BACKGROUND: Infertility is a worldwide problem and is experienced as psychologically stressful. Communication about infertility varies depending on clinical aspects, personal relationships and culture. The aim of this study was to explore infertility-related communication and coping strategies among women affected by, primary or secondary fertility problems.

METHODS: A quantitative cross-sectional study design was used. One hundred ninety-nine women affected by primary and secondary infertility were recruited from one fertility clinic in Stockholm. A structured self-administered questionnaire was used to collect data. The answers were compared across the two groups using the chi-squared test for independence.

RESULTS: The majority of the women discussed infertility related subjects with intimate friends and/or relatives and did not discuss the results of examinations and tests with people outside of the family. There were significant differences between the two groups. Twice as many women with secondary infertility acknowledged that they never talk about the causes or results of the tests and examinations with other people, compared with women with primary infertility. Approximately 25 percent of the women with primary infertility used distraction techniques, such as turning to work, as a coping strategy compared to women with secondary infertility (10%). Some women did not discuss the inability to conceive and reasons why they were childless with their spouses. Twelve percent of the women reported that they left the room when the subjects of children were being discussed. Approximately 30 percent of the participants did not ask friends or relatives for advice and a few were not able to discuss how tests and treatments affected them emotionally.

CONCLUSION: The present study indicates that a majority of infertile women discuss about infertility-related subjects with their spouses. However they are less likely to discuss the reason for infertility and results of tests and examinations with people outside the family.

RELEVANCE TO THE CLINICAL PRACTICE: The result of the current study can be useful regarding interventions for women affected by primary or by secondary infertility. The healthcare staff must be alert and attentive in order to pay attention to these possible challenges. Identification of women at risk of developing emotional problems due to communication difficulties regarding infertility-related issues merits close attention. This article is protected by copyright. All rights reserved.

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.