Abstract

Loss is a common experience that can be encountered many times during a lifetime; it does not discriminate for age, race, sex, education, economic status, or nationality. Unrecognized, unprocessed, and untreated acute depression or the grief response following a significant loss can result in personal anguish, multiple somatic complaints, functional impairment, strained relationships, clinical depression, and a risk of suicide. Grief impacts friends, family, co-workers, employers and the community of those affected by the loss. Thus the number of people impacted by loss, grief and depression is significant.

Journey of Hearts (http://www.journeyofhearts.org) started as an idea--a website to provide resources, both medical and non-medical, to serve as an adjunctive Internet web-resource, supplementing the ever-shortening primary care visit. Now on-line for nearly three years, this integrative, multi-award winning medical website (including an AMA-YPS Community Service Award) has reached over 140,000 people world wide, providing grief aid to the Internet communities. The site utilizes Internet technology to provided web-education in these overlooked areas of grief and loss.

The website was created with the hope of removing some of the social stigmas associated with those who are grieving and provide a safe place for people to visit in the middle of the night, when friends and family are not available. Through the use of the Internet, visitors to the site are empowered with knowledge to understand the grieving process and thereby help themselves, friends and/or family through the often devastating experience of loss, ultimately improving the quality of their health.

1.0 Idea

1.1 The Impact of Depression, Grief and Loss

The World Health Organization projects that depression will likely be the second leading cause of mortality and disability by the year 2020, [1] and the leading cause for women and developing countries. [2] Depression is estimated to afflict 19 million people in the United States alone with economic losses conservatively projected at between $30-44 billion a year. [3] Simultaneously, the numbers of people accessing the Internet are increasing daily with projections of 450 million world-wide 'on-line' by the end of 2000, and 1 billion by 2005. [4] For many U.S. users the Internet is an essential part of their daily lives. [5] With more than 15,000 websites currently devoted to health care [6], the Internet is a reality of daily medicine. Nearly 40% of all Internet users in the United States search for medical information. [7] The growing use of this new technology presents a unique opportunity for the medical community to address the WHO's troubling predictions, by using the Internet as a supplement for patient screening, education, and treatment of depression.

In the United States, the screening and management of depression is frequently the responsibility of primary care providers: family practitioners, nurse practitioners, physician's assistants and internists.[8] Up to 70% of patients with depression present with symptom to their primary care providers. [9] However, time and economic constraints limit the current primary care office visit to 15 minutes or less. Even though depression or grief reaction may be the real reason a patient seeks medical treatment, it is often not the "stated" one and must be coaxed out of them--difficult to do with limited time. Therefore, it is not surprising that depression goes undiagnosed, [10] with nearly 50% of physicians missing depression in their patients. [9]

Depressed or grieving patients may present with somatic complaints: fatigue, insomnia, palpitations, chest pain, gastrointestinal symptoms, panic attacks, or anxiety. These potentially serious complaints require a thorough evaluation to exclude bona fide medical disorders before depression can be diagnosed. Additionally grief can lead to functional impairment, decreased productivity, strained relationships, clinical depression, an increased risk of suicide,[11] and increased morbidity and mortality from other medical disorders.[12,13] Grief also impacts friends, family, co-workers, and the community of those affected. Thus one person's grief ultimately affects many others.

1.2 A Website for Grief, Loss and Depression

The idea to create a website emerged after informal discussions with other physicians. Collectively, we were seeing more people with anxiety, grief or depression. Once the major medical problems were ruled out and the depression diagnosis made, these patients often were unable or unwilling to seek counseling due to time constraints, limitation of mental health resources in rural areas, the costs of counseling and not insignificantly, the social stigma of being diagnosed with depression, grief, or anxiety.

In 1997 a search of the Internet for websites related to grief, loss, and bereavement, revealed the existing grief sites were created by social workers, psychologists and ordinary people who had experienced a loss. The only physician-sponsored websites were for mental illness involving psychiatrists. With the trend towards primary care physicians managing more major depression, it seemed logical for a primary care physician to create a website devoted to the topics of grief, loss and depression.

The Journey of Hearts website was launched in October 1997 to serve as an Internet resource for those with depression or grief. The site was created to educate visitors and heighten public awareness of grief and loss, and to de-stigmatize societal views on depression. Through education we believe the site empowers people to understand grief, and if needed seek care.

1.3 Utilizing Web-education for Patients

A website is an obvious adjunctive resource to supplement patient education already started by their physician or to reach those who may be home-bound for a variety of reasons: physical, situational, psychiatric, emotional or financial. [14] Web-education is the process of educating people using information and resources from the Internet. Medical web-education consists of three inter-connected components: patients, physicians and reliable medical information from the Internet. [15]

With the growing trend towards seeing more patients in less time, having a website available for patients to access at any time for information and support is an excellent way of providing adjunctive care. Since grief is a private emotion, one often repressed, an advantage with web-education on grief and loss is that a grieving person can utilize the resources when they need to in the privacy of their own home. Also, a website can be used by those in rural areas, where other resources may not be available. [14]

2.0 Methods

2.1 Creating a Website on a Limited Budget

The unavoidable costs in starting a website include registering and activating the URL with a service provider and the licensing fees with InterNIC. We purchased Corel PHOTO-PAINT 8 for photographs and graphics. (The GIMP, a freely distributed software, is a free way to create graphics.) To learn HTML we purchased several books, but there are numerous on-line HTML references [16], making buying a book optional. The authoring tool used is Netscape Composer, part of the Netscape Navigator also available for free. Our total start-up costs were around $400.00, but using the GIMP free software and on-line HTML instruction, this cost would have been around $200.00, for registration and licensing fees. Maintaining the URL runs $30.00/month.

The HTML code for a webpage is created visually in Netscape Composer and then fine-tuned in Notepad or Write programs. The majority of images from the site are created in Corel PHOTO-PAINT 8, from non-copyrighted stock photographs, images or personal photographs. Additional images from other sources are credited to the appropriate artist.

In our three years of experience with web design, we determined that expensive web authoring software packages were disappointing. Ultimately the free or low-cost software or programs served us the best. The major component to create the site has been a large amount of free time.

2.2 Design Concept

The concept behind the Journey of Hearts website is unique for a medical website--integrate medicine, colors, poetry, and images, to be informative, interesting and visually appealing, and provide reliable medical information. In creating the design, the needs of those in the acute, numbing or severe, reactive stages of grief were considered. Soothing images and colors were selected so those intensely grieving could find therapeutic benefit from experiencing the site without reading the words. We observed the grieving have little patience for flashy or moving images. Therefore, the pages were created to quickly display text, background colors, and images, but de-emphasized using slower Java applets and plug-ins.

Incorporated into the materials on the site are underlying concepts of self-help groups, to provide useful information, sympathy, and validation to visitors. We elected to not host an on-line chatroom or discussion groups to minimize potential damage that might result from users arguing over "whose loss is worst" or encountering those with "virtual factitious disorders." [17] We were also concerned that hosting a chatroom or message board could be perceived as practicing "cybermedicine" exposing Dr. Dyer to potential "cyberliability."

In constructing the Journey of Hearts site, particularly the medical resource section, we wanted to provide reliable, credible information. We established our own internal guidelines from the main sources existing at the time: JAMA [18] and the Health on the Net Foundation. [19] We include the authorship, attribution and copyrights for the information used on the site. Additionally, the site contains two disclaimers. The first indicates that "These sites are not meant to serve as substitutes for medical information received from your physician." The second makes it clear we are not practicing medicine over the Internet, and explains why e-mail, which might be considered a medical consultation, will not be answered. [20]

The extensive Medical and Resource List is compiled of over 90 sections from "Aging" to "Wound Care" with nearly 300 resources relating to loss. The resources chosen are from university, non-profit organizations and selected personal sites. Some resources were suggested by colleagues, others were found in different medical sources. Although we are frequently solicited, links are not made to resources that exist primarily to promote grieving merchandise, or to exploit the grieving population.

What has emerged is a unique style of medical website: part medical, part psychiatric, part art, part literary, and part self-help. It is a medical website that educates while also being visually therapeutic.

3. Reality - Research on the Internet

3.1 Changing the Research Paradigms

Researchers interested in conducting research via websites must look for ways of taking the old, established techniques--randomized, controlled studies---and modifying and applying them to use within this new technology. Most of the research findings that we could obtain from our website constitute non-randomized data and unsolicited 'case reports' (site comments), traditionally considered to be "softer" data. Recently, researchers have started to question the overall usefulness of randomized controlled trials and are encouraging the inclusion of non-randomized and case studies in clinical trials. [21] The non-randomized and anecdotal case studies are the types of findings that are more useful to practicing physicians and the type most readily obtained from Internet site studies.

Conducting research on a website is difficult, for the very reason that makes the Internet so appealing--the anonymity. We have concluded in the nearly three years of following numbers and statistics on the Journey of Hearts website that it is difficult to devise a randomized, controlled study for the Internet, but even more so, a fair and ethical one.

With this new medium, new methods of conducting research need to be established. The capabilities exist to incorporate highly sophisticated tracking methods for following visitors on the Internet and their movements within a website. Incorporating "cookies" to track visitors needs to be considered with caution; earlier this year, the use of "cookies" to track visitors came under heated debate and scrutiny. [22] We have only one page on the site that tracks statistics on visitors. These statistics confirmed the evening, round-the-clock and global use of the site.

When we designed the website, we carefully balanced our own curiosity about the visitors' use of the site against the need to respect their privacy. We did not want to do anything that might take advantage of this vulnerable, grieving population. Without the use of webpage tracking methods, we are unable to assess which sections are being most utilized, which would help in renovations. We believe the trade-off of allowing grieving visitors to surf anonymously, in peace, to trust they can get the information they need and not have their movements monitored, is an important part of the healing process.

3.2 Conducting Surveys on a Website - Some Inherent Problems

Conducting a voluntary quiz on the site, we were able to determine the reasons people visited. For 60 % of respondents the reason was "death," for 18 % "relationship," for 8 % "disease or disability," for 7 % "significant life change," and 5 % for "mental health." [23] The problem with the survey was the poor response rate, only 16 %. However this represented over 7,000 voters out of a potential of 38,000. It is impossible to know exactly why visitors did not answer the survey, and without more complete data, the reasons can only be speculative. When one adds to these problems the private nature of grief, conducting a truly randomized, representative survey of users to a site becomes nearly impossible for several reasons.

First - There is nothing to keep a Internet "surfer" at a site. The only statistics available on these fleeting callers would be in the total number of visitors to a page, not providing any insights why someone decided to leave.

Second - A person in the early stages of grief may be only able to "surf" around the site and absorb some of the images and colors, or be angered at the thought of filling out a form. Asking someone to complete an on-line mandatory survey to gain access to a site during the early stages of grief seems unethical and inhumane.

Third - Those who are non-native English speakers or who are "lurkers" to a website are also not inclined to respond. ("Lurking" describes those who hide in the background on-line, reading, but not participating or commenting.)

3.3 Alternative Methods for Judging the Impact of a Website

Due to the difficulty of utilizing traditional research methods on the Internet, we utilized other methods to judge the impact of the site. Based on the consistent daily traffic and a significant number of return visitors, we determined the site was highly successful in meeting our initial goal of helping a few people deal with their grief issues. The impact of the website can be gauged from the visitors' words. (Comments, [24] Guestbook [25]) The heartfelt thanks expressed in these numerous comments indicate that the Journey of Hearts site fills a much needed niche on the Internet. However, it is impossible to assess the full impact that Journey of Hearts may have because of the ripple effect on others--by helping one person, you ultimately help many.

4. Conclusion

One of the challenges in this new millennium will be to find ways of accessing Internet technology to help in diagnosing, treating, and managing the increasing number of people with depression and grief. In the United States websites have been used as part of the 1999 October National Depression Screening Day and The National Mental Illness Screening Project. Many sites already include on-line depression assessments. The Journey of Hearts website has been addressing grief, loss and depression since 1997, and has gone one step further, by providing not only web-based assessment, but web-based education, inspiration and encouragement.

Our experience shows that a physician-created website can educate patients, reach those who might not have access to counseling, and provide some therapeutic benefits via the Internet. Furthermore, this website demonstrates how to utilize Internet technology on a limited budget. With over 140,000 visitors to the site since April 1998, the site has enabled one physician to reach, teach, help and ultimately impact more people than she could do with a traditional medical practice. The website was created with the hope of removing some of the social stigmas associated with those who are depressed or grieving and provide a safe place for people to visit at any hour. Visitors to the site are empowered with knowledge to understand the grieving process and subsequently help themselves, friends and/or family through the often devastating experience of loss, ultimately improving the quality of their physical and mental health.

5. References

1. Brundtland GH. Health for the 21^st Century. Speech delivered for the World Economic Forum January 30, 1999. http://www.who.int/director-general/speeches/english/19990130_davos.html.

2. Murray CJL, Lopez AD. The Global Burden of Disease. Cambridge, MA: Harvard University Press, 1997. http://www.who.int/msa/mnh/ems/dalys/intro.htm

 3. The Effects of Depression in the Workplace. NIHM Brochure. Bethesda, MD: The National Institute of Mental Health. http://www.nimh.nih.gov/depression/employee/workplace.htm.

4. CyberAtlas The Web Marketer's Guide to Online Facts. March 23, 2000 CyberAtlas: Internet Statistics and Market Research for Web Marketers. http://cyberatlas.internet.com/big_picture/geographics/print/0,1323,5911_326181,00.html

5. More than Half of all U.S. Adults now Online. The Strategis Group. http://www.strategisgroup.com/press/pubs/IUTFinal.htm

6. Internet Train is rolling: But no one knows where it's going. American Medical News. October 4, 1999:42: 23-24.

7. Ward B. "Internet-Positive Patients" Driving You Crazy? Find out How to Get Online and Cope. Internet Medicine. Vol. 4 (7), pp.1,6, 1999.

8. Schulberg HC, Katon W, Simon GE, Rush AJ. Treating Major Depression in Primary Care Practice: An Update of the Agency for Health Care Policy and Research Practice Guidelines. Arch Gen Psychiatry. Vol. 55, pp. 1151-1127, 1998.

9. Perez-Stable EJ, Miranda J, Munoz RF, Ying YW. Depression in medical outpatients. Under recognition and
misdiagnosis. Arch Intern Med. Vol. 150 pp.1083-1088, 1990.

10. Kroenke K. Discovering Depression in Medical Patients: Reasonable Expectations. Ann Intern Med. Vol. 126, Pp. 463-465, 1997.

11. Callahan CM, Kesterson JG, Tierney WM. Association of symptoms of depression with diagnostic test charges among older adults. Ann Intern Med. Vol. 126, pp. 426-32, 1997.

12. Musselmann DL, Evans DL, Nemeroff CB. The relationship of depression to cardiovascular disease. Arch Gen Psychiatry. Vol. 55, pp. 580-592, 1998.

13. Pennix BWJH, Gurlnik JM, Ferrucci L, et al. Depressive symptoms and physical decline in community-dwelling older persons. JAMA Vol. 276, pp. 293-299, 1996.

14. Dyer, KA, Thompson CD et al. Using the Internet for Patient & Physician Web-education & Health Promotion. Presented at MEDNET 98 http://www.journeyofhearts.org/mednet98.

15. Dyer, KA, Thompson CD. Triad of Medical Web-Education Advantages of Using a Website for Patient Web-Education. JAMIP. November 1, 2000. http://www.amip.org/catalyst/cc_educate.htm.

16. Dyer, KA, Thompson CD. Learn HTML in Heidelberg: Effective Web Page Design Techniques for Health Care Professionals. Workshop for MEDNET 99. http://www.journeyofhearts.org/workshop/reference.htm

17. Stephenson J. Patient Pretenders Weave Tangled "Web" of Deceit. JAMA.. Vol. 280, p. 1297, 1997.

18. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling, and assuring the quality of medical information on the Internet. JAMA. Vol. 277, pp. 1244-1245, 1997.

19. HON Principles. Health On the Net Foundation Code of Conduct for medical and health web sites. http://www.hon.ch/HONcode/Conduct.html

20. Dyer, K. About this Website: Important Legalese. http://www.kirstimd.com/disclaim.htm

21. Parker SG. Randomized Trials Seldom Much Help. Internal Medicine News. Vol. 31, p. 46, November 1, 1998.

22. Dyer, KA, Thompson CD. Cookies, The Lurking Files Affecting Medical Internet Privacy: How to Find and Disable Them. JAMIP March/April, 2000 http://www.amip.org/catalyst/cookies_html

23. Dyer KA, Thompson CD. Internet Use for Web-Education on the Overlooked Areas of Grief and Loss. CyberPsychology and Behavior. Vol. 3(2), pp. 255-270, 2000.

24. Dyer KA. Comments About Journey of Hearts. http://www.kirstimd.com/comment.htm More Comments. http://www.kirstimd.com/comment2.htm

25. Transformations on the Journey Guestbook. http://www2.bravenet.com/guestbook/show.asp?userid=oc292545