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Online peer support communities in the infertility journey: A systematic mixed-studies review
Abstract and Figures
Background: Infertile individuals desire support, as they are highly vulnerable to multi-dimensional distress. However, support from family, friends and professionals have been found to be inadequate for their needs. Online peer support communities are avenues where infertile individuals come together virtually to share experiences and provide peer support. Though they are known to fulfil the major need of understanding and sharing experiences, little is known about their actual role in supporting individuals struggling with infertility.
Objective: To systematically consolidate and explore the role of online peer support communities for infertile individuals.
Design: Systematic mixed-studies review.
Methods: Eight published and unpublished databases were screened for English studies from inception to October 2022: PubMed, EMBASE, Cochrane, PsycINFO, CINAHL, Scopus and ProQuest. Forty-nine studies were included, and quality was appraised using the Mixed Methods Appraisal Tool. Data-based convergent qualitative (narrative and thematic) synthesis was conducted.
Results: An overarching theme titled: Online peer support, a ‘double-edged sword’ and four themes were identified: 1) Receiving varied types of support with mutual benefits; 2) Convenient and “safe haven” with diverse options for struggling couples; 3) Herd mentality and negative collective emotions; 4) Credibility, confidentiality, and misinformation. The online communities were mainly utilised by couples in their late 20s to early 30s and the users were predominantly females. Online communities were mostly on forums and popular social media sites, public and unmoderated. Findings revealed that there were two-way benefits for both providers and receivers of peer support. Online communities were also found to be convenient and “safe haven” with diverse options for struggling couples. Conversely for some couples, online communities led to negative collective emotions and feelings of “unrelatedness” despite being among “similar others”. Lastly, some couples raised concerns around the credibility, confidentiality, and misinformation from the online communities.
Conclusions: While online communities are crucial in the individuals' journey through infertility, they can act as a ‘double-edged’ sword if not managed by professionals. Healthcare professionals can monitor online communities to improve fertility care for individuals; advice individuals to use online communities with caution, rain peer volunteers and develop expert-moderated peer support online communities.
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... Women sought out social support from others with lived experience within their communities and online. Our study is the rst to report the value women with GDM found within online communities but there is a developing literature exploring the value of online peer support in other conditions, such as mental health (39), cancer (40), and other maternity-related issues such as challenges with fertility (41). ...
... The evidence suggests that online peer support has value, particularly in providing psychosocial support (40,42), although the mechanisms for the effectiveness are uncertain (39). Maternal online peer support can improve mental wellbeing (42) although there is less evidence for effectiveness in supporting behaviour change (42) and healthcare moderation may be advisable (41). Our data suggest that online peer support for GDM is helpful and that it provides practical tips and an immediacy of response that is a useful addition to healthcare support. ...
Background
Optimal management of gestational diabetes (GDM) during in pregnancy is important because of serious risk to mother and child in cases where glucose levels are poorly controlled. Furthermore, following a GDM pregnancy up to 50% of women in some populations will go onto develop type 2 diabetes (T2D) later in life. A risk which is 10 times higher than for women who have a normoglycaemic pregnancy and which can be reduced by lifestyle change and annual screening. This study is needed because there is a paucity of data from the UK setting exploring these factors amongst ethnically diverse women and there has also been a fundamental shift towards online care provision and use of apps in maternity care in recent years, which may influence how women engage with self-management. The aim of our study was to explore experiences and identify factors which could help women engage with GDM self-management guidance during pregnancy and with T2D risk prevention strategies postpartum, amongst a diverse sample of UK women.
Methods
Women were recruited from the community and targeted primary and secondary care settings to take part in an online or face to face qualitative interview. Community recruitment was prioritised to encourage engagement of women who may not normally access the research process. Interviews were audio-recorded and professionally transcribed. An inductive thematic content analysis was conducted.
Results
Thirty-five women took part in the interviews (66% were from minority ethnicities; 43% first-generation immigrants). Factors influencing engagement with pregnancy guidance were summarised in 6 themes: a psychological burden, for your baby you find a way, coping with the everyday, building resilience, the service provision, relational interactions, and with postpartum guidance: left at sea.
Conclusions
The use of apps, online peer support groups, personally-tailored lifestyle advice and empathetic online or face to face healthcare interactions, supported GDM self-management. Postpartum knowledge about the risks and useful steps for diabetes prevention was low and confusion was exacerbated by mixed messages from healthcare teams. Some women may benefit from community-situated peer support and culturally salient guidance.
... According to Segers et al. (2019), the notion of genetic parenthood was previously held in high regard, but over time, there has been a decline in this aspiration. This finding reinforces the assertions provided by prior scholarly investigations, which indicate the occurrence of infertility might impose significant stress on interpersonal relationships (Lin & Shorey, 2023). Nevertheless, recent research shows a divergent outcome, indicating that the difficulties linked to infertility and assisted reproductive techniques might bolster the caliber and durability of intimate partnerships (Carone et al., 2022;Rausch & Wikoff, 2023). ...
Childbearing is an important component of marriage, and childless couples often face a myriad of informal sanctions from family and community members. Whilst many infertile couples may resort to Assisted Reproductive Technologies (ARTs) in an effort to mitigate the socio-cultural effects of childlessness, it is a copious concern to also ensure that the very ‘solution’ being used does not turn out to become a ‘curse’ and a source of further ridicule and stigma. They must make choices that are acceptable to their society and in consonance with their own beliefs and values. This study explored the considerations that goes into the decision to use or not to use a particular type and form of ART. The study employed a qualitative approach involving 15 semi-structured in-depth interviews with purposively selected persons seeking fertility treatment via ARTs in Accra. Thematic analysis was used in analysing interview transcripts. We found out that users of ARTs tended to be concerned about the health status of children born using these techniques. Couples, especially male partners, desired a resemblance to the children born out of such procedures and sought to ensure that their use of ARTs remain a secret forever given the implications of disclosure for their status and masculinity, parenthood and indeed kinship in the Ghanaian cultural context. Thus, to a large extent, ART decisions are also gendered in nature. We therefore conclude that though ART usage is on the increase in Ghana, there is considerable apprehension with its use because of the implications of disclosure. There is therefore the need to educate people about ARTs, to address misconceptions to increase the social and cultural acceptability for their use as a viable means of achieving procreation.
Article History: Received 25 February 2023 Accepted 18 September 2023
Keywords: Assisted Reproductive Technologies (ART), gender, kinship, non-disclosure, stigma
... In the same study, social media was perceived as the least trustworthy of online sources. Although online social communities and networks are seen as safe and convenient, they can also promote a herd mentality and cause negative collective emotions, and concerns have been raised about credibility, confidentiality, and dissemination of misinformation through online peer support (Lin and Shorey, 2023). Nevertheless, patients find online information curated by fertility clinics and social media accounts supportive in their fertility making decisions (Jones et al., 2020), the information likely regarded as general in nature and aimed at helping people navigate routes to care rather than an alternative to the need for a medical consultation. ...
The internet is the primary source of infertility-related information for most people who are experiencing fertility issues. Although no longer shrouded in stigma, the privacy of interacting only with a computer provides a sense of safety when engaging with sensitive content and allows for diverse and geographically dispersed communities to connect and share their experiences. It also provides businesses with a virtual marketplace for their products. The introduction of ChatGPT, a conversational language model developed by OpenAI to understand and generate human-like text in response to user input, in November 2022, and other emerging generative artificial intelligence (AI) language models, has changed and will continue to change the way we interact with large volumes of digital information. When it comes to its application in health information seeking, specifically in relation to fertility in this case, is ChatGPT a friend or foe in helping people make well-informed decisions? Furthermore, if deemed useful, how can we ensure this technology supports fertility-related decision-making? After conducting a study into the quality of the information provided by ChatGPT to people seeking information on fertility, we explore the potential benefits and pitfalls of using generative AI as a tool to support decision-making.
... Enhancing mental health support for these women, with a strategic emphasis on cultivating effective coping mechanisms, is essential for empowering them to navigate the psychological stress associated with infertility, benefiting both themselves and their families [21,60,85]. The social support from families, friends and health professionals might be inadequate, therefore, researchers have recommended establishing peer support groups [86]. Further studies should be conducted to develop an in-depth understanding of the coping strategies in different religions and how they can positively impact the mental health of women with infertility issues. ...
Introduction
Infertility is associated with mental health disorders in women, even if a successful pregnancy resolves infertility. However, the link between social determinants of health (SDoH) and mental health in women with infertility is not well understood. We aimed to investigate the determinants thoroughly so that mental health screening and services can be tailored to suit women with infertility who are vulnerable to mental health disorders.
Methodology
All observational studies that included women participants of reproductive age with infertility and assessed social determinants associated with mental health disorders were searched using a combination of keywords from MEDLINE, EMBASE, CINAHL, PsycINFO, Scopus, and Web of Science databases and published in English. Two reviewers conducted screening, data extraction, quality assessment and risk of bias. The protocol was registered on PROSPERO (number CRD42022343962).
Results
The systematic review included 32 studies out of 3405 screened articles from January 1st 2010 to 16th October 2023. Compared to women without infertility, the prevalence of mental health disorders, including anxiety, depression, psychological distress, and stress, is high among women with infertility, with the severity being influenced by social determinants—those with higher education, employment, higher personal or family income, private health insurance, higher social support, stronger religious beliefs, and higher spiritual well-being reported better mental health outcomes.
Conclusion
The study highlights the need for early detection, tailored interventions, and integrated and comprehensive support systems to address the mental health needs of women with infertility and improve their well-being.
Introduction. Social support positively influences patients’ health and well-being in both real life and computer-mediated settings. Informational and emotional social support types are most commonly found in online social support group discussions.
Method. Latent Dirichlet Allocation was used to analyse 132,374 infertility posts and identify topics of discussion.
Results. Two types of online social support were found: emotional and informational. Emotional support was established in 17% of all posts. Three subtypes of emotional support were identified: encouragement, offerings of congratulation, and empathy. Several informational social support subthemes were found. The two most common were discussions about the infertility treatment procedure from puncture to pregnancy, and about official procedures.
Conclusions. The results agree with similar studies performed on online social support group discussions dealing with health issues. Participants express a great need for informational support. The areas of concern are identified and some implications for medical practice are provided.
In their efforts to find others who share their experiential reality and existential struggle, many involuntarily childless women turn to Instagram to engage and participate in the practice of trying-to-conceive (TTC) communication. Through the conceptual lens of digital existence, where the digital and online are regarded as constitutive of existential transition, we draw on ten interviews and an online ethnography to explore some of the struggles that involuntarily childless women experience with and through technology. We find that TTC communication can be constitutive of coming to terms with the status of involuntary childlessness. In particular, this study illustrates that TTC communication, for involuntarily childless women, is both a site of struggle and a safe space as they transition to nonmotherhood in an existential terrain where they share an intimate journey.
The role of social support in the online setting is explored in this study. For this purpose, the posts of infertility treatment patients participating in an infertility treatment online support group between 2002 and 2016 were retrieved. Members who contributed at least 100 words were divided into two groups according to the treatment outcome they reported (pregnancy). The association between the length of group membership, type of support provided, intensity of interaction, active support seeking, overall sentiment and the amount of sadness, anxiety and anger words and the treatment outcome was examined. The findings suggest that online social, in particular emotional, support acts as a buffer between the stressor and the treatment outcome. The expression of anger and initiating of communication by new members diminish this relationship.
The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement, published in 2009, was designed to help systematic reviewers transparently report why the review was done, what the authors did, and what they found. Over the past decade, advances in systematic review methodology and terminology have necessitated an update to the guideline. The PRISMA 2020 statement replaces the 2009 statement and includes new reporting guidance that reflects advances in methods to identify, select, appraise, and synthesise studies. The structure and presentation of the items have been modified to facilitate implementation. In this article, we present the PRISMA 2020 27-item checklist, an expanded checklist that details reporting recommendations for each item, the PRISMA 2020 abstract checklist, and the revised flow diagrams for original and updated reviews.
The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement, published in 2009, was designed to help systematic reviewers transparently report why the review was done, what the authors did, and what they found. Over the past decade, advances in systematic review methodology and terminology have necessitated an update to the guideline. The PRISMA 2020 statement replaces the 2009 statement and includes new reporting guidance that reflects advances in methods to identify, select, appraise, and synthesise studies. The structure and presentation of the items have been modified to facilitate implementation. In this article, we present the PRISMA 2020 27-item checklist, an expanded checklist that details reporting recommendations for each item, the PRISMA 2020 abstract checklist, and the revised flow diagrams for original and updated reviews.
For individuals impacted by their own or a family member’s cancer, connecting with other people in similar situations can be an invaluable source of informational and emotional support. Online spaces provide opportunities for peer support that may be more accessible, given the medical and logistical restrictions on face-to-face socialisation associated with cancer and treatment. However, little is known about the impacts of online peer support. This systematic review surveys the literature on psychosocial impacts of online peer support for people impacted by cancer, integrating research from psychology, health, communications, informatics and social computing disciplines. The reviewed papers and interventions vary widely in the type of online peer support provided, who this support was intended for, and how outcomes were evaluated. Quantitative evidence suggests that online peer support may improve psychosocial wellbeing, particularly anxiety and stress, although this appears to depend on how individuals engage and interact with others. Qualitative findings suggest clear value in connecting and sharing experiences with those in similar situations, benefits which may not be well captured quantitatively. For individuals who share experiences, express emotions and feel understood and accepted by others, online peer spaces may be a valuable and viable source of support. However, this require strategic community design and management to build an active and sustainable group dynamic which can effectively and safely support people impacted by cancer.
Background
Feelings of loss, shame and stigmatization, reduced quality of life, isolation and loneliness are common among men and women with infertility. Fertility patients may seek peer mentoring and support, specifically through the use of online forums, to fulfil their needs for shared experience and guidance through the fertility treatment process.
Objective
To assess the use and benefits of an online fertility-related peer support forum through two research questions: (1) do socio-demographics, stress, and anxiety differ between posters on the forum, lurkers who read messages but did not post, and people who chose not to use it?; and (2) how did forum users describe their experiences?
Design
A sample of 220 male and female fertility patients aged 23–54 years old (M = 35.51, SD = 4.94) were recruited at fertility clinics in Montreal and Toronto, Canada, to test a mobile application called ‘Infotility’. They answered questionnaires before and after being given access to Infotility for eight weeks. The peer support forum was accessible through the Infotility dashboard.
Main Outcome Measures
Psychological distress was measured through the 4-item Perceived Stress Scale and the Generalized Anxiety Disorder 7-item Scale. Experiences using the forum were assessed through open-ended questions and in-depth interviews.
Results
Participants with heightened psychological distress were more likely to become posters rather than lurkers or non-users and reported less distress after using the forum. Forum users appreciated the opportunity to share their experiences with others in similar situations.
Conclusion
The forum reduced loneliness and allowed participants to learn new ways to manage stress. It was particularly beneficial for those with heightened psychological distress.
Background: The use of online resources has changed how people manage health care processes. Patients seek information about health conditions, guidance in treatment, and support from peers online, complementary to traditional health care trajectories. Online communities have the potential to contribute to the quality of care by increasing patient empowerment; however, there is a gap in research regarding in what way online communities contribute to patient empowerment.
Objective: We synthesized research regarding how online communities contribute to patient empowerment to address the research question "In what ways can participation in online communities support patient empowerment?" by studying how patient empowerment is operationalized in different studies. The definition of patient empowerment used in this paper is enablement for people to develop mastery over actions and control over decisions that influence their lives. The mastery is both through processes and outcomes of the development.
Methods: A systematic review was conducted by searching in the following databases: Scopus, ACM Digital Library, EBSCO (CINAHL and MEDLINE), PubMed, and Web of Science. In total, there were 1187 papers after excluding duplicates, and through selection processes using an analytical framework with definitions of patient empowerment and related concepts, 33 peer-reviewed papers were included.
Results: Findings indicated that online communities support patient empowerment both as a process and as outcomes of these processes. Additionally, it was seen as a complement to traditional health care and encouragement for health care professionals to have a more positive attitude toward patients' usage. There was a mix between deductive (19/33, 58%), inductive (11/33, 33%), and a mixed approach (3/33, 9%) of studying patient empowerment in various forms. The online communities in most papers (21/33, 64%) were well-established and represented patients' initiatives.
Conclusions: There is a need to include professionals' perspectives regarding how health care can embrace patient empowerment through online communities. This systematic review's main contribution is the proposal of a new framework and conceptualization of how patient empowerment in online communities can be understood from different hierarchical levels.
Keywords: eHealth; online community; patient empowerment; person-centered care; systematic review.
Read the full-text here: https://www.jmir.org/2021/2/e19910/
PurposeTo characterize the experiences of patients undergoing in vitro fertilization (IVF) through a qualitative analysis of content shared on Instagram.Methods
We analyzed Instagram posts from five randomly selected days in February 2020. The hashtag, #ivfcommunity, was selected to identify public posts authored by Instagram’s IVF community members from multiple treatment centers. Text, photos, hashtags, and emojis were collected from 452 included posts and entered into a study-specific database. Using thematic coding, a four-member team initially coded the first day in February. Common themes were agreed upon by all team members, and a preliminary codebook was created for further analysis. The remaining posts were coded by two-member teams who reached a consensus on the multiple themes assigned to each individual post.ResultsAnalysis of posts led to the identification of five major themes: documentation of the medical and physical experience of IVF (76.1%), the emotional spectrum (43.1%), social support (49.2%), coping mechanisms (29.9%), and education (receipt, provision) (11.1%).Conclusion
Our findings suggest that women undergoing IVF often utilize social media to document daily experiences, offer and recognize sources of community support, and provide and receive education regarding their treatments. Given the increased prevalence of mental health conditions, medical providers should explore challenges discussed on online platforms and consider harnessing the supportive nature of online communities to supplement care for IVF patients.
Introduction
Infertility is a problem that affects millions of people worldwide. The aim of this study was to assess the effect of stress, depression and anxiety on the IVF outcomes in Kazakhstan.
Methods
The prospective cohort study was performed using questionnaires to assess psychological distress in 304 infertile female in three different cities in Kazakhstan.
Results
The average age of participants was 33.7 years with infertility duration of 5.9 years. Regarding stress, depression and anxiety we found that more than 80% of all respondents had CES-D score higher than 16, indicating that they are at risk of developing clinical depression. On average, FPI subscales’ scores, global stress score and anxiety scale (STAI-S and STAI-T) scores were statistically significantly higher among not pregnant women than pregnant women. Similarly, in simple logistic regression analysis all FPI subscales scores, global stress scale score and anxiety scales’ scores were negatively associated with clinical pregnancy.
Conclusion
Rates of stress, anxiety and depression among IVF patients are higher than in general population. If the level of infertility-related stress is higher, IVF success rate is lower. Findings of our study indicate the need for the specific psychological interventions for all infertility women, to improve IVF success rate.
Patients undergoing fertility treatments, such as in-vitro fertilization (IVF), face unique challenges both physically and mentally. With the emergence of the COVID-19 global pandemic, IVF patients began to face additional obstacles as hospitals and clinics shut down in compliance with recommendations for limiting exposure risk. In order to assess the impact of COVID-19 on IVF patients, we conducted a qualitative analysis using 563 public Instagram posts collected from three randomly selected days in March 2020. After the exclusion of 354 posts, thematic coding was used to analyze 209 posts. Five major themes were identified including (1) the medical and physical experience of IVF, (2) emotional spectrum, (3) sources of social support, (4) coping mechanisms, and (5) education on social media. Posts were categorized based on whether COVID-19 was discussed and theme frequencies were compared. The majority of patients impacted by the pandemic discussed setbacks to care, such as clinic closures. In addition, posts authored by those impacted by COVID-19 contained more negative emotions and fewer positive emotions compared to unaffected users. Despite an increase in setbacks and negative emotions, posts offering support nearly tripled in frequency highlighting the resilience of the IVF community. Our thematic analysis supports the need for careful consideration of the psychological and social effects of cycle cancellations on the IVF community. Experiences and sentiments revealed by this study should be considered when a successive pandemic or global emergency threatens IVF treatment protocols.
Platformed sociality has become an elemental part of existential processes and struggles. Previous research has shown that digital contexts offer lifelines of support and a sense of belonging based on shared vulnerabilities. By combining phenomenological and ethnographic approaches, this article explores involuntary childlessness (IC) online in so-called trying-to-conceive (TTC) contexts on Instagram and in blogs. The analysis is driven by the following questions: What are the particularities of digital lifeline communication in the context of IC? Can lifeline communication shape what is coming into being in the context of wished-for children and/or motherhood? Can (digital) life be challenged, extended, or created in this context? Drawing on interviews and online posts from 260 Instagram accounts and three blogs, I argue that digital lifeline communication in TTC environments facilitates digital existence and “digital life” as the notions of motherhood and longed-for and lost children attain a form of digital materiality through posts and discussions.
Background:
Online communities provide an environment in which people with similar health concerns can interact and access content that can support the self-management of long-term conditions (LTCs). Recently, the importance of online social networks as sources of health information and social support has been brought into focus with the emergence and widespread societal impacts of COVID-19. Although online communities exist for older adults, little is known about the specific health and self-care topics that older people discuss in such environments and how these relate to users' support needs and outcomes. A better understanding of users' needs and peer-to-peer communication in these communities is necessary to inform the design of information and communication technology (ICT) interventions that are relevant to older people and their peer supporters.
Objective:
This study aims to use a two-phase, web-based ethnographic (netnography) and co-design approach to explore specific health care and self-care topics that older adults discuss in a UK-based online community and how peer supporters respond to these queries with informational and/or social support and engage with stakeholders to define the needs and requirements for new ICT-based interventions capable of reducing social isolation and facilitating LTC self-management support.
Methods:
The first phase of the research will involve a qualitative netnographic analysis of posts in discussion forums in a publicly accessible online community. The second phase will involve co-design workshops with health care consumers (ie, older adults and carers) and service providers to determine the needs and requirements for new ICT-based interventions and digital innovations. Constructivist grounded theory will be used in the first phase; in the second phase, the co-design workshops will be audiorecorded and analyzed thematically.
Results:
This research project is in progress. Permission was obtained from the website administrator to use materials from the social media forum; data collection for the first phase began in April 2020. The second phase of the study is expected to begin in late 2020. This study is due to be completed by the end of 2021.
Conclusions:
This study is the first, to the best of our knowledge, to combine qualitative netnography with an iterative co-design framework to specify the needs and requirements for new ICT-based interventions. The findings from this study will inform the next phase of the multiphase knowledge translation project and will provide insights into the potential of online peer health communities to reduce social isolation and facilitate chronic illness self-management support and self-care.
International registered report identifier (irrid):
PRR1-10.2196/19834.
Background:
Peer support for people with long-term mental health problems is central to recovery-oriented approaches in mental health care. Peer support has traditionally been conducted offline in face-to-face groups, while online groups on the Internet have increased rapidly. Offline and online peer support groups are shown to have differing strengths and weaknesses. However, little is known about how combining the two formats might be experienced by service users, which this paper aims to illuminate.
Methods:
In this exploratory and descriptive study, a recovery-oriented Internet-based portal called ReConnect was used by service users in two mental health communities in Norway for 6-12 months. The portal included an online peer support group which also facilitated participation in local offline peer support groups. Both group formats were moderated by an employed service user consultant. Qualitative data about service users' experiences were collected through focus groups and individual interviews and inductively analyzed thematically.
Results:
A total of 14 female service users 22-67 years of age with various diagnoses participated in three focus groups and 10 individual interviews. Two main themes were identified: (1) balancing anonymity and openness, and (2) enabling connectedness. These themes are further illustrated with the subthemes: (i) dilemmas of anonymity and confidentiality, (ii) towards self-disclosure and openness, (iii) new friendships, and (iv) networks in the local community. Three of the subthemes mainly describe benefits, while challenges were more implicit and cut across the subthemes. Identified challenges were related to transitions from anonymity online to revealing one's identity offline, confidentiality, and barriers related to participation in offline peer support groups.
Conclusions:
This study suggests that online and offline peer support groups complement each other, and that combining them is mainly described as beneficial by service users. Identified benefits appeared to arise from service users' options of one format or the other, or that they could combine formats in ways that suited their individual values and comfort zones. Moderation by a trained service user consultant appeared essential for both formats and can be used systematically to address identified challenges. Combining online and offline peer support groups is a promising concept for facilitating recovery-oriented care and warrants continued research.
Background
Infertility remains a common universal disorder and a whole range of assisted reproductive technologies has been established. Society may fail to recognize the grief caused by infertility, which may lead to those struggling with it hiding their feelings. Previous research points out that infertile persons experience shortcomings in fertility care regarding continuity of care and social support. Social media may provide social and psychological support for infertile persons. Finding others who are going through similar experiences can help in the realization that the person is not alone and that her/his feelings are reasonable. The aim was to explore the roles of social media for persons affected by infertility.
Methods
A cross-sectional, computer-assisted, self-administered online questionnaire, containing both open and closed questions, was used to collect data. The questionnaire was linked to the bulletin board of six closed infertility social forums. Both quantitative and qualitative analysis methods were used. A total of 132 participants completed the questionnaire containing questions about their use of social media dealing with infertility.
Results
Most of the questionnaires were answered by females (97.7%) through Facebook (87%). Over 60% of the respondents had taken part in discussions about infertility in social media, between one and three years and 39% participated more than once a day. Half of the participants devoted one to three hours weekly to the forums and wrote 1–5 postings per week. The forums offered participants information, solidarity, and the opportunity to receive and give support. However, an adverse aspect that was described concerned advice that were not evidence-based. Infertility was experienced as being alienated from social life and being fragmented as a person.
Conclusion
Participating in infertility forums offers persons information about fertility treatments and social support in the process of coping with infertility.
Background
Couples struggling with infertility are increasingly turning to the internet for infertility-related content and to connect with others. Most of the published data on infertility and the internet only address the experiences of women, with limited studies focusing exclusively on internet discussions on male factor infertility.
Objective
The aim of this study was to understand the concerns and experiences of discussants on an online male infertility community and to provide insight into their perceptions of interactions with health care professionals.
Methods
Using the large-scale data analytics tool BigQuery, we extracted all posts in the r/MaleInfertility community (877 members) of the social media website and discussion board Reddit from November 2017 to October 2018. We performed a qualitative thematic analysis and quantitative semantic analysis using Language Inquiry and Word Count 2015 of the extracted posts to identify dominant themes and subthemes of discussions. Descriptive statistics and semantic analytic Z-scores were computed.
ResultsFrom the analysis of 97 posts, notable themes and subthemes emerged: 70 (72%) posts shared personal experiences, including feeling emasculated or isolated or describing a negative (28/97, 29%), positive (13/97, 13%), or neutral (56/97, 58%) experience with a health care professional; 19% (18/97) of the posts posed questions about personal semen analysis results. On the basis of semantic analysis, posts by men had higher authenticity scores (Z=3.44; P
Social network sites (SNS) have become an increasingly popular platform for providing and receiving social support. Traditionally, females are believed to offer more social support. However, investigations of both the offline and online domains have revealed mixed findings. This meta-analysis attempts to assess the presence and magnitude of gender differences in social support on SNS. A literature review produced a sample of 30 independent studies with 17,000 participants. Results showed that females on SNS give (d = 0.36) and receive (d = 0.14) greater social support than do males. This is the first meta-analysis to test for and demonstrate gender differences in social support, either offline or online.
Herding behavior refers to the social phenomenon in which people are intensely influenced by the decisions and behaviors of others in the same group. Although several recent studies have explored the neural basis of herding decisions in people’s daily lives (e.g., consumption decisions), the neural processing of herding decisions underlying enterprise behavior is still unclear. To address this issue, this study extracted event-related potentials (ERPs) from electroencephalographic data when participants (i.e., top executives in real enterprises) performed a choice task in which they judged whether to let their enterprises settle in an industrial zone when the occupancy rate of the industrial zone was either low or high. The behavioral results showed that participants had a higher acceptance rate in the high occupancy rate condition than in the low one, suggesting the existence of herding tendency in top executives’ business decisions. The ERP results indicated that anticonformity choices induced a larger N2 amplitude than herding choices, demonstrating that participants might experience larger perceived risk and more decision conflict when they processed anticonformity choices. In contrast, we observed that herding choices induced a larger LPP amplitude than anticonformity choices, hinting that participants might experience better evaluation categorization and higher decision confidence when they processed herding choices. Based on these results, this study provides new insights into the neural basis of herding decisions made by top executives in business.
Purpose
Using a sense making approach, the purpose of this paper is to examine the role that virtual health communities play as a source of informational and social support for pregnant diabetic women. The paper helps to understand how women suffering from a critical medical condition (i.e. diabetes during pregnancy and birth) manage a complex health situation.
Design/methodology/approach
The data sample consisted of 507 posts collected from a virtual health community for diabetic pregnant women. Data were analysed deductively looking for different expressions of normality and different types of health information about diabetes.
Findings
Content analysis revealed four themes that reflect the process that diabetic women go through from their attempts to conceive through pregnancy and birth. The findings show that for women dealing with a chronic illness such as diabetes, the breakdown of normal was the beginning of the pregnancy that prompted a new range of informational and emotional needs. The members of the community negotiated a socially constructed sense of normality and tried to empower other members with a new sense of normal by sharing information about their births. The findings also showed that members of the community disclosed personal health information to elicit medical information, advice and social support from other members.
Originality/value
The study highlighted the significance of sense-making processes in managing complex health situations and the value of virtual communities as sources of information and social support as to resolve discontinuities in the management of their illnesses.
Background:
Individuals with diabetes are using online resources to engage in diabetes online communities to find diabetes-related support and information. The benefits and consequences of DOC (diabetes online community) use are unclear. This scoping review aims to map existing research focused on organic DOCs in which individuals affected by diabetes are interacting with peers.
Method:
A scoping review was conducted to comprehensively report and synthesize relevant literature published prior to 2018. Attention was paid to variations in study design, DOC user and platform characteristics, and potential or actual benefits and consequences.
Results:
Of the 14 486 titles identified, 47 articles met the inclusion criteria and were included in this scoping review. No overt definition of the DOC could be identified. Perceived or actual benefits associated with DOC use can be broadly categorized as clinical, behavioral, psychosocial and community outcomes. Perceived, potential, or actual consequences associated with DOC use were categorized as quality of information, risky behavior exploration, acute concerns, psychosocial, privacy, and inactivity.
Conclusions:
The results of this review strongly suggest DOC use is highly beneficial with relatively few negative consequences. DOC use is an emerging area of research and research gaps exist. Future research should seek to identify benefits and consequences to DOC use in experimental trials.
Some studies have suggested that infertility is a risk factor for endometrial, ovarian and breast cancer. The study aimed to create a comprehensive picture of the association between infertility and the risk of ovarian, endometrial and breast cancer, and whether any association could be explained by ovulatory disturbances, endometriosis or nulliparity. In a population-based cohort of 2,882,847 women, cox regression analysis was used to investigate cancer incidence among infertile women. Overall, infertility was associated with a higher incidence rate of ovarian (adjusted hazard ratio [aHR] 1.53, 95% confidence interval [CI] 1.38–1.71) and endometrial cancer (aHR 1.25, 95% CI 1.11–1.40), but not of breast cancer (aHR 0.96, 95% CI 0.92–1.01). Ovarian cancer incidence was higher in women diagnosed with endometriosis, and in nulliparous women with ovulatory disturbances, compared to women with none of the diagnoses. Endometrial cancer incidence was higher in women with ovulatory disturbances, but not in women with endometriosis. These findings suggest that infertility could have long-term consequences of importance to physicians and public health workers.
Electronic supplementary material
The online version of this article (10.1007/s10654-018-0474-9) contains supplementary material, which is available to authorized users.
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.
A methodologically sound systematic review is characterized by transparency, replicability, and a clear inclusion criterion. However, little attention has been paid to reporting the details of interrater reliability (IRR) when multiple coders are used to make decisions at various points in the screening and data extraction stages of a study. Prior research has mentioned the paucity of information on IRR including number of coders involved, at what stages and how IRR tests were conducted, and how disagreements were resolved. This article examines and reflects on the human factors that affect decision-making in systematic reviews via reporting on three IRR tests, conducted at three different points in the screening process, for two distinct reviews. Results of the two studies are discussed in the context of IRR and intrarater reliability in terms of the accuracy, precision, and reliability of coding behavior of multiple coders. Findings indicated that coding behavior changes both between and within individuals over time, emphasizing the importance of conducting regular and systematic IRR and intrarater reliability tests, especially when multiple coders are involved, to ensure consistency and clarity at the screening and coding stages. Implications for good practice while screening/coding for systematic reviews are discussed.
Background:
In recent years, the question of how patients' participating in online communities affects various patient reported outcomes (PROs) has been investigated in several ways.
Objectives:
This study aimed to systematically review all relevant literature identified using key search terms, with regard to, first, changes in PROs for cancer patients who participate in online communities and, second, the characteristics of patients who report such effects.
Methods:
A computerized search of the literature via PubMed (MEDLINE), PsycINFO (5 and 4 stars), Cochrane Central Register of Controlled Trials, and ScienceDirect was performed. Last search was conducted in June 2017. Studies with the following terms were included: (cancer patient) and (support group or health communities) and (online or Internet). A total of 21 studies were included and independently assessed by 2 investigators using an 11-item quality checklist.
Results:
The methodological quality of the selected studies varied: 12 were of high quality, eight were of adequate quality, and only one was of low quality. Most of the respondents were women (about 80%), most with breast cancer; their mean age was 50 years. The patients who were active in online support groups were mostly younger and more highly educated than the nonusers. The investigated PROs included general well-being (ie, mood and health), anxiety, depression, quality of life, posttraumatic growth, and cancer-related concerns. Only marginal effects-that is, PRO improvements-were found; in most cases they were insignificant, and in some cases they were contradictory.
Conclusions:
The main shortcoming of this kind of study is the lack of methodological instruments for reliable measurements. Furthermore, some patients who participate in online communities or interact with peers via Internet do not expect to measure changes in their PROs. If cancer survivors want to meet other survivors and share information or get support, online communities can be a trustworthy and reliable platform to facilitate opportunities or possibilities to make this happen.
Study question:
Can a consensus and evidence-driven set of terms and definitions be generated to be used globally in order to ensure consistency when reporting on infertility issues and fertility care interventions, as well as to harmonize communication among the medical and scientific communities, policy-makers, and lay public including individuals and couples experiencing fertility problems?
Summary answer:
A set of 283 consensus-based and evidence-driven terminologies used in infertility and fertility care has been generated through an inclusive consensus-based process with multiple stakeholders.
What is known already:
In 2006 the International Committee for Monitoring Assisted Reproductive Technologies (ICMART) published a first glossary of 53 terms and definitions. In 2009 ICMART together with WHO published a revised version expanded to 87 terms, which defined infertility as a disease of the reproductive system, and increased standardization of fertility treatment terminology. Since 2009, limitations were identified in several areas and enhancements were suggested for the glossary, especially concerning male factor, demography, epidemiology and public health issues.
Study design, size, duration:
Twenty-five professionals, from all parts of the world and representing their expertise in a variety of sub-specialties, were organized into five working groups: clinical definitions; outcome measurements; embryology laboratory; clinical and laboratory andrology; and epidemiology and public health. Assessment for revisions, as well as expansion on topics not covered by the previous glossary, were undertaken. A larger group of independent experts and representatives from collaborating organizations further discussed and assisted in refining all terms and definitions.
Participants/materials, setting, methods:
Members of the working groups and glossary co-ordinators interacted through electronic mail and face-to-face in international/regional conferences. Two formal meetings were held in Geneva, Switzerland, with a final consensus meeting including independent experts as well as observers and representatives of international/regional scientific and patient organizations.
Main results and the role of chance:
A consensus-based and evidence-driven set of 283 terminologies used in infertility and fertility care was generated to harmonize communication among health professionals and scientists as well as the lay public, patients and policy makers. Definitions such as 'fertility care' and 'fertility awareness' together with terminologies used in embryology and andrology have been introduced in the glossary for the first time. Furthermore, the definition of 'infertility' has been expanded in order to cover a wider spectrum of conditions affecting the capacity of individuals and couples to reproduce. The definition of infertility remains as a disease characterized by the failure to establish a clinical pregnancy; however, it also acknowledges that the failure to become pregnant does not always result from a disease, and therefore introduces the concept of an impairment of function which can lead to a disability. Additionally, subfertility is now redundant, being replaced by the term infertility so as to standardize the definition and avoid confusion.
Limitations, reasons for caution:
All stakeholders agreed to the vast majority of terminologies included in this glossary. In cases where disagreements were not resolved, the final decision was reached after a vote, defined before the meeting as consensus if passed with 75%. Over the following months, an external expert group, which included representatives from non-governmental organizations, reviewed and provided final feedback on the glossary.
Wider implications of the findings:
Some terminologies have different definitions, depending on the area of medicine, for example demographic or clinical as well as geographic differences. These differences were taken into account and this glossary represents a multinational effort to harmonize terminologies that should be used worldwide.
Study funding/competing interests:
None.
Trial registration number:
N/A.
Background:
Infertility all around the world and in every culture is recognized as a stressful and critical experience that threatens individual, familial, marital, and social stability. Thus, in accordance with the importance of a woman's mental health and the possible impact of mental health on treatment outcome, finding a way to deal with perceived stress in women can help improve pregnancy outcomes.
Methods:
This study is a systematic review on reducing perceived infertility stress in infertile women. The current study was undertaken using multiple databases such as SID, Irandoc, Magi ran, Google Scholar, PubMed, Science Direct, Scopus, Cochrane library, and CINAHL selected from articles pertinent to the study. The selection of papers was undertaken from 1990 through May 2016. The methodological quality was assessed.
Results:
The initial search yielded a list of 725 papers, and then reviewers studied titles and abstracts. Thereafter, 68 papers were incorporated, and researchers reviewed summaries of all of the searched articles. Finally, the researchers utilized the data gained from 29 full articles so as to compile this review paper. Reviewing the studies conducted on reducing infertility perceived stress, the researchers classified related findings into two main categories: supportive and counseling intervention.
Conclusion:
Considering the fact that there is an international agreement that fertility centers need to offer counseling programs for psychological problems of the infertile, it is especially important to recognize counseling-supportive interventions for decreasing infertile women's perceived stress and to program plans for decreasing women's perceived stress. By investigating counseling-supportive stress, we hope that this study has stepped forward toward health care agent's familiarity with decreasing infertile women's perceived stress and, therefore, improving treatment consequences.
Background:
Systematic reviews of qualitative and quantitative evidence can provide a rich understanding of complex phenomena. This type of review is increasingly popular, has been used to provide a landscape of existing knowledge, and addresses the types of questions not usually covered in reviews relying solely on either quantitative or qualitative evidence. Although several typologies of synthesis designs have been developed, none have been tested on a large sample of reviews. The aim of this review of reviews was to identify and develop a typology of synthesis designs and methods that have been used and to propose strategies for synthesizing qualitative and quantitative evidence.
Methods:
A review of systematic reviews combining qualitative and quantitative evidence was performed. Six databases were searched from inception to December 2014. Reviews were included if they were systematic reviews combining qualitative and quantitative evidence. The included reviews were analyzed according to three concepts of synthesis processes: (a) synthesis methods, (b) sequence of data synthesis, and (c) integration of data and synthesis results.
Results:
A total of 459 reviews were included. The analysis of this literature highlighted a lack of transparency in reporting how evidence was synthesized and a lack of consistency in the terminology used. Two main types of synthesis designs were identified: convergent and sequential synthesis designs. Within the convergent synthesis design, three subtypes were found: (a) data-based convergent synthesis design, where qualitative and quantitative evidence is analyzed together using the same synthesis method, (b) results-based convergent synthesis design, where qualitative and quantitative evidence is analyzed separately using different synthesis methods and results of both syntheses are integrated during a final synthesis, and (c) parallel-results convergent synthesis design consisting of independent syntheses of qualitative and quantitative evidence and an interpretation of the results in the discussion.
Conclusions:
Performing systematic reviews of qualitative and quantitative evidence is challenging because of the multiple synthesis options. The findings provide guidance on how to combine qualitative and quantitative evidence. Also, recommendations are made to improve the conducting and reporting of this type of review.
Support groups are collections of people who provide mutual support for each other regarding a shared characteristic or dilemma (Cline, 1999). Members can empathize with each other and legitimize experiences, share coping strategies and information, and provide a sense of community. Traditionally, support groups are small groups of people who meet face-to-face, but with today's technological advances, thousands of support groups have been created online. Although some investigations of the efficacy of support groups suggest that there are potential drawbacks of attending them, support groups can nonetheless provide a vast array of benefits for members.
Online social support, with its novel opportunities for coping, is especially important for those experiencing isolation. Daughters-in-law in Azerbaijan are isolated and have inadequate support due to patriarchal and patrilocal norms, amplified when they experience infertility. This study considers an online community where supportive communication and resources are exchanged to mitigate infertility isolation. Using virtual ethnography and thematic analysis, three research questions related to different types of isolation are explored. We find support exchanges in this community can likely help women more efficiently and effectively cope with, and have more control over, the immediate stressor of infertility and associated uncertainty, which is profound given the lack of supportive resources they would otherwise have.
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.
Background: Online communities provide an environment in which people with similar health concerns can interact and access content that can support the self-management of long-term conditions (LTCs). Recently, the importance of online social networks as sources of health information and social support has been brought into focus with the emergence and widespread societal impacts of COVID-19. Although online communities exist for older adults, little is known about the specific health and self-care topics that older people discuss in such environments and how these relate to users’ support needs and outcomes. A better understanding of users’ needs and peer-to-peer communication in these communities is necessary to inform the design of information and communication technology (ICT) interventions that are relevant to older people and their peer supporters.
Objective: This study aims to use a two-phase, web-based ethnographic (netnography) and co-design approach to explore specific health care and self-care topics that older adults discuss in a UK-based online community and how peer supporters respond to these queries with informational and/or social support and engage with stakeholders to define the needs and requirements for new ICT-based interventions capable of reducing social isolation and facilitating LTC self-management support.
Methods: The first phase of the research will involve a qualitative netnographic analysis of posts in discussion forums in a publicly accessible online community. The second phase will involve co-design workshops with health care consumers (ie, older adults and carers) and service providers to determine the needs and requirements for new ICT-based interventions and digital innovations. Constructivist grounded theory will be used in the first phase; in the second phase, the co-design workshops will be audiorecorded and analyzed thematically.
Results: This research project is in progress. Permission was obtained from the website administrator to use materials from the social media forum; data collection for the first phase began in April 2020. The second phase of the study is expected to begin in late 2020. This study is due to be completed by the end of 2021.
Conclusions: This study is the first, to the best of our knowledge, to combine qualitative netnography with an iterative co-design framework to specify the needs and requirements for new ICT-based interventions. The findings from this study will inform the next phase of the multiphase knowledge translation project and will provide insights into the potential of online peer health communities to reduce social isolation and facilitate chronic illness self-management support and self-care.
International Registered Report Identifier (IRRID): PRR1-10.2196/19834
Objectives: To highlight the self-reported experiences and disease perceptions of infertile female internet users with polycystic ovary syndrome (PCOS).
Methods: A qualitative study using an inductive method was conducted on infertile women with PCOS who shared their self-reported experiences on French-speaking internet forums.
Results: Throughout seven internet forums, 785 comments from 211 women were analysed. Women complained about a delayed diagnosis and a lack of information regarding PCOS. We observed a negative psychological impact of PCOS and infertility on daily life. This impact appeared to be improved by the knowledge exchanges and experiential learning enabled by the internet forums.
Conclusion: The self-reported experiences of infertile women with PCOS are interesting for health practitioners. The psychological impact of PCOS and illness perceptions appear to be improved by the sharing of experiences among women with PCOS, suggesting a beneficial support role of online discussion forums.
Background
Peer support groups can be a way to obtain support, problem solve, and widen social networks. However, there has been no systematic literature review examining the evidence for the use of peer support groups after an acquired brain injury (ABI).
Objective
This review sought to systematically evaluate the evidence for (1) the psychosocial effectiveness, and (2) the experience of peer support groups in adults who had experienced ABI’s.
Methods
The systematic literature search was conducted across the following four databases: PsycINFO, PsycARTICLES, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) in October 2019. The mixed methods appraisal tool was used to examine the quality of the research.
Results
13 papers were included in this review. Limited evidence was found for the psychosocial effectiveness of peer support groups in ABI, although the experience of partaking in a peer support group was largely found to be positive. The benefits and helping factors of taking part in a peer support group can be summarized as: being connected, interacting with others, and providing and receiving support.
Conclusions
The findings of this review suggest that peer support groups could be a promising intervention to support individuals and promote adjustment following an ABI.
The Internet is an increasingly significant source of information for people seeking health information. Peer to peer posts on online fertility forums are a critical information source. However, little is known about the use of these forums by women seeking fertility treatment. In particular, online information sourced by women seeking to travel internationally to be recipients of cross border egg donation has been rarely studied. The aim of this study is to explore what information was sought and offered in peer fertility egg recipient forums to provide insights into the motivations and other considerations of Australian women seeking overseas egg donation. In doing so we seek to understand the use of technology by women – both the Internet and assisted reproductive technologies – as an aid to engage strangers in intimate decision-making concerning reproductive choice.
We aimed to identify what information patients and partners are seeking on male infertility forums. Online discussion boards were identified. Posts were analysed in three steps: open coding, axial coding and selective coding, to determine common themes. A total of 1,118 posts were analysed. The majority of posts (20.2%) were related to “Questions about male fertility diagnosis and testing”, with 47.8% asking for assistance interpreting semen analysis results. About 15.7% of posts were about “Feelings associated with male infertility”, with 26.7% expressing anger or frustration, 26.1% encouraging hope, 21% seeking hope and 12.5% expressing fear. About 15.4% of posts were about “Lifestyle factors to improve male fertility”, 24.4% of which were about vitamins and 6.4% about intercourse timing. About 15.4% of posts were about “Male infertility conditions”, with 43% about semen parameters. Other themes included “Questions about male factor treatments”, “Questions about assisted reproductive technologies (ART)”, “Relationship issues”, “Asking for advice”, “Financial concerns” and “Information sharing”. About 63.6% of posts were written by female partners [t(1,117) = 9.451, p < .001]. The most common posts posed questions about male fertility diagnosis and testing. Users discussed feelings involved in infertility, and counselling should be integrated. About 63.6% of posts were by partners, highlighting the importance of partners having access to infertility information.
Infertility can place a significant burden on couples and individuals when trying to conceive. Approximately 20-30% of all cases of infertility are due to male-related factors. Whatever the cause of difficulty in conceiving, little is known about how men find support when dealing with fertility issues, or when or how online resources are being used. This paper reports on a qualitative study of anonymous online posts (N=603) from forums related to fertility that are used by men. We analysed this data using thematic analysis to understand how men are using online forums as a resource when experiencing fertility issues. We found that online forums play a valued role in facilitating connections between men experiencing an often stigmatised condition. These forums offer men accessible and private spaces which allow for more open discussion, helping them to make sense of their situation. We discuss our findings in relation to Genuis and Bronstein's model of finding a "new normal" and present our elaborated model of finding a "new normal" in the context of experiencing fertility problems.
Studies have shown that infertility may be caused by male factors, female factors, a mixture of both male and female factors, or due to unexplained reasons. Nevertheless, in some societies, infertility is frequently seen as solely a woman’s problem and women with infertility problems are often forced to suffer blame and humiliation in silence. For example, in Malaysia, a barren married woman is looked down upon, has a lower status, and may be divorced from her husband. Infertility becomes a taboo topic and therefore, not much is known about Malaysian women with infertility problems. However, with the anonymity afforded by computer-mediated communication (CMC), these women are now turning to the online medium for help. This study uses the web content analysis method to investigate the inquiries made by Malaysian women over in vitro fertilization (IVF), a type of infertility treatment, in a local online forum. The findings revealed that the questions asked by women in the forum were primarily concerned with seeking information about IVF. Other types of questions asked include opinion-seeking and questions requesting experience-sharing. These women were also found to use various solidarity strategies to support and encourage one another in persevering with their treatment.
A mixed studies review (MSR) is a type of literature review that includes qualitative, quantitative, and mixed methods studies. This form of literature review is popular since it can provide a rich understanding of complex health interventions and programs. However, conducting a MSR can be challenging since it combines several study designs. A wiki toolkit was developed to provide MSR-specific guidance and suggest tips and tools for planning, conducting and reporting MSR. The toolkit is structured according to eight stages for conducting a systematic review: (1) formulate a review question, (2) define eligibility criteria, (3) select sources of information, (4) identify potentially relevant studies, (5) select relevant studies, (6) appraise the quality of studies, (7) extract data, and (8) synthesize included studies. The toolkit includes examples, tips for searching studies with diverse designs, existing tools for searching, selecting and appraising, synthesis designs, and a template for proposals and reports. This toolkit is presented as a wiki, which allows users to collaboratively modify the content and provides continuous updates on the science of MSR. It is hoped that this wiki toolkit will be useful to all users and contribute to creating a network of people interested in MSR.
Parenthood is one of the most desired goals in adulthood. However, approximately 20% of couples of reproductive age experience difficulty in conceiving or maintaining a pregnancy. Despite the fact that both males and females can be infertile, and that the male factor accounts for almost half of the infertility causes in Romanian couples, women endure the majority of fertility testing and treatments. Such procedures are expensive, time consuming and with no guarantee of success. The aim of the present paper was to bring more insight into what infertile women experience, as it is reflected by Romanian women participating in online discussion forums. In order to understand how women with fertility problems perceive and reflect on this situation, we conducted a thematic analysis, and analyzed texts from five discussion forums. We identified the following themes regarding representations of infertility: Infertility as a threat to the feminine identity; The story of one more try; Pandora's box; Lonely couple; Divinity as a last resort to infertility. Results illustrate the magnitude of the burden of infertility, depicted as a complex problem, with consequences cascading over the personal and social aspects of life. Not being able to conceive in a society where children are emotionally valued means deviating from the norms of womanhood, bringing forth feelings of shame or guilt regarding one's reproductive incapacity. Therefore, substantial efforts are made in order to achieve pregnancy. When hopes regarding pregnancy fail to materialize, women often turn to spirituality for help.
The reproductive realm is routinely viewed as a feminised space requiring women's commitment and labour. By contrast, men's procreative contributions and ‘reproductive masculinity’ is represented as unproblematic, with men assumed to be fertile across the lifespan. Recent scientific research has, however, cast doubt over these longstanding assumptions, suggesting that a link does exist between ‘lifestyle’ factors and male fertility. The notion that fertility can be improved with effort (for both women and men) can be located within wider cultural and political shifts which construct individuals as increasingly responsible for acting on health messages and engaging in self‐disciplining body projects. Through an exploration of ‘lifestyle changes’ within a men's online infertility discussion forum board, this paper examines how discourses of individualisation healthism and masculinity are reproduced and interlinked. Our thematic analysis indicates that ‘lifestyle work’ is construed as crucial for achieving conception ‐ and as a means to demonstrate men's commitment to the dyadic goal of parenthood, which in turn may challenge and extend previous notions of ‘reproductive masculinity’.
Infertility is a disease characterized by the failure to establish a clinical pregnancy after 12 months of regular and unprotected sexual intercourse. It is estimated to affect between 8 and 12% of reproductive-aged couples worldwide. Males are found to be solely responsible for 20-30% of infertility cases but contribute to 50% of cases overall. Secondary infertility is the most common form of female infertility around the globe, often due to reproductive tract infections. The three major factors influencing the spontaneous probability of conception are the time of unwanted non-conception, the age of the female partner and the disease-related infertility. The chance of becoming spontaneously pregnant declines with the duration before conception. The fertility decline in female already starts around 25-30 years of age and the median age at last birth is 40-41 years in most studied populations experiencing natural fertility. The disease-related infertility may affect both genders or be specific to one gender. The factors affecting both genders' fertility are hypogonadotrophic hypogonadism, hyperprolactinemia, disorders of ciliary function, cystic fibrosis, infections, systemic diseases and lifestyle related factors/diseases. Premature ovarian insufficiency, polycystic ovary syndrome, endometriosis, uterine fibroids and endometrial polyps may play a role in female infertility. Male infertility may be due to testicular and post-testicular deficiencies. Semen decline that has been observed over the years, endocrine disrupting chemicals and consanguinity are other factors that may be involved.
Singapore has one of the tightest regulations over assisted reproductive technologies (ARTs) in Asia, a consequence of Singapore's strong state, the priority it gives to reproduction, and the numerous religious groups in the country and their direct and indirect influence on the Bioethics Advisory Committee, which recommends ART regulations for the country. Together, these key actors give shape to the ‘local moral worlds’, which undergird ART governance in the country. Drawing on in-depth interviews and data from online forums, we illustrate Singaporean fertility seekers' attempts to juggle myriad and sometimes confusing obligations to the state, society and religion in making reproductive choices. We then explore the limits and possibilities for fertility seekers to circumvent the restrictive rules and ‘moral safety valves’ set in place in their home country simply by stepping out to another jurisdiction across national borders. The paper goes on to show how the Internet communities serve as a bridgespace, propelling fertility mobilities by enabling Singaporeans to see creative possibilities in patchwork regulations. At the edges of state and religious power, fertility-seeking subjects take advantage of liminal spaces, grey areas, or permissive regimes to gain several degrees of freedom to practise adaptive fertility strategies that may be ‘unofficial’ but ‘licit’ or ‘socially acceptable’.
Women with cancer often experience the risk of infertility and reproductive difficulties due to the cancer treatments. Social support is important for women to understand and to manage the challenges of infertility. This study was designed to explore both the exchange of social support and how negative social support was expressed in two online discussion boards. Five types of social support were studied: informational, emotional, appraisal, network, and instrumental support. We used qualitative content analysis with a directed coding scheme to examine two popular discussion boards for women with post-cancer infertility and reproductive difficulty. The results showed that all five types of social support were used in the discussion boards and that, at times, social support could turn negative. Future research directions for this area of inquiry are discussed.
