Caring for stroke survivors: experiences of family caregivers in Sri Lanka – a qualitative study

Abstract

The phenomenon of family caregivers providing informal care for stroke survivors was explicated as compassionate care, notwithstanding numerous difficulties. The findings motivate further research and strategies to minimize family caregivers' burden and facilitate the positive aspects of caregiving to promote the health and well-being of both stroke survivors and their families.

Caring for a stroke patient: The burden and experiences of primary caregivers in Uganda – A qualitative study

“…These roles were so demanding and stressful often described as physical fatigue, poor sleep and body pain. The tiredness and exhaustion reported by our caregivers have been documented in other studies as well (Bulley et al, ; Masuku et al, ; Wagachchige Muthucumarana et al, ) . In contrast, because of the available social support systems, caregivers in Japan were less stressed and had a lower sense of care burden (Uemura et al, ).…”

“…Women bear the greatest burden of caregiving, with 59%–75% of caregivers being women (Alliance, ). The reduced employment commitments related to caregiving or leaving paid work to provide unpaid care leads to financial losses, reduced family income and financial difficulties (Saban & Hogan, ; Wagachchige Muthucumarana, Samarasinghe, & Elgán, ).…”

mHealth applications to support caregiver needs and engagement during stroke recovery: A content review

“…Caregiver needs as identified from the literature can be classified into three domains; (i) adjust to new role and relationships (Barbic et al, 2014; Bulley et al, 2010; Buschenfeld et al, 2009; Cameron et al, 2013; Cao et al, 2010; Cobley et al, 2013; El Masry et al, 2013; Gosman‐Hedström & Dahlin‐Ivanoff, 2012; Graven et al, 2013; Gustafsson & Bootle, 2013; Howe et al, 2012; Hunt & Smith, 2004; Krieger et al, 2017; Silva‐Smith, 2007; Smith et al, 2004; Wagachchige Muthucumarana et al, 2018), (ii) involvement in care (Cameron et al, 2014; Chow & Tiwari, 2014; Creasy et al, 2013; Danzl et al, 2016; Gosman‐Hedström & Dahlin‐Ivanoff, 2012; Graven et al, 2013; Gustafsson & Bootle, 2013; Krieger et al, 2017; Pesantes et al, 2017; Rochette et al, 2014; Subgranon & Lund, 2000; Thomas & Greenop, 2008), and (iii) care for oneself (Barbic et al, 2014; Bastawrous et al, 2014; Bulley et al, 2010; Buschenfeld et al, 2009; Cao et al, 2010; Chow & Tiwari, 2014; Cobley et al, 2013; Gosman‐Hedström & Dahlin‐Ivanoff, 2012; Gustafsson & Bootle, 2013; Howe et al, 2012; Hunt & Smith, 2004; Pesantes et al, 2017; Silva‐Smith, 2007; Smith et al, 2004; Thomas & Greenop, 2008). These domains involve a wide‐range of subdomains to be considered when performing stroke caregiving activities as shown in Figure 1.…”

The Caregiver Experience After Stroke in a COVID-19 Environment: A Qualitative Study in Inpatient Rehabilitation

“…Currently, there is literature published examining caregiver mental health and stress levels in the outpatient setting for persons with stroke. 9 – 11 In inpatient rehabilitation, there are studies looking at the quality and nature of mental health in caregivers of patients with traumatic brain injury 12 , 13 and spinal cord injury, 14 , 15 but none examining caregivers of CVA, the most common cause for admission. Therefore, the purpose of this study was to answer the primary research question: What is the level and nature of stress experienced by caregivers of persons with newly-acquired stroke in the inpatient rehabilitation setting?…”