for caregivers. Two group interviews (n = 7 SSs, n = 3 caregivers) were completed. Four emerging themes were identified: receiving support from those in similar situations, poststroke emotional responses, situations experienced in healthcare settings, and a hypervigilance for sudden and unexpected events. CONCLUSION: Emotional healthcare services for SSs and their caregivers may consider providing reoccurring mental health education and multifaceted treatment approaches, including provision of peer support, and addressing the unique emotional stressors SSs and caregivers may be experiencing. The small sample size precludes generalizing the results into the broader stroke population. However, by leveraging the lived experience of SSs and their caregivers, the results may help find ways to support SSs' and caregivers' emotional health.

Caregiver Burden and Associated Factors Among Informal Caregivers of Stroke Survivors.

BACKGROUND: Informal caregiving of stroke survivors often begins with intensity compared with the linear caregiving trajectories in progressive conditions. Informal caregivers of stroke survivors are often inadequately prepared for their caregiving role, which can have detrimental effects on their well-being. A greater depth of understanding about caregiving burden is needed to identify caregivers in most need of intervention. The purpose of this study was to examine caregiver burden and associated factors among a cohort of informal caregivers of stroke survivors. METHODS: A cross-sectional study of 88 informal caregivers of stroke survivors was completed. Caregiver burden was determined with the Zarit Burden Interview, caregiver depressive symptoms were measured with the Patient Health Questionnaire-9, and stroke survivor functional disability was assessed with the Barthel Index. Ordinal logistic regression was used to identify independent factors associated with caregiver burden. RESULTS: Forty-three informal caregivers (49%) reported minimal or no caregiver burden, 30 (34%) reported mild to moderate caregiver burden, and 15 (17%) reported moderate to severe caregiver burden. Stroke survivor functional disability was associated with informal caregiver burden (P = .0387). The odds of having mild to moderate caregiver burden were 3.7 times higher for informal caregivers of stroke survivors with moderate to severe functional disability than for caregivers of stroke survivors with no functional disability. The presence of caregiver depressive symptoms was highly correlated with caregiver burden (P < .001). CONCLUSION: Caregivers of stroke survivors with functional disabilities and caregivers experiencing depressive symptoms may have severer caregiver burden. Trials of interventions aimed at decreasing informal caregiver burden should consider the potential impact of stroke survivors' functional disability and the presence of depressive symptoms.