‘I felt less alone knowing I could contribute to the forum’: psychological distress and use of an online infertility peer support forum

O’Connell, Siobhan Bernadette Laura; Gelgoot, Eden Noah; Grunberg, Paul H; Schinazi, Joy; Costa, Deborah Da; Rosberger, Zeev; Zelkowitz, Phyllis

doi:10.1080/21642850.2021.1884556

Cited by 20 publications

(13 citation statements)

References 40 publications

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“…This was a major factor that contributed to some individuals always "feeling like an outsider," even when they were part of infertility support groups, or around others with shared experiences. While many respondents reported marked benefit and support from individuals with shared experiences or therapists specializing in infertility, which is consistent with prior research [9,10], some still felt isolated as they would compare themselves with others and often worried about having "a worse/the worst" story.…”

Section: Discussionsupporting

confidence: 76%

A Qualitative Exploration of Social Support in Males and Females Experiencing Issues With Infertility

Borowczak¹,

Rotoli²

2022

Cureus

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Introduction:The purpose of this study was to qualitatively investigate and compare male and female experiences of infertility in the context of social support.Methods: A Qualtrics survey (Qualtrics, Provo, Utah, United States) was posted to online fertility support groups and the responses were thematically analyzed. Only participants that completed the qualitative component of the survey were included in the study. Responses were subsequently thematically analyzed.Results: A sample of 110 participants (13 males and 97 females) were included in the present study. Thematic analyses revealed that isolation and loneliness, stigma, sentiments of misunderstanding, insensitive reactions, and others' unhelpful attempts at support were general recurring themes, especially amongst females. Males predominantly reported negative emotional experiences and stigma, often feeling overlooked when compared with women despite being equally affected by these issues. Conclusion:Our study provides insight into the factors that contribute to perceived isolation amongst the infertile population. These largely stemmed from feeling misunderstood and from others' inexperience with infertility. Spreading awareness and facilitating dialogue and education across not only the infertile population but also the community, is therefore critical to begin addressing the mental health effects of infertility.

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Section: Discussionsupporting

confidence: 76%

A Qualitative Exploration of Social Support in Males and Females Experiencing Issues With Infertility

Borowczak¹,

Rotoli²

2022

Cureus

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“…Many studies have reviewed social media fertility support groups, and generally, females are very much in the majority [ 37 ]. Males were found in one study to be more “lurkers” than “posters” on these forums due to more insecurity as compared to women [ 38 ]. Ultimately, 50 people participated in the study.…”

Section: Resultsmentioning

confidence: 99%

The Lack of Ireland’s Assisted Human Reproduction (AHR) Regulation Viewed under the Lens of the Patient’s Experience

Ronan

McDermott

Butler

et al. 2022

IJERPH

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Assisted Human Reproduction (AHR) treatment is unregulated in Ireland, although it is practised there. Within Europe, Ireland is one of the only European countries without any form of AHR-specific regulation. This study aims to investigate the experiences and viewpoints of Irish women undergoing AHR treatments and establish if the lack of legislation is affecting these experiences. A quantitative survey was carried out on women undergoing AHR treatment in Irish clinics. Patients highlighted a lack of information in terms of end-to-end care and poor information around treatments and success rates. Key issues highlighted included unanticipated high treatment costs and add-on treatment costs, lack of financial support from the government, no redress process in the event of dissatisfaction, and generally an overall feeling of a lack of support both from the AHR clinics and the Irish government. This study offers a real-time view of the Irish AHR system from the patient’s experience of AHR and under the lens of the lack of a legislative system. In early 2022, the Irish government announced that it would adopt its bill around AHR treatment and that subsidies for AHR treatment are to come into effect, which will alleviate some financial pressures on patients. Further studies of the legislation carried out post implementation will provide more information about the impact of having a legislated AHR process on the patients.

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“…Finally, many participants expressed that the peer support forum was their favorite part of the app and that using it reduced feelings of isolation, helped them manage stress, and provided valuable information. The Connect forum was perceived as confidential and safe, and peer supporters helped keep conversations respectful and on track [ 58 ].…”

Section: Resultsmentioning

confidence: 99%

An mHealth App to Support Fertility Patients Navigating the World of Infertility (Infotility): Development and Usability Study

Kruglova¹,

O’Connell²,

Dawadi³

et al. 2021

JMIR Form Res

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Background The experience of infertility and its treatment engenders considerable stress and is often described as an emotional rollercoaster. A mobile health (mHealth) app may be a novel solution to address the psychoeducational and psychosocial support needs of fertility patients because of its potential to reduce stress and increase patient empowerment. There are a few fertility-related apps that provide information and support to both men and women undergoing fertility treatment; however, none have documented their development and evaluation process. Objective This study aims to describe the development and evaluation process of a bilingual mHealth app, Infotility, designed to meet the psychoeducational and psychosocial support needs of men and women undergoing fertility treatment. Methods To develop the Infotility app, we adhered to the Medical Research Council guidelines for the development and evaluation of complex interventions. First, we conducted literature reviews and needs assessment surveys of fertility patients and health care providers who informed the content and design of the app. Second, we tested the intervention with a small group of end users who provided feedback on the design and appropriateness of the app’s content. Third, we evaluated the uptake and usability of the app using a pre-post study design. Finally, we updated the app’s content based on participants’ feedback and searched for partners to disseminate the app to the broader public. Results This study is the first to describe the development and evaluation process of an mHealth app for men and women undergoing fertility treatment. The app met its goal in providing fertility patients with a clinician-approved, portable resource for reliable information about medical and psychosocial aspects of infertility and its treatments and a confidential peer support forum monitored by trained peer supporters. Participants rated the engagement, functionality, information, and esthetics of the app positively, with an overall app quality mean score of 3.75 (SD 0.53) and a star rating of 3.43 (SD 0.75), with a total possible score and star rating of 5.00. Conclusions By documenting the systematic development and evaluation of the mHealth app for men and women undergoing fertility treatment, this paper can facilitate the replication of the study intervention and the development of similar mHealth apps.

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‘I felt less alone knowing I could contribute to the forum’: psychological distress and use of an online infertility peer support forum

Cited by 20 publications

References 40 publications

A Qualitative Exploration of Social Support in Males and Females Experiencing Issues With Infertility

A Qualitative Exploration of Social Support in Males and Females Experiencing Issues With Infertility

The Lack of Ireland’s Assisted Human Reproduction (AHR) Regulation Viewed under the Lens of the Patient’s Experience

An mHealth App to Support Fertility Patients Navigating the World of Infertility (Infotility): Development and Usability Study

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