'How did you cope with such concerns?': insights from a monitored online infertility peer support forum.

The Research Question posed was 'What coping strategies do fertility patients and trained peer supporters discuss in an online infertility peer support forum?' A thematic analysis was used to examine 244 online posts from a sample of 39 users (37 women and two men) for themes in coping with fertility-related stressors. Data were collected from Connect, a monitored online discussion forum with trained peer supporters. Connect users ranged from 27 to 44 years of age (mean = 34.38) and 33 (84.6%) were nulliparous at the time of the study. A variety of cognitive-reappraisal and practical management coping strategies was discussed across four themes: (i) balancing interpersonal relationships; (ii) partner support; (iii) uncertainty and lack of control; and (iv) positivity and negativity. Experiences of uncertainty and lack of control related to time and schedule, outcomes and waiting for physical symptoms, and the clinic. Connect users commonly discussed the helpfulness of coping strategies. Connect users actively requested experiential information about ways of coping from other patients and peer supporters, highlighting the importance of lived experience to those currently in treatment. Findings support conceptualizations of infertility coping as a process that is unique to the infertility treatment context and that may change throughout a patient's treatment. Trained peer supporters may benefit fertility patients by normalizing, reappraising, and providing practical strategies to ameliorate difficult infertility-related challenges.

Development and evaluation of an online infertility peer supporter training program.

OBJECTIVE: To outline the development and evaluation of an online infertility peer supporter training program. METHODS: Men and women with diverse infertility backgrounds were recruited and trained to provide online peer support to people undergoing fertility treatment. Training required volunteers to (1) read a peer support training manual, (2) watch a webinar, and (3) complete practice questions, each of which was evidence-based and reviewed by key stakeholders. RESULTS: Seventeen women and one man were trained and provided online peer support. Program satisfaction was high and training materials were rated as helpful. Peer supporters felt comfortable providing support and having their discussions monitored. They liked helping others and the convenience of a mobile application. CONCLUSION: Online recruitment and training of infertility peer supporters is feasible. The current program was acceptable and offers steps for improving future online peer support interventions. PRACTICE IMPLICATIONS: Current evidence supports the acceptability and feasibility of this training and supervision program, and provides service providers with information guiding its development and implementation.

Searching the Internet for Infertility Information: A Survey of Patient Needs and Preferences.

BACKGROUND: Given the complexity of infertility diagnoses and treatments and the convenience of the internet for finding health-related information, people undergoing infertility treatments often use Web-based resources to obtain infertility information and support. However, little is known about the types of information and support resources infertility patients search for on the internet and whether these resources meet their needs. OBJECTIVE: The aims of this study were to (1) examine what individual factors, namely, demographic characteristics and distress, are associated with searching the internet for different types of infertility-related information and support resources and (2) determine whether Web-based resources meet the needs of patients. METHODS: Men and women seeking infertility care responded to a survey assessing use of Web-based resources for accessing infertility-related information and support. The survey further assessed satisfaction with Web-based resources as well as perceived stress and depressive symptomatology. RESULTS: A total of 567 participants, including 254 men and 313 women, completed the survey. Most participants (490/558, 87.8%) had searched the internet for infertility information and support. Searchers were more likely to be women (P<.001), highly educated (P=.04), long-term patients (P=.03), and more distressed (P=.04). Causes of infertility, treatment options, and scientific literature about infertility were the three most frequently searched topics, whereas ways to discuss treatment with family and friends as well as surrogacy and ways to find peer support were the three least searched topics. Of those who searched the internet, 70.9% (346/488) indicated that their needs were met by Web-based information, whereas 29.1% (142/488) said that their needs were not met. Having unmet needs was related to greater levels of perceived stress (P=.005) and depressive symptomatology (P=.03). CONCLUSIONS: This study provides evidence for the important role of the internet in accessing infertility information and support and for the ability of Web-based resources to meet patients' needs. However, although distressed patients reported particularly high rates of searching, their needs were not always met, suggesting that they may benefit from alternative sources of information and support or guidance from health care providers when searching the internet.

Infertility patients' need and preferences for online peer support.

This study sought to determine the level of interest in online peer support among infertility patients, factors associated with such interest, and preferences for features of an online peer support network. A sample of 236 men and 283 women (n = 519) seeking fertility treatment were recruited from four clinics in Ontario and Quebec, Canada. Participants completed an anonymous online questionnaire assessing demographics, perceived stress and fertility characteristics, in addition to interest in and preferences for online infertility peer support. Most men (80.1%) and women (89.8%) expressed interest in online peer support, with perceived stress being related to interest among both men and women. Non-White ethnicity and lower income were related to greater interest among men. Patients reported a preference for mobile accessibility, monitored peer-to-peer communication, and links to information. Men and women, particularly those with high levels of perceived stress, expressed interest in online peer support and shared similar preferences for features irrespective of fertility characteristics. Demographic characteristics and perceived stress were related to a desire for more personalized support options.

"It's Totally Okay to Be Sad, but Never Lose Hope": Content Analysis of Infertility-Related Videos on YouTube in Relation to Viewer Preferences.

BACKGROUND: Infertility patients frequently use the internet to find fertility-related information and support from people in similar circumstances. YouTube is increasingly used as a source of health-related information and may influence health decision making. There have been no studies examining the content of infertility-related videos on YouTube. OBJECTIVE: The purpose of this study was to (1) describe the content of highly viewed videos on YouTube related to infertility and (2) identify video characteristics that relate to viewer preference. METHODS: Using the search term "infertility," the 80 top-viewed YouTube videos and their viewing statistics (eg, views, likes, and comments) were collected. Videos that were non-English, unrelated to infertility, or had age restrictions were excluded. Content analysis was used to examine videos, employing a coding rubric that measured the presence or absence of video codes related to purpose, tone, and demographic and fertility characteristics (eg, sex, parity, stage of fertility treatment). RESULTS: A total of 59 videos, with a median of 156,103 views, met the inclusion criteria and were categorized into 35 personal videos (35/59, 59%) and 24 informational-educational videos (24/59, 41%). Personal videos did not differ significantly from informational-educational videos on number of views, dislikes, subscriptions driven, or shares. However, personal videos had significantly more likes (P<.001) and comments (P<.001) than informational-educational videos. The purposes of the videos were treatment outcomes (33/59, 56%), sharing information (30/59, 51%), emotional aspects of infertility (20/59, 34%), and advice to others (6/59, 10%). The tones of the videos were positive (26/59, 44%), neutral (25/59, 42%), and mixed (8/59, 14%); there were no videos with negative tone. No videos contained only male posters. Videos with a positive tone did not differ from neutral videos in number of views, dislikes, subscriptions driven, or shares; however, positive videos had significantly more likes (P<.001) and comments (P<.001) than neutral videos. A majority (21/35, 60%) of posters of personal videos shared a pregnancy announcement. CONCLUSIONS: YouTube is a source of both technical and personal experience-based information about infertility. However, videos that include personal experiences may elicit greater viewer engagement. Positive videos and stories of treatment success may provide hope to viewers but could also create and perpetuate unrealistic expectations about the success rates of fertility treatment.

In Their Own Words: Perspectives on Nonsuicidal Self-Injury Disorder Among Those With Lived Experience.

Nonsuicidal self-injury (NSSI) is included in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as a condition warranting further study. Although potential advantages and disadvantages regarding this prospect have been documented, no study has examined the perspectives of those who self-injure. The goal of the current study was to give voice to these views. Seventy-six participants with an NSSI history completed quantitative and qualitative measures assessing perspectives about NSSI being included as a DSM disorder. Findings revealed mixed views overall. Thematic analysis of open-ended responses highlighted several unique advantages (i.e., enhanced understanding of NSSI, validation of the NSSI experience, facilitation of NSSI treatment, encouragement of NSSI help-seeking, reduction of NSSI stigma) and disadvantages (i.e., exacerbation of NSSI stigma, diminishment of underlying concerns). These findings speak to the need to consider the perceptions of those with lived NSSI experience; future directions and implications are discussed.