Barriers and facilitators to adherence to secondary stroke prevention medications after stroke: Analysis of survivors and caregivers views from an online stroke forum

Problem

Secondary prevention medication can significantly reduce the risk of recurrent stroke, however medication non-adherence is a considerable problem among stroke survivors, contributing to suboptimal health outcomes. There is need to investigate adherence to secondary prevention medications after stroke including patients’ with severe disabilities and caregivers’ factors. TalkStroke is an online forum where survivors and their families’ exchange information and support to one another. A recent study on this forum showed that a wide variety of themes were discussed, including secondary prevention medications. Caregivers’ views were well represented, representing more than half of forum users. Most caregivers (70%) looked after patients with severe disabilities.

The aim of this investigation was to understand barriers and facilitators of medication adherence among survivors of stroke and their caregivers’ through evaluating posts contained within the archive of an online stroke forum, using a framework based approach.

Approach

Qualitative thematic analysis of TalkStroke (2004-2011) the online forum of the Stroke Association, informed by Perceptions and Practicalities Approach (PAPA). Terms related to secondary prevention medications were selected (e.g. Amlodipine, statin, warfarin), including misspellings (e.g. Asprin, simvastin), brand names (e.g. Lipitor, Plavix) and drug categories (e.g. statin, diuretics etc.). Posts including any secondary prevention medication term were identified. We additionally searched for the keywords: ‘taking medication’, ‘pills’, ‘size’ , ‘statins’, ‘side effects’, ‘capsule’, ‘box’, ‘routine’, ‘blister’, ‘no medication’, and ‘secondary prevention’. Themes were classified as barriers and facilitators to medication adherence.

Findings

We identified 84 participants (49 stroke survivors, 33 caregivers, 2 unknown) who contributed with 222 posts (162 written by stroke survivors, 57 by caregivers, 3 by a user who could not be defined as either survivor or caregiver). Perceptions reducing the motivation to adhere included burden and self-management of medication side effects, questioning doctors’ prescribing practices, and negative publicity about medications, especially in regard to statins. Caregivers faced difficulties of ensuring medications were taken while ensuring the patient’s preference around taking tablets. They struggled in their role as advocate of patient’s needs with healthcare professionals. Attributing importance to medications, positive personal experiences of taking tablets and obtaining modification of medications to manage side effects were facilitators of adherence. Key practical barriers included difficulties with swallowing tablets, dealing with the burden of treatment and drug cost. Using medication storage devices, following routines and getting help with medications from caregivers were important facilitators of adherence.

Consequences

Analysis of this forum highlighted significant barriers and facilitators of medication adherence faced by stroke survivors and their caregivers. Addressing beliefs about medications and practical barriers can inform the development of future interventions aimed at improving adherence to secondary prevention medication in stroke. An online stroke forum is a novel and valuable resource to investigate use of secondary prevention medications.