Online stroke forum as source of data for qualitative research: insights from a comparison with patients’ interviews

Jamison, James; Sutton, Stephen; Mant, Jonathan; Simoni, Anna De

doi:10.1136/bmjopen-2017-020133

Cited by 36 publications

(46 citation statements)

References 49 publications

(36 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Online forums are an important way in which internet users seek this information and communicate with others who have had similar health-care experiences, and there is an increasing focus on understanding the potential value of this method of data collection in qualitative research. 66,67 Forums have successfully been used in previous health-care research [68][69][70][71][72][73] because they provide a flexible and safe space, where open and honest discussions can be held over a period of months, in a conveniently non-synchronous way for potentially large numbers of users in different geographical areas. 64,65,74 There is no burden on travel and participation results in minimal disruption to daily life.…”

Section: The Rationale For An Online Discussion Forummentioning

confidence: 99%

Early morbidities following paediatric cardiac surgery: a mixed-methods study

Brown

Pagel

Ridout

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

Background Over 5000 paediatric cardiac surgeries are performed in the UK each year and early survival has improved to > 98%. Objectives We aimed to identify the surgical morbidities that present the greatest burden for patients and health services and to develop and pilot routine monitoring and feedback. Design and setting Our multidisciplinary mixed-methods study took place over 52 months across five UK paediatric cardiac surgery centres. Participants The participants were children aged < 17 years. Methods We reviewed existing literature, ran three focus groups and undertook a family online discussion forum moderated by the Children’s Heart Federation. A multidisciplinary group, with patient and carer involvement, then ranked and selected nine key morbidities informed by clinical views on definitions and feasibility of routine monitoring. We validated a new, nurse-administered early warning tool for assessing preoperative and postoperative child development, called the brief developmental assessment, by testing this among 1200 children. We measured morbidity incidence in 3090 consecutive surgical admissions over 21 months and explored risk factors for morbidity. We measured the impact of morbidities on quality of life, clinical burden and costs to the NHS and families over 6 months in 666 children, 340 (51%) of whom had at least one morbidity. We developed and piloted methods suitable for routine monitoring of morbidity by centres and co-developed new patient information about morbidities with parents and user groups. Results Families and clinicians prioritised overlapping but also different morbidities, leading to a final list of acute neurological event, unplanned reoperation, feeding problems, renal replacement therapy, major adverse events, extracorporeal life support, necrotising enterocolitis, surgical infection and prolonged pleural effusion. The brief developmental assessment was valid in children aged between 4 months and 5 years, but not in the youngest babies or 5- to 17-year-olds. A total of 2415 (78.2%) procedures had no measured morbidity. There was a higher risk of morbidity in neonates, complex congenital heart disease, increased preoperative severity of illness and with prolonged bypass. Patients with any morbidity had a 6-month survival of 81.5% compared with 99.1% with no morbidity. Patients with any morbidity scored 5.2 points lower on their total quality of life score at 6 weeks, but this difference had narrowed by 6 months. Morbidity led to fewer days at home by 6 months and higher costs. Extracorporeal life support patients had the lowest days at home (median: 43 days out of 183 days) and highest costs (£71,051 higher than no morbidity). Limitations Monitoring of morbidity is more complex than mortality, and hence this requires resources and clinician buy-in. Conclusions Evaluation of postoperative morbidity provides important information over and above 30-day survival and should become the focus of audit and quality improvement. Future work National audit of morbidities has been initiated. Further research is needed to understand the implications of feeding problems and renal failure and to evaluate the brief developmental assessment. Funding This project was funded by the NIHR Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 30. See the NIHR Journals Library website for further project information.

show abstract

Section: The Rationale For An Online Discussion Forummentioning

confidence: 99%

Early morbidities following paediatric cardiac surgery: a mixed-methods study

Brown

Pagel

Ridout

et al. 2020

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…Analysis of online community content is arguably an underused research design, despite being found to potentially offer additional insight to traditional interviews 16. Other research using the TalkStroke forum archives have been found to complement evidence collected employing other research designs.…”

Section: Discussionmentioning

confidence: 99%

“…Online forums provide a rich source of data from which subjective experiences of the issues pertinent to the population in question may be collected 16. Online communities increasingly provide a platform for patients and caregivers to seek information, support and discuss their conditions 17.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.

et al. 2019

Self Cite

View full text Add to dashboard Cite

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.

show abstract

“…There is an increasing focus on understanding the potential value of this method of data collection in qualitative research 13 14. Forums have successfully been used in healthcare research,15–20 providing a flexible and safe space, where open and honest discussions can be held over a period of months, in a conveniently non-synchronous way for potentially large numbers of users in different geographical areas 11 12 21. There is no burden on travel, and participation results in minimal disruption to daily life.…”

Section: Introductionmentioning

confidence: 99%

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study

Rajagopal

Brown

Pagel

et al. 2020

bmjpo

View full text Add to dashboard Cite

BackgroundFollowing paediatric cardiac surgery, quality of life may be significantly impacted by morbidities associated with cardiac surgery. Parental understanding of the potential for postoperative morbidity is important for informed decision making. As part of a broader research study, we aimed to elicit parental understanding and experience of the communication of morbidities following their child’s cardiac surgery, using traditional focus groups together with an online forum.MethodsThe Children’s Heart Federation set up and moderated a closed, anonymous online discussion group via their Facebook page, focusing on complications, information needs and methods of providing families with information. Additionally, we ran three focus groups with parents/carers, moderated by an experienced independent professional. Focus groups were recorded and transcribed and a single transcript was generated from the online forum. All transcripts were thematically analysed.ResultsAll data were collected in 2014. The forum ran over 3 months in 2014 and involved 72 participants. Focus groups involved 13 participants. Three broad themes were identified: (1) clinicians’ use of language, (2) feeling unprepared for complications and (3) information needs of families.ConclusionsClinicians’ language is often misunderstood, with wide variability in the way morbidities are described, and between differing teams looking after the same child. Information may not be easily absorbed or retained by families, who often felt unprepared for morbidities that arose after their child’s heart surgery. Here, we propose key principles of good communication tailored to the individual receiving it.

show abstract

Online stroke forum as source of data for qualitative research: insights from a comparison with patients’ interviews

Cited by 36 publications

References 49 publications

Early morbidities following paediatric cardiac surgery: a mixed-methods study

Early morbidities following paediatric cardiac surgery: a mixed-methods study

How is poststroke fatigue understood by stroke survivors and carers? A thematic analysis of an online discussion forum.

Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study

Contact Info

Product

Resources

About