Internet Resources: Parent and Patient Perspective
Introduction
Philosophy/Rationale for Site Elements
What People are Looking For
Personal stories and photographs
Interactive Opportunities
Medical Information
Implications of online interaction and research
Leaders Among Us
Activism
Concerns
Evolution of local, regional, and national support groups
Get Involved
Conclusion
Introduction
I am the parent of a teen-ager with complex congenital heart disease. We
bought our first home computer after our son's third surgery in 1993 as a
"get well" present, to give him something constructive to do during his time
at home. Like most kids of that era, he took to the computer quite naturally,
and within a short period of time, was surfing the Internet and teaching himself
how to use programs and software. I had never used a computer before, I
couldn't even figure out how to turn the darn thing on! Seth taught me a lot,
and before long, I found myself totally fascinated by the Internet and by this
new technology.
What is important to know about me, back in 1993, is that I was one very
concerned parent.
I was upset with a system that treated my child as just another chest and
nothing more, and failed to consider the needs of our family. Even more
importantly, I was angry at myself, because I just didn't know enough.
I didn't know enough about my child's defects to ask
the right questions, I didn't get enough opinions or talk to the right people,
I certainly didn't carefully check into how things were done at this particular
facility, and I blamed myself for the unnecessary emotional difficulties my son
encountered as a result of poor care.
Considering my state of mind at that time, I began to
search the Internet for information, and for other parents with whom I could
communicate. I started to find bulletin boards where parents posted about issues
related to raising a child with chd, and websites that, at the time, were
primarily aimed at health professionals. I taught myself how to access Medline,
and began to read anything I could find that was relevant to my son's
condition.
Over time, I developed a concept for a website that could
provide accurate and reliable information for families and individuals affected
by CHD, and wanted to try to maximize the interactive potential of this new
technology to bring people together. In 1996, I formed a non-profit corporation
specifically for the purpose of publishing The Congenital Heart Disease
Information and Resources website. I found a design firm that was willing to
donate their time and talents to this effort, and who could provide the art and
html services that would make it all possible.
When we went online in 1996, I never could have imagined
that our resource could help so many people. I never knew that there were so
many of us out there, and I continue to be amazed at our ability to reach
thousands of people throughout the world.
Philosophy/rationale for site elements
At the outset, it was my
goal to create an environment in which family members, adult patients, and
health professionals could work together and communicate with one another. It
was my expectation that enhanced communication would enable us to produce
accurate, unbiased, and effective educational materials that would help meet the
informational needs of real people, and provide a forum through which we all
could learn from one another.
I was committed to doing everything possible to ensure the
reliability of sources that we link to, and to establish a process of peer
review for new informational materials that we might be able to create. I was
also well aware that ethical issues would arise, and administrative advice would
be needed as our online support groups grew. One of the first things I did was
to put up a plea for help to the medical community.
Volunteers are needed to assist with the development of new
features for this site. The only requirements are a willingness to
communicate primarily by E-mail, and a desire to share your time
and expertise!
Please contact me if you would like to help.
Child Life Therapists
Lactation Coordinators/Nursing Mother Counselors
Nutritionists
Medical Illustrators
Pediatric C-T Surgeons
Pediatric Cardiologists
Pediatric Nurses
Social Service Providers
Transplant Coordinators
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Over the past three years,
we have indeed been fortunate in that so many talented and dedicated health
professionals have offered their time and expertise to serve on our Advisory
Panel. Although I nudge them to death...some more than others, their ongoing guidance
and support have been invaluable to the success of the site.
We receive, on average, 50,000 visitors to the site each
month from more than 50 countries.
Our online support groups for patients and families, and forums for professional
communications currently serve well over 2,000 people throughout the world, and
our site has become one of the most highly respected medical information and
support resources on the pediatric Internet today.
In 1998, approximately 22.3 million adults -- 36 percent of
all American Internet users -- searched for online health or medical
information. That number was expected to reach at least 30 million by the end of
1999. In general, use of the Internet has grown exponentially, and continues to
grow as technologies and computers become less expensive and more accessible to
the average consumer.
The congenital heart community has also grown since I first
went online, and continues to grow as more and more people have access to the
Internet in their homes.
So, what is it exactly that people are looking for, and,
more importantly, what are they finding?
First, and foremost, people are looking for each other.
They want to see photographs of babies, children and adults, and read the
personal stories.
The diagnosis of a
congenital heart defect in a young child can have a devastating effect on
families. Because CHD receives almost
no media attention and because it is something that is not openly spoken about,
the diagnosis of a potentially life-threatening illness in utero or infancy
comes as a real shocker to people. Who ever heard of a newborn needing heart
surgery?
The initial shock turns
into "information overload", as parents are faced with learning new
vocabulary and difficult to understand medical information. Many people wonder
if there are others out there who have experienced the same things. People log onto the
Internet, perhaps go to a search engine, and look for information, and each
other. Seeing the faces and knowing that there are so many others out there like
their own child or themselves is very comforting and reassuring to parents and
adults with CHD. An identification with
others helps to alleviate that awful feeling of isolation that so many people
struggle with.
For new parents or those expecting a baby with CHD, simply
looking at a photograph of a school aged child or a teen-ager does wonders for
the psyche! I cannot even begin to count how many letters I have received over
the years from new parents, who look at my son's picture, and write to tell me
that seeing this healthy-looking young man gives them hope that their child may
live a normal life.
HTML programming skills are no longer necessary for basic
website publishing, and the accessibility to free web hosting for personal sites
makes creating a home page a simple and fun family project. Personal web pages
abound, and people are looking at them in large numbers. We do not
currently provide external links to these sites, as they may contain inaccurate
medical information and/or links to sites that do not fit our inclusion
criteria.
Our decision to include
member stories on our site has given us the opportunity to screen entries, to a
degree, and to provide some caution to our readers with regard to the medical
information they may contain.
| Disclaimer: Our Members' stories represent their own
perception of their experiences, and the medical information contained within
has not been reviewed for accuracy prior to publication. Your best source for
medical information will always be a qualified health professional with
experience in your (child's) specific problems. |
Interactive opportunities
For many, the opportunity to interact with other families
or achd'ers is both enjoyable and educational.
Bulletin Boards are a "newbie" paradise, where
people post a public note in an effort to elicit a private response or
information about relevant websites. Not without some risks in terms of
publishing your email address and personal info on the web for all to see,
bulletin boards remain a time-honored staple for webmasters who wish to develop
an online community.
Chat Rooms make instant communication among a group of
online friends and colleagues possible, and are much enjoyed by all who
participate. It is truly amazing to have a group of people from all across the
United States, from Canada and Europe, actually "talking" to one another, in
real time.
Maximizing the interactive potential of this medium for
education, we have conducted several Question and Answer Sessions in our Chat
room over the past couple of years. The sessions give people an opportunity to
ask in-depth questions about defects, treatments and procedures, and to discuss
issues of importance with qualified and experienced doctors and nurses. Transcripts from these
special sessions are edited and reviewed, and upon publication on the site,
provide a wealth of accurate and relevant information to our readers, based upon
the informational needs of real people. We have also "turned the tables" a couple of times, and
hosted CHAT sessions during which doctors and nurses asked us the questions.
Online support groups via email enable people to
communicate with one another, and for many, represents the first opportunity
they have ever had to interact with others so much like themselves. Special
interest groups have evolved over the years, and we currently provide 7 lists.
As our online support groups have grown, close personal
relationships have developed, and online friends are meeting one another in
person at regional gatherings and private get-togethers throughout the world.
So, what are people talking about? All kinds of things
ranging from asking for and giving emotional support and encouragement, sharing
information about hospitals, doctors and the quality of care that they receive
(yes...they are talking about you!), parenting and developmental/educational
issues, the impact of CHD on family life, insurance problems and solutions, etc.
These informal communication systems have been a lifeline to some during times
of great stress, and a rich source of friendship and camaraderie. The prayers,
support, and love that our members give and receive have become very important
to so many. The collective wisdom of our community is shared, and many people
report feeling empowered by the knowledge and practical advice that only other
parents/achd'ers can provide.
But all is not perfect in
cyberspace, and the Internet, by virtue of its anonymity, can be a dangerous
place. Care must be taken to provide some assurances that our members are not
exposed to scams and commercial announcements. Copyright laws and liability
issues can be a serious matter for list owners, and in view of the inherent
dangers and desire to protect the privacy of our members, "rules of the
road" have been developed and implemented. Filters are in place to
prevent spams, and our member list is kept strictly confidential. Some of our
restrictions have come under fire from time to time, but in my opinion, are
absolutely necessary in order to protect the vulnerability and privacy of our
members.
As our lists have grown, so have our concerns with regard
to misinformation. Typically, a parent or achd'er writes a note to the list,
and people respond either publicly, or privately to the originator of the
question. While there is absolutely nothing that can be done to prevent
"misinformation" from being exchanged within private communications, we can,
and do intervene on occasion when a blatantly incorrect statement is made
publicly to the lists. Typically, I will forward an email in question to one or
two of our Advisory Panel members, and ask them to "clarify" the statement
or provide additional information. Fortunately, we have been able to dispel many
misconceptions very quickly, and have made a conscious effort to extend our
educational capabilities to members of our online support groups.
There are several other
email lists available now to people, and for the most part, they are set up by a
parent and maintained through free commercial services. These commercial email
lists offer little protection for list members in terms of the privacy of their
identities and of their communication, and their vulnerability to scams and
spams. In addition, list owners who maintain these forums independent of a
non-profit organization or corporation have absolutely no protection against
liability.
Medical Information
Aside from the aforementioned things, people are looking
for detailed medical information about their or their child's specific
defects. People look for easy to
understand explanations and diagrams. At home, parents and patients can take
their time to research and read, and use the information they find to help them
ask better questions of their or their child's doctors. This information helps
people to make more informed decisions regarding their own or their child's
care, and empowers people with the knowledge they need to better understand the
complexities of their conditions.
In addition to diagrams and
explanations, people are looking for statistical information, although that has
been hard to find. How many people with the same defects as my child or myself
are there? How many of these individuals survive into adulthood?
People want detailed
explanations of surgeries and interventional procedures including options and
risks. Parents, in particular, are interested in knowing what the
natural history of their child's disease will be. What will the quality of
their child's life be? Will he be able to participate in school, be able to go
to college and have a career? What is likely to happen in the future? Will their
child need additional surgeries or procedures as they age into adolescence and
adulthood?
One of the things that
surprised me throughout our 3 years online, has been the number of people who
search the medical literature, and who take the time to weed through the
technical information and attempt to make sense of it. Over the years I have
spent a great deal of time teaching people how to access this resource. Recent
enhancements to MedLine have enabled people to find relevant research, and they
are looking at this information in large numbers.
I don't think that any of
us who have played a role in the development of our site and our online
communities had any idea that our resources would have had such a tremendous
impact on the community at large. As we have grown and
evolved based on the needs as expressed by our site visitors and participants in
online support groups, our presence has led to the development of new national
organizations and offline support groups in communities throughout the world. Leaders have emerged among
us, and projects and organizations have been created as a result of people's
online interaction.
Adult
Congenital
Heart Association
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Although many of these developments have had a very
positive effect, there have been a handful of "self-proclaimed experts" who
have created their own informational sites without the benefit of peer review or
the guidance and assistance of qualified and experienced health professionals.
Activism
As our membership has increased and leaders have
emerged, people are now getting involved in activities to promote awareness of
Congenital Heart Defects, and to create foundations that fund research.
 |
In late November, 1999,
Jeanne Imperati, a member of several of our online support groups proposed an
idea to promote awareness of Congenital Heart Disease. She asked members to
write to their governors, requesting that February 14, 2000 be proclaimed A Day
for Hearts: CHD Awareness Day.
Within several weeks,
proclamations were obtained from 42 states. With the assistance of Children's
Heart Society in Canada, other countries have come on board as well, with events
and media coverage throughout the world.
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Families and individuals
affected by CHD and the health professionals who work with them gathered at
parties and proclamation signings, handed out informational booklets at
shopping malls and supermarkets, conducted interviews with local press and TV
stations - with all of these efforts helping to raise awareness about our
numbers, and our needs.
Our online community has
become a force to be reckoned with, and with your help and cooperation, we can,
and will affect much needed change.
Concerns
The concern about Internet Resources that I hear the most
about from health professionals, has been the misinformation that some of their
patients have received.
It is clear to me that all
of us - webmasters, doctors and nurses- need to do a better job of educating
people about how to use the Internet safely, and to be better able to recognize
an informational source that may contain inaccurate or inappropriate
information. By providing links to articles that explain the Medical Internet
and propose criteria for evaluating health information online, we can help to
educate the public about these important issues.
You can also help by providing your patients with a handout
that includes websites that you are comfortable with, that can lead people to
information that you feel is accurate and reliable and may be helpful for them.
Evolution of local, regional, and national support groups
Over the past few years,
many new support groups have been created, some by members of our online
community. Inspired by the encouragement and support they have received from
others, people seek to create support systems that can help families and
individuals in their neighborhoods to meet and interact with others.
Although there are a few that are sponsored by hospitals
and practices, many support group leaders struggle with common problems. Funding
is scarce, and some support group leaders are unable to print newsletters or
hold events and informational sessions for their members because of their
inability to pay for printing and postage. Due to a lack of support from the
professional community, many support group leaders function without any
background or training in ethical and medical issues, and this factor can, and
sometimes does have a
potentially dangerous impact on the families and individuals that they serve.
That having been said, those who serve in a
leadership role are well meaning, dedicated, energetic and talented individuals.
However, lacking the background or experience in counseling and education, there
are some who play a supportive role to families and individuals that truly need your
input and participation.
Get Involved
On the Internet, and in communities throughout America,
your participation and involvement in these activities are essential, and
crucial to the welfare of your patients.
Get involved!
You can choose to ignore these issues and let volunteers,
like myself, fend for ourselves. Or you can make a conscious decision to support
efforts to provide information and support to families and individuals who
desperately seek these kinds of services.
Support group leaders throughout America need you to get
involved. They need you to help develop guidelines for interaction, policies
that protect people's confidentiality, to offer ongoing assistance and
support, and to help secure the funds required by support group leaders to
provide services to their members.
C.H.I.N. also needs you to help us develop new
informational materials for families and adults with CHD.
If I could get more of you to volunteer to write new
educational articles based on the needs as expressed by our community, we could
dramatically expand our resources and be able to provide people with the
information they need to make more informed decisions.
If I could convince a
small percentage of those who publish research to take your articles and put
them into plain language so folks like me could understand them, we would be
able to put this information into the hands of those who are ultimately
responsible for making important decisions about the care of their loved ones,
and of themselves.
Conclusion
The success of our website has proven that parents, adult
patients, and health professionals can indeed work together effectively. Doctors
and nurses who have worked with us tell me that their participation in online
support groups, CHAT sessions, and the writing of new materials for publication
on the site have helped them to be better at their craft, as their understanding
of our needs and their interaction with us has taught them so much.
By providing much needed information and opportunities for
interaction, we bring you patients and families who are better informed, who
feel that they are not alone in their struggles, who are better able to cope
with surgeries and procedures because they know that they or their loved one is
being prayed for. They are better able to cope with the myriad of issues that
arise when raising a child with special health care needs, and our ACHD'ers
receive practical and useful information to help them cope with inaccessibility
to appropriate medical care, insurance problems, and job issues. Their
increased confidence and improved state of mind has had a very positive impact
on their ability to cope with the psychological and emotional consequences of
everyday life, and for parents, has enabled them to help their children get
through difficult and painful procedures.
It is clear that enhanced
communication among us benefits everyone. And so it is that I leave you with an
urgent plea to make a choice, and get involved. There is much we can learn from
each other, and by working with us, we can have an important impact on the lives
of the patients and families that you care for.
For additional information, please see:
Parents and ACHD'ers Speak Out: Using the Internet for Health Information and Support
Jadad AR Promoting
partnerships: challenges for the internet age. BMJ 1999; 319:761-764 (18
September)
Wyatt JC Commentary: measuring quality and impact of the World Wide
Web. BMJ
1997 Jun 28;314(7098):1879-81
Tips For Health Consumers:
Finding Quality Health Information on the Internet
Izenberg N, Lieberman DA The Web, Communication Trends, and Children's
Health. Part 5: Encouraging positive and safe Internet use. Clin Pediatr (Phila)
1998 Jul;37(7):397-403
Adult Congenital Heart Association
Gloria's Place of Hope
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