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Table 2 Taxonomy of treatment burden in stroke

From: A conceptual model of treatment burden and patient capacity in stroke

Type of treatment burden Healthcare workload Care deficiencies
Making sense of stroke management and planning care • Understanding symptoms, investigations, treatments, risk factors
• Information gathering
• Taking responsibility
• Goal setting & prioritising
• Problem solving
• Managing uncertainty & maintaining motivation
• Developing coping strategies
• Coping with negative emotions
• Lack of information provision & poor signposting
• Information hard to understand
• Poorly timed information
• Not enough verbal information
• Not tailored to individual
• Lack of support with care planning
Interacting with others • Seeking advice or help from health and social care professionals
• Gaining support from friends, family, fellow patients
• Strained relationships
• Protecting carers
• Stigma
• Misdiagnosis
• Paternalism
• Lack of understanding
• Mismatch in ideas
• Poor access to GP
• Poorly co-ordinated care
• Poor continuity
• Poor communication from GP
Enacting management strategies • Acute care
• Inpatient rehabilitation
• Discharge home or to care home
• Community rehabilitation
• Outpatient appointments
• Medications
• Risk factor modification
• Co-morbidities
• Adaptations to home
• Home care
• Return to driving and employment
• Mobility aids
• Finances
• Enacting coping strategies
• Psychological adjustment
• Alternative therapies
• Waiting times as inpatient
• Unpleasant ward
• Poorly supported discharge
• Poor GP follow up
• Poor follow up for milder cases
• Lack of help with transport to appointments
• Complicated medication regimes
• Poor access to home adaptations and walking aids
• Substandard home care
• Poor access to driving assessment
• Complicated benefits system
• Lack of psychological support and support groups
Reflecting on management • Routine appointments for review
• Joint healthcare decisions
• Reflecting on progress
• Non-adherence
• Keeping up to date
• Worry about another stroke
• Lack of review for milder cases
• Poor long term follow up for all