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Online Pediatric Information Seeking Among Mothers of Young Children: Results From a Qualitative Study Using Focus Groups

Online Pediatric Information Seeking Among Mothers of Young Children: Results From a Qualitative... Background: Pre-natal and post-natal periods are times when many women actively seek health information from multiple sources, including the Internet. However, little is known about how pregnant women and mothers of young children seek and process online pediatric health information. Objective: To explore why and where mothers of young children look for online health information and how they determine if the information they receive is trustworthy. Methods: Focus groups were conducted in a Southeastern US city to provide an in-depth exploration of web-related behaviors and beliefs among mothers who work inside and outside of the home. Data from the focus groups were coded using deductive and inductive coding schemes and content was analyzed for the existence of themes. Results: Twenty mothers of young children participated in four focus groups. Most participants sought information on the Internet during pregnancy and nearly all sought online information after their child was born, primarily to diagnose or treat pediatric conditions and to seek advice on parenting and development. Participants mainly used commercial information websites for health information and many expressed disdain for commercial product websites. Many also expressed concerns about the reliability of health information on the web and described strategies for determining how much they trust each website. Conclusions: Women appear to be high information seekers during pregnancy and the first few years following delivery, and this period represents an important window of time for providing online health information. Participants suggested that online information sources and motives for providing online information should be clear in order to increase perceptions of trust. Participants expressed preference for online clinical health information that is presented by clinical professionals, and online parenting advice that is presented from other parents. (J Med Internet Res 2004;6(1):e7) doi: 10.2196/jmir.6.1.e7 KEYWORDS Internet; Pediatrics; Focus Groups; Mothers; Health Education parenting, and pediatrics from which mothers and mothers-to-be Introduction can choose. An additional mass communication channel, the World Wide Web, has grown into a popular destination for Pregnant women and mothers of young children are active women seeking health information on a wide range of pediatric consumers of health information about themselves and their topics. children, and there are countless books, magazines, videos, television programs, classes, and other resources on childbirth, http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 1 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter The proliferation of websites offering pediatric health Measures information is consistent with the growth of the broader universe The focus groups were facilitated using a moderator guide that of health information now available on the Internet. There are was developed using the "funnel approach" by beginning each thought to be hundreds of thousands of health-related websites discussion with less structured interview questions and moving [1] and health information is one of the most researched topics to more focused questions and probes as the discussion among Internet users, [2] particularly among parents [3]. continued [8]. The moderator guide was a female in her However, the high quantity of health related websites should mid-20's, with extensive maternal and child health experience. not be confused with quality. Many studies have found that The facilitator used standard focus group moderator guidelines misleading and even patently false health information is rampant [9] , and the topics that were covered included patterns of online [4-6]. Previous research with Internet users has found Internet use, processes for searching, preferences for types of that most health-related searches start in general search engines pediatric health information on the Internet, and perceptions of and that numerous criteria, including many non-scientific the trustworthiness of health information sources. In addition judgments, are used by information seekers to assess the to the open-ended questions and follow-up probes in the credibility of health-related websites [7]. However, little is moderator guide, examples of websites that provide health known about Internet use among mothers of young children, information about pediatric sun protection were projected onto how they use the web to retrieve pediatric health information, a screen and questions were asked about the participants' and how they make decisions about the veracity of the health impressions and reactions to these sites. Please refer to the information they receive. supplemental "Focus Group Guide" available online. The objective of this study was to explore web use preferences Analysis and perceptions among mothers of young children. Specifically, All data were collected prior to analysis. The focus group why they turn to the web for pediatric health information, where discussions were audiotaped, videotaped and transcribed they go on the web for pediatric health information, and how verbatim, and a research assistant took detailed field notes they determine if the pediatric health information they receive during each discussion. The videotapes were used to assist with online is trustworthy. the assignment of specific participant speakers to the transcribed data. After each focus group, the research assistant and the Methods moderator reviewed the field notes and came to consensus on the themes, issues, and ideas presented in the session. The Design and Sample coding scheme then was developed both inductively using a This study was conducted in early 2001, in a medium-size "cut and paste" technique with each research question [9] and metropolitan area in the Southeastern US with women recruited deductively using relevant constructs from McGuire's from three locations. Two of the locations were day-care Input/Output Matrix [10] as codes. The McGuire Matrix facilities: one was affiliated with a governmental office and one demonstrates the relationship between message factors or was a private day-care facility. Both of these facilities provided "inputs" (e.g., source, channel, receiver) and the resulting steps full-time daycare and the mothers who were recruited through of receiving and processing messages or "outputs" (e.g., them held jobs for pay outside of the home. The third location attention, liking, attitude change). The Ethnograph, [11] a from which women were recruited was a local "mother's center" qualitative data analysis program, was used for coding the data frequented by mothers who mostly did not hold jobs outside of and facilitating analysis by generating code-specific reports the home. Eligibility criteria included being at least 18 years of from the data which were content analyzed for the existence of age, having at least one child younger than five, and using the patterns and themes. Internet at least once in the previous 6 months. Four focus groups were conducted: two groups with mothers Results who worked for pay outside the home and two groups with Participants mothers who did not work outside the home at all, or who did so only part time. The focus groups were separated by A total of 20 women, ranging in age from 22 - 42 years, participant work status so that mothers in each group would participated in the focus groups. The mean age was 34.5 more freely share their experiences and perspectives. In addition, (S.D.=4.95). Seventeen of the participants were Caucasian, two work status may affect people's Internet access and time were African American, and one was Asian American. In available for going online. Although seven or eight women were addition, half of the participants had one child, eight participants recruited for each group, exactly five women participated in had two children, and two participants had three or more each. Additional focus groups were not conducted after children. Eighteen (90%) of the participants reported having convergence was found in the data across the four groups around Internet access at home and 80% of the mothers from the groups the central research questions. Each focus group lasted about that worked outside the home reported having Internet access 90 minutes and study participants each received a $15 at work. honorarium and complimentary childcare for their children Reasons for seeking pediatric health information during the focus groups. The study was approved by the Institutional Review Board at the host university and all Almost all participants reported that during their pregnancy participants provided written informed consent prior to they had sought out information on the Internet about many participating. pregnancy-related topics, and this was especially true for first http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 2 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter pregnancies. Of particular interest to the mothers were websites the doctor's office was not as reachable, and when making that presented information on fetal development with content decisions about going to the emergency room. In contrast, the that was individually tailored to their due date or stage of other group, composed primarily of older mothers, mothers of pregnancy. Many participants also reported that they sought older children, and those with more than one child, reported social support on the web from other pregnant women or that they were more likely to look in books or to call the doctor's mothers, especially during their first pregnancy. For example, answering service than to go online for health information. As one woman stated that "...I was so scared and I would go to this one participant noted, "[Reading online pediatric information web site every day and just look at it (for) like ten minutes is] not like having a book. For me, I like having those books at straight and I just found so much helpful information on it the head of the bed. Because you have your little light on while (about) being scared and not knowing what to expect." Several your spouse is sleeping and you can look at stuff... I still find participants also shared the fact that they used the Internet to the computer to be like, yuck. It's not something you can cuddle research specific problems they were having with their up with." pregnancy. Many participants reported turning to the Internet for advice on The most common reasons that participants reported going parenting issues and to seek social support from other mothers. online for health information following childbirth included: (1) This was particularly common among participants who worked wanting to learn more about diagnosing and treating specific at jobs outside of the home. Several of the working mothers pediatric health conditions, and (2) seeking out advice and noted that they used the Internet to solicit specific advice or support on parenting issues and development. Nearly every share stories with other mothers, many times with women they participant reported that she had used the Internet at least once only knew over the Internet. As one woman said, "It's nice to to look up an illness or health condition that her child was have all of that feedback from these other people so that you experiencing. In many of these cases, the mothers were looking don't feel like you're alone." for information to clarify or supplement what they had been In contrast, many stay-at-home mothers reported that they used told by their doctors and to help them make more informed the Internet to confirm their beliefs or to reassure themselves treatment decisions. For example, one mother whose son had that their perceptions were correct. For example, several chronic ear infections noted: "...I found so much information participants reported that they had looked to the Internet for about how these things happen, which wasn't explained to me reassurance that their child's development or behavior was by his doctor. I found that very informative and felt like I knew "normal" and some participants sought support online for their as much or more than his pediatrician on the subject... And it ideas about parenting. In some cases, mothers were seeking has been very reassuring to me to know that... if I do a little support for their own beliefs to counter conflicting advice being work I can be much better informed about my children's health." offered by their pediatrician, and in other cases mothers were For addressing more acute health conditions, the findings seeking a "second opinion" to confirm that advice received from suggested the presence of two approaches to pediatric their pediatrician was supported by others, especially other information seeking. One group, composed primarily of recent parents. See Table 1 for a list of the key reasons that participants first-time mothers, reported that they regularly turned to the gave for seeking online pediatric information. Internet for advice when their child had acute symptoms, when Table 1. Reasons that mothers sought pediatric health information To learn about diagnosing and treating pediatric conditions To clarify or supplement messages received from practitioners or other sources To confirm or provide reassurance for existing knowledge or beliefs To seek advice or support on parenting issues participants fell into the category of commercial information Sources for pediatric health information websites, and included such examples as BabyCenter.com, Participants reported that the most common way of finding ParentsPlace.com, and WebMD.com. Although these websites pediatric health information on the Internet was through search display commercial advertisements and often sell products, the engines, and when they found websites that they liked they participants did not see this as a potential conflict of interest. would often return to the same sites. Other common ways in Said one participant: "The purpose of [one commercial which the participants reported finding websites with health information site] I think is to sell you stuff but they answer information were through word-of-mouth recommendations questions and it seems to me like that information sounds right." and through advertisements and articles in other media, Many participants found these sites to be comprehensive and especially parenting magazines. convenient and they liked the fact that they could shop, socialize, and research a wide range of topics all from the same website. When asked which websites they visit most frequently for health information, the most popular websites named by the http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 3 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter Organizational websites run by not-for-profit entities, and one participant who frequently visits a commercial information academic websites, run by universities and medical centers also site, for example, described her perceptions of a pediatrician were frequently mentioned as a good place for pediatric health contributor to the site as follows: "I recognize him and his name information. Many participants praised these kinds of websites because I read a lot of stuff that he writes [and] it is almost like for containing reliable information, but some expressed another pediatrician to have available... I get to know him the displeasure that information on these sites, particularly the same as you would [if you] have your own personal academic websites, can be too scientific and hard to understand. relationship." Along the same lines, some participants liked it One mother complained about "...not being able to find what when the source's name and picture were included. For example: you're looking for and the frustration at ending up in 'journal "I think for me, psychologically, I like to see a person's face, level detail' when you're wanting 'mom level detail,' but [ideally] see what they look like, just because it helps me to decide if I you want 'mom level detail' from an expert." trust them or not." The commercial product websites maintained by companies In contrast, however, perceptions of source trustworthiness can selling specific baby products such as diapers, infant formula, break down when participants observe disagreements among or baby food were the least preferred type of health information the experts. For example, one mother noted, "...All of these website. Many participants reported that they had received direct pediatricians are basically contradicting themselves and they mail or e-mail from such companies. However, few participants are experts. So if they're experts, why should we listen to them had, or would, go to these sites for health information, primarily when they are contradicting each other? But that's one thing because they were perceived to have an "ulterior motive" that good about the Internet. You get on and you see all of these undercuts the reliability of the health information they provide. different ideas and you realize these guys aren't real experts. It This sentiment was more common among stay-at-home mothers makes you feel better as a mom." than those mothers who worked outside the home. One mother The other highly trusted source for pediatric health information who was critical of these websites representatively opined, "If on the web was other parents, but only in specific situations. [a major baby food manufacturer] sponsors [the website then] Other parents were commonly seen as a good source of support, they just want to sell this stuff to me." reassurance, and advice on behavioral issues and parenting tips, but their advice was considered more suspect on issues of Determining trust of pediatric health information medical diagnoses and treatment. For example, when Trusting the reliability of information on the Internet was considering a webpage on pediatric skin cancer prevention expressed as a serious concern by many focus group participants. written by a parent, one participant observed, "On this topic, I When they were asked how they determine which websites to don't think what other parents have to say is of any use to me. trust for health information, several strategies of determining On other things I think it is, but not on this subject." trust emerged. One strategy involved trying to determine the motives of the website owners. If the primary purpose of an Finally, the other strategy participants reported using to assess organization's website is perceived as the sale of their products, the trustworthiness of health information websites had to do many mothers expressed skepticism for the trustworthiness of with information repetition and convergence. Several the health information presented there. In contrast, if the participants reported that information appearing many times in organization presenting the online information has little or many places is often considered to be more trustworthy than nothing to gain financially by putting out the information, they information that is not repeated. As one mother noted, "If you are more likely to be trusted. In a similar vein, when asked about can find it in five or six spots [then] in my mind it is more likely the relevance of different domain designations (i.e., .edu, .org, that it is probably valid than if you read it one place but no one .net, .com) to trustworthiness, some participants noted that the else is corroborating that or agreeing with it." Internet domain type can affect their perceptions of trust. As Information convergence with other non-Internet reference one participant observed, "A university setting I think...has more sources was also related to perceptions of trust. Almost all the truth than a dot-com." participants reported that they would believe pediatric health Another strategy that participants mentioned for determining information to be true if they received consistent information the trust of a health website was to try to identify and evaluate about it on the Internet, from their doctor, and from other the source of the information being presented. On many parents. One participant described her process of seeking websites, the source of any given page or piece of information information convergence as follows: "I tend to use books first may be an individual writer, an organization, or even a different and talk to people second like [other] mothers... or relatives and website, but some participants noted that discerning the original then thirdly either go to the Web first to try to find more source of online information can be difficult. When the source complimentary information and then check with the could be determined, the most trusted sources, according to pediatrician." Another noted, "It doesn't matter what I read in almost all the participants, were physicians and nurses, a book or what I look up on the net, I'm going, in the end, if it particularly when the information related to specific illnesses is a health issue, [to] go ask my doctor. And if I don't like his or conditions. answer, I'll ask another doctor." See Table 2 for a list of the strategies participants gave for determining the credibility of It was also noted that perceived trust in specific web-based pediatric websites. sources of pediatric health information could increase over time as readers became more familiar with the source. For example, http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 4 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter Table 2. How mothers determined trust of pediatric health information Determine the motives of the website providers Identify the source of the information being presented Look for repetition and convergence of information from multiple sources information and other parents as the most trusted source for Discussion advice on parenting and for social support. Understanding why, where, and how parents use the Internet to Our study participants expressed a great deal of overall obtain pediatric health information is particularly important for skepticism and concern about the trustworthiness of sites, caregivers and health educators because parents are turning to especially those that focus on selling specific baby-related this information source with increasing frequency. Madden and products, which are similar to those found in other studies of Raine estimated that 80% of all Internet users, or more than 70 Internet users that have revealed that many people do not trust million Americans in December 2002, sought health information or believe much of the information they receive online [21-22]. online [12]. About half of these online health information One study similar to this one that explored perceptions about seekers are thought to have been seeking health information for online human genetics communication among Internet users themselves and the other half were searching for health found that most users would take the health information they information for someone else [13]. Almost 60% of parents with received on the Internet with a "grain of salt." [23] Internet access are active seekers of online health information Previous research with Internet users found multiple strategies [3]. These rates are likely to increase as more and more families for assessing the credibility of health related websites [7]. The obtain Internet access from home and more pediatric websites most trusted sites included those from official authorities, and become available online. with professional layouts, understandable writing, and The mothers in our study reported going online to learn more appropriate source citations [7]. An alternative strategy for about the stages of fetal and child development, especially for assessing credibility that was revealed in our study was the use their first child. This finding suggests that pre-natal and of repetition, i.e., many participants reported a greater trust of post-natal women can be high information seekers and that these online health information when it was repeated on multiple time periods offer important opportunities for reaching mothers websites or when the information was discovered to be and mothers-to-be with essential pediatric health information. consistent across multiple communication channels. This finding The information that these women found most useful were is consistent with research that has found that online health messages that were matched, or tailored, to their specific stage information seekers often feel reassured by advice they find of pregnancy or the developmental stage of their child. The that is repeated at more than one site and that matches what preferences these mothers expressed for personalized messages they already knew [16]. Using this type of "information are consistent with other studies that have found strong convergence" strategy to establish accuracy of health preferences for tailored health messages over generic health information can be a useful way to confirm that ideas or opinions messages [14-16]. Recent studies have found that web-based are widely held and accepted, especially when multiple sources tailored messages are more effective than non-tailored web of information are considered such as personal pediatricians, messages at changing participants' health-related beliefs and books, and peer-reviewed articles. This approach may be behaviors, [17,18] but there have been no known studies on the somewhat less effective, however, when convergence is sought effectiveness of web-based tailored interventions for pregnant only for unregulated information that appears on the web. women or new mothers. This potential opportunity for effective Due to the World Wide Web's vast size and unregulated nature, prenatal and postpartum interventions warrants additional websites are likely to exist that advocate almost every attention and research. conceivable position on any controversial pediatric topic. The primary reasons given by the mothers in our study for going Therefore, if a parent seeks a supporting opinion for a potentially online for health information were to research specific dangerous or inappropriate course of treatment for their child, conditions or symptoms that their child was experiencing, and they are likely to find multiple websites advocating that position to get advice and support on parenting related issues. These if they look hard enough. To help prevent this from happening, online information seeking behaviors are consistent with studies practitioners should be aware that parents often seek "second of other Internet-using populations which have found that opinions" online, especially when they don't like or understand Internet users frequently seek online information on specific what they have been told. Practitioners may consider health conditions [19] and that they seek advice and social recommending specific websites to their patients and their support for the different specific situations and challenges they families that are known to be accurate, trustworthy, and face [20]. Our findings also revealed that the mothers' most consistent with best practices. Experts recommend that Internet trusted sources for these two types of information are different; health seekers allow ample time for conducting a thorough not surprisingly, pediatricians and pediatric nurses were search, visit at least four different sites, determine the sponsor described as the most trusted source for online pediatric health of each online health site, and identify the date when the information was last updated [19]. http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 5 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter A number of limitations should be considered when interpreting about online health information. Finally, the number of focus the data presented in this study. As with most qualitative groups conducted and the overall number of participants was research, caution should be exercised in generalizing our relatively small. Despite the fact that the data demonstrated findings to all mothers or other populations of mothers of young considerable convergence, it is entirely possible that other children. In addition, focus group research uses self-reporting important opinions and perspectives were missed. techniques, and it is possible that some participants' comments In conclusion, the findings from this study suggest that the are inconsistent with their actual experiences. Participants in pre-natal and post-natal periods may represent "teachable this study had higher than average educational levels and were moments" when women are high information seekers for online all from the greater metropolitan area of one medium-sized city pediatric information. Because there are countless pediatric in the Southeastern US. In addition, the sample had minimal health-related websites available presenting widely divergent racial and ethnic diversity, likely a result of the locations from opinions of varying degrees of quality and accuracy, it is which the participants were recruited. All participants were important that practitioners be educated about high-quality, required to have used the Internet at least one time in the accurate pediatric health websites and encourage their patients previous 6 months, but they were not required to have to avoid inappropriate websites. Participants largely preferred specifically looked up pediatric health information during that websites with tailored health information, pediatric content that time period. Although almost all participants acknowledged is presented by caregivers, and parenting advice that is presented viewing pediatric information online, it is possible that some by other parents. Information that is repeated consistently across participants' comments referred to older or more theoretical multiple sources or websites may increase perceptions of trust. experiences. In addition, only mothers were recruited for this Future research should seek to replicate and expand upon these study because women are twice as likely as men to seek online findings with more diverse populations and through quantitative health information for their children, [2] and it is possible that surveys administered to larger and more generalizabile samples fathers have considerably different experiences and perceptions of mothers and fathers. Acknowledgments The authors wish to thank Dawn Haney and Erin Lemieux for their assistance, Amy Barnett for her input on the manuscript, and the women who participated in the focus groups for sharing their time, experiences, and insights. Conflicts of Interest None declared. Multimedia Appendix Focus Group Guide: [PDF File, 21KB-] References 1. Eng TR. 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American journalism review 1998 Aug [FREE Full text] 23. Bernhardt JM, Lariscy RAW, Parrott RL, Silk KJ, Felter EM. Perceived barriers to Internet-based health communication on human genetics. J Health Commun 2002;7(4):325-340. [Medline: 22243103] [doi: 10.1080/10810730290088166] submitted 30.12.03; peer-reviewed by H Skinner, G Peterson, B Poland; comments to author 12.01.04; revised version received 11.02.04; accepted 16.02.03; published 01.03.04 Please cite as: Bernhardt JM, Felter EM J Med Internet Res 2004;6(1):e7 URL: http://www.jmir.org/2004/1/e5/ doi: 10.2196/jmir.6.1.e7 PMID: 15111273 © Jay M Bernhardt, Elizabeth M Felter. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 1.3.2004. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited, including full bibliographic details and the URL (see "please cite as" above), and this statement is included. http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 7 (page number not for citation purposes) XSL FO RenderX http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Medical Internet Research JMIR Publications

Online Pediatric Information Seeking Among Mothers of Young Children: Results From a Qualitative Study Using Focus Groups

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Abstract

Background: Pre-natal and post-natal periods are times when many women actively seek health information from multiple sources, including the Internet. However, little is known about how pregnant women and mothers of young children seek and process online pediatric health information. Objective: To explore why and where mothers of young children look for online health information and how they determine if the information they receive is trustworthy. Methods: Focus groups were conducted in a Southeastern US city to provide an in-depth exploration of web-related behaviors and beliefs among mothers who work inside and outside of the home. Data from the focus groups were coded using deductive and inductive coding schemes and content was analyzed for the existence of themes. Results: Twenty mothers of young children participated in four focus groups. Most participants sought information on the Internet during pregnancy and nearly all sought online information after their child was born, primarily to diagnose or treat pediatric conditions and to seek advice on parenting and development. Participants mainly used commercial information websites for health information and many expressed disdain for commercial product websites. Many also expressed concerns about the reliability of health information on the web and described strategies for determining how much they trust each website. Conclusions: Women appear to be high information seekers during pregnancy and the first few years following delivery, and this period represents an important window of time for providing online health information. Participants suggested that online information sources and motives for providing online information should be clear in order to increase perceptions of trust. Participants expressed preference for online clinical health information that is presented by clinical professionals, and online parenting advice that is presented from other parents. (J Med Internet Res 2004;6(1):e7) doi: 10.2196/jmir.6.1.e7 KEYWORDS Internet; Pediatrics; Focus Groups; Mothers; Health Education parenting, and pediatrics from which mothers and mothers-to-be Introduction can choose. An additional mass communication channel, the World Wide Web, has grown into a popular destination for Pregnant women and mothers of young children are active women seeking health information on a wide range of pediatric consumers of health information about themselves and their topics. children, and there are countless books, magazines, videos, television programs, classes, and other resources on childbirth, http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 1 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter The proliferation of websites offering pediatric health Measures information is consistent with the growth of the broader universe The focus groups were facilitated using a moderator guide that of health information now available on the Internet. There are was developed using the "funnel approach" by beginning each thought to be hundreds of thousands of health-related websites discussion with less structured interview questions and moving [1] and health information is one of the most researched topics to more focused questions and probes as the discussion among Internet users, [2] particularly among parents [3]. continued [8]. The moderator guide was a female in her However, the high quantity of health related websites should mid-20's, with extensive maternal and child health experience. not be confused with quality. Many studies have found that The facilitator used standard focus group moderator guidelines misleading and even patently false health information is rampant [9] , and the topics that were covered included patterns of online [4-6]. Previous research with Internet users has found Internet use, processes for searching, preferences for types of that most health-related searches start in general search engines pediatric health information on the Internet, and perceptions of and that numerous criteria, including many non-scientific the trustworthiness of health information sources. In addition judgments, are used by information seekers to assess the to the open-ended questions and follow-up probes in the credibility of health-related websites [7]. However, little is moderator guide, examples of websites that provide health known about Internet use among mothers of young children, information about pediatric sun protection were projected onto how they use the web to retrieve pediatric health information, a screen and questions were asked about the participants' and how they make decisions about the veracity of the health impressions and reactions to these sites. Please refer to the information they receive. supplemental "Focus Group Guide" available online. The objective of this study was to explore web use preferences Analysis and perceptions among mothers of young children. Specifically, All data were collected prior to analysis. The focus group why they turn to the web for pediatric health information, where discussions were audiotaped, videotaped and transcribed they go on the web for pediatric health information, and how verbatim, and a research assistant took detailed field notes they determine if the pediatric health information they receive during each discussion. The videotapes were used to assist with online is trustworthy. the assignment of specific participant speakers to the transcribed data. After each focus group, the research assistant and the Methods moderator reviewed the field notes and came to consensus on the themes, issues, and ideas presented in the session. The Design and Sample coding scheme then was developed both inductively using a This study was conducted in early 2001, in a medium-size "cut and paste" technique with each research question [9] and metropolitan area in the Southeastern US with women recruited deductively using relevant constructs from McGuire's from three locations. Two of the locations were day-care Input/Output Matrix [10] as codes. The McGuire Matrix facilities: one was affiliated with a governmental office and one demonstrates the relationship between message factors or was a private day-care facility. Both of these facilities provided "inputs" (e.g., source, channel, receiver) and the resulting steps full-time daycare and the mothers who were recruited through of receiving and processing messages or "outputs" (e.g., them held jobs for pay outside of the home. The third location attention, liking, attitude change). The Ethnograph, [11] a from which women were recruited was a local "mother's center" qualitative data analysis program, was used for coding the data frequented by mothers who mostly did not hold jobs outside of and facilitating analysis by generating code-specific reports the home. Eligibility criteria included being at least 18 years of from the data which were content analyzed for the existence of age, having at least one child younger than five, and using the patterns and themes. Internet at least once in the previous 6 months. Four focus groups were conducted: two groups with mothers Results who worked for pay outside the home and two groups with Participants mothers who did not work outside the home at all, or who did so only part time. The focus groups were separated by A total of 20 women, ranging in age from 22 - 42 years, participant work status so that mothers in each group would participated in the focus groups. The mean age was 34.5 more freely share their experiences and perspectives. In addition, (S.D.=4.95). Seventeen of the participants were Caucasian, two work status may affect people's Internet access and time were African American, and one was Asian American. In available for going online. Although seven or eight women were addition, half of the participants had one child, eight participants recruited for each group, exactly five women participated in had two children, and two participants had three or more each. Additional focus groups were not conducted after children. Eighteen (90%) of the participants reported having convergence was found in the data across the four groups around Internet access at home and 80% of the mothers from the groups the central research questions. Each focus group lasted about that worked outside the home reported having Internet access 90 minutes and study participants each received a $15 at work. honorarium and complimentary childcare for their children Reasons for seeking pediatric health information during the focus groups. The study was approved by the Institutional Review Board at the host university and all Almost all participants reported that during their pregnancy participants provided written informed consent prior to they had sought out information on the Internet about many participating. pregnancy-related topics, and this was especially true for first http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 2 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter pregnancies. Of particular interest to the mothers were websites the doctor's office was not as reachable, and when making that presented information on fetal development with content decisions about going to the emergency room. In contrast, the that was individually tailored to their due date or stage of other group, composed primarily of older mothers, mothers of pregnancy. Many participants also reported that they sought older children, and those with more than one child, reported social support on the web from other pregnant women or that they were more likely to look in books or to call the doctor's mothers, especially during their first pregnancy. For example, answering service than to go online for health information. As one woman stated that "...I was so scared and I would go to this one participant noted, "[Reading online pediatric information web site every day and just look at it (for) like ten minutes is] not like having a book. For me, I like having those books at straight and I just found so much helpful information on it the head of the bed. Because you have your little light on while (about) being scared and not knowing what to expect." Several your spouse is sleeping and you can look at stuff... I still find participants also shared the fact that they used the Internet to the computer to be like, yuck. It's not something you can cuddle research specific problems they were having with their up with." pregnancy. Many participants reported turning to the Internet for advice on The most common reasons that participants reported going parenting issues and to seek social support from other mothers. online for health information following childbirth included: (1) This was particularly common among participants who worked wanting to learn more about diagnosing and treating specific at jobs outside of the home. Several of the working mothers pediatric health conditions, and (2) seeking out advice and noted that they used the Internet to solicit specific advice or support on parenting issues and development. Nearly every share stories with other mothers, many times with women they participant reported that she had used the Internet at least once only knew over the Internet. As one woman said, "It's nice to to look up an illness or health condition that her child was have all of that feedback from these other people so that you experiencing. In many of these cases, the mothers were looking don't feel like you're alone." for information to clarify or supplement what they had been In contrast, many stay-at-home mothers reported that they used told by their doctors and to help them make more informed the Internet to confirm their beliefs or to reassure themselves treatment decisions. For example, one mother whose son had that their perceptions were correct. For example, several chronic ear infections noted: "...I found so much information participants reported that they had looked to the Internet for about how these things happen, which wasn't explained to me reassurance that their child's development or behavior was by his doctor. I found that very informative and felt like I knew "normal" and some participants sought support online for their as much or more than his pediatrician on the subject... And it ideas about parenting. In some cases, mothers were seeking has been very reassuring to me to know that... if I do a little support for their own beliefs to counter conflicting advice being work I can be much better informed about my children's health." offered by their pediatrician, and in other cases mothers were For addressing more acute health conditions, the findings seeking a "second opinion" to confirm that advice received from suggested the presence of two approaches to pediatric their pediatrician was supported by others, especially other information seeking. One group, composed primarily of recent parents. See Table 1 for a list of the key reasons that participants first-time mothers, reported that they regularly turned to the gave for seeking online pediatric information. Internet for advice when their child had acute symptoms, when Table 1. Reasons that mothers sought pediatric health information To learn about diagnosing and treating pediatric conditions To clarify or supplement messages received from practitioners or other sources To confirm or provide reassurance for existing knowledge or beliefs To seek advice or support on parenting issues participants fell into the category of commercial information Sources for pediatric health information websites, and included such examples as BabyCenter.com, Participants reported that the most common way of finding ParentsPlace.com, and WebMD.com. Although these websites pediatric health information on the Internet was through search display commercial advertisements and often sell products, the engines, and when they found websites that they liked they participants did not see this as a potential conflict of interest. would often return to the same sites. Other common ways in Said one participant: "The purpose of [one commercial which the participants reported finding websites with health information site] I think is to sell you stuff but they answer information were through word-of-mouth recommendations questions and it seems to me like that information sounds right." and through advertisements and articles in other media, Many participants found these sites to be comprehensive and especially parenting magazines. convenient and they liked the fact that they could shop, socialize, and research a wide range of topics all from the same website. When asked which websites they visit most frequently for health information, the most popular websites named by the http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 3 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter Organizational websites run by not-for-profit entities, and one participant who frequently visits a commercial information academic websites, run by universities and medical centers also site, for example, described her perceptions of a pediatrician were frequently mentioned as a good place for pediatric health contributor to the site as follows: "I recognize him and his name information. Many participants praised these kinds of websites because I read a lot of stuff that he writes [and] it is almost like for containing reliable information, but some expressed another pediatrician to have available... I get to know him the displeasure that information on these sites, particularly the same as you would [if you] have your own personal academic websites, can be too scientific and hard to understand. relationship." Along the same lines, some participants liked it One mother complained about "...not being able to find what when the source's name and picture were included. For example: you're looking for and the frustration at ending up in 'journal "I think for me, psychologically, I like to see a person's face, level detail' when you're wanting 'mom level detail,' but [ideally] see what they look like, just because it helps me to decide if I you want 'mom level detail' from an expert." trust them or not." The commercial product websites maintained by companies In contrast, however, perceptions of source trustworthiness can selling specific baby products such as diapers, infant formula, break down when participants observe disagreements among or baby food were the least preferred type of health information the experts. For example, one mother noted, "...All of these website. Many participants reported that they had received direct pediatricians are basically contradicting themselves and they mail or e-mail from such companies. However, few participants are experts. So if they're experts, why should we listen to them had, or would, go to these sites for health information, primarily when they are contradicting each other? But that's one thing because they were perceived to have an "ulterior motive" that good about the Internet. You get on and you see all of these undercuts the reliability of the health information they provide. different ideas and you realize these guys aren't real experts. It This sentiment was more common among stay-at-home mothers makes you feel better as a mom." than those mothers who worked outside the home. One mother The other highly trusted source for pediatric health information who was critical of these websites representatively opined, "If on the web was other parents, but only in specific situations. [a major baby food manufacturer] sponsors [the website then] Other parents were commonly seen as a good source of support, they just want to sell this stuff to me." reassurance, and advice on behavioral issues and parenting tips, but their advice was considered more suspect on issues of Determining trust of pediatric health information medical diagnoses and treatment. For example, when Trusting the reliability of information on the Internet was considering a webpage on pediatric skin cancer prevention expressed as a serious concern by many focus group participants. written by a parent, one participant observed, "On this topic, I When they were asked how they determine which websites to don't think what other parents have to say is of any use to me. trust for health information, several strategies of determining On other things I think it is, but not on this subject." trust emerged. One strategy involved trying to determine the motives of the website owners. If the primary purpose of an Finally, the other strategy participants reported using to assess organization's website is perceived as the sale of their products, the trustworthiness of health information websites had to do many mothers expressed skepticism for the trustworthiness of with information repetition and convergence. Several the health information presented there. In contrast, if the participants reported that information appearing many times in organization presenting the online information has little or many places is often considered to be more trustworthy than nothing to gain financially by putting out the information, they information that is not repeated. As one mother noted, "If you are more likely to be trusted. In a similar vein, when asked about can find it in five or six spots [then] in my mind it is more likely the relevance of different domain designations (i.e., .edu, .org, that it is probably valid than if you read it one place but no one .net, .com) to trustworthiness, some participants noted that the else is corroborating that or agreeing with it." Internet domain type can affect their perceptions of trust. As Information convergence with other non-Internet reference one participant observed, "A university setting I think...has more sources was also related to perceptions of trust. Almost all the truth than a dot-com." participants reported that they would believe pediatric health Another strategy that participants mentioned for determining information to be true if they received consistent information the trust of a health website was to try to identify and evaluate about it on the Internet, from their doctor, and from other the source of the information being presented. On many parents. One participant described her process of seeking websites, the source of any given page or piece of information information convergence as follows: "I tend to use books first may be an individual writer, an organization, or even a different and talk to people second like [other] mothers... or relatives and website, but some participants noted that discerning the original then thirdly either go to the Web first to try to find more source of online information can be difficult. When the source complimentary information and then check with the could be determined, the most trusted sources, according to pediatrician." Another noted, "It doesn't matter what I read in almost all the participants, were physicians and nurses, a book or what I look up on the net, I'm going, in the end, if it particularly when the information related to specific illnesses is a health issue, [to] go ask my doctor. And if I don't like his or conditions. answer, I'll ask another doctor." See Table 2 for a list of the strategies participants gave for determining the credibility of It was also noted that perceived trust in specific web-based pediatric websites. sources of pediatric health information could increase over time as readers became more familiar with the source. For example, http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 4 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter Table 2. How mothers determined trust of pediatric health information Determine the motives of the website providers Identify the source of the information being presented Look for repetition and convergence of information from multiple sources information and other parents as the most trusted source for Discussion advice on parenting and for social support. Understanding why, where, and how parents use the Internet to Our study participants expressed a great deal of overall obtain pediatric health information is particularly important for skepticism and concern about the trustworthiness of sites, caregivers and health educators because parents are turning to especially those that focus on selling specific baby-related this information source with increasing frequency. Madden and products, which are similar to those found in other studies of Raine estimated that 80% of all Internet users, or more than 70 Internet users that have revealed that many people do not trust million Americans in December 2002, sought health information or believe much of the information they receive online [21-22]. online [12]. About half of these online health information One study similar to this one that explored perceptions about seekers are thought to have been seeking health information for online human genetics communication among Internet users themselves and the other half were searching for health found that most users would take the health information they information for someone else [13]. Almost 60% of parents with received on the Internet with a "grain of salt." [23] Internet access are active seekers of online health information Previous research with Internet users found multiple strategies [3]. These rates are likely to increase as more and more families for assessing the credibility of health related websites [7]. The obtain Internet access from home and more pediatric websites most trusted sites included those from official authorities, and become available online. with professional layouts, understandable writing, and The mothers in our study reported going online to learn more appropriate source citations [7]. An alternative strategy for about the stages of fetal and child development, especially for assessing credibility that was revealed in our study was the use their first child. This finding suggests that pre-natal and of repetition, i.e., many participants reported a greater trust of post-natal women can be high information seekers and that these online health information when it was repeated on multiple time periods offer important opportunities for reaching mothers websites or when the information was discovered to be and mothers-to-be with essential pediatric health information. consistent across multiple communication channels. This finding The information that these women found most useful were is consistent with research that has found that online health messages that were matched, or tailored, to their specific stage information seekers often feel reassured by advice they find of pregnancy or the developmental stage of their child. The that is repeated at more than one site and that matches what preferences these mothers expressed for personalized messages they already knew [16]. Using this type of "information are consistent with other studies that have found strong convergence" strategy to establish accuracy of health preferences for tailored health messages over generic health information can be a useful way to confirm that ideas or opinions messages [14-16]. Recent studies have found that web-based are widely held and accepted, especially when multiple sources tailored messages are more effective than non-tailored web of information are considered such as personal pediatricians, messages at changing participants' health-related beliefs and books, and peer-reviewed articles. This approach may be behaviors, [17,18] but there have been no known studies on the somewhat less effective, however, when convergence is sought effectiveness of web-based tailored interventions for pregnant only for unregulated information that appears on the web. women or new mothers. This potential opportunity for effective Due to the World Wide Web's vast size and unregulated nature, prenatal and postpartum interventions warrants additional websites are likely to exist that advocate almost every attention and research. conceivable position on any controversial pediatric topic. The primary reasons given by the mothers in our study for going Therefore, if a parent seeks a supporting opinion for a potentially online for health information were to research specific dangerous or inappropriate course of treatment for their child, conditions or symptoms that their child was experiencing, and they are likely to find multiple websites advocating that position to get advice and support on parenting related issues. These if they look hard enough. To help prevent this from happening, online information seeking behaviors are consistent with studies practitioners should be aware that parents often seek "second of other Internet-using populations which have found that opinions" online, especially when they don't like or understand Internet users frequently seek online information on specific what they have been told. Practitioners may consider health conditions [19] and that they seek advice and social recommending specific websites to their patients and their support for the different specific situations and challenges they families that are known to be accurate, trustworthy, and face [20]. Our findings also revealed that the mothers' most consistent with best practices. Experts recommend that Internet trusted sources for these two types of information are different; health seekers allow ample time for conducting a thorough not surprisingly, pediatricians and pediatric nurses were search, visit at least four different sites, determine the sponsor described as the most trusted source for online pediatric health of each online health site, and identify the date when the information was last updated [19]. http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 5 (page number not for citation purposes) XSL FO RenderX JOURNAL OF MEDICAL INTERNET RESEARCH Bernhardt & Felter A number of limitations should be considered when interpreting about online health information. Finally, the number of focus the data presented in this study. As with most qualitative groups conducted and the overall number of participants was research, caution should be exercised in generalizing our relatively small. Despite the fact that the data demonstrated findings to all mothers or other populations of mothers of young considerable convergence, it is entirely possible that other children. In addition, focus group research uses self-reporting important opinions and perspectives were missed. techniques, and it is possible that some participants' comments In conclusion, the findings from this study suggest that the are inconsistent with their actual experiences. Participants in pre-natal and post-natal periods may represent "teachable this study had higher than average educational levels and were moments" when women are high information seekers for online all from the greater metropolitan area of one medium-sized city pediatric information. Because there are countless pediatric in the Southeastern US. In addition, the sample had minimal health-related websites available presenting widely divergent racial and ethnic diversity, likely a result of the locations from opinions of varying degrees of quality and accuracy, it is which the participants were recruited. All participants were important that practitioners be educated about high-quality, required to have used the Internet at least one time in the accurate pediatric health websites and encourage their patients previous 6 months, but they were not required to have to avoid inappropriate websites. Participants largely preferred specifically looked up pediatric health information during that websites with tailored health information, pediatric content that time period. Although almost all participants acknowledged is presented by caregivers, and parenting advice that is presented viewing pediatric information online, it is possible that some by other parents. Information that is repeated consistently across participants' comments referred to older or more theoretical multiple sources or websites may increase perceptions of trust. experiences. In addition, only mothers were recruited for this Future research should seek to replicate and expand upon these study because women are twice as likely as men to seek online findings with more diverse populations and through quantitative health information for their children, [2] and it is possible that surveys administered to larger and more generalizabile samples fathers have considerably different experiences and perceptions of mothers and fathers. Acknowledgments The authors wish to thank Dawn Haney and Erin Lemieux for their assistance, Amy Barnett for her input on the manuscript, and the women who participated in the focus groups for sharing their time, experiences, and insights. Conflicts of Interest None declared. Multimedia Appendix Focus Group Guide: [PDF File, 21KB-] References 1. Eng TR. 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American journalism review 1998 Aug [FREE Full text] 23. Bernhardt JM, Lariscy RAW, Parrott RL, Silk KJ, Felter EM. Perceived barriers to Internet-based health communication on human genetics. J Health Commun 2002;7(4):325-340. [Medline: 22243103] [doi: 10.1080/10810730290088166] submitted 30.12.03; peer-reviewed by H Skinner, G Peterson, B Poland; comments to author 12.01.04; revised version received 11.02.04; accepted 16.02.03; published 01.03.04 Please cite as: Bernhardt JM, Felter EM J Med Internet Res 2004;6(1):e7 URL: http://www.jmir.org/2004/1/e5/ doi: 10.2196/jmir.6.1.e7 PMID: 15111273 © Jay M Bernhardt, Elizabeth M Felter. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 1.3.2004. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited, including full bibliographic details and the URL (see "please cite as" above), and this statement is included. http://www.jmir.org/2004/1/e5/ J Med Internet Res 2004 | vol. 6 | iss. 1 | e7 | p. 7 (page number not for citation purposes) XSL FO RenderX

Journal

Journal of Medical Internet Research – JMIR Publications

Published: Mar 1, 2004

Keywords: Internet, Pediatrics, Focus Groups, Mothers, Health Education

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