Dataset Information

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

ABSTRACT:

Objective

To identify barriers and facilitators of medication adherence in patients with stroke along with their caregivers.

Design

Qualitative thematic analysis of posts about secondary prevention medications, informed by Perceptions and Practicalities Approach.

Setting

Posts written by the UK stroke survivors and their family members taking part in the online forum of the Stroke Association, between 2004 and 2011.

Participants

84 participants: 49 stroke survivors, 33 caregivers, 2 not stated, identified using the keywords 'taking medication', 'pills', 'size', 'side-effects', 'routine', 'blister' as well as secondary prevention medication terms.

Results

Perceptions reducing the motivation to adhere included dealing with medication side effects, questioning doctors' prescribing practices and negative publicity about medications, especially in regard to statins. Caregivers faced difficulties with ensuring medications were taken while respecting the patient's decisions not to take tablets. They struggled in their role as advocates of patient's needs with healthcare professionals. Not experiencing side effects, attributing importance to medications, positive personal experiences of taking tablets and obtaining modification of treatment 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.

Conclusions

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

SUBMITTER: Jamison J

PROVIDER: S-EPMC5541606 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Jamison James J Sutton Stephen S Mant Jonathan J De Simoni Anna A

BMJ open 20170716 7

<h4>Objective</h4>To identify barriers and facilitators of medication adherence in patients with stroke along with their caregivers.<h4>Design</h4>Qualitative thematic analysis of posts about secondary prevention medications, informed by Perceptions and Practicalities Approach.<h4>Setting</h4>Posts written by the UK stroke survivors and their family members taking part in the online forum of the Stroke Association, between 2004 and 2011.<h4>Participants</h4>84 participants: 49 stroke survivors, ...[more]

PMID: 28713074

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Project description:ObjectiveTo understand poststroke fatigue from the perspective of stroke survivors and caregivers expressed in an online discussion forum.DesignThe search terms 'tiredness', 'fatigue', 'tired', 'weary' and 'weariness' were used to identify relevant posts. Thematic analysis performed by two independent researchers who coded all forum posts and identified pertinent themes. Posts were coded in relation to two research questions: (1) how is poststroke fatigue described? and (2) what coping strategies are suggested to target poststroke fatigue? Each theme was then summarised by a lead quotation in forum users' own words.SettingUK-based web forum hosted by Stroke Association, TalkStroke. Archives from 2004 to 2011 were accessed.Participants65 stroke survivors and caregivers (mean age 54 years, 61% female) contributed to 89 relevant posts that included a relevant search term. This included 38 stroke survivors, 23 individuals with family or carer role and 4 others unidentified.ResultsSix themes were generated: (1) medicalisation of poststroke fatigue: 'a classic poststroke symptom', (2) a tiredness unique to stroke: 'a legacy of stroke', (3) normalisation and acceptance of poststroke fatigue: 'part and parcel of stroke', (4) fighting the fatigue: 'an unwelcome guest', (5) survivors' and caregivers' biological explanations: 'the brain healing' and (6) coping mechanisms: 'pace yourself'. Forum users also repeatedly commented that poststroke fatigue was 'not understood by the profession'.ConclusionThis is the first study to employ data from an online forum to characterise poststroke fatigue. Our data are considered naturalistic owing to the absence of a researcher guiding the discussion and thus generates useful insights for healthcare professionals. Findings suggest a requirement for consistent understanding and explanation to be provided by healthcare professionals. The beliefs outlined here highlight the gap between clinical and community knowledge. Further research to translate understanding of patient and carer perspective into improved management of poststroke fatigue is required.

Project description:BackgroundPatient portals have the potential to support self-management for chronic diseases and improve health outcomes. With the rapid rise in adoption of patient portals spurred by meaningful use incentives among safety net health systems (a health system or hospital providing a significant level of care to low-income, uninsured, and vulnerable populations), it is important to understand the readiness and willingness of patients and caregivers in safety net settings to access their personal health records online.ObjectiveTo explore patient and caregiver perspectives on online patient portal use before its implementation at San Francisco General Hospital, a safety net hospital.MethodsWe conducted 16 in-depth interviews with chronic disease patients and caregivers who expressed interest in using the Internet to manage their health. Discussions focused on health care experiences, technology use, and interest in using an online portal to manage health tasks. We used open coding to categorize all the barriers and facilitators to portal use, followed by a second round of coding that compared the categories to previously published findings. In secondary analyses, we also examined specific barriers among 2 subgroups: those with limited health literacy and caregivers.ResultsWe interviewed 11 patients and 5 caregivers. Patients were predominantly male (82%, 9/11) and African American (45%, 5/11). All patients had been diagnosed with diabetes and the majority had limited health literacy (73%, 8/11). The majority of caregivers were female (80%, 4/5), African American (60%, 3/5), caregivers of individuals with diabetes (60%, 3/5), and had adequate health literacy (60%, 3/5). A total of 88% (14/16) of participants reported interest in using the portal after viewing a prototype. Major perceived barriers included security concerns, lack of technical skills/interest, and preference for in-person communication. Facilitators to portal use included convenience, health monitoring, and improvements in patient-provider communication. Participants with limited health literacy discussed more fundamental barriers to portal use, including challenges with reading and typing, personal experience with online security breaches/viruses, and distrust of potential security measures. Caregivers expressed high interest in portal use to support their roles in interpreting health information, advocating for quality care, and managing health behaviors and medical care.ConclusionsDespite concerns about security, difficulty understanding medical information, and satisfaction with current communication processes, respondents generally expressed enthusiasm about portal use. Our findings suggest a strong need for training and support to assist vulnerable patients with portal registration and use, particularly those with limited health literacy. Efforts to encourage portal use among vulnerable patients should directly address health literacy and security/privacy issues and support access for caregivers.

Dataset Information

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

Objective

Design

Setting

Participants

Results

Conclusions

Publications

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

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