When The Internet Is Your Only Outlet For Talking About Infertility
Yakov M. Epstein, Ph.D a
Helane S. Rosenberg, Ph.D b .
Theresa Venet Grant. c
Nancy Hemenway c
Presented at the 57th Annual Meeting of the American Society for Reproductive Medicine
a Center for Mathematics, Science, and Computer Education, Rutgers -The State University, Piscataway , NJ
b Department of Learning and Teaching, Graduate School of Education, Rutgers-The State University, New Brunswick, New Jersey
c International Council on Infertility Information Dissemination (INCIID), Arlington , VA
Reprint Requests: Yakov M. Epstein, Ph.D., Center for Mathematics, Science, and Computer Education, Rutgers – The State University , 118 Frelinghuysen Rd. Piscataway , NJ 08855-8019
Fax: 7 32-445-3477 email: yepstein@rci.rutgers.edu
ABSTRACT
Objective(s): To gather information about demographic characteristics, medical status, mode of Internet participation, and psychological well-being of participants whose only outlets ( OO’s ) for talking about infertility are Internet medical and support forums and to compare them with persons having additional outlets (AO’s).
Design: Prospective Internet-based survey
Setting: Website of a non-profit international infertility organization.
Patients: 589 persons submitting fully completed surveys.
Intervention(s): 134-item Internet-based survey.
Main Outcome Measure(s): Survey of types of Internet participation, benefits of participation, self-assessed ability to cope with aspects of infertility, perceived stress, perceived support from relatives and friends, and 21-item Beck Depression Inventory (BDI) which is an instrument designed to measure depressive symptomology .
Results: OO’s and AO’s were comparable in their medical history and treatments. OO’s had less formal education, were less wealthy, and more likely to be homemakers. Compared to AO’s, OO’s were more depressed, and got less real-world support while feeling more supported on the Internet.
Conclusion: Used properly, the Internet can help people facing infertility by educating, empowering, and diminishing their feelings of depression. But the Internet can also be used inappropriately to withdraw from real world interactions.
Key
Words: Internet, infertility, survey, stress,
depression.
INTRODUCTION
. The National Center for Health Statistics (NCHS) estimates (1-3) that as of 1995 there were 6.1 million women in the United States ages 15-44 with impaired ability to have children.(1) Of these women, 42% had primary infertility (never given birth) and 58% had secondary infertility (given birth to one or more children). NCHS estimates that as of 1995 of the 60.2 million women of reproductive age, 9.3 million were using some kind of infertility service, defined as either medical advice, tests, drugs, surgery, or other treatments. This constitutes an increase of 2.5 million from the numbers obtained in the previous NCHS (1988) survey. NCHS further finds that : “Among childless women 35-44, 21 percent had ever received infertility services. The most common infertility services were medical advice, tests on the woman or man, and ovulation drugs. Surgery or treatment for blocked tubes and assisted reproductive technologies were less common.” (2)
Research on the psychological impact of infertility (3-5) finds that infertile individuals experience negative psychological sequelae including depression, anxiety, feelings of isolation, lowered self-esteem, and stress. Research has investigated what factors contribute to the stress of infertility (5). Researchers found that women react differently to the stress of infertility than to other sources of stress and that major contributing factors to this stress were diagnostic testing and the cost of diagnosis and treatment.
To help find information and social support , many infertile individuals turn to books, infertility support groups (6), and more recently to Internet resources (7-9). In 2000, approximately 43% of the United States households had access to the Internet (10). an increase from the estimated 27% who had access in 1998 (8) and that number has been increasing rapidly each year. Internet infertility resources include newsgroups, mailing lists, commercial websites, and non-profit organizations websites (11).
Access to information and support on the Internet has many potential benefits: availability of journal articles and other research materials, medication information available from pharmaceutical companies, opportunities to interact with medical professionals to ask questions and receive information, and contact with other patients sharing similar medical problems who can offer comfort and support. A large-scale research study surveyed a large representative sample of American households about their Internet usage (10). That study found that 66% of respondents used the Internet for gathering information and 21% used it for communicating with others through message boards and chat rooms.
On the other hand, the Internet has some potential detriments. Much of the information available is faulty or misleading and it is often difficult for the consumer to differentiate between what is accurate and what is incorrect. Other negative aspects of Internet use have also been considered. One survey of 17,251 Internet respondents found that more than 11 million Internet users had some form of addiction to the World Wide Web (12) that included consequences such as the disruption of marriages. Thirty six percent of Internet users spend 5 or more hours per week using this medium and these individuals report significant changes in their lives such as isolating them from their family and from face-to-face interactions with members of their community (10). Another study, using a longitudinal approach, found decreases in users communication with members of their family, a narrowing of the size of their social circles, and increases in their levels of depression and loneliness (13) but a more recent follow-up of that same population found more mixed results (14).
To date there has been almost no research on how infertile individuals use the Internet and what consequences they experience as a result of their participation. The present study surveyed visitors to the website of the International Council on Infertility Information Dissemination (INCIID) to learn how they used the resources of this site, how much time they spent on the Internet, and the nature of their involvement with other Internet infertility resources. We were especially interested in learning whether those individuals who used the Internet as their only outlet for talking about infertility differed in their demographic characteristics, their diagnostic and treatment history, their emotional well-being, and how they were affected by their Internet participation compared with those who had additional outlets for talking about infertility. We wanted to ascertain whether having the Internet as their only outlet was associated with higher levels of depression in a manner similar to that found in other Internet usage research and whether depression levels were related to number of hours per day spent using the Internet.
MATERIALS AND METHODS
The study was reviewed by the Rutgers University Office of Research and Sponsored Programs and granted Approval by the Institutional Review Board for the Protection of Human Subjects. We posted a 134 item survey on the website of the International Council on Infertility Information Dissemination (INCIID: http://www.inciid.org ) in March, 1998. The survey, based on the results of a prior small scale newsgroup study (9) consisted of 134 items consisting of the following information categories:
Demographic Information Demographic data collected included: gender, age, education, occupation, state or country of residence, income, marital status, length of marriage, length of time trying to conceive, quality of insurance coverage for infertility, amount spent out-of-pocket for diagnosis and treatment; whether respondent was ever pregnant, ever gave birth, ever miscarried, ever adopted, or ever had an ectopic pregnancy; whether respondent lives in a location with a RESOLVE Inc. chapter, or has ever attended a RESOLVE Inc. meeting.
Diagnostic Information . The survey investigated: whether patient/partner has had hormonal testing, cervical mucus testing, HSG, endometrial biopsy, diagnostic laparoscopy, sperm penetration analysis, semen analysis, immunological testing, genetic testing, used BBT’s , or used ovulation predictor kits); whether their diagnosis was endometriosis, male factor, blocked tubes, ovulatory problem, recurrent miscarriage, uterine problem, luteal phase defect, unexplained infertility, PCOS, “old eggs,” antisperm antibodies, hostile mucus, other immune problem.
Treatment Information The survey investigated whether patient/partner has had ICI, IUI, endometrial surgery, surgery to repair a septum, fibroid surgery, tubal surgery, immunotherapy, varicocelectomy , IVF, GIFT, ZIFT, donor sperm, donor eggs, used a surrogate or gestational carrier, ICSI, assisted hatching, or cytoplasmic transfer.
Medication Usage Information was gathered pertaining to whether patient/partner had used Clomid , Pergonal , Metrodin , Fertinex Humegon , Follistim , Repronex , Gonal F, Synarel , Lupron , Danazol , Puregon , Profasi , Parlodel , Crinone , Estrace , Delestrogen , Heparin, Lovenox , IVIg , Venoglobulin S, Sandoglobulin , RhoGAM , Aspirin, Pregnyl .
Current Status The survey assessed whether patient/partner was currently in treatment, satisfaction with treatment, stage of treatment specific to each given procedure such as such as not started IUI cycle yet, had first meeting with physician, had blood tests, taking medications, waiting for pregnancy test, found out I am/partner is pregnant, found out I am/partner is not pregnant.
Internet Activity This category included number of hours per day spent on Internet for any type of activity, number of daily Internet hours for infertility, whether respondents agreed with, disagreed with, or were uncertain about the statement “Internet forums are my only outlet for talking about infertility”, whether and how often respondent sends or reads messages from any of these mailing lists and number of months active : ONNA, ilist , Panfert , Fortility SM , PCO, MVED, Heartbreaking Choice, Pregnancy & Infant Loss, SPALS, OASIS, Ladies In Waiting, Triplets; whether and how often respondent posts to or reads messages from any of these newsgroups and number of months active: alt.infertility , misc.health.infertility , alt.infertility.primary , alt.infertility.secondary , alt.infertility.pregnancy , alt.infertility.surrogacy , misc.kids.health , sci.med.obgyn , alt.support.pco , alt.support.des , alt.support.endometriosis , alt.adoption , alt.adoption.agency , soc.support.pregnancy.loss .
Information was also gathered about whether and how often respondent posts to or reads messages from any of these INCIID medical discussion groups (which are moderated by physicians) and number of months active: general infertility, IVF and “high tech,” reproductive immunology, miscarriage, endometriosis, male infertility, tubal and microsurgery; whether and how often respondent posts to or reads messages from any of these INCIID support groups: donor/emotional support, adoption, insurance, fertility after 40, pregnancy after infertility, “waiting room”; whether and how often respondent posts to or reads messages from any INCIID chat rooms.
Perceived Consequences Of Internet Activity For each type of venue respondents were asked about the following medical information: how much useful information derived from participation, extent to which participation has had an impact on helpful ways to interact with physicians, help to learn about new treatments, help become a more medically educated consumer, have switched from OB/GYN to reproductive endocrinologist, have switched to a new reproductive endocrinologist, have had new tests and treatments, have moved from “low-tech” to “high-tech” treatments, help manage own case, feel more educated when interacting with physician.
Additionally, questions were asked about the following emotional consequences: providing a “safe” forum to ask questions, providing a forum for sharing news about own treatment, provide a forum for sharing and asking about own “signs and symptoms,” are helpful when feeling depressed, help reduce feelings of being alone, provide a forum where others “understand what I am going through,” helped to realize “my feelings are normal”. Finally, the survey inquired about the following social consequences: feeling more comfortable in difficult social situations, avoid hiding from the fertile world, learning how to respond when people make insensitive remarks, learning to sometimes “bite my tongue”, feeling permitted to avoid certain awkward social situations, learning about differences in ways men and women deal with infertility, learning to be honest with spouse/partner, learning spouse/partner is “not rejecting me” talk more with partner about infertility, becoming closer as a couple.
Self Assessment Of Ways Of Dealing With Infertility We used 4 point Likert rating scales to collect the following information : how educated they feel about infertility, how “in touch” with feelings about infertility, how able to change erroneous cognitions about infertility, how able to work as a “spousal team”, how able to manage their social life, how organized, how able to make a plan to deal with infertility, how able to not give up (so long as it makes sense not to).
Current Social And Emotional Well Being Using 5 point Likert rating scales we collected data about: perceived support (1 5) from spouse, parents, in-laws, friends, other infertile couples, colleagues at work; worries (about job, health, sex life, money, relationship with partner, relationship with friends, relationship with in-laws); satisfaction (using 5 point Likert rating scales) with (job, health, sex life, money, relationship with partner, relationship with friends, relationship with in-laws); life satisfaction (5 point Likert rating scale) ; depression measured by score on 21 item Beck Depression Inventory (16) ; perceived stress, rated in “Life Change Units” - LCU’s (17) required by social readjustment to infertility (in comparison to anchor points including 0 – no stress, 20 – a change in eating habits, 50 – getting fired from a job, 70 – divorce, and 100 – death of a spouse).
Respondents completed the form on line and clicked a “submit” button to send the survey to INCIID. Submitted forms generated e-mail messages containing the items themselves and responses to each item. All surveys received within 6 weeks of the date on which the questionnaire was first posted were inspected. Of these, all questionnaires containing complete information were tabulated. Data were entered in an SPSS database and analyzed with the SPSS 10.0 data analysis system (18). Measures of central tendency and dispersion were generated. Surveys in which respondents indicated that they were uncertain about whether the “Internet is my only outlet for talking about infertility” were not included in group comparisons. Those who agreed with this statement were classified as “Only Outleters ” (OO) and those disagreeing with the statement were classified as “Alternate Outleters ” (AO’s). T-tests were used to compare the responses of OO’s with the responses of AO’s on scale items. Chi square tests were used to compare the distribution of responses of the two groups to items using ordinal scales.