Changes in Participation Level after Spouse’s First Stroke and Relationship to Burden and Depressive Symptoms

Abstract

Background: No comprehensive data are available on the impact of stroke on the spouse’s participation level. The purpose of this study was to document changes in participation level over time and explore associations between changes in participation level, burden and depressive symptoms for spouses of people who had had a first stroke. Methods: Participants were spouses recruited in the first 2 weeks after admission of individuals with a first stroke to acute care. Prestroke measures (T0) were collected at recruitment, simultaneously with the first measure (T1); further measures were collected 6 months after the stroke event (T2). Participation level was measured with the LIFE-H, perceived burden with the Caregiver Strain Index and depressive symptoms using the Beck Depression Inventory (BDI). Results: Mean age of participants (n = 54) was 69 years (SD 10.9) and the majority were female (75.9%). Changes in participation include small but significant increases at T1 for the nutrition (effect size, ES, 0.34) and responsibilities (ES 0.22) domains, and large significant persistent decreases at T2 compared to T0 were found for personal relationships (ES 0.83), employment (ES 0.63) and recreation (ES 0.93). Changes in these last three participation domains are associated with a higher Caregiver Strain Index score (p < 0.01) but not with the BDI. Conclusions: Participation domains mostly affected for spouses after stroke were personal relationships, employment and recreation which could be addressed by clinicians in their provision of support.

Strain experienced by caregivers of stroke survivors in the Western Cape

“…The results indicate that a higher percentage of caregivers compared to their international counterparts experi enced strain (Visser Meiley et al 2005;Rochette et al 2007;Ilsei et al 2008). The caregiver strain was also higher than findings from the study by Kleineibst in 2007 in the same setting, but lower than findings from Wasserman et al (2009).…”

“…This problem is echoed by studies from the United Kingdom (MacKenzie et al 2007) and Canada (Rochette et al 2007). Similarly Kleineibst (2007) and Wasserman et al (2009) mention finan cial challenges and changes in employ ment status as a major cause of caregiver strain.…”

“…According to international literature, between 29% and 43% of caregivers experience strain related to care giv ing duties (Ilsei et al 2008;Rochette et al 2007;Visser Meiley et al 2005). South African studies found similar to higher levels of strain in caregivers of stroke sufferers (Wasserman et al 2009; (WCRC), a specialist rehabilitation centre, during 2006.…”

”I Don’t Believe in Leading a Life of My Own, I Lead His Life”: A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

“…Other qualitative research has identified caregivers experience a reduction in social participation (Bulley, Shiels, Wilkie, & Salisbury, 2010) and loss of spontaneity and freedom (Bäckström & Sundin, 2009). Further, quantitative research suggests caregivers experiencing restrictions in working towards roles and goals of importance and value experience increased levels of depression (Grigorovich et al, 2016;Hwang, Rivas, Fremming, Rivas, & Crane, 2009;Mausbach et al, 2011;Rochette et al, 2007). Whilst some caregivers are able to re-engage with activities over time, those with higher levels of depression and caring for stroke survivors with greater illness severity are less likely to (Grigorovich et al, 2016).…”

“…The provision of informal care to stroke survivors within the community can be challenging (Jaracz et al, 2015), and can be associated with significant emotional consequences including sleep difficulties (Rittman, Hinojosa, & Findley, 2009); loss of relationships with family and friends (Rochette, Desrosiers, Bravo, Tribble, & Bourget, 2007); withdrawal from social activities (Mausbach et al, 2011) and poor quality of life (Godwin, Ostwald, Cron, & Wasserman, 2013). Further, caregivers may experience poor physical health (Carretero, Garcés, Ródenas, & Sanjosé, 2009;Legg, Weir, Langhorne, Smith, & Stott, 2013) and reduced energy (Parag et al, 2008).…”