Assessing the impact of upper limb disability following stroke: a qualitative enquiry using internet-based personal accounts of stroke survivors

Figures & data

Figure 1. Study flowchart (nil relevant = no data specifically describing impact of upper limb disabilities found; unavailable = webpage removed between initial screening and access for data extraction).

Table 1. Available demographic data for sample.

Variables	Proportion of sources providing variable data	Values
Sex	89%	45 males; 44 females
Age	38%	Median 39 (range 29–82) years
Time since stroke	53%	Median 3.5 (range 0.2–20) years
Country of residence	61%	UK (27), US (28), Canada (4), Australia (1)

Figure 2. Proportion of sources with material coded within each of the Level 1 classifications, grouped by ICF domain.

Table 2. Descriptive framework of responses to upper limb disabilities.

	RESPONSES
THEME	Emotional	Cognitive	Behavioural/physical
Perceptions of the upper limb	• Revulsion	• UL as alien • UL as bad • UL as useless • UL as uncooperative • Trust/confidence in the UL	• Autonomous behaviour by UL (moving independently of the individual’s will)
Reactions to the upper limb problem	• Frustration • Emotional distress • Fear • Despair • Shock • Embarrassment, shame • Amusement	• Preferring one form of impairment or disability to another (e.g. UL amputation) • Mental fatigue due to concentration on UL tasks • Comparing self to others	• Hiding the effects of the impairment
Experience of recovery	• Hope – hopelessness • Disappointment • Sadness • Anxiety about the future • Excitement about changes	• Psychological significance of small changes • Beliefs and knowledge about condition and recovery • Comparing self to others with stroke • Determination • Recovering a sense of autonomy-independence • Regaining a sense of “normality” in use of UL • Developing a positive sense of self • Attitudes to therapy and therapists	• Self-management of upper limb therapy • Monitoring changes over time • Setting goals • Measuring recovery • Showing off improvements to others
Adaptation to upper limb problem	• Resistance to adaptation • Excitement about finding new ways of doing things	• Acceptance of disability • Reframing the experience of impairment • Valuing new experiences since stroke • Formation of a new sense of self-identity	• Learning compensatory strategies from others • Developing own compensatory strategies for tasks