Table 2

Our taxonomy of treatment burden in stroke

Type of treatment burdenHealthcare workloadCare deficiency
Making sense of stroke management and planning careUnderstanding symptoms, investigations, treatments, risk factors.
Information gathering.
Taking responsibility for health management.
Goal setting and prioritising.
Problem solving.
Managing uncertainty.
Maintaining motivation.
Developing coping strategies.
Coping with negative emotions.
Lack of information provision and poor signposting.
Information hard to understand.
Poorly timed information.
Not enough verbal information.
Information not tailored to individual.
Lack of support with care planning.
Interacting with othersSeeking advice or help from health and social care professionals.
Gaining emotional and practical support from friends, family, fellow patients .
Strained relationships due to treatments.
Protecting carers from stress.
Dealing with stigma, for example, of walking aids.
Paternalism from HPs.
Lack of empathy from HPs.
Mismatch in ideas between patient and HP.
Poor access to a GP.
Poorly co-ordinated care.
Poor continuity.
Poor communication from GP.
Enacting management strategiesUndergoing acute care.
Inpatient rehabilitation.
Discharge process.
Community rehabilitation.
Attending outpatient appointments/therapies.
Taking medications.
Risk factor modification.
Managing co morbidities.
Adaptations to home.
Organising and receiving home care.
Return to driving and employment.
Using mobility aids.
Managing finances.
Paying for treatments.
Enacting coping strategies.
Using alternative therapies.
Waiting times for inpatient tests.
Unpleasant ward.
Poorly supported discharge.
Poor GP follow-up .
Lack of help with transport to appointments.
Complicated medication regimens.
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 managementAttending review appointments.
Joint healthcare decisions with HPs.
Reflecting on progress.
Deciding on adherence to HP advice.
Keeping up to date with new treatments available.
Managing worry about another stroke.
Poor short-term follow-up for milder cases.
Poor long-term follow-up for all.
  • Aspects of treatment burden not included in any of the PRMs found are shown in italics.

  • GP, general practitioner; HP, health professional; PRM, patient-reported measure.