'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.

Evaluation of a Mobile Health App Offering Fertility Information to Male Patients With Cancer: Usability Study.

BACKGROUND: Cancer and its treatment can adversely affect male fertility. Although sperm banking is an effective fertility preservation method, there is an unmet need for information and support surrounding these issues. OBJECTIVE: This usability study evaluates a mobile health app providing male patients with cancer with credible information about the impact of cancer and its treatment on fertility and fertility preservation. METHODS: Participants were recruited by a market research firm. Eligibility criteria were men who were 18-45 years of age, identified as male, diagnosed with new or recurring cancer within 1 year, not in fertility treatment, able to read and write in English or French, and had internet access. App usage was tracked for 2 weeks. After app use, participants provided qualitative feedback about their experiences using the app as well as quantitative data regarding their sperm banking decisions, perceived change in fertility knowledge, evaluation of the app's information on the Information Assessment Method, and the app's quality on the user version of the Mobile App Rating Scale. RESULTS: The sample included 40 men aged 27-45 years. Approximately 68% (27/40) indicated that no one had previously spoken to them about the impact of cancer on fertility, and 85% (34/40) had not received information on fertility preservation. Approximately 83% (33/40) found the app's information relevant, and 85% (34/40) said that it increased their fertility knowledge. Approximately 23% (9/40) made a decision about sperm banking after using the app. Participants rated the app's quality highly, with mean scores (out of 5) of 4.14 for information, 4.06 for functionality, 3.84 for aesthetics, and 3.63 for engagement. CONCLUSIONS: The app proved to be useful for male patients with cancer, suggesting that mobile health resources could be beneficial to incorporate into clinical care to enable shared decision-making about fertility.

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

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.

Information needs of people seeking fertility services in Canada: a mixed methods analysis.

BACKGROUND: Infertility is a challenging experience associated with high levels of psychological distress. Many people seeking fertility services use the internet to obtain information about their conditions and treatments. OBJECTIVES: This mixed-methods study aimed to describe the information-seeking experience of people seeking fertility services with respect to the fulfillment of their individually defined information needs and explore relationships between the fulfillment of information needs and psychological outcomes. METHODS: One hundred and four participants completed a survey with close-ended and open-ended questions about their experience using an informational web-based application (app) called 'Infotility' and about their mental well-being before and after using the app. The questionnaires administered were the The Mobile Application Rating Scale (uMARS), the Fertility Quality of Life questionnaire (FertiQol), the Patient Empowerment Questionnaire (PEQ) and the General Anxiety Disorder 7-item Scale (GAD-7). Eleven participants completed in-depth qualitative interviews about their experience using the app. A thematic analysis was used to interpret qualitative results and quantitization was used to dichotomize participants into those with met information needs versus those with unmet information needs. Google Analytics was used to compare participants' reported experience with their actual use of the app. RESULTS: The results of this study show that there is variability in the amount of information that people seeking fertility services wish to receive. Participants whose information needs were met reported improved psychological outcomes after using the app, while those with unmet needs showed no change in their psychological outcomes. CONCLUSIONS: Our results suggest that fulfilling information needs was associated with improved psychological outcomes in people seeking fertility services. Our results also suggest that individual differences in information needs should be considered when developing health educational materials.

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

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.