'But you don't look sick': a qualitative analysis of the LUPUS UK online forum.
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ABSTRACT:
SUBMITTER: Sloan M
PROVIDER: S-EPMC7952333 | biostudies-literature |
REPOSITORIES: biostudies-literature
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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.
| S-EPMC5734261 | biostudies-literature
Project description:BACKGROUND:Attention-deficit/hyperactivity disorder (ADHD) is a risk factor for problematic cannabis use. However, clinical and anecdotal evidence suggest an increasingly popular perception that cannabis is therapeutic for ADHD, including via online resources. Given that the Internet is increasingly utilized as a source of healthcare information and may influence perceptions, we conducted a qualitative analysis of online forum discussions, also referred to as threads, on the effects of cannabis on ADHD to systematically characterize the content patients and caregivers may encounter about ADHD and cannabis. METHODS:A total of 268 separate forum threads were identified. Twenty percent (20%) were randomly selected, which yielded 55 separate forum threads (mean number of individual posts per forum thread = 17.53) scored by three raters (Cohen's kappa = 0.74). A final sample of 401 posts in these forum threads received at least one endorsement on predetermined topics following qualitative coding procedures. RESULTS:Twenty-five (25%) percent of individual posts indicated that cannabis is therapeutic for ADHD, as opposed to 8% that it is harmful, 5% that it is both therapeutic and harmful, and 2% that it has no effect on ADHD. This pattern was generally consistent when the year of each post was considered. The greater endorsement of therapeutic versus harmful effects of cannabis did not generalize to mood, other (non-ADHD) psychiatric conditions, or overall domains of daily life. Additional themes emerged (e.g., cannabis being considered sanctioned by healthcare providers). CONCLUSIONS:Despite that there are no clinical recommendations or systematic research supporting the beneficial effects of cannabis use for ADHD, online discussions indicate that cannabis is considered therapeutic for ADHD-this is the first study to identify such a trend. This type of online information could shape ADHD patient and caregiver perceptions, and influence cannabis use and clinical care.
| S-EPMC4882033 | biostudies-other
Project description:BackgroundElectronic cigarettes (e-cigs) are an increasingly popular alternative to smoking, helping to prevent relapse in those trying to quit and with the potential to reduce harm as they are likely to be safer than standard cigarettes. Many women return to smoking in the postpartum period having stopped during pregnancy, and while this can affect their decisions about breastfeeding, little is known about women's opinions on using e-cigs during this period.ObjectiveThe aim of this study is to explore online forum users' current attitudes, motivations, and barriers to postpartum e-cig use, particularly as a breastfeeding mother.MethodsData were collected via publicly accessible (identified by Google search) online forum discussions, and a priori codes identified. All transcripts were entered into NVivo for analysis, with a template approach to thematic analysis being used to code all transcripts from which themes were derived.ResultsFour themes were identified: use, perceived risk, social support and evidence, with a number of subthemes identified within these. Women were using e-cigs to prevent postpartum return to smoking, but opinions on their safety were conflicting. They were concerned about possible transfer of harmful products from e-cigs via breastmilk and secondhand exposure, so they were actively seeking and sharing information on e-cigs from a variety of sources. Although some women were supportive of e-cig use, others provided harsh judgement for mothers who used them.ConclusionsE-cigs have the potential to reduce the number of women who return to smoking in the postpartum period and potentially improve breastfeeding rates, if breastfeeding mothers have access to relevant and reliable information. Health care providers should consider discussing e-cigs with mothers at risk of returning to smoking in the postpartum period.
| S-EPMC6709563 | biostudies-literature
Project description:BackgroundThe only effective weight loss treatment for severe obesity is bariatric surgery, with Roux-en-Y gastric bypass being the most common method. Patients often have unrealistic expectations of surgery and expect a "miracle cure" even though the procedure requires major lifelong lifestyle changes. Most patients access information about the procedure online, and come into contact with others who have had the surgery.ObjectiveThe objective of this study was to describe shared values, feelings, and thoughts among visitors to a web-based forum for those undergoing bariatric surgery.MethodsIn this cross-sectional observation study using qualitative contents analysis, the material consisted of an online discussion forum thread about bariatric surgery, with 498 posts. These were saved in a document, read and re-read. Through coding of meaningful units of text, themes were established.ResultsFour themes were constructed during data analysis: a) A new life-anticipating dramatic changes of body and mind; b) Negotiating the system and playing the waiting game; c) A means to an end-managing the pre-operative diet; and d) Managing the attitudes of others. Posters described the process of bariatric surgery as a journey, riddled with roadblocks, setbacks and trials, but also with joy and expectations of a new life.ConclusionProfessionals who encounter this group should be aware of their need for support throughout the process, and investigate the possibility of both pre- and postoperative support groups, either online or face-to-face. The results also show that the posters on the forum had very high, and often unrealistic, expectations on how the surgery would change their lives. It is important for those who encounter this group before surgery to be aware of this tendency and to take measures to ensure that patients undergo the surgery with realistic expectations.
| S-EPMC6201906 | biostudies-literature
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.
| S-EPMC5928583 | biostudies-literature
Project description:In a series of experiments, it was found that emotional arousal can influence height perception. In Experiment 1, participants viewed either arousing or nonarousing images before estimating the height of a 2-story balcony and the size of a target on the ground below the balcony. People who viewed arousing images overestimated height and target size more than did those who viewed nonarousing images. However, in Experiment 2, estimates of horizontal distances were not influenced by emotional arousal. In Experiment 3, both valence and arousal cues were manipulated, and it was found that arousal, but not valence, moderated height perception. In Experiment 4, participants either up-regulated or down-regulated their emotional experience while viewing emotionally arousing images, and a control group simply viewed the arousing images. Those participants who up-regulated their emotional experience overestimated height more than did the control or down-regulated participants. In sum, emotional arousal influences estimates of height, and this influence can be moderated by emotion regulation strategies. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
| S-EPMC4712948 | biostudies-literature
Project description:AimThe aim of the study was to explore the menopausal symptom experience of White midlife women.BackgroundRecent cross-cultural investigations have indicated important ethnic differences in menopausal symptoms and have challenged the universality of these symptoms. Currently available cultural knowledge on menopausal experience, however, is inadequate to guide appropriate and adequate care even for White women in the menopausal transition.MethodA cross-sectional qualitative online forum study was conducted in 2007 with 23 midlife women who self-identified as non-Hispanic Whites using convenience sampling. Seven topics related to menopausal symptom experience were used to guide the online forum for 6 months. The data were analysed using thematic analysis.ResultsThe experiences of menopause caused women to redefine themselves within their busy daily life schedules. They were optimistic about their symptoms, and tried to laugh at the experience to boost their inner strength and motivate themselves to persevere. Many thought that both generational and life-style differences were much more important than ethnic differences in menopausal symptom experiences. In seeking assistance with the symptoms of menopause, women were not satisfied with the guidance of their physicians.ConclusionNurses need to listen carefully to what women themselves say about their own experiences with menopausal symptoms and avoid imposing predetermined symptom management strategies. Further studies of women's perceptions of life-style influences are needed to guide symptom management. In addition, studies of generational changes in menopausal symptom experience are needed.
| S-EPMC2430027 | biostudies-literature
Project description:BACKGROUND:The COVID-19 global pandemic has impacted the whole of society, requiring rapid implementation of individual-, population-, and system-level public health responses to contain and reduce the spread of infection. Women in the perinatal period (pregnant, birthing, and postpartum) have unique and timely needs for directives on health, safety, and risk aversion during periods of isolation and physical distancing for themselves, their child or children, and other family members. In addition, they are a vulnerable group at increased risk of psychological distress that may be exacerbated in the context of social support deprivation and a high-risk external environment. OBJECTIVE:The aim of this study is to examine the public discourse of a perinatal cohort to understand unmet health information and support needs, and the impacts on mothering identity and social dynamics in the context of COVID-19. METHODS:A leading Australian online support forum for women pre- through to postbirth was used to interrogate all posts related to COVID-19 from January 27 to May 12, 2020, inclusive. Key search terms included "COVID," "corona," and "pandemic." A three-phase analysis was conducted, including thematic analysis, sentiment analysis, and word frequency calculations. RESULTS:The search yielded 960 posts, of which 831 were included in our analysis. The qualitative thematic analysis demonstrated reasonable understanding, interpretation, and application of relevant restrictions in place, with five emerging themes identified. These were (1) heightened distress related to a high-risk external environment; (2) despair and anticipatory grief due to deprivation of social and family support, and bonding rituals; (3) altered family and support relationships; (4) guilt-tampered happiness; and (5) family future postponed. Sentiment analysis revealed that the content was predominantly negative (very negative: n=537 and moderately negative: n=443 compared to very positive: n=236 and moderately positive: n=340). Negative words were frequently used in the 831 posts with associated derivatives including "worried" (n=165, 19.9%), "risk" (n=143, 17.2%), "anxiety" (n=98, 11.8%), "concerns" (n=74, 8.8%), and "stress" (n=69, 8.3%). CONCLUSIONS:Women in the perinatal period are uniquely impacted by the current pandemic. General information on COVID-19 safe behaviors did not meet the particular needs of this cohort. The lack of nuanced and timely information may exacerbate the risk of psychological and psychosocial distress in this vulnerable, high-risk group. State and federal public health departments need to provide a central repository of information that is targeted, consistent, accessible, timely, and reassuring. Compensatory social and emotional support should be considered, using alternative measures to mitigate the risk of mental health disorders in this cohort.
| S-EPMC7481017 | biostudies-literature
Project description: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.
| S-EPMC5884329 | biostudies-literature
Project description:Our objective is to investigate patient needs and understand information gaps in radiology reports using patient questions that were posted on online discussion forums. We leveraged online question and answer platforms to collect questions posted by patients to understand current gaps and patient needs. We retrieved six hundred fifty-nine (659) questions using the following sites: Yahoo Answers, Reddit.com, Quora, and Wiki Answers. The questions retrieved were analyzed and the major themes and topics were identified. The questions retrieved were classified into eight major themes. The themes were related to the following topics: radiology report, safety, price, preparation, procedure, meaning, medical staff, and patient portal. Among the 659 questions, 35.50% were concerned with the radiology report. The most common question topics in the radiology report focused on patient understanding of the radiology report (62 of 234 [26.49%]), image visualization (53 of 234 [22.64%]), and report representation (46 of 234 [19.65%]). We also found that most patients were concerned about understanding the MRI report (32%; n = 143) compared with the other imaging modalities (n = 434). Using online discussion forums, we discussed major unmet patient needs and information gaps in radiology reports. These issues could be improved to enhance radiology design in the future.
| S-EPMC8055745 | biostudies-literature