Table 2

Characteristics of online TalkStroke participants as identified in the study posts

Barriers Facilitators
Necessity beliefs
Lack of perceived benefits of medication
  • Questioning the effectiveness of secondary prevention medications in preventing stroke recurrence.

  • Considering statins detrimental to health and not effective.

  • Valuing adherence but recognising that it is the choice of the patient to take tablets.

  • Realising that stroke could still occur despite taking secondary prevention medications.

Necessity beliefs
Attributing importance to medications
  • Recognising taking tablets as important to prevent stroke recurrence.

  • Feeling reassured by taking secondary prevention medications.

  • Experiencing consequences of non-adherence (a further stroke) as driver of necessity beliefs.

  • Feeling secondary prevention medications are important and should only be stopped in consultation with the GP.

  • Holding strong beliefs about the need for secondary prevention medications.

Management of medication side effects*
  • Experiencing statins side effects and considering they have potential to worsen quality of life.

  • Changing diet/lifestyle as alternative to taking medication to reduce side effects.*

  • Healthcare professionals recommending diet and exercise to reduce cholesterol instead of taking statins.*

  • Struggling to raise issues about side effects of statins with healthcare professionals and obtaining changes in treatment when patients find it unsuitable.

Impact of bad press on statins
  • Being extracautious about commencing statins for fear of side effects.

  • Struggling to ensure patients’ adherence to statins in face of bad press.

Questioning prescribing practices
  • Being disappointed as medications considered ineffective were not changed by GPs.

  • Having concerns around incorrect medications being prescribed.

  • Receiving conflicting information about medications.

  • Worrying about medications being prescribed for financial reasons or guidelines over clinical judgement.

  • Experiencing difficulties with asking GPs to prescribe alternative tablets as current ones considered unsuitable.

  • Feeling the role of GPs is limited to advising about secondary prevention medications.

  • Intentionally missing medications to manage side effects.

Management of medication side effects*
  • Awareness that not all patients are affected by side effects.

  • Healthcare professionals changing medications to counteract side effects.

  • Modifying medications to achieve optimal treatment.

  • Obtaining changes in treatment from healthcare professionals until side effects are manageable.

Trusting healthcare professionals
  • Perceiving medications to be beneficial as secondary healthcare professional also taking it.

Barriers Practicalities
Problems associated with taking tablets
  • Swallowing medication capsules, especially big size ones.

  • Experiencing difficulties with handling medications due to size and stroke-related physical impairments.

  • Experiencing frustration with burden of multiple medications and episodic patients’ refusal of medications.

  • Experiencing frustration at patient refusal to take statins and attend routine medication appointment.

  • Experiencing difficulties when helping patients with aphasia taking tablets in the context of changes in treatment.

  • Experiencing frustration at patients failing to keep up with refilling prescriptions.

Cost of medications
  • Struggling to meet the costs of secondary prevention medications.

Storage devices for managing medication
  • Using pill box: helping seeing the correct medication was taken and when prescription needed to be renewed.

  • Using pill boxes to provide written instruction to patients or keeping a note of tablets taken.

  • Advice from pharmacist on taking medication correctly.

Good medication taking routines
  • Linking tablet use to an everyday activity to facilitate medication taking behaviour.

  • Assuming control of medication when patients have problems with short-term memory and reminding when tablets have to be taken.

  • *Because of missing details of the underlying clinical scenario, these themes could act both as barriers or facilitators to adherence to secondary prevention medications, therefore, have been reported under both headings.

  • Statements in italics refer to caregivers’ themes.

  • GP, general practitioner.