Abstract

background

Self-care is critical to post-stroke care, but inherently difficult in those experiencing post-stroke fatigue and apathy. There are limited contemporary Australian data regarding post-stroke fatigue and apathy and related self-management to inform targeted intervention.

objectives

To identify, among stroke survivors, the self-reported: prevalence of post-stroke fatigue and apathy; relative importance of fatigue and apathy; and self-care strategies employed.

methods

A cross-sectional study involving a purpose-designed questionnaire of Australian stroke survivors was conducted. Semi-structured closed- and open-ended questions assessed health and self-care approaches. Quantitative (descriptive statistics) and qualitative (content analyses) findings were mapped against the self-care pyramid.

results

114 (aged 62.8±12.5 years) stroke survivors participated. Two-thirds (68.4%) reported ongoing, major health complaints, despite most being >2 years post-stroke with no more than slight disability. Most (79.4%) experienced post-stroke fatigue, with half citing it as their main complaint, followed by apathy (38.9%) and mood disorders (26.1%). Most (87.4%) undertook self-care strategies for fatigue, particularly physical exercise (65.1%). Notably, 16.7% used pacing as a passive strategy to limit their daily activities, more so among younger participants (<65y: 28.6% vs ≥65y: 7.1%, P=0.01). Only 11.8% of participants were taking dietary and health supplements or medications to manage their fatigue. Self-care relied on ‘individual’ level strategies, with “community” level self-care uncommon (21.4%) and ‘family’ level self-care absent. Only one person mentioned ‘goal setting’.

Conclusion

Most stroke-survivors report ongoing major health complaints, with post-stroke fatigue a primary health concern. Self-care, although common, relies on individual level strategies with minimal goal-setting or community-level care.