Illness beliefs and emotional responses in mildly disabled stroke survivors: A qualitative study

Abstract

Background: As acute stroke services improve, more persons experience mild stroke and need to cope daily with hidden disabilities, which may be influenced by how they perceive stroke, cognitively and emotionally.

Objective: To investigate cognitive illness beliefs and emotional responses in persons with mild stroke and their possible influences on daily coping.

Methods: Semi-structured interviews were conducted with 24 persons with mild stroke, on average 7.5 months (±0.89) after stroke occurrence. A thematic analysis on verbatim transcripts was guided by the Common-Sense Model of Self-Regulation.

Results: All participants experienced difficulties constructing an illness identity at both acute and chronic phase. Behavioral risk factors were less accepted as causes of stroke. Lack (or inappropriate timing) of information from healthcare providers led to limited medication knowledge and low perceived control of stroke recurrence which generated anxiety, fear, and low involvement in coping. Participants who considered stroke a chronic condition experienced more difficulties. Perceived support from relatives and healthcare providers was beneficial for participation in recovery and health behaviour change.

Conclusion: Despite having mildly disabilities, participants reported difficulties developing illness beliefs conducive to coping, and dealing with their emotional responses. These elements should be considered in tailored programs to improve coping with hidden disabilities post-stroke.

Fig 1. The stroke common sense model of self-regulation adapted from Leventhal et al, 2016 [11].

Fig 2. Semi-structured interview guide.