Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Jamison J

PROVIDER: S-EPMC5884329 | biostudies-literature | 2018 Mar

REPOSITORIES: biostudies-literature

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

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

BMJ open 20180330 3

<h4>Objective</h4>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.<h4>Design</h4>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.<h4>Setting</h4>Interviews were conducted in UK GP pract ...[more]

PMID: 29602848

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Project description:BACKGROUND:Over the past 2 decades, online forums for mental health support have emerged as an important tool for improving mental health and well-being. There has been important research that analyzes the content of forum posts, studies on how and why individuals engage with forums, and how extensively forums are used. However, we still lack insights into key questions on how they are experienced from the perspective of their users, especially those in rural and remote settings. OBJECTIVE:The aim of our study was to investigate the dynamics, benefits, and challenges of a generalized peer-to-peer mental health online forum from a user perspective; in particular, to better explore and understand user perspectives on connection, engagement, and support offered in such forums; information and advice they gained; and what issues they encountered. We studied experiences of the forums from the perspective of both people with lived experience of mental illness and people who care for people with mental illness. METHODS:To understand the experience of forum users, we devised a qualitative study utilizing semistructured interviews with 17 participants (12 women and 5 men). Data were transcribed, and a thematic analysis was undertaken. RESULTS:The study identified 3 key themes: participants experienced considerable social and geographical isolation, which the forums helped to address; participants sought out the forums to find a social connection that was lacking in their everyday lives; and participants used the forums to both find and provide information and practical advice. CONCLUSIONS:The study suggests that online peer support provides a critical, ongoing role in providing social connection for people with a lived experience of mental ill-health and their carers, especially for those living in rural and remote areas. Forums may offer a way for individuals to develop their own understanding of recovery through reflecting on the recovery experiences and peer support shown by others and individuals enacting peer support themselves. Key to the success of this online forum was the availability of appropriate moderation, professional support, and advice.

Project description:Plain English summary:Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. Abstract: Background:Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk). Methods:We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases. Results:Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed. Conclusions:When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.

Project description:ObjectiveTo explore the barriers and facilitators to inhaled asthma treatment in adolescents with asthma.DesignQualitative analysis of posts about inhaler treatment in adolescents from an online forum for people with asthma. Analysis informed by the Perceptions and Practicalities Approach.ParticipantsFifty-four forum participants (39 adolescents ?16?years, 5 parents of adolescents, 10 adults with asthma) identified using search terms 'teenager inhaler' and 'adolescent inhaler'.SettingPosts from adolescents, parents and adults with asthma taking part in the Asthma UK online forum between 2006 and 2016, UK.ResultsPractical barriers reducing the ability to adhere included forgetfulness and poor routines, inadequate inhaler technique, organisational difficulties (such as repeat prescriptions), and families not understanding or accepting their child had asthma. Prompting and monitoring inhaler treatment by parents were described as helpful, with adolescents benefiting from self-monitoring, for example, by using charts logging adherence. Perceptions reducing the motivation to adhere included asthma representation as episodic rather than chronic condition with intermittent need of inhaler treatment. Adolescents and adults with asthma (but not parents) described concerns related to attributed side effects (eg, weight gain) and social stigma, resulting in 'embarrassment of taking inhalers'. Facilitators to adherence included actively seeking general practitioners'/consultants' adjustments if problems arose and learning to deal with the side effects and stigma. Parents were instrumental in creating a sense of responsibility for adherence.ConclusionsThis online forum reveals a rich and novel insight into adherence to asthma inhalers by adolescents. Interventions that prompt and monitor preventer inhaler use would be welcomed and hold potential. In clinical consultations, exploring parents' beliefs about asthma diagnosis and their role in dealing with barriers to treatment might be beneficial. The social stigma of asthma and its role in adherence were prominent and continue to be underestimated, warranting further research and action to improve public awareness of asthma.

Project description:Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness. Twelve people with lived experience of mental illness took part in semi-structured interviews via online video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use. Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place. There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness.

Project description:PurposeThere are no published examples of a global online research collaborative in andrology. We describe the development, profile and member characteristics of the first consortium of this type, the Global Andrology Forum (GAF).Materials and methodsAn online survey sent to all GAF members collected demographic information (sex, age, experience, academic title, degrees, country, specialty, profession). It also tapped data on members' characteristics e.g., skills in research, software and statistics; preferred activities; time commitments; expected roles; and interest in participating in research, in GAF's scientific activities and collaborative online research. The findings were analyzed and tabulated. We outline members' demographic and professional characteristics and scientific achievements to date. A narrative approach outlined GAF's structure and functioning.ResultsA total of 418 out of 540 members completed the survey and were included in the analysis (77.4% response rate). The sample comprised mainly urologists (34.2%) and a third of the respondents had practiced for >15 years (33.3%). Up to 86.1% of the members expressed interest in being actively engaged in writing scientific articles. A third of the sample (37.1%) could dedicate 4 to 6 hours/week. Few respondents reported skills in statistics and artwork (2.6% and 1.9% respectively). Members were assigned to specific roles based on their expertise and experiences. Collaborative working ensured the timely completion of projects while maintaining quality. For outcomes, GAF published 29 original articles within one year of its creation, with authors from 48 countries spanning topics that included varicocele, sperm DNA damage, oxidative stress, semen analysis and male infertility, oocyte/embryo, and laboratory issues of assisted reproductive technique (ART) and male infertility evaluation.ConclusionsGAF is a successful global online andrology research model. A healthy number of scientific articles have been published. Given such effectiveness, adopting the GAF model could be useful for other disciplines that wish to create and coordinate successful international online research groups.

Project description:BackgroundDespite recent rises in fatal overdoses involving multiple substances, there is a paucity of knowledge about stimulant co-use patterns among people who use opioids (PWUO) or people being treated with medications for opioid use disorder (PTMOUD). A better understanding of the timing and patterns in stimulant co-use among PWUO based on mentions of these substances on social media can help inform prevention programs, policy, and future research directions. This study examines stimulant co-mention trends among PWUO/PTMOUD on social media over multiple years.MethodsWe collected publicly available data from 14 forums on Reddit (subreddits) that focused on prescription and illicit opioids, and medications for opioid use disorder (MOUD). Collected data ranged from 2011 to 2020, and we also collected timelines comprising past posts from a sample of Reddit users (Redditors) on these forums. We applied natural language processing to generate lexical variants of all included prescription and illicit opioids and stimulants and detect mentions of them on the chosen subreddits. Finally, we analyzed and described trends and patterns in co-mentions.ResultsPosts collected for 13,812 Redditors showed that 12,306 (89.1%) mentioned at least 1 opioid, opioid-related medication, or stimulant. Analyses revealed that the number and proportion of Redditors mentioning both opioids and/or opioid-related medications and stimulants steadily increased over time. Relative rates of co-mentions by the same Redditor of heroin and methamphetamine, the substances most commonly co-mentioned, decreased in recent years, while co-mentions of both fentanyl and MOUD with methamphetamine increased.ConclusionOur analyses reflect increasing mentions of stimulants, particularly methamphetamine, among PWUO/PTMOUD, which closely resembles the growth in overdose deaths involving both opioids and stimulants. These findings are consistent with recent reports suggesting increasing stimulant use among people receiving treatment for opioid use disorder. These data offer insights on emerging trends in the overdose epidemic and underscore the importance of scaling efforts to address co-occurring opioid and stimulant use including harm reduction and comprehensive healthcare access spanning mental-health services and substance use disorder treatment.

Project description:ObjectiveTo identify barriers and facilitators of medication adherence in patients with stroke along with their caregivers.DesignQualitative thematic analysis of posts about secondary prevention medications, informed by Perceptions and Practicalities Approach.SettingPosts written by the UK stroke survivors and their family members taking part in the online forum of the Stroke Association, between 2004 and 2011.Participants84 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.ResultsPerceptions 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.ConclusionsAn 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.

Dataset Information

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

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

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