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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