What Are Pregnant Women’s Information Needs and Information Seeking Behaviors Prior to Their Prenatal Genetic Counseling?

Abstract

As a result of the Human Genome Project, more genetic diagnostic tests have become available to the public and genetic-related information has also grown exponentially. Pregnant women are now routinely offered tests for chromosomal disorders and screenings for genetic conditions that are relevant to their situations. In order to facilitate the information system (IS) development to support their informed decision-making, it is imperative for the IS designer to recognize their unique information needs and patterns of information seeking behavior (ISB) first. This paper presents results of a pilot study that examined pregnant women’s information needs, ISBs, and information resources used prior to their prenatal genetic counseling. Findings suggest three distinctive areas, content, format, and timing, for IS design considerations.

INTRODUCTION

The revolution in molecular genetics manifests itself most clearly in the form of diagnostic testing for genetic disorders. As a result of completing the human genome sequence, genetic information for common single-gene and multifactorial disorders has become increasingly available to lay people. Additionally, advances in computer technology have made online resources available not only to health care professionals but also to the general public. The widespread availability of information does not necessarily guarantee its comprehension, which risks that the new genetic information may not be well understood by the people who need the most. One of the important areas addressed by the National Human Genome Research Institute (NHGRI) was to make genomic information easily available to the public via print, web and video educational product¹.

Wilson’s models of information seeking behavior (ISB) have suggested that the behavior occurs as a consequence of the information user perceiving a need for information. In order to satisfy the need, the individual will have demands for new information, therefore ISB takes place². Information needs vary across different individuals at different points in time. Many studies have illustrated that such differences exist among cancer patients^3,4. Studies on people’s ISBs have been largely focused on factors that influence the behaviors and patterns of the behaviors, however, they were mostly focused on cancer patients, caregivers, and health care providers^5–10. Cancer patients’ information needs and patterns of ISBs could be very different from the pregnant women’s. Age and health status are two main factors that may influence individual’s information needs and ISBs. Patients who were acutely ill, with cancer diagnosis, or older tend to have different information needs and patterns of ISBs when compared to healthy people^11,12. Therefore, pregnant women might behave differently than cancer patients. No prior study has examined pregnant women’s genetic health concerns with respect to their information needs and ISBs.

Women are now offered carrier testing, and pregnant women are routinely offered testing for chromosomal disorders and other genetic conditions^13,14. Before these tests are offered, providing relevant and sufficient information to them is the first and foremost important step to help women make an informed decision. Furthermore, in order to facilitate information system (IS) development, IS designer’s first step must be to understand intended users’ information needs, ISB, and preference of information delivery method. Assessing information needs and ISB of women who are concerned with genetic health issues is important in obtaining a greater insight into the possible requirements for providing relevant and useful information during the reproductive decision-making process. Also, understanding information resources used by women might help to identify proper ways of presenting information to them.

METHODS

This pilot study employed a qualitative design to explore women’s information needs, ISBs and information resources used prior to their prenatal genetic counseling.

Sample

A convenience sample of 10 women was recruited through the genetic counselors at a Midwest prenatal Diagnosis Center. Data were collected between October 2004 and February 2005. Eligible participants were women who were 18-years-old or older, English-speaking, and had a prenatal genetic counseling appointment with a counselor, but had no genetic testing done prior to their appointments. Human Subjects approval was obtained through both the University of Wisconsin-Madison Health Sciences and the recruitment site’s Institutional Review Boards. All participants signed informed consent to participate in the study.

Procedures

Potential participants were identified by the genetic counselors at the clinic. The counselor contacted women who had a scheduled clinic appointment for prenatal genetic counseling via telephone prior to their visits, to invite them to participate in this study. Women who were interested in participating in the study were given choices of either a face-to-face or telephone interview. Data were collected via semi-structured questions and a survey. These were developed by the researchers for this study. The interview consisted of a series of semi-structured questions posed to participants to elicit information on women’s information needs, ISBs and information resources used related to prenatal genetic counseling. The survey used multiple choice and open-ended questions to elicit information on women’s demographic details and characteristics of information technology use prior to their counseling appointment. The interview approximately lasted 20 to 30 minutes. With participant’s permission, the interview session was audio-taped.

Data Analysis

Interviews were transcribed into text files with all identifiable information removed then analyzed according to the methods of content analysis¹⁵. Data analysis encompassed three stages: (1) inductive analysis, which involved reading of a sample of three interview transcripts by the researcher independently to identify major categories that reflected elements of research questions; (2) data reduction, which involved coding all three interview transcripts, classifying them by the major categories and identifying subcategories under each major category; and (3) coding the remaining seven interview transcripts using established major- and subcategories. All names appearing in this article have been changed to protect participant anonymity.

RESULT

Participants

Twelve women were interested in participating in the study and approached by the investigator. Two of them declined at the telephone contact due to changes in their health status. A total of ten women completed the interviews, and all were via telephone. All participants were married and between 28 and 44 years of age. Seven of the 10 participants were older than 35 years old. Eight of the participants completed a bachelor’s or higher degree. Six participants rated their health status as very good and the other four rated it as excellent.

Experiences in Information Technology Use

All participants indicated that they used a computer, the Internet, and e-mail either at home or at work or both. A majority of the participants used the computer daily (n=9), and one used it at least once a week. Six participants indicated that they used e-mail at least once a day and four of them used at least once a week. Internet usage varied among the participants from daily, weekly to monthly. All participants have Internet access at home; four participants did not have Internet access at work. Most of the participants (n=9) used some kind of search engine (e.g., Google, MSN, Yahoo) to look for information; only four participants used it to search for prenatal genetic-related information. None of the participants were involved in any Internet self-help or support group.

Reasons for Prenatal Genetic Counseling

All participants were referred to the clinic by their primary health care providers. Advanced maternal age was the main reason for prenatal genetic counseling for nine participants. The other participant’s clinic visit was due to her family history of a genetic disorder.

Information Needs

One of the questions in this study asked women how long they had been thinking about prenatal genetic counseling. The responses provided by the women were between 2 to 4 weeks prior to their clinic appointment. They were also asked about their information needs related to clinic visit. The answers provided by participants were predominantly concerned with the risk of having a baby with a genetic defect, whether or not their baby would be healthy, options related to and interpretation of genetic testing, needs in risk assessment. Examples of statements like:

• …probably just get more information about XXX Syndrome and to find out, you know, the um, you know the chances of, of my baby having it, of the, having the XXX Syndrome. The chances are…(Amy)

• I guess it’s to get, um, information at first, risks and, I mean I know the different birth defects and things that are out there, but as far as absolute risk and um, I don’t, I don’t know really. I’m not sure (Lisa).

Information Seeking Behaviors

Participants were also asked to indicate how they searched for information related to their prenatal genetic counseling needs. Eight participants indicated that they had started looking for related information themselves through different avenues.

• I usually go to WebMD.com (Amy).

• So most of my information I’ve gotten just from talking to the doctor’s nurse, or talking to my doctor (Lisa).

• I only read a book that I have, which was recommended by my physician (Marie).

Two participants did not look for any prenatal genetic-related information, and they said:

• I did not look for any information; I only want to have the ultrasound done, and nothing more (Rita).

• I haven't looked for any information, because I don't have time to do that (Heidi).

Participants’ responses were further categorized in terms of methods: electronic versus non-electronic and professional versus non-professional. The patterns of ISBs varied across participants. Some used a combination of the Internet and books or pamphlets and some only used books or pamphlets. Four participants used both electronic and non-electronic methods to the obtain information they need, three participants used non-electronic method (such as books or pamphlets), one used only electronic methods and two did not use any. None of the participants sought information from the library, friends or family. While all the participants needed information related to their individual situations, only four participants received information recommended by their health professionals.

Information Resources Used

An open-ended question was posed to ask participants about the information resources they used prior to their clinic visit. Responses included books, pamphlets and the Internet. Although three participants primarily used the Internet as their information source, one reported that she mainly used the WebMD site, one used MSN to browse Internet information and another one had signed up with an electronic newsletter sent to her weekly. One participant reported that she only used the information from a book and the last participant indicated using the information pamphlets that she received from her doctor’s office. In general, participants felt the information they found was very useful. Examples of the comments made were:

• WebMD is pretty useful, I do trust that WebMD and I plan to talk to my counselor about the information I found, such as the definition of the disease that I was looking for (Amy)

• I read the whole book, and I know what I want for the type of testing (Marie).

Emotional Responses

Participants’ information needs were highly related to uncertainty and the need for reassurance.

• He’s very healthy (Amy’s child), and there’s nothing that would tell me that this pregnancy isn’t going to be, but like I said the midwife with my, with my family history suggested that I see the genetic counselor…… I’d talk to my, to my family about it, like I’ve done in the past um, and yeah I would, I’ll probably research it a little bit more, but from what I do know I, I think it’s going to be a pretty small percentage that my, my baby’s going to have the syndrome (Amy).

• I don’t know whether there, whether they will go into details as far as what this particular test actually determines, like I sort of have a vague understanding of what it does, but I don’t really understand how it does it. So I don’t know if she can talk specifically about the test or she’s just going to talk about risks in general with advanced age and you know, what things you can be at risk for and what the percentages, you know, what my odds or my, you know, my risk is. I’m not really sure (Lisa).

To differing degrees, participants displayed feelings of uncertainty and needs for reassurance at different times during the interview sessions. Examples above illustrate their attitudes toward seeking information before to their scheduled clinic visit.

DISCUSSION

Four major themes were found via content analysis: initiation and uncertainty, information acquisition, timing and format of providing information, and health perception and social support. These findings have implications for IS design in content, format, and timing categories.

Initiation and Uncertainty

All the participants were referred to the prenatal genetic counseling clinic by their physicians or midwives. They all started thinking about looking for information that is relevant to their situation approximately between 2 to 4 weeks prior to their clinic appointments and the initiative for searching information was completely undertaken by the women themselves. The common theme was uncertainty about the probability of the child having the disorder and wanting reassurance about the child’s health status. Similar results were found in other studies: Pregnant women accept referrals to a genetic counselor when given by a health professional and receive genetic counseling to provide ongoing reassurance that their baby is healthy^16,17.

Information Acquisition

All participants in this study revealed that they used a computer, e-mail or the Internet at least monthly, often more frequently. Nonetheless, frequent information technology usage did not guarantee the way they acquired information. For example, one participant reported that she used a computer, e-mail, and the Internet daily both at home and at work; but surprisingly, she had not used the Internet to search for the information she wanted, nor did she plan to use it. This suggests that people who use the computer or Internet more often may not necessarily seek information using this tool. Although not every participant in the study had sought information electronically, some suggestions provided by the participants were positive in terms of their preferences in receiving information electronically in the future.

Surprisingly, even if participants had rated the information that they had received as useful, participants could not recall the detail of the content. When one participant was asked to describe what she had found on the Internet, she could only give the definition of the disease that she was looking for, and some symptoms from that particular disease. She was not sure about the content accuracy, nor did she remember every detail that she had found on the Internet. A similar response was given by the other participant that used the Internet to look up information on genetic disorders; she only gave a very general statement about issues related to advanced maternal age. Although the recall precision was not within this study’s scope, the findings have revealed that receiving relevant and useful information may not always indicate the knowledge acquisition; the information could simply give the women some reassurance.

Timing and Format of Providing Information

All study participants reported that they did not receive any information and would prefer to have reading material about the process of consultation and clinic information prior to their clinic visit. Similar findings were reported in another study¹⁸ that patients felt they were not adequately prepared in terms of not knowing what to expect. Therefore, in order to better prepare patients for the counseling visit, the clinic should send out information with respect to the counseling process and basic genetic and clinic information. The participants’ responses suggested that they would prefer receiving reading information, a leaflet or a relevant Web site, about 1 to 2 weeks prior to their clinic visit.

Health Perception and Social Support

Six participants had rated their health status as “very good” and the other four rated it as “excellent”. No participant belonged to any Internet self-help/social support group. All participants were undergoing prenatal genetic counseling due to the family history, advanced maternal age, or concern about future offspring’s health status. None of these reasons directly affected their own health, which might explain why they perceived their own health to be in a good status. In addition, when women perceived their health very good, they might think they do not need social support from peers during their pregnancy. Maybe because they were still at an early stage during their pregnancy, therefore, they have not thought about joining this type of group.

Information System Design Considerations

From this pilot study, three key points were found to be greatly valuable for the IS designer: content, format, and timing. These elements should be considered when building an IS at the clinic end in order to generate relevant and useful information for patients.

Content

To serve the intended purpose, the information should be complete and relevant. The ranges of patients’ concerns were varied across individuals. It depended on their reasons for seeking prenatal genetic counseling. Although all participants were referred by their primary health professionals, they did not feel adequately prepared to attend the counseling visit. Comments from the participants indicated that information is needed prior to the clinic visit. IS design for this particular population should first focus on what are the common reasons women who come for prenatal genetic counseling and then answer frequently asked questions for each reason.

Content, therefore, should structure into different categories based on the reason. For example, women who come for counseling because of advanced maternal age would likely want to know what the currently available tests are, what pros and cons for each test are, and whether or not the tests are invasive. The clinic’s IS should have a list of prior clinic visit assessment questions to address these concerns so that proper and relevant information could be provided in advance to meet individual’s information needs.

Format

Comments provided by the participants had indicated the wide variation in preferred information delivery method. These methods should be categorized into electronic vs. non-electronic format. Careful planning of information delivery to patients is required to enhance information use and to improve information transfer. With considerations of individual’s information delivery preference, clinic should offer a variety of media to allow patients to express their choice in receiving information. Therefore, the information could be delivered in a suitable way.

Timing

The lack of time to search was cited by all participants as the most often reason of desiring information to be sent to them. According to comments provided by participants, 1 to 2 weeks prior to the clinic counseling visit was the favorite time of receiving information. Participants had indicated that this window would allow them to have sufficient time to read and process the information they receive, therefore better prepare them for the clinic visit.

CONCLUSIONS

The pilot study used qualitative methods to elicit information on pregnant women’s information needs, ISBs and information resources used prior to their prenatal genetic counseling visit. Since data were collected from a small number of participants in one setting, results of present study may not reflect the spectrum of the broader population of pregnant women’s information needs and ISBs. However, this study demonstrates the feasibility of the method in detecting and characterizing information needs and patterns of ISBs that can be applied in a larger study as it may provide more generalizable data. Additionally, implications for the IS design and development were successfully derived from present study.