Rosacea patients seeking advice: Qualitative analysis of patients’ posts on a rosacea support forum

Alinia, Hossein; Tuchayi, Sara Moradi; Farhangian, Michael E.; Huang, Karen; Taylor, Sarah L.; Kuo, Sandy; Richardson, Irma; Feldman, Steven R.

doi:10.3109/09546634.2015.1133881

Cited by 23 publications

(18 citation statements)

References 11 publications

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“…29 A quantitative study of online forum posts for acne rosacea found extensive information needs and the authors concluded that if doctors offered patients reliable sources of information then this may prevent treatment nonadherence and following potentially erroneous advice from the internet. 30 In conclusion, this study shows that online forums present readers with diverse advice and views on oral antibiotics, which could at best be confusing and at worst lead to early abandonment of treatments, requests for inappropriate referrals, challenging consultations and patient dissatisfaction. Some of the more potentially helpful posts directed readers towards reliable sources of information, such as NHS Choices.…”

Section: Discussionmentioning

confidence: 84%

“…Assessing information needs and health beliefs is an important part of the dermatology consultation and a key role of health professionals is to signpost people towards high‐quality evidence‐based information free from commercial bias, particularly as it is known that patients do not recall a substantial proportion of information given to them during the consultation . A quantitative study of online forum posts for acne rosacea found extensive information needs and the authors concluded that if doctors offered patients reliable sources of information then this may prevent treatment nonadherence and following potentially erroneous advice from the internet …”

Section: Discussionmentioning

confidence: 99%

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Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums

et al. 2017

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Section: Discussionmentioning

confidence: 84%

Section: Discussionmentioning

confidence: 99%

Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums

et al. 2017

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“…Further, although other studies have similarly examined only 10% of the total available data in previous online research (Alinia et al., ; Wei, ;), this sample may not present an accurate account of this online community's most prominent concerns and characteristics. We were only able to collect limited sociodemographic data about the participants, which may further limit generalizability.…”

Section: Discussionmentioning

confidence: 94%

Informal caregiving experiences in posttraumatic stress disorder: A content analysis of an online community

Ferrell

Russin

Hardy

2018

Journal Community Psychology

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This study explored the experiences of individuals who self‐identify as providing support to a friend, family member, or significant other with posttraumatic stress disorder (PTSD). We analyzed and coded a total of 345 posts from an online support forum, with reference to 13 categories (finances, life interference, venting/emotional expression, maltreatment, sexual behavior, distress, prevented expression, physical health, communication, no personal space, isolation, and compassion fatigue). Categories for coding were established a priori and based on previous literature about caregiving and supporting. Results suggested that informal PTSD caregivers experience concerns involving interpersonal relations, emotional turmoil, and barriers to care for themselves and the individual they are caring for. This study provides a preliminary examination of the experiences and concerns of PTSD caregivers. Implications and suggestions for future research are discussed.

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“…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

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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.

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Rosacea patients seeking advice: Qualitative analysis of patients’ posts on a rosacea support forum

Cited by 23 publications

References 11 publications

Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums

Views of oral antibiotics and advice seeking about acne: a qualitative study of online discussion forums

Informal caregiving experiences in posttraumatic stress disorder: A content analysis of an online community

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

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