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Online stroke forum as source of data for qualitative research: insights from a comparison with patients’ interviews
  1. James Jamison1,
  2. Stephen Sutton1,
  3. Jonathan Mant1,
  4. Anna De Simoni2
  1. 1 Primary Care Unit, Institute of Public Health, Forvie Site, University of Cambridge School of Clinical Medicine, Cambridge, UK
  2. 2 Centre for Primary Care and Public Health, Barts and the London School of Medicine and Dentistry, Queen Mary University of London, London, UK
  1. Correspondence to James Jamison; jj285{at}


Objective To determine the appropriateness of an online forum compared with face-to-face interviews as a source of data for qualitative research on adherence to secondary prevention medications after stroke.

Design A comparison of attributes of two data sources, interviews and a forum, using realistic evaluation; a comparison of themes around adherence according to the Perceptions and Practicalities Approach (PAPA) framework.

Setting Interviews were conducted in UK GP practices in 2013 and 2014; online posts were written by UK stroke survivors and family members taking part in the online forum of the Stroke Association between 2004 and 2011.

Participants 42 interview participants: 28 stroke survivors (age range 61–92 years) and 14 caregivers (85% spouses). 84 online forum participants: 49 stroke survivors (age range 32–72 years) and 33 caregivers (60% sons/daughters).

Results 10 attributes were identified within the two data sources and categorised under three domains (context, mechanisms and outcomes). Participants’ characteristics of forum users were often missing. Most forum participants had experienced a stroke within the previous 12 months, while interviewees had done so 1–5 years previously.

All interview themes could be matched with corresponding themes from the forum. The forum yielded three additional themes: influence of bad press on taking statins, criticisms of clinicians’ prescribing practices and caregiver burden in assisting with medications and being advocates for survivors with healthcare professionals.

Conclusions An online forum is an appropriate source of data for qualitative research on patients’ and caregivers’ issues with adherence to secondary prevention stroke medications and may offer additional insights compared with interviews, which can be attributed to differences in the approach to data collection.

  • stroke medicine
  • qualitative research
  • online forum
  • methodology

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  • Contributors JJ contributed to the study design, data collection, data analysis and prepared the manuscript for submission. JM and SS are coinvestigators on the study and commented on the manuscript. ADS contributed to the study design, data analysis and commented on the manuscript. All authors agreed on the final draft of the submitted manuscript.

  • Funding ADS is funded by a NIHR Academic Clinical Lectureship. JJ was supported by a research grant from The Stroke Association and the British Heart Foundation: TSA BHF 2011/01.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval The interview study was granted ethical approval by NHS Research South Yorkshire Ethics Committee (Ref 13-YH-0067).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.

  • Correction notice This article has been corrected since it was first published. The Acknowledgements statement has been added into the article.

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