Dataset Information

Listening to the HysterSisters: A Retrospective Keyword Frequency Analysis of Conversations About Hysterectomy Recovery.

ABSTRACT:

Background

In the postoperative period, individual patient experiences vary widely and are based on a diverse set of input variables influenced by all stakeholders in and throughout the surgical process. Although clinical research has primarily focused on clinical and administrative datasets to characterize the postoperative recovery experience, there is increasing interest in patient-reported outcome measures (PROMs). The growth of online communities in which patients themselves participate provides a venue to study PROMs directly. One such forum-based community is HysterSisters, dedicated to helping individuals through the experience of hysterectomy, a major surgery which removes the uterus. The surgery can be performed by a variety of methods such as minimally invasive approaches or the traditional abdominal approach using a larger incision. The community offers support for "medical and emotional issues [...] from diagnosis, to treatment, to recovery." Users can specify when and what type of hysterectomy they underwent. They can discuss their shared experience of hysterectomy and provide, among other interactions, feedback, reassurance, sympathy, or advice, thus providing a unique view into conversations surrounding the hysterectomy experience.

Objective

We aimed to characterize conversations about hysterectomy recovery as experienced by users of the HysterSisters online community.

Methods

A retrospective keyword frequency analysis of the HysterSisters Hysterectomy Recovery forum was performed.

Results

Within the Hysterectomy Recovery forum, 33,311 unique users declared their hysterectomy date and type and posted during the first 12 weeks postsurgery. A taxonomy of 8 primary symptom groups was created using a seed list of keywords generated from a term frequency analysis of these threads. Pain and bleeding were the two most mentioned symptom groups and account for almost half of all symptom mentions (19,965/40,127). For symptoms categories such as pain and hormones and emotions, there was no difference in the proportion of users mentioning related keywords, regardless of the type of hysterectomy, whereas bleeding-related or intimacy-related keywords were mentioned more frequently by users undergoing certain minimally invasive approaches when compared with those undergoing abdominal hysterectomy. Temporal patterns in symptom mentions were noted as well. The majority of all posting activity occurred in the first 3 weeks. Across all keyword groups, individuals reporting minimally invasive procedures ceased forum use of these keywords significantly earlier than those reporting abdominal hysterectomy. Peaks in conversation volume surrounding particular symptom categories were also identified at 1, 3, and 6 weeks postoperatively.

Conclusions

The HysterSisters Hysterectomy Recovery forum and other such forums centered on users' health care experience can provide novel actionable insights that can improve patient-centered care during the postoperative period. This study adds another dimension to the utility of social media analytics by demonstrating that measurement of post volumes and distribution of symptom mentions over time reveal key opportunities for beneficial symptom-specific patient engagement.

SUBMITTER: Dave A

PROVIDER: S-EPMC7735658 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Listening to the HysterSisters: A Retrospective Keyword Frequency Analysis of Conversations About Hysterectomy Recovery.

Dave Arpit A Yi Johnny J Boothe Andy A Brashear Helene H Byrne Jeffrey J Gad Yash Y

JMIR perioperative medicine 20190926 2

<h4>Background</h4>In the postoperative period, individual patient experiences vary widely and are based on a diverse set of input variables influenced by all stakeholders in and throughout the surgical process. Although clinical research has primarily focused on clinical and administrative datasets to characterize the postoperative recovery experience, there is increasing interest in patient-reported outcome measures (PROMs). The growth of online communities in which patients themselves partici ...[more]

PMID: 33393919

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Project description:IntroductionSocial interactions are a key mechanism through which health communication efforts, including pictorial cigarette pack warnings, may exert their effects. We sought to better understand social interactions elicited by pictorial cigarette pack warnings.MethodsA controlled trial randomly assigned US adult smokers (n = 2149) to have their cigarette packs labeled with pictorial or text-only warnings for 4 weeks. Smokers completed surveys during the baseline visit and each of the subsequent 4 weekly visits.ResultsSmokers with pictorial warnings on their packs had more conversations throughout the trial compared to those with text-only warnings (8.2 conversations vs 5.0, p<.01). The highest number of conversations occurred during the first week. Smokers with pictorial warnings were more likely than those with text-only warnings to discuss the health effects of smoking, whether the warnings would make them want to quit and whether the warnings would make others want to quit (all p < .05). Smokers were more likely to describe pictorial warnings as scary, gross, or depressing and gloomy during conversations than text-only warnings (all p < .05).ConclusionsPictorial warnings sparked more conversations about the warnings, the health effects of smoking, and quitting smoking than text-only warnings. These social interactions may extend the reach of pictorial warnings beyond the targeted smoker and may be one of the processes by which pictorial warnings have impact.ImplicationsHealth communication can influence behavior by changing social interactions. Our trial characterized social interactions about pictorial cigarette pack warnings with a large longitudinal sample in a real-world setting. Understanding these conversations can inform the United States and other countries as they improve existing warnings and help tobacco control policy makers and health communication theorists understand how social interactions triggered by warnings affect smoking.

Project description:We examined mental time travel reflected onto individuals' utterances in real-life conversations using a naturalistic observation method: Electronically Activated Recorder (EAR, a portable audio recorder that periodically and unobtrusively records snippets of ambient sounds and speech). We introduced the term conversational time travel and examined, for the first time, how much individuals talked about their personal past versus personal future in real life. Study 1 included 9,010 sound files collected from 51 American adults who carried the EAR over 1 weekend and were recorded every 9 min for 50 s. Study 2 included 23,103 sound files from 33 young and 48 healthy older adults from Switzerland who carried the EAR for 4 days (2 weekdays and 1 weekend, counterbalanced). 30-s recordings occurred randomly throughout the day. We developed a new coding scheme for conversational time travel: We listened to all sound files and coded each file for whether the participant was talking or not. Those sound files that included participant speech were also coded in terms of their temporal focus (e.g., past, future, present, time-independent) and autobiographical nature (i.e., about the self, about others). We, first, validated our coding scheme using the text analysis tool, Linguistic Inquiry and Word Count. Next, we compared the percentages of past- and future-oriented utterances about the self (to tap onto conversational time travel). Results were consistent across all samples and showed that participants talked about their personal past two to three times as much as their personal future (i.e., retrospective bias). This is in contrast to research showing a prospective bias in thinking behavior, based on self-report and experience-sampling methods. Findings are discussed in relation to the social functions of recalling the personal past (e.g., sharing memories to bond with others, to update each other, to teach, to give advice) and to the directive functions of future-oriented thought (e.g., planning, decision making, goal setting that are more likely to happen privately in the mind). In sum, the retrospective bias in conversational time travel seems to be a functional and universal phenomenon across persons and across real-life situations.

Dataset Information

Listening to the HysterSisters: A Retrospective Keyword Frequency Analysis of Conversations About Hysterectomy Recovery.

Background

Objective

Methods

Results

Conclusions

Publications

Listening to the HysterSisters: A Retrospective Keyword Frequency Analysis of Conversations About Hysterectomy Recovery.

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