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Q: How adult children use online family networks to care for aging parents. ( Answered 5 out of 5 stars,   2 Comments )
Question  
Subject: How adult children use online family networks to care for aging parents.
Category: Health > Seniors
Asked by: tomferguson-ga
List Price: $50.00
Posted: 13 Feb 2005 16:17 PST
Expires: 15 Mar 2005 16:17 PST
Question ID: 474017
I am looking for stories or studies of how online family networks have
been (or can be) used in the care of aging parents--e.g., how adult
children can use e-mail to coordinate an aging parent's care when many
or all of the adult children live far away. I would like case studies
of how such networks operate, personal stories by those involved in
about such networks, or studies that look at such networks. I'd also
like to know to what extent such networks may operate via any of the
following media: email, web
sites, blogs, mailing lists, etc. And what (if any) online
infrastucture exists to help families set up such networks.
Answer  
Subject: Re: How adult children use online family networks to care for aging parents.
Answered By: czh-ga on 14 Feb 2005 20:26 PST
Rated:5 out of 5 stars
 
Hello tomferguson-ga,

I was intrigued by your question because I have personal experience in
using online resources when my siblings and I were challenged last
year with taking care of my parents. We have a large extended family
and one of the grandchildren set up a Yahoo! Group several years ago
for us to share news, photos, calendars and to make it easier to
coordinate the many family events.

Last year I set up a Yahoo! Group for my four siblings and me when it
became clear that my parents needed a great deal of help with some
health problems. The five of us siblings live within a two hour
distance from my parents? home. All five of us were determined to
pitch in with getting through the crisis but we all had many other
obligations. I set up the Yahoo! Group for the five of us so that we
could pool all the information that we were gathering and to make it
all available to all of us so we wouldn?t have to keep repeating the
same information, have to play telephone tag, or have to keep track of
the huge volume of e-mail we were generating.

All of the correspondence was in one place and we could easily monitor
who was doing what. We had a calendar showing all the medical
appointments and who was where when. We posted complete lists of my
parents? doctors and medications which were invaluable in coordinating
all the appointments and dealing with the various medical providers.
When anyone researched a topic, they posted the results and the
appropriate links so everyone could review it and have all the
necessary information. Whoever had new information of any kind would
post an update to the group. I don?t know how we would have gotten
through this crisis if we had to handle all the coordination by phone.
The most important element in setting up our care group was that we
were all in agreement about what role each of us was willing and/or
able to perform.

Researching your question I expected to find other examples of similar
use of online resources but I came up empty. This doesn?t mean that
other families aren?t doing the same thing. It?s just not documented.
There are 5000+ Individual Family Groups on Yahoo! and there are other
places where similar groups can be set up.

I was able to find some research on family caregiving. These reports
describe who in the family fills what roles and it seems that most of
the time one person (frequently the oldest daughter) ends up taking
the lead in providing care. There is very little in these research
reports about how information is shared among caregivers and whether
online family networks are set up and used. There is more information
that discusses how caregivers use online resources for conducting
research or finding support groups. I also found that there is lots of
information to help you find geriatric care managers or case/care
managers if you can?t handle providing care yourself.

Looking for resources on technologies in caregiving I came across some
interesting projects and products to help the elderly stay in their
own homes and to assist their loved ones and/or caregivers monitor
their status on an ongoing basis. These technologies for smart homes
might become important in the future if these products achieve wide
adoption. They could have a huge impact on assisting remote
caregivers.

It seems that there is a dearth of specific information about the use
of online family networks in caring for elderly parents. I hope that
the information I?ve collected will give you a good overview of the
current issues in family eldercare. Please don?t hesitate to ask for
clarification if any of this is confusing.

All the best.

~ czh ~


===========================
TRENDS IN FAMILY CAREGIVING
===========================

http://www.healthatoz.com/healthatoz/Atoz/dc/caz/eolf/dead/pccare.jsp
Caring for the Caregiver

Among the study's findings:
Wives, daughters and sisters are the primary caregivers for millions
of terminally ill patients in this country. They often serve as the
sole providers of an array of homemaking, transportation, nursing and
personal care needs.

Less than 20 percent of patients received paid caregiving services in
addition to family assistance, and the proportion of assistance
provided by non-family volunteers was negligible.

The following are some tips to help primary caregivers cope:
Communicate with other caregivers. There are hundreds of caregiver
support groups throughout the country. Some are sponsored by hospitals
and community centers. The Internet has chat rooms, discussion groups
and Web sites devoted solely to supporting caregivers.

-------------------------------------------------


http://eesc.orst.edu/agcomwebfile/edmat/html/EC/EC1458/EC1458.html
Sharing the Responsibilities of Parent Care: Sibling Relationships in Later Life
Caregiving for Parents

-------------------------------------------------


http://www.people.virginia.edu/~sns5r/resint/ltcstf/tennille2.pdf
Shared Caregiving Responsibilities of Adult Siblings with Elderly Parents

-------------------------------------------------


http://www.virginia.edu/insideuva/2002/25/elderly_parents.html
http://www.whptv.com/guides/parenting/story.aspx?content_id=0C3E6890-AD7C-48E4-9FF6-71116A771D7B
Children care for elderly parents
Adult Children Share Care of Aging Parents

***** You can download the 43 page report or review the short articles
summarizing the findings.

-------------------------------------------------


http://www.ces.ncsu.edu/depts/fcs/pub/2000/caregiving.html
Caring for aging family members: implications and resources for family
practitioners

Abstract: The caregiving role is often bestowed on an adult child by
default and can be distressing to the family system. Precautions need
to be taken to protect adult child caregivers from role overload as
they become sandwiched between caring for an older parent and helping
their own children launch into adulthood. This manuscript will
describe some of the positive and negative aspects of caregiving. It
will also offer suggestions and resources that Extension educators,
family therapists, and family service providers can use to support
adult child caregivers as well as to plan effective treatments,
educational programs and services for this rapidly growing group.


=================================
FAMILY CAREGIVERS? TECHNOLOGY USE
=================================

http://dir.groups.yahoo.com/dir/Family___Home/Families/Individual_Families
Individual Families Groups (5390)

-------------------------------------------------


http://www.caregiving.com/yourcare/html/survey2003.htm
A Synopsis -- 2003 Family Caregiver Survey Results

Do you use the Internet? How often and for what purposes?
80% of respondents use the Internet; the majority access it daily. The
most oft reason for using the Internet is to learn about a care
recipient's illness or disease. The second top reason is to take a
break from caregiving; the third, to learn how to care for a care
recipient (hands-on care tasks, medication management, behavior
management).

-------------------------------------------------


http://www.lifecare.com/connection/2q04_8.html 
Latest Research on Caregiving Holds Important Implications for Employers

Finally, the new data show that caregivers are turning to the Internet
in larger numbers for information on conditions and treatment options,
services available, and for support and advice from others. In fact,
recent data show that people turn to the Internet as often as they
turn to their family doctor when they need help! This means that your
work/life provider?s web site will become an increasingly important
tool for you, your employees, and their dependents.

***** Caregivers are getting more and more comfortable with using the
Internet to gather information about community resources and medical
condtions.

-------------------------------------------------


http://www.careerjournal.com/columnists/workfamily/20040730-workfamily.html
Long-Distance Elder Care Is a Full-Time Responsibility 
By Sue Shellenbarger 
From The Wall Street Journal Online

Technological innovations hold promise for cutting caregivers'
telephone and travel bills, easing the emotional toll and even,
through better oversight, curbing elderly relatives' emergency-room
visits. Caregiver Technologies, of Norman, Okla., is developing an
in-home teleconferencing system for families. The system, which can be
controlled remotely by caregivers, includes live video, photos and a
calendar with family news.

Beverly O'Brien, also of Norman, Okla., is testing the gear and says
it enables her to see and talk with her 87-year-old mother, make sure
she's taking her medication and watch for signs she needs help. The
company hopes to begin leasing the system on a limited basis next
January, says Chief Executive Officer Ken Nixon; the price hasn't been
determined.

-------------------------------------------------


http://www.familycaregiversonline.com/family_caregiver_module_10.htm
Long Distance Caregiving

In this module you will learn to assess what?s working and any unmet
needs of aging family members, how to identify and use resources to
access needs and develop plans to meet those needs, how to engage
natural supports including siblings, other family members, friends,
neighbors and others who live close in the community of aging family
members, & develop a plan to balance responsibilities and taking care
of yourself.

 -- The telephone may be the most important tool in long distance caregiving. 
 -- Use the internet to locate educational resources as well as
information on services and benefits.
 -- Use the phone to gather information and get referrals to the right resources. 

-------------------------------------------------


http://www.chcf.org/documents/ihealth/HealthEPeople.pdf
http://www.informatics-review.com/thoughts/chf.html
Health e-People: The Online Consumer Experience

Online Health Consumer Opportunities
As consumer interest in the Internet for health care increases and
converges with the growing capabilities of online health services,
many opportunities will arise, both to improve health and for online
health businesses. These opportunities fall into the categories of
content, community, commerce, and care (see Table 1 Behaviors and
Needs of Online Health Consumers).

***** This is a 73 page report from the Institute for the Future that
was published in 2000. Some of the information is dated but the basic
framework of assessing who will be using the Internet for health
information is still useful.

-------------------------------------------------


http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=555
Family Caregiver Internet Research Study Results -- 01/11/2004 

Below is a summary of the findings from the study you helped me
complete. If you have any questions or comments about the study,
please feel free to contact me. There are phone and e-mail contacts at
the end of the summary. This sample wasn't large enough to determine
if there were differences in certain kinds of health conditions but
that is one of the things I want to look at in future studies.


===================================
RESEARCH INITIATIVES FOR CAREGIVING
===================================

http://www.caregivertech.com/
About Caregiver Technologies 
 
ICSS was originally developed to meet the needs of three remote
caregivers - three brothers who are primary caregivers to their mother
who was diagnosed with Alzheimer's disease in 1994. The three brothers
live three to five hours away and have full-time jobs. ICSS was
conceived and developed to satisfy their remote caregiver needs and it
has now become a key component of their caregiver's intervention
strategy. The primary objective was to enhance the support provided to
their mother and minimize the time and cost required to provide
support. Along with improving care, another primary objective was to
maintain their mother's independence and keep her on the family farm
in a familiar environment for as long as possible.

***** This is a product addressing the exact need you described in your question.

-------------------------------------------------


http://seattleweb.intel-research.net/projects/cscc/index.html
Computer-Supported Coordinated Care (CSCC)

The purpose of the Computer-Supported Coordinated Care (CSCC) project
is to identify the characteristics and needs of the care networks for
elders who wish to remain at home (i.e., "age in place"). Ultimately
our goal is to develop technology to help this population. In a three
phase study towards this end, we developed an empirical approach
focused on the wide range of people involved with home elder care.

Our study was conducted in 3 phases: 
Phase #1: Semi-structured interviews with eldercare stakeholders to
establish the CSCC approach
Phase #2: Roundtable discussions with network members to establish
design specifications for possible technologies to support the network
Phase #3: In-situ deployments of our first CSCC technology probe, the
CareNet Display, to explore how technology-based systems might improve
the lives of the care network members and the quality of care received
by elders

***** This is an outstanding site for interesting developments in the
development of technology resources for coordinated care between
institutions and family caregivers. See additional links for specific
relevant information

------------------------

http://seattleweb.intel-research.net/projects/cscc/sources.html
Computer-Supported Coordinated Care Publications and Links

------------------------

http://www.intel-research.net/Publications/Seattle/022320041335_230.pdf
Phase #1 of Computer-Supported Coordinated Care Project
The purpose of the Computer-Supported Coordinated Care (CSCC) project
is to identify the characteristics and needs of the support networks
for elders who wish to remain at home (i.e., ?age in place?).
Ultimately our goal is to develop technology to help this population.
In a three phase study towards this end, we developed an empirical
approach focused on the wide range of people involved with home elder
care.
Document Number: [IR-TR-2004-26]
Publish Date: 1/1/2004
Primary Author: (Lookup bios):  ROESSLER, PETER J 
Other Author(s) (Lookup bios): CONSOLVO, SUNNY A;SHELTON, BRETT E

***** This is a 47 page report available for free download.

------------------------

http://www.intel-research.net/Publications/Seattle/030520041041_233.pdf
The purpose of the Computer-Supported Coordinated Care (CSCC) project
is to identify the characteristics and needs of the support networks
for elders who wish to remain at home (i.e., ?age in place?).
Ultimately our goal is to develop technology to help this population.
In a three phase study towards this end, we developed an empirical
approach focused on the wide range of people involved with home elder
care.
Document Number: [IR-TR-2004-27]
Publish Date: 1/1/2004
Primary Author: (Lookup bios):  ROESSLER, PETER J 
Other Author(s) (Lookup bios): CONSOLVO, SUNNY A;SHELTON, BRETT E

***** This is a 27 page report available for free download.

------------------------

http://seattleweb.intel-research.net/projects/cscc/display.html
The CareNet Display

The CareNet Display is our first technology probe in the space of
CSCC. It is an interactive digital picture frame that surrounds a
photo of an elder with frequent updates about important details from
her daily life. It is meant to be used by the local members of her
care network who provide her day-to-day care. The idea to use an
interactive digital picture frame in this context was inspired by the
Digital Family Portraits project at GA Tech.

***** This product provides much of the information my siblings and I
were trying to monitor with our Yahoo! Group for helping my parents.
(See demo below.)

------------------------

https://beechwood.seattle.intel-research.net/portrait_heuristic_evaluation/explicit.asp
CareNet Display Demo 
To see the various screens of the CareNet Display that were used for
the Phase #3 deployments and to get an idea of what the interaction
was like for participants, we have made an interactive, but static,
copy of the display available online.

-------------------------------------------------


http://www.careerjournal.com/columnists/workfamily/20020719-workfamily.html
Can Technology Ease Elder-Care Concerns?
By Sue Shellenbarger 
From The Wall Street Journal Online 

As the nation ages, I've long believed technology holds promise in
helping families care long-term for the elderly.

To test my theory and see what it would be like to live in a world of
high-tech elder care, I fast-forwarded my own life into old age and,
for 24 hours, became a resident of the nation's most high-tech
assisted-living facility.

***** This article and the following one discusses the new
technologies available from the CSCC organization above.

------------------------

http://www.careerjournal.com/columnists/workfamily/20020726-workfamily.html
Electronic Monitoring: An Elder-Care Answer
By Sue Shellenbarger 
From The Wall Street Journal Online

In the second of two columns on high-tech elder care, my brother, Dave
Shellenbarger, and I look at the potential of technology to help
remote caregivers. With Dave, founder of a computer hardware and
software concern, playing the role of caregiver from his Michigan
home, and me playing the role of an aged relative, we tested one of
the best examples of applied technology in U.S. long-term care --
Oatfield Estates, an assisted-living facility in Milwaukie, Ore.

***** This is part two of the above report.

------------------------


http://www.elite-care.com/oatfield-tech.html
Oatfield Estates ? Technology

Creating an Autonomy-Risk Equilibrium? (CARE) 
CARE? is Elite Care's comprehensive "smart home" technology system
that serves two primary audiences. The first is residents who want
biofeedback and cues to prolong their independence. The second is
staff who want ways to identify health problems early and objective
quality control measurements.

***** This is the website of the institution mentioned in the article.

------------------------

http://www.cooltown.com/cooltown/mpulse/1103-elderly.asp
House Calls 
Intel, GE and HP researchers merging proactive health, pervasive
computing to allow seniors to live independently longer

Elderly residents living at the Oatfield Estates outside Portland,
Oregon, are resting a little easier these days, thanks to modest
investments in off-the-shelf technology and a few PCs.

***** This article expands on the technology discussed in the Wall
Street Journal article.

-------------------------------------------------


http://www.twincities.com/mld/twincities/living/health/8717735.htm?1c
May. 21, 2004
Technology may help seniors live independently

Big Brother is watching, and this time it's a good thing.
In the near future, concerned relatives of elderly family members who
live alone may be able to turn to a new high-tech system that monitors
seniors' activities ? or lack thereof.
"Smart House" technology, which checks changes in a senior's normal
routine and alerts drop-in caregivers, may help some seniors remain
independent by identifying health problems early on and providing
peace of mind to relatives.

The technology, developed by the University of Virginia's Medical
Automation Research Center, was tested in two Volunteers of
America-owned residential facility for senior citizens. Here's how it
works:

***** This is another research organization and similar resident
monitoring product.

------------------------

http://smarthouse.med.virginia.edu/
The MARC Smarthouse technologies are passive and unobtrusive
technologies for monitoring elders' activities, designed with privacy
and security in mind. Take our tour and also visit the Medical
Automation Research Center website to learn more.

***** This site provides more details about the Smarthouse technology.

-------------------------------------------------


http://www.agingtech.com/index.aspx
The Center for Aging Services Technologies (CAST) is a catalyst for
innovation and new technologies in aging services. We are pleased to
offer a clearinghouse of information about emerging technologies in
aging services. Our content is submitted and regularly updated by
technologists, researchers, and aging service providers.

***** This site provides an excellent collection of resources on
emerging technologies, research projects and available products.

-------------------------------------------------


http://www-2.cs.cmu.edu/~khaigh/AAAI02/papers.html
Papers from the AAAI-02 Workshop "Automation as Caregiver"

***** The papers listed here will give you a good idea of the kinds of
technologies that are under development to help elders and their
caregivers.

-------------------------------------------------


http://www.htc.honeywell.com/projects/ilsa/about_introduction.html
The Independent LifeStyle Assistant TM monitoring system (I.L.S.A.)
will help elders maintain a safe living environment, interact with
home service providers (grocery delivery, cleaning, shopping, etc.),
and stay connected with their communities -- family, friends,
neighbors, and doctors -- from the comfort of their homes.

-------------------------------------------------


http://www.awarehome.gatech.edu/index.html
The Aware Home Research Initiative (AHRI) is an interdisciplinary
research endeavor at Georgia Tech aimed at addressing the fundamental
technical, design, and social challenges presented by such questions.

***** Be sure to browse the Projects, Publications and News tabs for a
very interesting selection of emerging technologies to help elders
stay in their homes and stay connected with their families.


===============
SEARCH STRATEGY
===============

online family networks
"computer assisted" care coordination "family care"
family groups managing elder care
technology family groups managing elder care
adult siblings sharing information taking care of parents
"internet use" "caring for aging parents"
internet for "taking care of mom and dad"

Request for Answer Clarification by tomferguson-ga on 15 Feb 2005 15:18 PST
Hi, czh-ga,

I'm researching this topic for the Pew Internet & American Life
Project, and so far your experience has been comparable to ours: Lots
of antedotal stories of online family support networks but little or
no analysis or reports of serious studies. I'm convinced that this is
an important topic in Information Age health services research. But it
clearly has not appeared on the consentual rader screen--which as a
manicial online health/e-patients researcher only makes me all the
more intent to dig deeper. (For some of my previous writings on
related topics, do a search for "e-patients" and Ferguson.")

Your account of your own experience with setting up the Yahoo group to
coordinate your parents' care was the most useful part of your answer.
And to tell the truth, most of the rest was really off topic for my
purposes. I was probably too restrictive in specifying a focus on
elders. I was imagining that there must be lots of such networks
(since I am a part of one) but I'd be quite happy for any good
examples and/or insights into how patients and other family members
facing a medical crisis can seek and/or receive  help from online
networks of family members and friends.

A search on "patient family e-mail; support Internet" turned up the
following example, which I am planning to use in the report I am
currently writing:

Source:
Cochran, Ann, 
?I?m Sorry to Tell You This, but...?
The Washingtonian, April 2003
http://www.washingtonian.com/health/braindisorder.html 

When medical tests revealed that Ann Cochran?s 13-year-old son Harris
had a life-threatening arteriovenous malformation in his brain, the
Washington DC communications consultant
"?began by calling Harris?s pediatrician and our internist. Then I put
out an e-mail to friends and family. E-mail became an instant support
group, family reunion, and advisory board. Friends of friends,
relatives of friends, and friends of relatives wrote back:
    ?We have friends at Mayo.?
    ?You have to see [Dr.] Cogen at Children?s.?
    ?We?re bringing dinner over on Friday night. What?s Harry?s favorite dessert??
I was inept at group e-mail and found myself re-creating the expanding 
list every time I wrote an update. A friend suggested a Web site
called CaringBridge.com, designed to track births, deaths, adoptions,
and illnesses. I created Harry?s page with a few clicks.

Would you be willing to make another round of searches, casting the
net a little more broadly, to see what we might come up with? E.g.

"Using the Internet to care for a loved one"
caringBridge.com
"family networks" "disabled child"
"family support networks"
"online caretaker support"
"online patient support networks"
"family networks" Internet
"family support networks" Internet
"e-mail to friends and family" diagnosed
"e-mail to friends and family" diagnosis
Ditto the above with "email"
Have you any other ideas along this line?

I was also wondering--What did you call your own online family group?
(Maybe we could search for something similar.)

Is that family e-group still online? Or archived? Any possibility that
I might be able to take a look a look at it? (With the understanding
that any any reportage would be disguised & completely anonymous.)
How else might we be able to search for similar groups?

Clarification of Answer by czh-ga on 15 Feb 2005 15:59 PST
Hello Dr. Ferguson,

Thank you very much for the additional information about your project.
I had found your FerusonReport website and wondered if it was you. As
you said yourself, this was an extremely frustrating search. I spent
many more hours than I normally would because I couldn?t believe that
I wasn?t finding anything. I get obsessive when I know something
exists but I can't find it. Everything about online support groups
pointed to affinity/interest groupings, not families. Some of the
reports about e-medicine pointed to developments in doctor/patient
communications but didn't address the family caregiver's concerns or
roles. Now that I know more about what you?re looking for I?ll give it
another try.

As for my family support group ? I?m afraid it?s much too personal to
share even with guarantees of anonymity. The five of us still use it
whenever something comes up. We have not opened it to anyone outside
our sibling circle ? not even spouses or children. We use our Family
group for sharing information with the wider circle. This includes
everyone in the family and has been extremely helpful for handling the
less intimate and yet still very personal issues involved with my
parents? situation. We are a totally wired family with only a couple
of holdouts who resist communicating online.

I?ll take another look and see what I can find for your project.

~ czh ~

Clarification of Answer by czh-ga on 15 Feb 2005 22:09 PST
Hello again Dr. Ferguson,

As you can see, I accepted your challenge to try to find more
information about how families are using the Internet in sharing
information and coordinating their activities. I?m amazed how
difficult it is to find information on this topic. I tried your search
strategies and added some new ones as well. I followed through on
anything that was useful and found additional stories. I also found
that searching the Infotrac online database from my local public
library was helpful when using some of the same strategies as you and
I had used on the Web because the results were all from newspapers,
magazines and other publications without the clutter of the Web. Once
I found an article in the library database I was usually able to find
it online as well.

Here are the highlights of my research. I found some sample family
websites that explicitly stated their purpose of improving family
communications. Most of them are not focused on dealing with
caregiving or a family crisis although they seem to recognize the
potential for this. I discovered that blogs may be a fruitful topic
area to explore further and I?ve included some samples. In addition, I
also discovered that some hospitals are using patient websites to
communicate about the patient with the family. I also discovered that
there are some collaborative website products specifically aimed at
divorced families which seem to address the same basic needs as your
question poses about managing family communication for medical
situations.

I spent many more hours on this project than I planned to, but the
topic fascinated me. I hope that you find my additions useful.

Wishing you well for your project.

~ czh ~


=============================================================
FAMILY GROUPS, BLOGS AND WEBSITES ? HEALTHCARE AND CAREGIVING
=============================================================

http://www.ec-online.net/Knowledge/Articles/familymeetings.html
Using Family Meetings to Resolve Eldercare Issues

Organizing a family meeting is a complex task. It involves
coordinating the schedules of many to discuss a topic close to their
heart. Having a predetermined time and date to meet will help all
members be able to plan accordingly. You may find that it is
convenient to keep in touch via the Internet. MyFamily.Com
(http://www.myfamily.com) offers families the ability to coordinate
schedules through a calendar of events, post updates, and even post
pictures on the site! For each topic included on the calendar, those
listed in your database will be notified via email. This is excellent
when coordinating multiple doctor appointments, family schedules, and
keeping everyone updated. It is also a fun place to show off the
grandkids new art work and to remind everyone that they are a family
as a whole, not only during a crisis.

-------------------------------------------------


http://www.carepages.com/
CarePages are personal Web pages that help family and friends
communicate when someone is receiving care. It's free, private and
easy to use!

http://www.carepages.com/aboutus.jsp?seed=543956
CarePages.com springs from the personal experience of its founders, a
young family who used the Web to share news and support during the
hospitalizations of their newborn son, Matthew. Now a happy, healthy
child, Matthew has inspired CarePages - a personalized, private
homepages for people facing hospitalization, chronic illness,
pregnancy or extended care.

------------------------

http://telemedicine.weblogsinc.com/entry/1234000600025778/
Monday, January 03, 2005
Personalized Web Pages for Hospitalized Patients

Posted Jan 3, 2005, 1:21 PM ET by Catherine Calacanis
California-based Sutter Health recently launched a program in its
hospitals that allows the families of patients to create personalized
Web pages to post information on the patient, according to the
Sacramento Bee.  Families can use a home computer to update the Web
page, or they can use computers in hospital waiting rooms or library. 
Called CarePages, the service e-mails the patient?s friends and family
when the Web page is updated. Interested parties can respond with
messages to the patient and the patient?s immediate family. The Web
pages, which are password-protected,  help reduce calls to nurses in
the intensive care unit, which can be disruptive. The service can be a
godsend to those who are designated as the ?point person? during a
family crisis. A centralized place for dispersing information on the
patient?s condition decreases the amount of phone calls and repition
of information and can also stem the proliferation of mis-information.
However, privacy concerns loom.

-------------------------------------------------


http://www.sccm.org/press_room/press_releases/Sept212004.asp
INTERNET SIMPLIFIES FAMILY COMMUNICATIONS IN THE ICU

(DES PLAINES, Ill., September 8, 2004) - Referring physicians and
families found Internet-based communications helpful during a child's
stay in the pediatric intensive care unit (PICU), according to a study
published in the September issue of Pediatric Critical Care Medicine.

Individualized, password-protected websites were created for the PICU
patients in the study. Families could check the child's clinical
status, read the nurses' notes, and view patient images on the
website. The family websites also had a messaging area where nurses
and family members can exchange comments and questions. Referring
physicians had a separate website for each child where physician notes
and radiological images were available.

-------------------------------------------------


http://www.timegoesby.net/2004/08/a_tgb_mom_issue.html
In my private hours now ? age 63 at this writing ? I am excited about
exploring what getting older is really like. There is precious little
information available in popular writing that is not negative, focused
mostly on disease, debility and decline. But I don?t believe getting
older could possibly be as bad as our culture makes it out to be.

***** This blog chronicles the author?s journey taking care of her
mother in the final months of her life. It also offers links to many
other blogs on aging.

-------------------------------------------------


http://katesandwiched.blogspot.com/
kate sandwiched 
sandwich generation n. People who must care for both their children
and their parents. Also: sandwiched generation.

I have 3 kids. Maggie is 5, Frank is 3 and Maureen was born on May Day
2004. My mom, who had cancer, lived with us from July 1 until December
2004. She passed away on February 4, 2005.

-------------------------------------------------


http://mkelley.net/archive/2003/06/06/patient_blogs/
Michael Kelly
Patient Blogs?
Children?s Hospital of Pittsburgh Patients and Families to Create
Personalized Web Sites

I would say that this is the closest weblogs have made an inroad into
healthcare. With HIPAA, only families and patients can talk publically
about an illness. I couldn?t imagine a physician using a CarePage, or
a weblog to communicate to everyone.

-------------------------------------------------


http://www.anticlue.net/archives/000088.htm
Anticlue
An IT Analyst's musings based on experience in a Health Care Institution. 
December 09, 2003
Blogs for Communication

I checked out Kameron's site once again tonight, its become an evening
and early morning habit of mine. I'm amazed by Kameron's positivity.
I'm really astounded by the community that comments and follows his
progress. And I am really glad to be able to read about how he is
doing. He's a great kid.

The blog really serves as a mechanism of communication. When a family
member is sick, there isn't time to keep everyone as updated as you
would like. There really needs to be one point communication person
who relays everything out. The blog in this instance does that, and
keeps an ongoing journal. It provides an initimate insight to others
of Kameron's life since he has been diagnosised with CML.


============================================
FAMILY GROUPS, BLOGS AND WEBSITES -- GENERAL
============================================

http://www.aafsw.org/articles/linderman/stayingintouch.htm
Keeping in Touch with Family
 
To reduce annoying and offensive spam, you may want to set up your own
e-mail domain. For instance, Yahoo lets you purchase the more
"private" option of name@lastname.com instead of name@yahoo.com. Or
create a family website (for instance with www.myfamily.com ) and use
the e-mail addresses associated with that for your family
correspondence.

-------------------------------------------------


http://www.eweek.com/article2/0,1759,1744882,00.asp
Donated Intranet Service Helps Troops Stay Connected 
December 22, 2004 

Intranets.com is giving U.S. troops serving overseas a holiday
present?free access to its hosted communications tools.

The Woburn, Mass.-based company provides Web-based collaboration tools
such as file and document sharing, e-mail, calendaring and discussion
forums on a subscription basis, mostly to small-to-medium businesses
and departments of larger organizations. Now those services are
available free to members of the armed forces stationed overseas.
Troops can register for their own Intranets.com site at www.intranets.com. 
Where businesses share project files, members of the armed forces and
their families can share letters, photos, even sound and video clips.
Where businesses schedule meetings and conference rooms, troops can
keep track of upcoming events in the lives of their families back
home.

 http://www.wired.com/news/technology/0,1282,65997,00.html
Troops Stay in Touch on Intranet  

-------------------------------------------------


http://www.time.com/time/connections/article/0,9171,1101040412-607830,00.html
The New Family Album

More parents are using online blogs to share photos, memories, gripes
and advice with friends ? and strangers

Monday, Apr. 05, 2004
When Sara Hinds, 25, A middle-school teacher from Lexington, Ky., got
pregnant, she told her blog before she told friends and family. "I
thought it would be more fun to announce my pregnancy that way," Hinds
says. "I put a link on my family blog to an image of a stork with the
words 'We're expecting!', which then linked to my new baby blog. It
was a lot easier than making tons of phone calls and having to decide
who to call first."

Carlos Tirado, 40, launched Benjamin's Babyblog not only to track his
son's development and his own progress as a father but also so that he
and his wife Caterina could stay in touch with their families in
Mexico, Arkansas and the western U.S. from their home in the Bronx,
N.Y.

Nobody tracks the number of family-oriented blogs, and estimates of
the blogging universe range from 300,000 to 3 million sites, but by
all indications, baby blogs are becoming more common. According to an
October 2002 study by the Pew Internet & American Life Project,
parents are more likely to be online than nonparents, and 53% of
online parents say the Internet has improved the way they connect with
family; 61% say it has boosted relations with friends.

***** This isn?t about managing family crises or caregiving problems
but the basic concept of sharing your personal experience and getting
support is relevant to the question you posed. It might be interesting
to see if there are any blogs on caregiving.

-------------------------------------------------


http://ptech.wsj.com/archive/ptech-20040610.html
June 10, 2004 
Blogs Can Tie Families, And These Services Will Get You Started
By KEVIN J. DELANEY

Online Web logs, or blogs, have long been a bastion of techy types,
those prone to political rants, and assorted gossips. But now they're
making inroads among families who want to keep up on each other's
doings.

-------------------------------------------------


http://mikesejournal.com/archives/002768.php
I spent today ignoring tech news and issues and building a blog for my
daughter and son-in-law, who are about to head to China and adopt a
daughter (my granddaughter!)

As I did so I realized what a great one-to-a-few medium Web logs have
become as a means for families to stay and touch and share the
happenings of their lives.
I've come to think of blogs as just an interactive journalistic tool.
But they can be much more personal than that.

Wonder how many others use blogs for family communication?

-------------------------------------------------


http://www.livejournal.com/~jordanhay/
August 14th, 2004, 11:30 am - The internet keeping families closer together

In 2000, I began looking for a way to facilitate more family
communication using different internet tools. The first try was to
create family blogs where everyone had the password. These went pretty
well, but most of the posting came from the family members that were
the most internet savvy: hay family blog, brown family blog. Having
the required login and the extra shared password was complicated. And
family members didn't get the idea of a blog yet.

In late 2001, I decided to try a new tactic. I took the brown family
and moved them over to a yahoo group. This has worked really well. The
tech savvy members have adopted the fancy web-based features like
photos and links. But family members who weren't blog posters have
started sending e-mail when there's news like the recent hurricane in
florida, or when my cousin don brown retired. Other family members
usually respond. There are only 2 or 3 family e-conversations a year,
but those 3 conversations are really nice touchstones.

I haven't had as much luck with the Hay family. It makes sense. The
Hay family is generally less talk, more action. Perhaps I can get them
hooked on image sharing or travel journals. If anyone has suggestions
for cool family collaboration software, please post them as comments
or send them my way. It's about time to set the Hay family up with a
new set of tools.


====================================
FAMILY WEBSITES FOR DIVORCED PARENTS
====================================

https://www.kidsncommon.com/welcome/
KidsnCommon.com is a website for divorced parents who want to more
effectively organize their lives so they can focus on their children.
Members have access to our Web-based tools to help them communicate
with their ex-spouses and better manage:
 -- Schedules - Keep track of visitation schedules, school activities
and other events.
 -- Finances - Quickly and easily exchange shared expenses and support payments. 
 -- Planning - Turn the rules of your divorce decree into a dynamic planning tool. 
 -- Support - Access an extensive library of family articles, online
help and resources.

https://www.kidsncommon.com/mktg/?pg=non-member-users 
Families
Parents, kids and relatives can learn to communicate more effectively
by keeping contact and through online interaction.

Advisors
KidsnCommon allows advisors and attorneys to work interactively on
line with clients and their ex-spouses. Advisors and attorneys get a
better understanding of the issues their clients are dealing with.

Employers
KidsnCommon provides better communication and personal scheduling
tools and increases productivity by preventing unexpected absenteeism.
Access to therapists and financial counselors can increase motivation
by decreasing stress at home.

***** This is another application of a tool for family collaboration
with helpers, service providers and other outsiders.

-------------------------------------------------


https://www.ourfamilywizard.com/index.cfm
https://www.ourfamilywizard.com/index.cfm?action=NewCompanyAbout
Ourfamilywizard.com? was created out of necessity.

My name is Paul. I have three children with my former spouse. Both my
former spouse and I have remarried. My wife Dara, has a daughter with
her former spouse who has also remarried. Dara is a flight attendant
and works irregular hours. Scheduling with all of these interests in
mind is extremely difficult.

The task of trying to schedule our family plans for the holidays was
more difficult than usual. Like many families, we found ourselves
having to make our plans while respecting the interests of a former
spouse and the needs of blended separate households. We had scheduling
mishaps due to poor communication. Our inability to communicate
effectively resulted in conflicts that made the holidays more
difficult for everyone. The holiday season for me has always been a
time of hope and a time when children should have fond memories. I did
not want to have a cloud over any special times again.

------------------------

https://www.ourfamilywizard.com/index.cfm?action=NewProfessional
Professional Site
Ourfamilywizard.com? was specifically designed to help families with
scheduling from separate households and with managing their important
family information. This website was originally designed to help
families, but it has become evident that family law professionals
could benefit from its organizational tools as well.
Ourfamilywizard.com?'s features are intended to help family law
professionals work with their clients.

------------------------

http://www.christiansciencemonitor.com/2003/0702/p14s01-lifp.html
The kids' schedule? See the website.

***** This is another divorced family management site similar to KidsnCommon. 


==================================
FAMILY USE OF INTERNET -- RESEARCH
==================================

http://www.lse.ac.uk/collections/EMTEL/Public_Communication/Transforming_the-Family.doc
Transforming the Family: Towards a ?Shell Institution?? ? A Research Note

This short paper is intended to introduce some of the issues that
emerged surrounding the internet and family life. It is intended as a
briefing paper to indicate some of the tendencies emerging from the
research, rather than a fully developed argument.

?I think the internet has re-introduced our family,? was the confident
statement of Michael when asked whether he used the internet to
maintain family contact. Michael?s statement is interesting as not
only is it indicative of the type of use that was popular among
participants, but also the ways in which internet use can provoke
changes in the way in which family membership is perceived and
performed.

http://www.lse.ac.uk/collections/EMTEL/
Research  Results (Uses frames. Choose Abstract or Full Report in pdf format.)
Katie Ward -- An Ethnographic Study of Internet Consumption in
Ireland: Between Domesticity and the Public Participation

-------------------------------------------------


http://www.jhillan.com/pdfs/hillan_cmr_1003.pdf
Physician Use of Patient?centered Weblogs and Online Journals

THE POWER OF PATIENT BLOGS AND ONLINE JOURNALS
Blogs and online journals have evolved as part of the consumer and
patient empowerment trend that has characterized the Internet age.
Common uses of these media created by people living with illness
includes keeping a daily log of their disease state, progress and
setbacks. Family and friends have an opportunity to "visit" regardless
of geographical location, visitation restrictions, or even how well
the author of the journal is feeling. Unless the site is password
protected, anyone with an Internet connection can potentially access
these public sites.

The personal perspective written in online journals and blogs offers
physicians a unique channel for learning about the mental, emotional
and physical state of people living with medical conditions and how
these change over time.
Comments by visitors who provide support, find a shared experience, or
describe their triumphs and setbacks can be equally revealing. These
ongoing forums are rich, anecdotal sources of individual experiences
with disease progression, reaction to alternative and standard
treatments, and opinions on healthcare and its effect on family
members and lifestyle.



============
SEARCH TERMS
============

blog family caregiving
blogs taking care of "family crisis"
Blogs for family communication
"family communication" "family websites"
tomferguson-ga rated this answer:5 out of 5 stars and gave an additional tip of: $25.00
A very thorough and thoughtful effort in an area in which several good
researchers had come up empty.
Very nicely done.  Many thanks. One quick question, czh-ga--I would
like to quote your account of your own family network in my white
paper. And it would be convenient, from a purely editoirial point of
view, to know whether I should annotate your comments with "he said,"
or "she said." ;-)

Comments  
Subject: Re: How adult children use online family networks to care for aging parents.
From: stressedmum-ga on 13 Feb 2005 23:42 PST
 
Is this the kind of site that you mean? This is an excellent resource,
full of information, and my family uses it (i.e. receives newsletters
via email and accesses other on line info via it) in the care of our
aged mum.

http://www.dementiacareaustralia.com/services.html
Subject: Re: How adult children use online family networks to care for aging parents.
From: tomferguson-ga on 14 Feb 2005 08:13 PST
 
Many thanks, stressedmum-ga. This is indeed an excellent site--but it
is not exactly what I am looking for.

Here are some examples of what I'm hoping to find: 

     "How our family used e-mail (or a mailing list) to keep in touch
and provide guidance
      and support when Mom was in the hospital"

     Dad's family support Weblog

     A study of online family networks in the care of the frail elderly.

Perhaps Jane Verity, who owns the Web site you suggested, might know
about some of these types of resources.

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