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On-line Support Group Leader
Manual and Resource Guide
produced by
Alpha-1 Canada
and
Canadian Organization for Rare Disorders
with funding from
the Ontario Trillium Foundation
[Type text]
Acknowledgements
Alpha-1 Canada and the Canadian Organization for Rare Disorders wish to acknowledge the following organizations and
individuals for their contributions to this manual and the on-line support group model it is a part of:
Ontario Trillium Foundation
Alpha-1 Association (US)
Ed Brailey
Canadian Child Welfare Research Portal
Center for Community Support and Research at Wichita State University
Sharon Gow-Meawasige
Karen Hill, Helping You Helps Me: A Guide Book for Self-Help Groups,
Chad Hunter, eHow Contributing Writer
Kate Lorig, Stanford University, Chronic Disease Self-Management Program for patients
Vanessa McLaughlin, Alpha-1 Canada
Mimi McPhedran, Alpha-1 Canada
Dick Mooney, Leadership Skills, Working With Difficult People
Jim Mundy, Alpha-1 Canada
Ian Tuffley, B.Sc.
Durhane Wong-Rieger, Ph.D., Canadian Organization for Rare Disorders
Table of Contents
Section 1: On-line Support Group Leader Manual
Welcome ......................................................................................................................................................................... 1
Introduction ...................................................................................................................................................................
Role of Support Groups ................................................................................................................................
Purpose of a Support Group .......................................................................................................................
Why people join a Support Group .............................................................................................................
Why people stay in a Support Group .......................................................................................................
A sense of belonging ........................................................................................................................
Reducing isolation ............................................................................................................................
Empathy .............................................................................................................................................
Feeling safe ........................................................................................................................................
Humour ...............................................................................................................................................
Why on-line Support Groups work ............................................................................................................
What makes a good Support Group? .......................................................................................................
2
3
3
3
3
3
3
3
3
3
3
4
Confidentiality ..............................................................................................................................................................
Exception 1: If someone declares a plan to harm him or herself or another adult .........................
Exception 2: If you suspect that a child is, or may be, in need of protection ...................................
Confidentiality Guidelines ............................................................................................................................
5
5
5
5
Starting a Support Group .......................................................................................................................................... 7
Leadership skills ............................................................................................................................................................ 8
Leader responsibilities ................................................................................................................................................. 9
Member responsibilities ............................................................................................................................................. 10
Responsibilities of Group Members to each other ................................................................................ 10
Meeting planning ........................................................................................................................................................
Prepare in advance ......................................................................................................................................
Conducting a meeting .................................................................................................................................
The first meeting ..............................................................................................................................
11
11
11
11
Getting organized ..............................................................................................................
Format of the first meeting .............................................................................................
Meetings after the first meeting .....................................................................................
Agenda Items ......................................................................................................................
11
11
11
11
Problem solving ........................................................................................................................................................... 13
Problem Solving is not the same as giving advice ................................................................................ 13
Identify the problem ....................................................................................................................... 13
Brainstorm solutions ........................................................................................................................ 13
Test the solution(s) ........................................................................................................................... 13
Asses the results ................................................................................................................................ 13
Try another solution ........................................................................................................................ 13
Start over ........................................................................................................................................... 13
Be honest ........................................................................................................................................... 13
Things to remember as your Support Group matures ..................................................................................... 14
Remember To Share .................................................................................................................................... 14
Remember To Be Realistic ......................................................................................................................... 14
Remember that Groups develop in stages ............................................................................................ 14
Forming ............................................................................................................................................. 14
Norming ............................................................................................................................................ 14
Storming ........................................................................................................................................... 14
Performing ....................................................................................................................................... 14
Remember To Assess and Reassess ............................................................................................................ 15
Remember what Support Groups do best .............................................................................................. 15
Remember to re-evaluate periodically ................................................................................................... 15
Dealing with challenging situations (and yes, challenging people) ............................................................... 16
Dealing with disease progression .............................................................................................................. 16
Attendance and fluctuating number s .................................................................................................... 16
Dealing with difficult people ...................................................................................................................... 17
Control ................................................................................................................................................ 17
Conflict ............................................................................................................................................... 17
Power ................................................................................................................................................. 17
Negotiation ....................................................................................................................................... 18
Ego ...................................................................................................................................................... 18
Strategies ......................................................................................................................................................... 18
Use the right sized tool ................................................................................................................... 18
Smile ................................................................................................................................................... 18
Be Assertive ....................................................................................................................................... 18
Dealing with the aggressor ......................................................................................................................... 18
Dealing with the "Know It All" ................................................................................................................... 18
Avoid labeling people ................................................................................................................... 19
Reinforce desired behaviour ........................................................................................................ 19
Humour ............................................................................................................................................. 19
Be flexible ......................................................................................................................................... 19
Continue discussions later ............................................................................................................. 19
Show respect .................................................................................................................................... 19
Be patient ......................................................................................................................................... 19
Debates .......................................................................................................................................................... 20
Changing priorities ...................................................................................................................................... 20
When a Group Member dies .................................................................................................................... 20
Taking care of yourself can be difficult, but necessary ....................................................................... 21
Managing burnout ......................................................................................................................... 21
Medical Advice ........................................................................................................................................................... 22
Finding topics and guest speakers ......................................................................................................................... 23
Guest Speaker Suggestions ........................................................................................................................ 23
Fund Raising .............................................................................................................................................................. 24
Fundraising Guidelines for Support Group Leaders ........................................................................... 24
Building a Regional Resource Guide ..................................................................................................................... 25
Keeping a Family Health History .........................................................................................................................
Conversations with your family ...............................................................................................................
Create a summary of health facts ..........................................................................................................
Create your family portrait ......................................................................................................................
Keep a journal or scrapbook ....................................................................................................................
26
26
26
26
26
Virtual meeting technologies and troubleshooting ........................................................................................... 27
Virtual meetings ........................................................................................................................................... 27
What are they? ............................................................................................................................... 27
How do they work? ........................................................................................................................ 27
Why are on-line virtual meetings significant? ....................................................................................... 27
What are the downsides of on-line virtual meetings? ......................................................................... 27
The how tos of on-line support Group meetings .................................................................................. 27
Proper camera placement is critical .......................................................................................... 28
Hear and be heard ........................................................................................................................ 28
Practice, practice, practice ........................................................................................................... 28
Use your voice and your body as tools ....................................................................................... 28
Be careful how you dress .............................................................................................................. 28
Maintain the face-to-face connection ....................................................................................... 28
Lighten up .......................................................................................................................................
Keep It Simple ................................................................................................................................
Keep It Short ...................................................................................................................................
Get Off to a Quick Start ..............................................................................................................
"Pre-Flight" Everyone ...................................................................................................................
Video Chat Applications ............................................................................................................................
VSee® ...............................................................................................................................................
ooVoo® .............................................................................................................................................
Skype ................................................................................................................................................
29
29
29
29
29
29
29
29
29
Section 2: On-line Support Group Leader Tools .................................................................................................. 31
Sample Group Agreement ...................................................................................................................................... 32
Support Group Confidentiality Agreement ........................................................................................................ 33
Where to call if you suspect that a child is or may be in need of protection .............................................. 34
Alberta ............................................................................................................................................................ 34
British Columbia ........................................................................................................................................... 34
Manitoba ........................................................................................................................................................ 34
New Brunswick ............................................................................................................................................. 34
Newfoundland & Labrador ....................................................................................................................... 34
Nova Scotia ................................................................................................................................................... 35
Northwest Territories ................................................................................................................................... 35
Nunavut ......................................................................................................................................................... 35
Ontario ............................................................................................................................................................ 35
Prince Edward Island ................................................................................................................................. 36
Québec ........................................................................................................................................................... 36
Saskatchewan .............................................................................................................................................. 36
Yukon .............................................................................................................................................................. 37
Information to share with new members ............................................................................................................. 38
Section 3: New Support Group Member Welcome Package ......................................................................... 39
Section 1: On-line Support Group Leader Manual
Welcome
creating a Group in a town or even part of town that can
meet regularly and in person is a very real possibility.
On behalf of the Canadian Organization for Rare Disorders,
Alpha-1 Canada, your patient organization and the future
members of your Support Group thank you for agreeing to
become an On-line Support Group Leader.
The same cannot be said in the case of rare diseases. Any
given rare disease sufferer may be the only person in town
with that disease or the only person for miles. This used to
mean that Support Groups for people with rare diseases
were not possible or required hours of driving. Depending on
a patient’s symptoms, driving may have been out of the
question, or made the meeting such an undertaking that
they were scheduled far apart and attended infrequently.
Being a Support Group Leader is an important function and
you will fulfill an invaluable role in the lives of the Members
of your Support Group.
Support Groups, also called peer Support Groups or self-help
groups, are common in many disease states; however, being
a Support Group Leader for a rare disease presents different
challenges and rewards.
In the case of more common diseases like cancer or diabetes
for example, the pool of potential Members is large and
This on-line model for Support Groups was specifically
designed using Internet tools to bridge those miles and make
Support Group attendance possible and easy for the
majority of people with a rare disease.
Page 1
Introduction
Many Support Groups for people with a disease hold
meetings at Group Members’ homes, or in church basements,
community centres and even restaurants. But for people
with rare diseases this is usually not an option. Depending on
the prevalence of the rare disease it may not be possible to
find enough people to form a Group in the same city or, in
some cases, even the same province.
Alpha-1 Canada and the Canadian Organization for Rare
Disorders (CORD) recognized that the health benefits of peer
Support Groups were well documented and that recent
technological advances could allow these benefits to be
extended to people with rare diseases. Although rare disease
sufferers are sparsely scattered, making face-to-face Support
Group meetings impractical, our intent was to develop and
implement a systematic model for virtual (internet-based)
peer Support Groups allowing all rare disease sufferers, their
families and caregivers to experience these critical and
essential health benefits.
The Internet evolved as a network to allow collaboration
between distant researchers using different computer
systems. This makes it well suited to support the
geographically distributed people in a rare disease Support
Group. As high speed Internet service reaches into more and
more rural communities, it becomes easier to utilize existing
networks to link distant people with common needs and
concerns. Data passes over this growing infrastructure in a
secure manner using security methods originally developed
for business transactions.
In addition, research has shown that 80% of Internet users
use the Internet for, among other things, finding healthrelated information. Since the most sought out information
on the Internet is health-related, it makes sense that on-line
Support Groups are a workable solution.
The Center for Community Support and Research at Wichita
State University (http://www.ccsr.wichita.edu) is
internationally recognized as a leading resource for research
on Support Groups, community coalitions, networks of
community Members and non-profit health and human
service organizations. A thorough review of their research
and the research they support demonstrates that patient led
Support Groups have proven benefits as very effective tools
in improving health outcomes.
This research demonstrates that Group Members experience:
instant identity by interacting with others “who
know how they feel”
improvements in feelings of loneliness through a
unique empathy from other Members which
differs from that of professionals
increased empowerment by encouraging them
to take charge of their condition and a feeling
of strength in numbers
a feeling of safety in being able to ask questions
in a safe, non-judgmental place about activities
of daily living helping to redirect emotions and
creating a level of accountability for their own
health
increased self-esteem and equality among
Members, which has therapeutic benefits
social role models develop and Members learn
how others cope
opportunities for mentoring
a normalizing effect will occur where Members
begin to view their experiences as “normal”,
understand that they are not alone and feel less
isolated, depressed and stigmatized
networking with others creates caring
relationships, fosters roles other than “patient”
and provides immediate access to help outside
of meeting times
information sharing provides practical
approaches to lifestyle issues and the sharing of
personal experiences to the benefit of others.
Members of a Support Group are sometimes told that they
cannot run their Group without a professional "expert" at the
helm. Not so!
While professional-led Support Groups have their place, the
real experts on living with a rare disease are the people who
live with a rare disease. They become more powerful and
healthy by learning how to help each other as well as
themselves.
Nevertheless, professionals can be very helpful as resources.
For example, a physician or educator can serve as a guest
Page 2
speaker, spread the word about the Group, or provide you
with technical information.
Support Groups can be effective in helping people to cope
with the psychological effects of their disease and therefore
improve their sense of well-being. They also provide a safe
place to express emotions, to gather information and to talk
to people who are in the same boat. They often help people
make decisions about treatment.
Many people who join Support Groups find they give as
much as they receive, which raises their confidence and
ability to cope. Research has shown that people who take
part in Support Groups have lower levels of anxiety and
depression and live longer than those who do not take part
in such activities.
Role of Support Groups
A Support Group involves a small number of people who
come together – in person, on the phone or through the
Internet – to share feelings and exchange information with
people who have had similar experiences.
Purpose of a Support Group
The purpose of a Support Group is to provide a safe place
where people affected by a common rare disease (patients
or caregivers) can support each other, develop friendships,
share ideas and thoughts, obtain information from health
professionals and each other, and learn coping skills in a nonjudgmental and caring atmosphere.
relax with others who understand what they
are going through.
While Support Groups meet the needs of many people, they
aren’t for everyone. Some people already have enough
support, while others want to deal with their disease
privately. Also, some people want to avoid talking about
their disease.
Why people stay in a Support Group
Once people join a Group, certain factors encourage them to
stay.
A sense of belonging
Group Members feel they are not alone. The Support Group
can act like a family, where Members feel supported, cared
for and accepted for who they are.
Reducing isolation
Groups develop a sense of community through shared
feelings and experiences. People feel connected with other
Members, which can help them to cope better.
Empathy
People outside a Support Group may not understand the
experiences of people who have a chronic disease or people
who care for someone with a chronic disease or they may
dismiss their feelings. In the Group people are heard and
understood.
Why people join a Support Group
Feeling safe
Most people join Groups to both learn about their rare
disease and treatments and deal with emotional effects.
They are looking for encouragement and optimism,
inspiration, hope for survival and quality of life, and advice
about how to get the best outcome.
Inside the Group people feel protected and safe to express
their feelings. Outside the Group they sometimes feel they
have to hide their feelings to protect others. Support Groups
are often seen as the safest place to talk about emotions and
difficult subjects; including thoughts about one’s own
mortality.
Research has found that the top five reasons people join a
group are to:
know they aren’t alone
hear about current medical research
Humour
People feel comfortable to have a good laugh, to relax and
feel at ease. Humour builds warmth in the Group and helps
Members cope with serious issues.
become more informed about their condition,
treatment and side effects
Why on-line Support Groups work
learn how other people deal with it and
compare their experiences
All Support Groups are made up of people with common
interests and experiences. People who have been through, or
are going through, a similar circumstance can do more than
Page 3
sympathize with each other; they can relate to what each
are going through and keep each other from feeling like
they are alone.
strong leadership
a clearly stated "confidentiality" policy
However, many people are unaware of the additional
benefits of joining a Support Group; Support Groups can be
a great place to find practical tips and resources.
particular qualities the individual is seeking (for
example, a Group around a specific condition,
or a Group for caregivers).
This is especially true in the case of rare diseases where the
sum of all the information the Members know is much
greater than any one Member could possibly know. The
Support Group Leader and Members together can share
information about,
medical treatments
nutrition
informed healthcare providers
promising medical research
public policy
legal resources
protection from discrimination
links to researchers
financial assistance
drug and treatment reimbursement.
The problem for people affected by a rare disease is that
there are not others affected by the same disease close by to
meet with. That is where the internet comes in to play.
On-line Support Groups use the significant power of the
internet to bridge the miles and bring people affected by a
rare disease together. So that, together, all the Members can
feel that the rest of the Group is right there in their home
with them.
What makes a good Support Group?
Although what is "good" differs for each person, there are
some universal signs that indicate a well-functioning Group:
up-to-date, reliable information is shared
prompt response to contacts
regular meetings
access to appropriate professional advisors (for
example, doctors, and experts)
Page 4
Confidentiality
By taking part in a Support Group people agree to share
very personal views and information. For example, simply by
joining they share the fact that they have a particular
medical condition. Some people are very open about their
health status, others are not, so even people’s last names
should not be shared. Group Members must be assured that
the information they share will be kept in the strictest
confidence. DO NOT RECORD YOUR MEETINGS!
There are two exceptions you need to be aware of where
you must report information. You should make sure that
Group Members understand these exceptions.
Exception 1: If someone declares a plan to harm him
or herself or another adult
If a Group Member clearly states a plan to harm
him or herself or another adult, it would be wise to
quickly get confidential advice on how to help or
intervene. For example, if you believe that someone
is in immediate danger, call a distress or help line.
The counsellor on the phone can help you figure out
the situation and decide on the best (if any) action
you should take. A professional who provides
support to your Group could also help with this or
you can contact your patient group. Otherwise, call
the police in the place where the Group Member
lives.
Exception 2: If you suspect that a child is, or may be,
in need of protection
Besides the two exceptions outlined above, the only
time you can change a commitment to
confidentiality is if you ask and talk directly with the
person concerned.
Confidentiality Guidelines
In order for your Group to grow and thrive
confidentiality is the most important issue you will
have to deal with. Do not discuss with other persons
(such as family, friends, neighbours, etc.) any
information obtained in conversation with the
Group and/or its Members.
There is a Confidentiality Agreement in Section 2 of
this manual on page 33. Ensure all Group Members
read, understand, sign and return the agreement to
you before you allow them to participate in Group
meetings.
Do not discuss with other people (such as family,
friends, neighbours, etc.) any information that is told
to you in confidence by Group Members either in
meetings or in private conversations or e-mails.
Confidentiality extends not only for the duration of
the time any person is in the Group, but also
continues indefinitely once their membership with
the Group has ended.
Members must understand that during their
membership in a Support Group they may learn
personal and confidential information about
individuals who call or are involved with the Group.
In a case of suspected child abuse or neglect all
provinces have legislation that states clearly that
members of the public have an obligation to report
promptly and directly to a child protection official or
agency if they have reasonable grounds to suspect
that a child is, or may be, in need of protection.
Whether information is available to them through
the Group or accidentally, they must agree to
maintain confidentiality and not reveal information
to any person in the Group or outside the Group
while a Member of the Group or at any time in the
future when they may no longer be a Member of
the Group.
Action must be taken if the person in charge of the
child is suspected of causing, or knowingly failing to
protect the child from physical, sexual or emotional
abuse, neglect or risk of harm.
They should also understand that breaking of the
confidentiality agreement could result in the
termination of their membership with the Support
Group.
For detailed local information on reporting
suspected child abuse see Where to call if you
suspect that a child is or may be in need of
protection on page 34.
Although good faith efforts are taken to preserve
participant confidentiality, your patient
organization can make no guarantees in this regard
Page 5
nor to information communicated by and between
participants in the Group.
Tell the Members of the Group that you will do
everything in your power to maintain their
confidentiality and ask them to do the same. Make
it clear that you trust the other Members of the
Group but can make no guarantees in this regard.
Page 6
Starting a Support Group
Unless you have made many contacts over a long period of
time, finding enough people to form a rare disease Support
Group can be difficult, if not impossible.
Your patient organization may have a list or database,
developed over time, with the names and contact
information for people with your rare disease and their
families and caregivers.
If you want to start a Support Group contact your patient
organization for help in reaching out to some of these
people.
This manual can help you with the details, especially the
technical issues of getting your Support Group “together” online.
If you have found this manual on the Internet and are
starting from scratch to form a Support Group for a rare
disease, try these helpful tips.
Determine whether there is already some sort of national
patient group for people with the same rare disease you
have. They should be able to help you make contact with
other people with that rare disease. A good place to start is
at the Canadian Directory of Genetic Support Groups on the
web site of the London (Ontario) Health Sciences Centre.
You can find it at:
http://www.lhsc.on.ca/Patients_Families_Visitors/Genetic_Sup
port_Directory/.
There are other places to research. For example a treatment
facility that specializes in your disease, or even a specialist
who you know to be an expert in your disease.
Again, for privacy reasons, they may not be able to give you
names, e-mail addresses or phone numbers but may be able
to contact people on your behalf and get permission to put
you in touch.
The law requires healthcare professionals to guard personal
information very carefully and there are stiff penalties for
not doing so. Be understanding of their situation and
grateful for whatever help they may be able to provide. All
they may be willing to do is post something on a bulletin
board so be prepared with a simple one pager that outlines
what you are trying to do and how to get in touch with you.
There are many web sites, blogs, e-mail lists, and news
groups on the World Wide Web. Search out ones related to
your disease. Someone may have had a similar idea and
used a technology like these ones to bring people together.
You never know, someone else may be a step or two ahead
of you and already started something. It may not be exactly
what you had in mind, but they may have done the hard
part of bringing the right people together in one place.
The Genetic and Rare Conditions page on the University of
Kansas Medical Center web site is also a good resource. You
can find it at: www.kumc.edu/gec/support. They do list some
Canadian organizations.
Keep in mind that these organizations will not be able to
give you a list of names and e-mail addresses. The very fact
that someone is a member of a rare disease patient
organization is private health information. They should
though be able to contact people on your behalf and get
permission to put you in contact.
If there is not a Canadian patient organization for your rare
disease there may well be one in the US. Contact the
American organization, chances are that other Canadians
have done likewise and they may be willing and able to
bring you together with those other Canadians.
Page 7
Leadership skills
A Support Group Leader has several tasks to perform. First,
of course, is to start the meetings on time. Additionally the
Leader must promote attendance, implement the ground
rules, mediate conflicts, help the Group stay focused, ensure
that all Members have an opportunity to participate fully,
and summarize at the end of each meeting.
There is much more detailed advice later on in this manual.
The following general steps for a Support Group Leader to
follow are just an overview and are adapted from How to
Facilitate a Support Group, by Chad Hunter, eHow
Contributing Writer
(http://www.ehow.com/how_4868485_facilitate-supportgroup.html)
Begin with introductions. Ask everyone to
introduce themselves and say maybe one or
two sentences about who they are. Keep
introductions short and light so anyone who is
shy or uncertain won't feel intimidated.
Everyone will attempt to make their
introductions similar to the first one they hear so
introduce yourself first, keep it short and state
that you are the Group Leader.
separate and apart from the Group so stick to
the topic and the schedule.
Stay on track. Facilitating a Group requires
keeping conversations, meeting times and
external influences on track. Once you have
determined that your meeting days and times
are best for all of the Members of your Group
stick to them. Shifting meeting times can create
a threat to Group harmony, so make sure to
stick to regular meeting days and times.
Be prepared for active involvement.
Facilitating a Support Group means you must
be ready to deal with real conversations,
interruptions, questions and answers from
various Members of the Group. Active
involvement can be hectic and will require a
major energy commitment from you.
Establish yourself as the Leader. Once you've
introduced yourself as such, act the role by
managing time, regulating conversations and
making sure communication avoids negativity
and animosity. Inspire the quiet people to talk
and limit the boisterous who want to talk all
the time.
Take notice of who is who. In order to facilitate
the Group, knowing who may have a victim
mentality, who may need extra attention, who
may pick on others and who may need a oneon-one connection is key. A good Support
Group Leader will not treat everyone the same
because each Member's needs are all differently
met by the Group.
Set topics and schedules based on the needs
and desires of the Group. Establish what each
meeting will be about and how long the Group
will meet for. Group Members have lives
Page 8
Leader responsibilities
As a Support Group Leader you will have a significant effect
on your Group. Leaders use communication, esteem, vision
and enthusiasm to motivate people to achieve personal and
organizational goals. The true test of your leadership is the
feeling people have after a meeting with you!
The art of leadership is empowering people to be all that
they can be. Helping people feel excited and passionate
about a purpose. Successful Leaders feel deeply and express
themselves with confidence.
As a Leader your main role is to ensure that the Group fulfills
its aims to the best of its abilities. These aims are providing
information and support. You must exhibit the skills and
ability to be able to encourage a safe environment for
discussion and expressing emotion and to keep the discussion
focused. Encourage Members to share their stories and
feelings and ensure the Group benefits all Members.
Key points about the Leader’s responsibilities
maintain a safe, friendly and warm
environment
build Group cohesion
facilitate balanced discussion (lead the
discussion, do not dominate it)
be an active listener, but do not give advice or
provide counselling
maintain confidentiality
encourage everyone to participate in the Group
and to respect the views of others
be honest – if you don’t know the answer, say
so, but commit to trying to find it
find information to answer questions from
meetings
keep a sense of perspective, don’t let the Group
rule your life
be good humoured at all times.
Page 9
Member responsibilities
help Members feel comfortable and get to
know each other
This section is written for the Members of your Support
Group. In the Resources section of this manual on page 39
you will find a similar page that you can send to each of
your Members. This information is included here so that you
can know what you should expect from the members of your
Support Group.
be sure the speaker has finished describing
his/her problem before responding
It has been said that the central idea of self-help is: "You
alone can do it — but you can’t do it alone."
Although only the individual can take the actions to bring
change into his or her life, there are times when it’s too much
to rely solely on personal resources. There is a unique strength
in Group membership which can help a person to mobilize
his or her energies and attain a better sense of well-being.
Do not expect to be given any kind of advice that is medical
in nature. Expect to be given emotional support and
resource information.
listen attentively when another Member is
speaking and avoid side conversations
promote positive comments and new
viewpoints (keeping the discussion upbeat), you
don’t want the discussion to deteriorate into a
gripe session
notice silent people in the Group and
encourage them to contribute, don’t point out
their silence, simply ask them what they think
about the topic being discussed
participate in the discussion - sharing your
problems and offering ideas
Responsibilities of Group Members to each other
rather than engage in advice giving, Members
should assist other Members in solving their own
problems
One of the primary purposes of a Support Group is to
provide an environment where people with common
problems or similar stressful life situations can meet with one
another and help each other cope with their problems in a
supportive, caring, and non-judgmental atmosphere.
recognize when a Member's problem is beyond
the Group's ability to help and be willing to
suggest alternative resources outside the Group
Research indicates that attending Support Groups can be
beneficial and that patients who participate in Support
Groups — in addition to their medical treatments — report
less anxiety and depression and actually live longer than
those who do not attend. It is speculated that having the
social support of others in the Group boosts the immune
system by reducing anxiety and psychological stress.
You can talk to others suffering with the same illness who can
understand what you are going through. It is often a relief
and reassuring to find others with the same illness who
understand what you are going through. Support Group
members encourage each other to take care of themselves.
Members can advise you of where you can access
information.
According to the New Jersey Self-Help Clearinghouse, in a
Support Group, the role of facilitating or leading a Group
discussion is not the sole responsibility of one person, but the
responsibility of the entire Group. Thus, all Members must be
aware of their responsibilities to:
allow other Members to vent negative or angry
feelings; often this must be done before positive
change can happen
assure fellow Members that whatever is said in
the Group stays in the Group
make a commitment to the Group,
contributing whatever talents, skills, resources or
information that is necessary to assure the
Group's success
remember that the group Leader is a
volunteer, he or she spends a great deal of his or
her own time preparing for the meetings,
conducting the meetings and following-up on
questions Members may ask; if you have the
ability to help the leader out with some of these
tasks, by all means offer your assistance
Page 10
Meeting planning
Prepare in advance
A little preparation in advance will go a long way toward
reducing glitches during the meeting and making your
meeting a success.
Prepare an agenda for your meeting and send it to your
Members in advance. This will allow you and your
participants to spend some time thinking about what they
want to talk about. Your agenda should be very general,
remember that you are the Leader of a Group of people
with similar interests, not a manager. Be prepared to let the
Group go where they want to. Don’t be overly formal about
your agenda; this is a Support Group meeting not the House
of Commons. Things like a call to order or adjournment are
not necessary. As time goes on you can adjust your agenda
to suit what works best for your Group and in time the
agenda may even become standard and the same for every
meeting.
Make a list of conversation starters and keep it handy during
your meeting. This may include follow-ups and asking for
progress reports from Members the Group knows are
working on solving a problem.
Conducting a meeting
Your first meeting will be different from the ones that come
after so we will deal with the first meeting first.
The first meeting
Getting organized
The first meeting of your Group will help set the
tone and goals of future meetings. You will want to
achieve a lot at your first meeting, but the most
important thing is to make people feel welcome so
they will want to come back.
To achieve this, it helps to put yourself in the shoes
of the people attending the first meeting. Some
may be a bit nervous or unsure about the meeting,
so it’s important to help them feel at ease.
Format of the first meeting
used virtual meeting technology, so expect technical
issues to arise and be prepared to help Members
understand how it works and get properly
connected.
There are three things that must be accomplished at
the first meeting. The first is obvious; all the
Members must meet you and each other.
The second is to establish a Group Agreement, which
sets out rules for the Leader and Members to follow
during meetings and helps to maintain the purpose
of the Group. A Group Agreement helps Members
to feel ownership of the Group and can help the
Leader to ensure meetings stay on track.
Since this will be a new experience for everyone
involved, there is a sample Group Agreement in
Section 2 of this manual on page 32. Remember,
this is the Group’s agreement, so ask the Group if
there are any points in the sample agreement that
they can’t agree with or others they would like to
see added. Make sure there is general agreement
before anything is deleted or added. Work with the
Group to find wording that everyone can live with,
keep at it and don’t bring issues to a vote. It is
important that everyone agrees.
The only point in the sample group agreement
which is non-negotiable is confidentiality.
The third thing you must accomplish is to review the
Confidentiality Agreement. We discussed
confidentiality in greater detail above and the
Confidentially Agreement that all members must
sign is in Section 2 of this manual on page 33.
Meetings after the first meeting
Agenda Items
1. Welcome
Start the meeting. Shortly after the agreed upon
time, get started. Some Groups open their meetings
with a welcoming statement, a reading of the
Group's purpose and/or meeting guidelines or an
outline of what the agenda is for that evening.
You can run your meeting in whatever way works
best for you and your Members. This is likely to be
the first time most, if not all, of your Members have
Page 11
2. Introductions
Since you are not all in the same room have
everyone announce their presence and give one fact
about themselves. At the first meeting each Member
can introduce him or herself briefly (often just giving
a first name) and may state their reason for coming
to the Group. At subsequent meetings they can
briefly say how they have been doing since the last
meeting.
3. News from your patient organization
Keep your Support Group Members up to date with
news from your patient organization. Choose an
article from the most recent newsletter or an
informational e-mail and summarize it.
4. Past Issues
Don’t let issues go unresolved. Here you can ask if
anyone has comments or updates on issues discussed
at past meetings.
5. Basic Discussion or Another Activity
For a first meeting, Members can take turns
indicating what they would like to see the Group
do, the key topics they would like to see discussed,
any speakers they would like to hear on those issues,
and other major activities or problems that they
would suggest the Group address. Be aware that
often people, who bring up a special issue may be
knowledgeable enough to share with Members
what they know about the topic. You might ask if
they would spend time talking about the topic at a
future meeting.
6. Regular Group Discussion and/or Guest Speaker
This is the part of the meeting that poses special
challenges in an on-line environment. Unless they
have webcams it is difficult for Members to indicate
that they would like to speak without actually
starting to speak. There may be a pause where they
can pipe in, but if there isn’t a pause the less
outgoing will be left out.
The best way to avoid this is to adopt a policy
where only one person speaks, or ‘has the floor,’ at a
time. Some Groups use a variation on a First
Nations custom of passing the “talking stick.” Only
the person in possession of the talking stick is
allowed to speak. Of course since you are not all in
the same room, the stick is passed figuratively.
For discussion, selecting one or more discussion
questions ahead of time is one possibility. Another
idea is to have a book or an article reviewed by a
Member who reports on it, and then the Group
might discuss any questions raised.
If you decide to have a guest speaker at one of your
meetings, consider having time for Group discussion
or questions and answers (make sure your speaker
agrees ahead of time to answer questions). This
gives Members an opportunity to comment on the
speaker’s points and have their questions answered.
7. Goal Setting
Some Groups set aside some time after discussion for
personal goal setting. Each Member who is willing
sets a personal goal that they hope to achieve by
the next meeting. Then at the next meeting, they
can report back on how they did.
8. Planning
If included, this time is set aside for any business the
Group wishes to take up, such as planning or
reporting upon projects or activities like fund raising
or advocacy efforts by the Group or Members. You
could also discuss arrangements for future meetings
such as choosing discussion topics or guest speakers
or making announcements.
9. Wrap-Up
This is an opportunity for the Leader to summarize
the meeting discussion and ask if any Members need
to say anything that was left unsaid from the
meeting. Don’t forget to also remind Members of
the next meeting time and details.
10. Formal Closing
It is helpful when you have some signal or tradition
that the meeting is formally over so Members know
they can log off. If some Members want to stay
longer, by all means let them do so, just make sure
you stay as well to keep informed.
Page 12
Problem solving
friends, health care professionals or other sources like
the Internet.
The activities of daily living can often interfere with selfmanagement. People often encounter barriers they didn’t
expect when they made their plans to solve a particular
problem. But all is not lost; there are some basic steps that
can be used to confront any barrier.
Test the solution(s)
Problem Solving is not the same as giving advice
Asses the results
Advice giving is a common occurrence among Members of
Support Groups. It feels "good" to help someone with advice.
Although most advice is given with good intentions, it can
often be inappropriate. At best, the advice may not work
out; and at worst the advice may aggravate the problem.
Sometimes advice can alienate Members from each other
when one Member takes advice she later decides was “bad”
advice from another Member or when one Member ignores
advice that the giver considered “good” advice. Rather than
engage in advice giving, Members should assist other
Members in solving their own problems.
At the next meeting assess the results. If the problem
is solved completely for some, great! If it isn’t for
others…
Giving advice is one of the easiest things people do. There are
various reasons why we do this, but one of the most common
is that it makes us feel helpful, whether we are really being
helpful or not. It is also makes us feel good to show how
"knowledgeable" we are. Some advice givers do not realize
that there are other ways of helping.
Rather than give advice, it may be wiser to assist someone in
the Group using a seven step problem solving process that
involves exploring options.
Kate Lorig at Stanford University has developed a very
successful program called the Chronic Disease SelfManagement Program for patients. The following steps are
adapted from this program.
Identify the problem
This may be the hardest part. For example, a Group
Member may think their problem is “a lack of will
power,” when actually it is “loneliness.”
Suggest that each Group Member who shares the
problem or a similar problem select one of the ideas
and give it a try for a couple of weeks.
Try another solution
Suggest the ones for whom it didn’t work try
another idea and see how that works.
Start over
If nothing seems to work, take everyone back to
step 1, identifying the problem. You may not have
identified the real problem.
Be honest
If still nothing seems to work be honest with the
Group and explain that some problems may not be
solvable at the present time, but may be solvable
later, and that there are problems that may never
be solved. But make sure everyone understands
that in order to find out if a problem is not solvable,
now or ever, you have to try solving it first.
If you aren’t successful in solving a problem, don’t
despair or get stuck on it. What group of people has
just one problem, anyway? Choose another issue
and work on that one instead. There are many
ways we can improve our daily lives with our rare
disease.
Brainstorm solutions
Ask the Group to come up with a list of things that
might work to overcome the problem. If you are
using a webinar solution with a whiteboard function
use it to keep track of the Group’s suggestions. Some
generic suggestions might be to get help from
Page 13
Things to remember as your Support
Group matures
Maintaining a Support Group requires as much effort as it
does to start one. Some would say more. Support Groups
face the prospect of constantly recreating themselves. It may
be helpful to remember the following.
Remember To Share
The concept of sharing is central to the development of a
successful Support Group. Sharing helps produce
cohesiveness in a Group. It also produces ownership in the
Group. Sharing sets the tone and establishes an atmosphere
of openness and togetherness. Examples of areas where
sharing should be emphasized are:
Sharing responsibilities in the Group is essential.
It is important to deliberately cultivate a sense
of shared responsibility. Members should feel
committed to the Group and encouraged to
contribute. You should communicate that
Member involvement is needed and welcome.
Remind your members, don't assume they
know this.
Discover the talents of Group Members and
give them opportunities to exercise them. A
major strength of a Support Group is that no
one person must have all the skills or shoulder
all the responsibilities.
Share successes and failures. Take time to
acknowledge and praise Members for their
contributions to the Group. Remember, if you
want people to participate, reinforce
participation when it occurs. Avoid blaming if
mistakes are made or opportunities are missed.
Sharing time is a key part of Group support. It is
not uncommon for Groups to dispense with or
minimize the importance of sharing time.
Sometimes Groups begin to rely on outside
sources rather on mutual sharing between
Members. Some have learned the hard way
that they abandoned the very reason their
Group was started - to share problems and
concerns.
Remember To Be Realistic
The Group will not always be "successful" in its activities or
with the people that come into it. Don't traumatize yourself
or others with unnecessary accusations.
Although Support Groups are effective for many, they are
not a cure-all. Avoid idealizing the Group.
Also, be realistic about Members who eventually decide to
leave the Group. It does not mean you have failed.
Characteristically, people move into Groups, get their
questions answered and then they move on. Think of these
Members as graduates, not drop-outs.
Remember that Groups develop in stages
Support Groups are like other groups in that they have
development phases. In Helping You Helps Me: A Guide
Book for Self-Help Groups, Karen Hill describes four stages of
Support Group development. Briefly the four stages are:
Forming
This begins when people try to find others who share the
problems and concerns. Meetings are characterized by
no set behavioral patterns. Discussions are not too open.
Norming
Meeting routines begin to develop. Discussion becomes
more open. Friendships begin to develop. Members
begin to agree about the purpose of the Group and
what activities are needed to carry it out.
Expectations about appropriate Group behaviour
develop.
Storming
Some might call this the teenage phase of a group.
Disagreements about purpose, Group activities, and
expectations appear. It is a period of questioning. Do not
despair; it is a normal and healthy sign.
Performing
This represents the stage when the Group finally gets
down to business. Roles for Members are set and usually
happen without anyone having to orchestrate it.
Expectations are now clear. The purpose and activities of
the Group have been accepted.
Page 14
Greater trust has developed and discussions become
more open.
Remember To Assess and Reassess
Given the ongoing developmental nature of Support Groups
and the fact that some problems will normally arise, Groups
need to become intentional in evaluating their goals and
practices.
A return to earlier stages may result. This may cause the
Group discomfort, but it should be remembered that this is
also part of the Group's evolution.
These stages may also be seen when new persons come into a
Group. Groups might set aside specific times to re-evaluate
by using feedback and Member satisfaction.
Remember what Support Groups do best
Remember support is your area of expertise. Research shows
that one of the most consistent drawing factors of Groups is
the emotional support and sense of community they provide.
Whatever else the Group does, it must never stop being a
source of mutual support for its members. People facing
problems will be searching for a kind word, a sympathetic
ear, or an understanding nod, and that is something Support
Groups do and do very well.
Remember to re-evaluate periodically
Re-evaluating how the Group is working periodically is a
good idea. Be sure that the programs, meeting time and
frequency continue to match the needs of Group Members.
Here are some yardsticks to measure what your Group has
accomplished:
do Members give and receive support on a regular
basis?
do longtime Members help out newcomers?
are Members leaving the Group?
Accept that your Group needs to be flexible and adaptable
to meet its Members’ changing needs. Build review and
change into the way you run it as well as making special
efforts to check on what you’re doing. Be proud of your
achievements!
Page 15
Dealing with challenging situations
(and yes, challenging people)
Much as we would like to avoid this subject, the reality is
that as a Support group Leader you will face challenges. This
section deals with issues and problems that may come up in
your Group and suggestions on how to deal with them. You
won’t face all of them and they won’t all happen all at once,
but over time there can be difficulties dealing with a number
of issues, such as:
disease progression and death
different personalities, communication styles
and needs
practical issues, such as finding guest speakers
fluctuating membership and meeting
attendance
dealing with issues caused by prior relationships
difficult Members
the death of a Member
These issues can be stressful for both Group Leaders and
Members and can disrupt meetings.
But it’s not all bad news. For many Group Leaders, the
rewards outweigh the problems.
Support Group Leaders say the many rewards include:
seeing the change in people – from the initial
shock and distress of diagnosis to becoming
empowered and supported and feeling more in
control of their lives
learning more about themselves and new skills
through the leadership role
being involved in Members’ lives and hearing
their stories
Dealing with disease progression
Your Support Group is likely to have a mix of people at
various stages of their illness. There is a good chance you will
have people who are doing well or newly diagnosed and a
Member or Members whose disease is advanced.
The needs of a person who has just been diagnosed are often
very different from someone whose disease is advanced.
People with advanced disease sometimes feel unwelcome at
meetings because they believe that others don’t want to face
the possibility of death and they are conscious of making
others uncomfortable.
People who have just been diagnosed may find it difficult to
deal with the possibility of disability or death and simply
want basic information and coping skills. It can be
particularly challenging in a Group where most people are
relatively well and one Member’s is very ill.
The first way to deal with this conflict is to acknowledge that
people in the Group have different needs and that all needs
are valid.
Do not suggest people with advanced disease join or form a
different Group. People whose disease is advanced have
been there and done that, they have a wealth of
information to share.
A range of speakers on topics from treatment to palliative
care will help satisfy everyone’s needs.
Let people know they can talk to you after the meeting, if
you think people have been reluctant to raise a topic during
the meeting. If you are worried about a person’s feelings,
talk with them after the meeting
Attendance and fluctuating numbers
Ups and downs in attendance are normal. Your Group
Members have busy lives and health issues as well. If
someone doesn’t attend a scheduled meeting drop them an
e-mail the next day letting them know you missed them, not
that they missed the meeting, they already know that, and
summarize what was missed. Assume they had a good
reason for not attending, don’t ask for an explanation.
The reality is that Groups often go through cycles that can
lead to unwarranted concerns. When meeting attendance is
very high, you may worry that not everyone is getting
enough support; when membership is low, you may worry
whether the Group can carry on.
If numbers are low, it could be a sign of general unhappiness
with the Group. It may also mean that people can’t attend
because of the timing of meetings, or that they no longer
need the Support Group.
Page 16
If few people are attending, look for the source of the
problem: call a few Members. A few format changes may
bring people back to meetings.
If numbers stay low, you may accept that low attendance is
part of the natural cycle of your Group and decide to ride it
out.
If you find that most people no longer need the Support
Group, you know the Group has done its job for the current
Group of Members. Again, don’t think of the missing
members as drop-outs, think of them as graduates!
You can try to recruit new people or merge your Group with
another Group that is experiencing similar challenges.
Dealing with difficult people
Some of the following is adapted from an article entitled,
Leadership Skills, Working With Difficult People, written by
Dick Mooney in the Communicator - Volume 3 No. 3 - June
2002
Leading a Support Group for people with a rare disease or a
Support Group for caregivers to someone with a rare disease
will be mostly a rewarding experience. Many Leaders will
never run into the situations outlined below. Like the person
who carries an umbrella on sunny days believing that being
well prepared for something reduces the chances of it
happening, here are some difficult situations you could
encounter and suggestions on how to deal with them.
If you have a person in your Group who you feel is difficult to
deal with, keep in mind that he or she did not join the Group
simply to make you miserable. Usually, the difficult person is
someone who is working from the negative side of their
personality, rather than a conscious desire to be difficult. The
person is often unaware of his or her ‘difficultness’ or how
they affect others. They also do not realize how harmful their
actions are to their own relationships.
you are the only one who controls your own
behaviour. So the trick is to behave toward them in
such a way that will encourage them to modify
their behaviour. Understanding this will help you to
realize that you will not always be successful and
that you will have to deal with your own frustration
in those cases.
Conflict
One way to look at this is that working successfully
with difficult people is essentially an exercise in
conflict management. The behaviours difficult
people exhibit may be in conflict with the
behaviours you would like them to exhibit, or think
they should exhibit. They may be in conflict with the
smooth conduct of your meetings, and they may be
in conflict with your ideas and the actions you feel
you must take as Leader to manage your Group's
affairs effectively. If these conflicts didn't exist, you
would not label these people "difficult."
Power
Working successfully with difficult people is also an
exercise in exercising your leadership power. As
Leader, you are the one who has legitimate power.
You are responsible for the effective management
of the Group and you have the authority, or
"power," to do all those things necessary to fulfill
your responsibility.
Control
You exercise your power in many, often subtle,
ways. You lead Group meetings and you take the
lead in planning and implementing the changes
and improvements necessary to assure that the
Group will survive and prosper. The behaviours of
difficult people could be seen as attempts to wrest
some of your power away from you. Even if that
may not be their conscious motive, it is the effect.
When difficult people ramble on and on or change
the subject during Group discussions, they are seizing
power to lead the meeting that has not been
legitimately vested in them. When Members
become argumentative or obstinate, they may be
trying to challenge your power as Leader.
The most important thing you need to understand is
that you have no control over difficult people. They
are the only ones who control their behaviour and
Another dimension to the power issue is that rankand file Group Members expect you to exercise your
power as Leader to deal effectively with people
There is value to be gained when we attempt to understand
another’s viewpoint. By changing our attitude toward them
and changing our viewpoint about what makes them
"wrong" and us “right” we can improve our own ability to
work with people.
Page 17
whose behaviour is disrupting and spoiling their
enjoyment of meetings. If you ignore these
situations, you may do so at the cost of the respect
your Members have for you as their Leader.
Negotiation
Negotiation is a process of reconciling differences
and conflicts between two or more parties. In the
work world, the differences often concern wages;
one party wanting more, and one party wanting to
give less. In the Support Group Leader world, the
differences often involve organizational plans,
policies, procedures, or control issues. As Leader,
there are conditions you think should exist to assure
that the Group's business and meetings will run
smoothly. You see your position as "right," but
others, the "difficult" ones, probably are equally
enthusiastic about the rightness of their positions.
The key to reconciling these differences successfully is
to find some middle ground where both parties can
feel "right enough," often called a win-win situation.
Ego
"Ego involvement" always exists and should be
recognized for what it is. If you want something that
the Group doesn't truly need, you are ego involved.
If you see interruptions or side conversations at
meetings as problems that adversely affect you
rather than the Group, you are ego involved. It is
impossible not to be ego involved to some extent.
But it is possible — essential, in fact — not to allow
that involvement to drive your behaviour and blind
you to solutions that are best for the Group.
Strategies
Due to the magnitude and complexity of this problem, it's
completely impossible for any manual, book, or workshop to
provide "cookie cutter" approaches that will work with all
difficult people in all situations. But there are strategies that
can lead you.
Use the right sized tool
When people interrupt the meeting with endless
comments, side discussions, off-subject statements, or
the like, it's best to try the most non-threatening
responses first, only escalating to more positive
intervention if the gentle approach isn't effective.
For example, “Let’s all listen to what Sally has to
say.” Remember, if you always jump in with your
sharpest tool first you may begin to look like a bully.
Smile
Even the sharpest comment you can make to
someone who is seriously disrupting a meeting can
be softened with a smile (assuming your webcam is
on). Remember, your goal is to encourage a change
in their behaviour, not chew them out.
Be Assertive
The classic "assertive" technique involves couching
messages in "I" terms rather than "you" terms, and in
making clear requests. Saying, "You are disrupting
the meeting" can be seen as an attack and invites
defense and argument. Saying, "I feel like my
opinion doesn’t matter when you do that" labels the
problem as yours and is hard for the other person to
take offense or argue with. If the "I" message defines
the problem, the clear request tells what you want
the other person to do about it. Statements such as,
"I would like you to wait for your turn to speak" or
"Next time, I would like you to respect the views of
the others by not interrupting them" leave no doubt
about what you are requesting the other person to
do.
Dealing with the aggressor
Aggressive people seek out wimps to increase their chances
of getting their way. Therefore, ignoring or retreating from
these people is not a good idea. The "peace at any cost"
principle usually has enormous hidden, costs. It is best to
confront the issue involved head on. Be direct. Don't beat
around the bush. Stand up for yourself. But being aggressive
in return never works. People often say that you should fight
fire with fire, but if you have ever watched professional
firefighters at work you will know that they fight fire with
water, not more fire. Use the assertive technique instead.
Dealing with the "Know It All"
You have probably encountered those who know everything
and don't hesitate to tell everyone else about it. Some of
these characters really do know a lot in which case you
might use them as resources or share the spotlight with them
from time to time. Then there are the characters who only
think they know a lot but who are usually wrong in which
Page 18
case you can tell them you appreciate their opinion then
offer the true facts.
And then there are those who dominate the discussion in
which case you can make a clear request for them to allow
others to have their say. Whatever you do, avoid ego
involvement and arguing your point. You will only waste a
lot of the Group's time and probably won't change their
opinion that they are still "right."
If what they have said is advice to others that is just plain
wrong, correct the information and tell people where they
can find the right information. If the advice they gave is new
to you, do your homework and at the next meeting correct
the information telling everyone where they can find the
right information. Don’t single out or even mention the name
of the person who gave the bad advice, they, and everyone
else, will know.
Avoid labeling people
When someone interrupts frequently and you label
them as "an interrupter," even if only in your mind,
you will always look for that behaviour from them
and each time you see it your opinion of them will
be reinforced. As a result, these kinds of labels tend
to be self-fulfilling. Worse, you probably won't notice
when they don't interrupt.
Reinforce desired behaviour
When trying to motivate people to behave
correctly, it's a proven fact that criticizing undesired
behaviour isn't nearly as effective as praising desired
behaviour. We all prefer to be praised than singled
out for bad behaviour, but most people would
rather be singled out for bad behaviour than be
ignored. Catch your Members doing something right
and praise them for it. Soon, they will be fighting to
do only right things. If there is someone in your
Group who interrupts frequently, contact them after
a meeting when they have not interrupted and say
something reinforcing like, "I appreciate that you
gave me more time to explain that issue tonight
before commenting. That certainly made it easier
for me."
Humour
Sometimes humour, provided that it isn't at
someone else’s expense, is an effective way to deal
with difficult behaviours. For example, if you have a
Member who makes a habit of criticising you, try
saying something like, "You can continue talking to
me that way but I'm still going to be nice to you.”
Then smile widely into your webcam. People who
espouse extreme opinions endlessly might be told,
"Don’t hold back, tell us how you really feel.” Then
smile into your webcam. Humour directed at
oneself is seldom dangerous, as in "I don't agree with
you but, then, what do I know?" Then smile into
your webcam. Use humour carefully. It's easy for
humour to masquerade as sarcasm or to diminish
the other person. And never forget to smile. It helps
to identify your intent to be humorous.
Be flexible
If the goal of the meeting is to talk about
pulmonary rehab but everyone seems to want to
discuss a new experimental treatment, sometimes
it's wiser to allow the agenda switch than label
everyone as "difficult" and insist on pulling them
back to the "right" subject.
Continue discussions later
Rather than trying to squelch persistent off-thesubject comments, especially when nothing you say
seems to work, you can always say, "I want to
understand your viewpoint better, so let's get
together after the meeting (by phone or e-mail)
and talk about it then."
Show respect
The essential common thread in all strategies for
dealing with difficult people must be to always be
respectful. You can't expect others to respect you if
you are disrespectful to them. They may be wrong,
they may be problems, they may be disruptive, but
they are still human beings and participants in your
Group. Responses that insult or diminish them will
seldom be effective and will ultimately reflect badly
on you with the other members of your Group.
Be patient
Finally, have patience and be of good cheer.
Dealing successfully with difficult people is really
hard. If at first you don't succeed, keep trying. Your
Members will understand what you're attempting
Page 19
to do and will admire you for it. Remember that the
best home-run hitters in baseball are also the ones
who strike out the most - but they stay in the game.
They keep trying.
before you start to talk. Remember, you are at
a non-verbal communication disadvantage, so
your verbal communication must be crystal
clear and extra convincing.
The difficult people in your life will not go away.
You will win some and lose some. But if you always
keep in mind that difficult people are difficult
because they choose to be difficult, that whatever
you do, you cannot control their choices - you can
only influence them, and that if you don't throw in
the towel but keep trying, you will at least be able
to sleep well knowing that you've done the best you
could.
Address any hostility, even if it is minor. Saying
things like, “I know you feel strongly about this
and I appreciate your passion” can help keep
things focused on the ideas and help diffuse
hostility between individuals.
Debates
None of this is to suggest that there will not be debates or
disagreements in a Support Group meeting. However, make
every effort to debate politely.
Debating, or as some may call it, arguing, may be good for
your meetings, but you can’t argue the same way over a
video conference as you can in person without appearing to
be rude. You should still argue. The most important part of a
meeting is working through disagreements and meshing
ideas. Still, you have to be extra careful to be polite since you
are at a disadvantage when it comes to non-verbal
communication. Your body language and posture aren’t
going to convey as well through the video camera as they do
in person, so the way you say things becomes much more
important. Here are some ways to argue politely:
State the other person’s position with empathy.
This helps show that you understand what they
were saying. Adding phrases like “I see why you
think this is important” and “I can see the value
in this from a ‘blank’ perspective.” Showing you
understand someone’s position and the
importance of their position is a very valuable
way of getting them to understand your point
of view because it keeps them from becoming
defensive.
Stay focused on the issue — not the people. Be
very careful not to do anything that would look
like a personal attack.
Wait to state your position. Don’t start talking
with a half-formed idea. It is a good idea to
write a few words outlining your argument
If you know a discussion is likely to become
contentious, plan ahead. If you know Bill may
get angry about your idea, but Mary supports
it, talk to Mary ahead of time. Perhaps you can
both present parts of your position so Bill isn’t
focused on one person. Maybe Mary can
present the idea because she has a better
relationship with Bill. But don’t gang-up on Bill.
Follow up with people on the phone. A quick
telephone call to a few people after the
meeting can be valuable to help make sure
there are no hard feelings. This can be similar to
some of the interactions that occur after an inperson meeting.
Changing priorities
There can be problems when some Members think the Group
should move in a different direction. For example, some
Members may want to focus more on advocacy or fund
raising and less on information and support.
One option is to form a subcommittee that works on
advocacy or whatever the competing priority may be,
leaving the main Support Group to focus on information and
support. They can further their interest in the competing
priority by contacting your patient organization.
When a Group Member dies
It is complex, difficult and very upsetting when a Member
dies. People in Support Groups become incredibly close to
one another, and the loss of a Member is often deeply felt.
The death of a Member is one of the hardest issues for Group
Leaders, who have to acknowledge the loss while minimizing
the impact on the rest of the Group — all the while dealing
with their own grief.
Page 20
If you have a bereavement counsellor as a guest speaker
during the year (not right after someone has died), it shows
that death is an important issue that needs to be discussed.
The session with the bereavement counsellor will also allow
the Group to talk openly about how it wants to deal with
the death of a Member should one occur.
It is best to deal openly with a Member’s death. What you do
after a Member dies is highly symbolic within the Group.
disease. It’s vital that you look after yourself and share the
load.
It is best to have a back-up Leader, to debrief and support
each other and the Group.
Share the tasks as widely as you can, identify potential
future Leaders.
Several signs may indicate burnout:
It is best to inform Members at the time of the death by email or telephone so no one is surprised at the next meeting
and so that people can send a card or go to the funeral or
memorial service if possible.
feeling emotionally, physically and mentally
tired
At the first meeting after a Member has died, announce his
or her death and spend a moment or two remembering
what made that person special. People may find it easier to
talk more openly if you acknowledge the difficulty of
dealing with a death in a Group where others may some day
face the same fate.
no satisfaction in completing tasks
One question to ask Group Members is not only what the
person meant to them but what they felt they gave to the
person who died. They might not want to share this, but it’s a
good thought for them to take away.
There are many ways to remember people and their
contribution to the Group. Group funds, if any, can be used
to send flowers to the Member’s family. The Leader should
write a note and also ask if anyone else in the Group would
like to include their thoughts or wishes.
lack of interest in Group Members’ stories
negative attitudes to tasks
questioning whether work is valued
sense of failure, low self-esteem
frustration, and feelings of helplessness and
hopelessness
Managing burnout
recognise the symptoms of burnout listed above
get support from other Support Group Leaders;
talk about your feelings
reduce your workload in the Group
take a holiday
Taking care of yourself can be difficult, but
necessary
use relaxation/meditation
Everyone who leads a support group is susceptible to
burnout. Burnout can be disabling but can be managed
easily if identified early. Leading a Support Group can be a
big responsibility and takes a lot of time and energy. It is
harder if people won’t share leadership of the Group and the
work falls to the same people constantly. No single person
should be left to do it on their own, regardless of their level of
commitment.
talk to staff at your patient organization
Being a support person can be draining, so it’s important to
have your own support systems. If your patient organization
has a number of Support Groups suggest a virtual meeting
of Support Group Leaders every month. Make it a point to
attend. It can be hard to support others while dealing with
issues in your own life, particularly your feelings about your
use positive self-talk
lower your expectations of yourself and Group
Members
let yourself enjoy life
use your belief system, religion or philosophy of
life for support
take time for rest, recreation and exercise
Page 21
Medical Advice
You should make it very clear to your Support Group
Members that any information pertaining to their health
should be reviewed with their physician. Nothing provided
by the Support Group Leader or other Group Members
should be construed as a substitute for professional advice or
treatment by a health care professional.
Page 22
Finding topics and guest speakers
You do not need a guest speaker for every meeting. After
all, your main goal is to provide support to the Members of
your Group and the real experts are those very Members.
Still, a guest speaker can share important information and
be a welcome treat.
Death and Dying—Grief counselor (as
mentioned above, do not have a guest
speaker on this topic in response to the
death of a support Group Member. If this is
something you want to do, then do it in the
normal course of running your Support
Group).
You will always find that it is easier to get a guest speaker to
talk to a Group about something the speaker is passionate
about than to decide ahead of time what you want
someone to speak about and then try to find a willing
speaker to prepare a talk on that subject.
Although it is tempting to try to find someone to speak
specifically about your rare disease, the reality of rare
diseases is that because they are rare, there aren’t that many
experts to choose from. When looking for a guest speaker it is
also important to remember that people who have rare
diseases do an awful lot of research on their own. In many
cases doing their own research was the only option for
learning more about their disease. Much of what some
doctors know about a particular rare disease they learned
from a patient who had it. So don’t overlook the Members of
your Group, many of them may be real experts on a
particular aspect of their disease.
With “experts” don’t limit yourself to experts on your disease.
For example, a counsellor who has experience counselling
people with one chronic disease will have insights into living
with any chronic disease. The same goes for nutritionists and
many other health professionals.
Guest Speaker Suggestions
Disability Pension – Government
spokesperson
Diet and Nutrition - Nutritionist
Your patient organization’s programs &
services – an organization spokesperson
Organ Transplants - a transplanted patient
Estate Planning – Financial
Planner/Lawyer
Fitness - Personal Trainer
Caregiving Challenges & Opportunities –
Caregiver
Page 23
Fund Raising
Fundraising Guidelines for Support Group Leaders
While it is a good idea for Support Groups to engage in
fundraising activities on a local level, the fact that Support
Group Members are spread out geographically means that
fund raising may be difficult.
Groups are free to raise funds for their patient organization
to support the programs and services offered or for the
Group itself. Examples of things that Groups might fund raise
for are webcams for Members or to have a fund available to
help Group Members having a difficult time with some
aspect of their lives or care.
However, it is important to remember that there are laws
governing fund raising in Canada.
If a Support Group decides to raise funds for their patient
organization the process is relatively simple if your patient
organization is a charity registered with the Canada Customs
and Revenue Agency (CCRA), formerly known as Revenue
Canada.
When a person or organization donates more than $10.00 to
a registered charity an “official” tax receipt is issued and they
can claim it as a deduction at tax time.
However, Support Groups are not registered charities, so any
money donated directly to a Support Group for use by them
is not tax deductible for the person donating the money.
Before your Group embarks on any fund raising activities or
if you just have questions regarding fund raising ideas, call
your patient organization.
Page 24
Building a Regional Resource Guide
The following is adapted from an article by the late Ed
Brailey in the Alpha-1 Association Support Group Leader
Training Manual.
These are by no means all the resources you may need, but
as you build your guide it will become apparent what other
resources you may wish to include. Share your information
with other Support Group Leaders and they will share with
you.
As your Support Group grows and matures you will
undoubtedly find yourself looking up the same information
time and time again. Having a resource guide is a way to
save time and allow you to quickly find information when
someone in your Support Group or a newly diagnosed
patient needs it. It is important to know some patients need
different information than others, so make it as complete as
possible. It is usually an ongoing project, but it will be time
well spent and you will be glad you have it when the need
arises.
There is no need to reproduce information that is already
available on your patient organization’s web site, your
resource guide is for more specific local information about
treatment centres and other local resources your Members
may need.
You will find out most of this information from Members of
your Group. There is no need to undertake a big research
project, as Group Members share information about
resources in their community, write it down, get as much
detail as you can as soon as it is mentioned. This is the
information you will put in your resource guide so that the
next time someone asks, you will have it handy.
You can decide what other information to put in your
resource guide. It's good to get others in your Group
involved; this is also a great way for everyone to feel more
involved in the Group. Some other suggestions for things to
keep track of are local doctors you know effectively treat
your disease. This is where input from other Members is
important. Local clinics, pharmacies, hospital and emergency
numbers are good to include. It is also good to list the contact
person someone may have spoken to.
A lot of information you can get from your local United Way.
Most have a resource guide that lists many organizations,
mostly non-profit’s that offer assistance in your area. Social
workers at a hospital can help with contacts on medical and
pharmacy assistance. Local foundations in your area may
have services you may use; they are listed in your local phone
book in the yellow pages under foundations.
Page 25
Keeping a Family Health History
Create a summary of health facts
For people diagnosed with a rare genetic disease a Family
Health History is the best gift you can give to your children
and other family members.
Record the names of affected relatives and their relationship
to you. Include date of birth, place of birth and areas they
have lived in. Ask questions about lifestyle like whether they
were smokers, heavy drinkers, active in sports or recreational
activities. Write down whatever you can learn about them,
you may not realize for some time that something was
important.
The easiest way for a doctor to tell the difference between a
rare genetic disease and a more common but similar disease
is to know the patient’s family health history.
The following is adapted from the US Alpha-1 Association
Support Group Leader Training Manual and Resource Guide.
The history of your family is a unique combination of traits
passed down from one generation to the next. Some of the
shared family traits may predict health conditions which may
occur in the future. You have heard the saying, "It runs in the
family". It is very helpful, to gather historical data of what
"ran in the family" before you.
Family health history is especially important to individuals
with rare genetic conditions. Most diseases or conditions have
some genetic component.
Compiling your own Family Health History is a useful
exercise and will help you in leading Members of your
Support Group through the process of compiling their own.
Here are some ideas on how to develop a family health
history.
Conversations with your family
Talk to your parents first, then seek out grandparents, aunts,
and uncles. Start gathering stories from relatives at family
events; ask about health issues. Write down facts and
organize them with dates so you can begin a chronology of
health history.
Some relatives may be reached by phone, e-mail or mail.
Family members may not clearly identify disease or illnesses;
for instance, "I don't know what was wrong with him, but I
do remember he always had a cough". Ask questions which
might help to clarify health issues.
Include occupation, leisure activities, diet, exercise, habits.
Talk about major illnesses, surgeries, and health conditions.
Ask about all deceased relatives age at death and cause of
death.
Create your family portrait
Check to see if any family member has an existing family
tree, chart or listing of family members; this information may
be in baby books, photo albums or a family bible.
Start with your immediate family and go back a generation
at a time. Include geographic origins, date and place of
birth, age and cause of death
Keep a journal or scrapbook
In your scrapbook record family histories, including photos of
family members. Record immediate family immunizations,
infections, illnesses, surgeries and the like.
Keep track of medications prescribed for ailing family
members and record changes in family member's activities of
daily living in the case of illness.
Share your Family Health History with other family
members, it could make the difference between them
getting properly diagnosed and treated or suffering
needlessly.
Keeping a family health history is vital to each family
member. Your doctor will certainly ask about family illnesses
and conditions. Be prepared with a clear family portrait.
Your diligence will help your family for generations to come.
Keep in mind that some relatives may have been
misdiagnosed or even self-diagnosed incorrectly so don’t
ignore conditions that may not sound like yours.
Page 26
Virtual meeting technologies and
troubleshooting
Virtual meetings
What are they?
On-line virtual meetings are real-time interactions
that take place over the Internet using features such
as audio and video, chat tools, and application
sharing. Participants in virtual meetings use an
application, or program, to conduct meetings that
are similar to videoconferences making them ideal
for Support Groups. Although much of the
technology that supports virtual meeting tools is not
new, the underlying software and infrastructure
have matured, allowing Support Groups to benefit
from real-time interaction between people who are
scattered geographically.
Virtual meetings offer a way to engage people with
rare diseases in fully interactive, on-line support
experiences.
How do they work?
On-line virtual meeting applications use common
browser plug-ins and connect through a hosting
service. Most applications are platformindependent, meaning users on PCs and Macs can
share identical functionality. At appointed times,
participants log on to a website or application like
Skype® to join Group meetings. The application
window includes a pane that lists current
participants, a chat pane for written interaction, an
audio/video pane, and a content window. The
audio/video pane might only show the Support
Group Leader, or, ideally it can include the other
Group Members if they have webcams. Many
applications use voice over Internet protocol (VoIP)
for the audio segment, eliminating the need for a
separate phone connection. The content pane can
show applications from the Leader’s computer
desktop, which can include a website, slides, text
files, multimedia software or other information.
Group Members can be seen and heard in real time
by other participants, who can communicate with
one another and the Leader through the chat pane,
the audio and video, or tools such as a shared
whiteboard.
Although strongly discouraged for Support Group
meetings, sessions can be recorded and archived for
later access. Because of the requirements for
confidentiality, Support Group meetings should
never be recorded.
Why are on-line virtual meetings significant?
On-line virtual meetings combine several distinct
technologies into a single application ideally suited
to Support Group meetings in real time and allow
Members to interact as if they were in the same
room providing social connections and creating a
sense of community that can be difficult to establish
otherwise.
What are the downsides of on-line virtual meetings?
While technical problems are always potentially
troublesome, in the case of virtual meetings they
can be debilitating. Issues such as sound and video
quality can be affected by network traffic, improper
setup, and other technical parameters. The quality
of the meeting will only be as good as the slowest
computer and internet connection in the Group.
Support Group Leaders using virtual meeting
environments have reduced control over the “room”
of participants. Even though some tools allow users
to electronically indicate nonverbal gestures, such as
raising a hand to ask a question or make a
comment, virtual meetings are approximations of a
shared physical space. As such, participation mixes
face-to-face and on-line practices.
The how tos of on-line support Group meetings
Now comes the new and fun part. Meeting with people over
the Internet goes by a number of different names: webinars,
web meetings, virtual meetings, meeting in your slippers and
chat are just a few. In this manual we use the terms virtual
meeting and on-line meeting. It’s a fairly new
communications medium, and it's not quite like any other. It
may share characteristics with other media, such as
teleconferencing and live multimedia presentations, but
ultimately it requires specific techniques for maximum
Page 27
effectiveness. This section of the manual contains tips for
creating more successful virtual meetings.
microphone on your headset is positioned in front of
your mouth, not under your chin.
Let's look at some basic information about communicating.
When we communicate, 10% of the meaning is contained in
the words we choose; 20% is contained in the style of
delivery; 70% is contained in non-verbal cues or body
language. That's why videoconferencing can be so much
more effective than a voice-only conference call.
A headset will also minimize the background noise
in your home from being broadcast to the whole
group.
When we engage in a face-to-face conversation, all parties
walk away with an 80% level of common understanding
and agreement of what was discussed; in a voice-only
meeting, this level drops to 40%; when the meeting is held
virtually, the level rises back up to 60%.
The natural assumption, then, is that virtual meetings are
the next best thing to being there. That is true for the way
most people engage in virtual meetings. However, when
used properly, virtual meetings can actually be better than
being there in person. People just need to know how to
increase their effectiveness in a virtual meeting.
Proper camera placement is critical
Your webcam should be attached to your computer
screen or built in. That way, when you're looking at
your computer you automatically maintain good
eye contact with the people at the other end of
your Internet connection. And since your computer
screen is where you will see the faces of the other
participants, it just makes sense.
If the relative heights of your furniture allows, try to
arrange things so that the camera is level with your
face. Often people tilt their screens and therefore
their webcams upward, showing other participants
a nice view of their ceilings and the inner recesses of
their nose! And zoom your camera so that the
image of yourself that you are sending is mostly you,
not mostly the room you are sitting in.
Hear and be heard
You will hear best, and be heard best if you use a
headset rather than speakers and a desktop
microphone. A headset will yield better sound
quality than speakers and a microphone that might
be built into a laptop. The same is true for your
Support Group Members. Make sure the
And speaking of background noise, don’t run fans or
noisy heaters near where you are sitting and close
the door if there is one to minimize the sounds the
rest of your family is entitled to make as they live
their lives. You may also annoy your family less in
the bargain.
Practice, practice, practice
Be familiar with the equipment you'll be using,
including the placement and operation of the
camera, microphone and computer controls.
Use your voice and your body as tools
Vary the pitch and tone of your voice to add
emphasis and meaning. Use appropriate facial
expressions and gestures. Remember, the webcam
doesn't like rapid gestures, so hold the gesture a
little longer than you may be used to. No rocking or
swaying in your chair, these gestures get amplified
over video and become very annoying to others in a
short amount of time.
Be careful how you dress
You have probably been told that one of the
advantages of meeting from your home is that you
don’t have to get dressed up. That is true, to a
point, and that point is just north of your waist.
Slippers and pyjamas bottoms are fine but your
webcam is going show the top part of your body.
Avoid busy patterns and narrow stripes, on video
they seem to move and it looks like your clothes are
alive!
Maintain the face-to-face connection
If you use other sources of visual information like a
PowerPoint slide show, a whiteboard or video,
remember to switch back to your face as often as
possible. Maintaining the face-to-face connection is
critical for effective communication.
Page 28
Lighten up
The space used for your virtual meeting should be lit
with indirect light sources. Lighting only from above
will create shadows on your face and make you
look like a raccoon.
Keep It Simple
It's easy to become enamoured with all the features
that today's virtual meeting systems offer. Avoid the
temptation to try all the bells and whistles when
you're just starting out. Master the basics first. Once
you and your Support Group Members are
comfortable with the basics, you can gradually
introduce more sophisticated features, such as
whiteboarding.
chat. Be careful in making your choice, many are designed
for only two people to video chat with each other.
Below we list some of the applications we have tested.
Alpha-1 Canada elected to use Skype®.
VSee®
VSee can accommodate meetings with up to 15
people on a call.
VSee claims to use extremely low bandwidth (how
much of your internet connection it uses), which
would be a benefit if your internet connection is on
the slow side or your group is large. They also say it
works well over 3G/EVDO cellular air cards.
Virtual meetings of 60 to 90 minutes are most
effective.
According to their web site, “VSee is free for
personal, non-commercial use,” but we were unable
to get them to confirm if all group members signed
up for the free option that they could chat in a
group and not just one on one.
Get Off to a Quick Start
ooVoo®
Spend no more than two minutes introducing the
meeting and covering the features of the virtual
meeting system (your first meeting will be an
exception to this rule). Then get started. This will
give the virtual meeting a fast-paced feel that will
keep participants tuned in rather than playing
computer games.
If you do your own research, you will read often
about ooVoo. Although a very nice application and
free, ooVoo can only accommodate six people in a
meeting. If your group(s) are going to be small
enough, ooVoo would be a good choice.
Keep It Short
"Pre-Flight" Everyone
Pre-flight checks are usually web pages provided by
the event service provider that check the
participant's computer to ensure it is capable of
participating in the program. All participants should
complete one. Have everyone announce their
presence or take a roll call first, that way you can
tell whether someone has accidentally muted their
microphone.
Video Chat Applications
The application type you will need for On-line Support
Group meetings is called “video chat.” There are a number of
free or low cost video chat applications available on the
World Wide Web. Your main concern will be ensuring that
you select one that allows enough participants to join your
Skype
At the time we were writing this manual Skype was
in the midst of testing then launching a group video
chat function. In the testing phase it was free to
people who already used Skype, even the free
version which only allows you to chat with other
Skype users. Now at least one of the people on the
video call needs to be a paid member at
$8.99/month.
Making audio and video calls between computers
over Skype is now so common that the company's
name has become a verb. People ask others to
"Skype me" or say they are "Skyping."
Since Skype is so popular in the voice only and oneon-one video calling fields it is logical to assume that
their new group video chat function will also
become a standard. Skype is also the biggest player
in the market when it comes to calling by
individuals.
Page 29
The only catch with Skype is that it is not altogether
free, but it is very cheap. As we said, at present you
can get a package from Skype for $8.99 per month
or $4.99 per day. Only the Support Group Leader
needs a paid package, the Support Group Members
only need the free Skype to Skype calling plan.
If you have some group members who are old
hands at Skype, make sure you ask them to check
and see whether they have the latest version of
Skype on their computers.
Skype’s group calling, which can handle between
three and 10 people, is a feature of the latest
Windows version of Skype, and of the latest beta
version for the Mac. The Windows version has a few
more features, but both versions work. You can set
up your group in advance in your Skype contact list
and call all members with one click, or you can add
people on the fly.
Each caller appears in his or her own box on a dark
screen and you could optionally see yourself in a
smaller box. The box containing whoever is speaking
is automatically outlined in blue.
Skype group video calling provides very good
quality, with almost no fuzziness, freezing or syncing
issues, assuming of course that your computer and
internet connection meet the minimum bandwidth
and processor recommendations for using it.
The recommendations from Skype are a high-speed
broadband connection of 4 Mbps (megabytes per
second) down and 512 kpbs (kilobytes per second)
up and a computer with a Core 2 Duo 1.8 GHz
(gigahertz) processor. The minimum you'll need is a
high-speed broadband connection of 512 kbps down
and 128 kbps up and a computer with a 1 GHz
processor.
There are many free speed tests available on the
internet. These two will tell you how fast your
connection really is and are two of the ones that
won’t try to sell you anything: speedtest.net/ and
bandwidthplace.com/
If you use a wireless network for your internet you
can increase the speed and quality of your
connection by using an Ethernet cable instead. Plug
one end into the Ethernet port on your computer
and the other directly into one of the LAN ports on
your router.
Perhaps it goes without saying but you will also
need a webcam and headset.
Page 30
Section 2: On-line Support Group Leader Tools
Page 31
Sample Group Agreement
What we share in the Group remains confidential while we are Members of the Group and in the future when we may no
longer be a Member. “What is said in the Group stays in the Group.”
We encourage “I” and “me” statements, so that everyone speaks in the first person. “When that happens I feel
uncomfortable.” Not “You make me feel uncomfortable.”
It is important that we actively listen when someone is talking and avoid having side conversations.
Our goal is to accept people and to avoid making judgments.
We will not discuss people who are not present.
We have the right to ask questions and the right to refuse to answer.
We especially encourage Members to regularly share their strengths, skills, insights, successes (however small they may
seem) and hopes.
Each of us shares responsibility for making Group meetings and the Group work.
Having benefited from the help of the Group, we recognise the need for volunteering our time to share in Group
leadership or responsibilities outside of meetings.
We try not to give or take advice.
We are all entitled to equal time to speak and the right to remain silent.
Page 32
Support Group Confidentiality Agreement
Name: _____________________________________________
Address: ____________________________________________
Address: ____________________________________________
Phone: _____________________________________________
E-mail: _____________________________________________
During my membership in the Support Group I may learn personal and confidential information about individuals who participate
or are involved with this Group.
Whether information is available to me through the Group or accidentally, I agree to maintain confidentiality and not reveal
information to any person in the Group or outside the Group while a Member of the Group or at any time in the future when I
may no longer be a Member of the Group.
I understand that breaking of this agreement could result in the termination of my membership with the Support Group.
I understand that medicine is an ever-changing science. In view of the possibility of human error or changes in medical sciences, the
Support Group Leader nor any other party who has been involved in the preparation or on-going functioning of this Group
warrants that the information communicated is accurate or complete, and they are not responsible for any errors or omissions or
for the results obtained from the use of such information. Any information pertaining to my health should be reviewed with my
physician. Nothing provided herein should be construed as a substitute for professional advice or treatment by a health care
professional.
Although good faith efforts have been taken to preserve participant confidentiality, no guarantees can be made in this regard nor
to information communicated by and between participants in this forum.
Signature of Member: ______________________________________ Date: ______________________
Signature of Witness: _______________________________________ Date: ______________________
Page 33
Where to call if you suspect that a
child is or may be in need of
protection
Alberta
To find out more information on your role in knowing when
and what to report:
http://www.child.alberta.ca/home/784.cfm
To report suspected child maltreatment call
1-800-387-KIDS (1-800-387-5437)
To contact the ministry
http://www.child.alberta.ca/home/534.cfm
Phone: 780-422-3004 (Monday to Friday 8:15 a.m. 4:30 p.m.)
For toll free access in Alberta dial 310-0000.
To find local child welfare services
http://www.child.alberta.ca/home/local_offices.cfm
British Columbia
To find out more information on your role in knowing when
and what to report:
http://www.mcf.gov.bc.ca/child_protection/pdf/child_wel
fare_your_role.pdf
To report suspected child maltreatment
Call local child welfare services (Monday to Friday, 8:30
a.m. to 4:30 p.m.) or after-hours call the Helpline for
Children at 310-1234 or call police.
To contact the ministry
In Victoria call 250-387-6121
In Vancouver call 604-660-2421
Elsewhere in BC call 1-800-663-7867
Email: EnquiryBC@gems3.gov.bc.ca
To find local child welfare services
Check telephone book blue pages or visit
www.mcf.gov.bc.ca/regions/regional_offices.htm
Manitoba
To find out more information on your role in knowing when
and what to report:
http://www.gov.mb.ca/fs/childfam/child_protection.html
To report suspected child maltreatment
In Winnipeg:
Child and Family Services, All Nations Coordinated
Response Network (ANCR)
835 Portage Avenue
Winnipeg MB R3G 0N6
Phone: 944-4200
Toll-free: 1-888-834-9767
After-hours (emergency calls only): 944-4050
If outside of Winnipeg, intake is handled by the nearest
local Agency by geographic area. ANCR is able to
provide clarification.
To contact the ministry
Call 204-945-3744 or toll-free 1-866-626-4862 (TDD
204-945-4796).
Email: mgi@gov.mb.ca
To find local child welfare services
http://www.gov.mb.ca/fs/misc/loc/cfsagencies.html
New Brunswick
To report suspected child maltreatment call
1-800-992-2873 or emergency after-hours 1-800-4429799
To contact the ministry and find local child welfare
services during business hours
1-866-444-8838
To find local child welfare services online:
http://app.infoaa.7700.gnb.ca/gnb/Pub/EServices/ListSer
viceDetails.asp?ServiceID1=9355&ReportType1=All
Newfoundland & Labrador
To report suspected child maltreatment
Child Protection Services (Child Abuse) 709-570-7819
After hours call (709) 570-7819
To contact the Department of Health and Community
Services
Confederation Building, 1st Floor West Block, P.O. Box
8700, St. John’s Newfoundland, A1B 4J6
Page 34
After hours call (709) 897-2000
Nova Scotia
To report suspected child maltreatment
1-877-424-1177 or after hours 1-866-922-2434
http://www.gov.ns.ca/coms/families/abuse/
If you suspect that a child is being abused or neglected,
please contact the child welfare agency in the area
where the child lives. It is best if you contact the agency
by telephone or in person.
To find the child welfare agency in your area, please
contact the Agency or District Office of the Department
of Community Services nearest you for more
information.
There are twenty child welfare agencies throughout the
province: nine are Community Services' district offices
and eleven are privately run societies/family and
children's services agencies. The Mi'Kmaq Family and
Children's Services Agency provides services for native
families living on reserves.
To contact the Nova Scotia Department of Community
Services
1-877-424-1177 or 902-424-3202
Phone: (867) 873-7046
Fax: (867) 873-7706
http://www.hlthss.gov.nt.ca/
or
http://www.hlthss.gov.nt.ca/english/social_services/defaul
t.htm
Crisis Telephone Line
all collect from anywhere in the NWT for help with
personal problems 867-872-4133, Toll free 1-877-872-5925
Nunavut
To report suspected child maltreatment in Iqaluit:
Call Iqaluit Dispatch at 867- 979-5650 and ask to have
the on-call social worker contact you.
In all other Nunavut communities:
Contact your local social work office, health centre or
the local community RCMP.
To contact the Nunavut Department of Health and
Social Services:
Government of Nunavut, Health and Social Services
PO Box 1000, Sta. 1000
Iqaluit, NU
X0A 0H0
(867) 975-5700
http://www.gov.nu.ca/health/
To find local child welfare services
http://www.gov.ns.ca/coms/department/contact/FindLoc
alOffices.html
Northwest Territories
Recognizing Indicators of Child Abuse and Neglect link to
brochure:
http://www.hlthss.gov.nt.ca/english/publications/pubresul
t.asp?ID=203
To report suspected child maltreatment contact local
services.
In Yellowknife, call 867-873-7276 or 867-873-1929
after hours HELP Line 867-920-2121
To contact the Department of Health and Social Services
Department of Health and Social Services
Government of the Northwest Territories
Box 1320 Yellowknife, NT X1A 2L9
Ontario
To report suspected child maltreatment call your local
children’s aid society listed in the telephone book
emergency pages, or your local police. There are 53 local
Children’s Aid Societies in Ontario. To locate the one for
your area, and the telephone number for it, click on this
link:
http://www.oacas.org/childwelfare/locate.htm
To contact the Ministry of Children and Youth Services
Telephone Toll Free: 1-866-821-7770
TTY: 1-800-387-5559
Ministry of Children and Youth Services
ServiceOntario INFOline
M-1B114, Macdonald Block
900 Bay Street
Toronto ON M7A 1N3
Page 35
http://www.gov.on.ca/children/english/programs/child/pr
otection/STEL02_179715.html
To find local child welfare services
Call the Ontario Association of Children’s Aid Societies at
416-987-7725
http://www.oacas.org/
Prince Edward Island
To report suspected child maltreatment
1-800-341-6868 or 911 or call local police or child and
family services (below).
http://www.gov.pe.ca/infopei/index.php3?number=2062
5
To contact the Department of Social Services and
Seniors’ Child and Family Services
Montague Office:
Tel: (902) 838-0714
Email: jsrobertson@ihis.org
http://www.msss.gouv.qc.ca/en/reseau/info_sante.php
To contact the ministry:
http://wwwxml.gouv.qc.ca/courriel/index_en.asp?s=38
Monday to Friday, from 8:30 a.m. to 4:30 p.m.
Québec City area: 418-644-4545
Montréal area: 514-644-4545
Elsewhere in Québec : 1-877-644-4545 (toll free)
Deaf and hearing impaired line:
Montréal : 514-873-4626
Elsewhere in Québec : 1-800-361-9596 (toll free)
Saskatchewan
For an overview of child protection laws and the role of
Child and Family Service agencies in Saskatchewan:
http://www.plea.org/freepubs/cps/cps.pdf
Souris Office:
Tel: (902) 687-7015
Email: sdwilliams@ihis.org
To report suspected child maltreatment:
Saskatoon - City: (306) 933-6077
Saskatoon - Rural: (306) 933-5069 or 1-800-274-8297
Summerside Office:
Tel: (902) 888-8087
Email: jmmurray@ihis.org
Regina: (306) 787-3760
Charlottetown Office:
Tel: (902) 368-5337
Email: jmrobertson@ihis.org
Police emergency: 911
Québec
To find out more about the process of filing a report:
http://publications.msss.gouv.qc.ca/acrobat/f/documenta
tion/2008/08-838-01A.pdf
To report suspected child maltreatment
1-866-532-2822 or 1-800-263-2266 (French only)
After hours or emergencies call 8-1-1
For services in English on the island of Montreal, call
Batshaw Youth and Family Centres at 514-935-6196.
Contact local Centre jeunesse (Child Protection Centre).
Website: http://www.acjq.qc.ca/
To find local child welfare services
Kids Help Line: 1-888-668-6868
Little Warriors website:
http://www.littlewarriors.ca/where_to_get_help/map/sas
katchewan.html?P=Saskatchewan#moose%20Jaw
To contact the Child and Family Services Division of
Social Services:
1920 Broad Street,
Regina, SK S4P 3V6
Telephone: (306) 787-7010
Fax: (306) 787-0925
http://www.socialservices.gov.sk.ca/child-protection/
or select
First Nations and Metis Services
Telephone: (306) 787-3949
Page 36
Children’s Services
Telephone: (306) 787-2245
Family Support and Child Protection
Telephone: (306) 787-0008
Yukon
For an overview of child protection laws and the role of
Child and Family Service agencies in the Yukon
http://www.hss.gov.yk.ca/childabuse.php
To report suspected child maltreatment
867-667-3002
or
1-800-661-0408, local 3002 (24 hours)
http://www.hss.gov.yk.ca/programs/family_children/child
_abuse/
To contact the Department of Health and Social
Services, Family and Children’s Services:
867-667-3002
http://www.hss.gov.yk.ca/sa_contact.php
To find local child welfare services
867-667-3002
http://www.hss.gov.yk.ca/sa_contact.php
Little Warriors website:
http://www.littlewarriors.ca/where_to_get_help/map/yu
kon.html?P=Yukon#dawsonCity
The information above on how to report suspected child
abuse is from the Canadian Child Welfare Research
Portal (http://www.cecw-cepb.ca/help)
Page 37
Information to share with new members
The following pages are the information your Support Group
Members will receive in their “New Support Group Member Welcome
Package.” Most of it is adapted from sections of this manual.
Page 38
Section 3: New Support Group Member Welcome Package
Page 39
Welcome to your new Support Group
creating a level of accountability for their own
health
Thank you for deciding to join an On-line Support Group.
increased self-esteem and equality among
Members, which has therapeutic benefits
Support Groups, also called peer Support Groups or self-help
groups, are common in many disease states; however, being
a Member of a Support Group for a rare disease presents
different challenges and rewards.
social role models develop and Members learn
how others cope
In the case of more common diseases like cancer or diabetes
for example, the pool of potential Members is large and
creating a Group in a town or even part of town that can
meet regularly and in person is a very real possibility.
a normalizing effect occurs where Members
begin to view their experiences as “normal”,
understand that they are not alone and feel less
isolated, depressed and stigmatized
The same cannot be said in the case of rare diseases. Any
given rare disease sufferer may be the only person in town
with that disease or the only person for miles. This used to
mean that Support Groups for people with rare diseases
were not possible or required hours of driving. Depending on
a patient’s symptoms, driving may have been out of the
question, or made the meeting such an undertaking that
they were scheduled far apart and attended infrequently.
networking with others creates caring
relationships, fosters roles other than “patient”
and provides immediate access to help outside
of meeting times
This on-line model for Support Groups was specifically
designed using Internet tools to bridge those miles and make
Support Group attendance possible and easy for the
majority of people with a rare disease.
The Center for Community Support and Research at Wichita
State University (http://www.ccsr.wichita.edu) is
internationally recognized as a leading resource for research
on Support Groups, community coalitions, networks of
community members and non-profit health and human
service organizations. A thorough review of their research
and the research they support demonstrates that patient led
Support Groups have proven benefits as very effective tools
in improving health outcomes.
opportunities for mentoring
information sharing provides practical
approaches to lifestyle issues and the sharing of
personal experiences to the benefit of others
Members of a Support Group are sometimes told that they
cannot run their Group without a professional "expert" at the
helm. Not so!
While professional-led Support Groups have their place, the
real experts on living with a rare disease are the people who
live with a rare disease. They become more powerful and
healthy by learning how to help each other as well as
themselves.
This research demonstrates that Group Members experience:
instant identity by interacting with others “who
know how they feel”
improvements in feelings of loneliness through a
unique empathy from other Members which
differs from that of professionals
increased empowerment by encouraging them
to take charge of their condition and a feeling
of strength in numbers
a feeling of safety in being able to ask questions
in a safe, non-judgmental place about activities
of daily living helping to redirect emotions and
Page 40
Your responsibilities as a Support
Group Member
It has been said that, the central idea of self-help is: "You
alone can do it — but you can’t do it alone."
Although only the individual can take the actions to bring
change into his or her life, there are times when it’s too much
to rely solely on personal resources. There is a unique strength
in Group membership which can help a person to mobilize
his or her energies and attain a better sense of well-being.
Do not expect to be given any kind of advice that is medical
in nature. Expect to be given emotional support and
resource information.
Responsibilities of Group Members to each other
One of the primary purposes of a Support Group is to
provide an environment where people with common
problems or similar stressful life situations can meet with one
another and help each other cope with their problems in a
supportive, caring, and non-judgmental atmosphere.
Research indicates that attending Support Groups can be
beneficial and that patients who participate in Support
Groups — in addition to their medical treatments — report
less anxiety and depression and actually live longer than
those who do not attend. It is speculated that having the
social support of others in the Group boosts the immune
system by reducing anxiety and psychological stress.
listen attentively when another Member is
speaking and avoid side conversations
promote positive comments and new
viewpoints (keeping the discussion upbeat), you
don’t want the discussion to deteriorate into a
gripe session
participate in the discussion - sharing your
problems and offering ideas
rather than engage in advice giving, Members
should assist other Members in solving their own
problems
allow other Members to vent negative or angry
feelings; often this must be done before positive
change can happen
assure fellow Members that whatever is said in
the Group stays in the Group
make a commitment to the Group,
contributing whatever talents, skills, resources or
information that is necessary to assure the
Group's success
remember that the group Leader is a
volunteer, he or she spends a great deal of his or
her own time preparing for the meetings,
conducting the meetings and following-up on
questions Members may ask; if you have the
ability to help the leader out with some of these
tasks, by all means offer your assistance
You can talk to others suffering with the same illness who can
understand what you are going through. It is often a relief
and reassuring to find others with the same illness who
understand what you are going through. Support Group
members encourage each other to take care of themselves.
Members can advise you of where you can access
information.
According to the New Jersey Self-Help Clearinghouse, in a
Support Group, the role of facilitating or leading a Group
discussion is not the sole responsibility of one person, but the
responsibility of the entire Group. Thus, all Members must be
aware of their responsibilities to:
help Members feel comfortable and get to
know each other
be sure the speaker has finished describing
his/her problem before responding
Page 41
Confidentiality
confidence by other Group Members either in meetings or in
private conversations or e-mails.
By taking part in a Support Group you agree to share very
personal views and information. For example, simply by
joining you share the fact that you have a particular medical
condition. Some people are very open about their health
status, others are not, so even people’s last names should not
be shared. Group Members must believe that the
information they share will be kept in the strictest
confidence.
Confidentiality extends not only for the duration of the time
you are in the Group, but also continues indefinitely once
your membership with the Group has ended.
You must understand that during your membership in a
Support Group you may learn personal and confidential
information about other Members of the Group.
The first exception is if someone declares a plan to harm him
or herself or another adult
Whether information is available to you through the Group
or accidentally, you must agree to maintain confidentiality
and not reveal information to any person in the Group or
outside the Group while a Member of the Group or at any
time in the future when you may no longer be a Member of
the Group.
If a Group Member clearly states a plan to harm him or
herself or another adult, your Support Group Leader will
quickly get confidential advice on how to help or intervene.
You should also understand that breaking of the
confidentiality agreement could result in the termination of
your membership in the Support Group.
The second exception is if it is suspected that a child is, or
may be, in need of protection.
Although good faith efforts are taken to preserve participant
confidentiality, no guarantees can be made in this regard
nor to information communicated by and between
participants in the Group.
There are two exceptions you need to be aware of where the
Group Leader must report information.
In a case of suspected child abuse or neglect all provinces
have legislation that states clearly that members of the
public have an obligation to report promptly and directly to
a child protection official or agency if they have reasonable
grounds to suspect that a child is, or may be, in need of
protection.
Your Support Group Leader will take action if the person
having charge of the child is suspected of causing, or
knowingly failing to protect the child from physical, sexual or
emotional abuse, neglect or risk of harm.
Besides the two exceptions outlined above, the only time you
can change a commitment to confidentiality is if you ask and
talk directly with the person concerned.
Confidentiality Guidelines
In order for your Group to grow and thrive confidentiality is
the most important issue you will have to deal with. Do not
discuss with other persons (such as family, friends, neighbours,
etc.) any information obtained in conversation with the
Group and/or its Members. There is a Confidentiality
Agreement in this package, ensure you read, understand,
sign and return the agreement to your Support Group
Leader before you join your first meeting.
Do not discuss with other people (such as family, friends,
neighbours, etc.) any information that is told to you in
Page 42
Video Chat
The technology used to make on-line video Support Groups
happen is called “video chat.” There are many such
programs available on the internet. Alpha-1 Canada, the
organization that created this material, has chosen to use a
service called Skype®. The following section is specific to
Skype but can also be useful if you are using another service.
You may already be familiar with Skype for making free
voice calls with your computer to other people who have
Skype.
Close out any other program that may be using
your webcam.
Use headphones to eliminate echo. (This is an
issue common to all web-based video chat
services)
Check microphone sensitivity by running
through your computer's preferences.
Also check to see if your computer meets the recommended
system requirements.
Poor video performance
Poor video performance can be influenced by a
number of factors. The most common ones are listed
below:
Webcams
A slow or busy internet connection
A slow or busy internet connection
You or the people you are talking to may be
experiencing problems with video due to a slow
internet connection. You should all try closing other
applications that use the internet (especially those
that might be playing music or video) and cancel
any file downloads.
Skype recommends the following minimum internet
speed to ensure good quality:
Audio calls: 60 kb/s (kilobytes per second)
Medium quality video calls: 256 kb/s
Higher quality video calls: 512 kb/s
Your computer is running slowly
Do you or the people you’re talking to have a lot of
programs open on your computers? Try closing some
of them and see if that makes a difference to your
video.
If you’re using a laptop, you may have problems
with video calls when it’s in power saving mode.
Change your computer to AC power or switch your
computer to maximum performance.
Skype recommends the following minimum system
requirements to ensure good quality:
Your computer is running slowly
Medium quality video calls: 1 GHz
(gigahertz) processor, 512 MB RAM
Bad lighting
High quality video calls: Intel Core duo or
faster
Too many USB devices plugged in
Webcams
Bad lighting
Webcams come in a range of qualities and prices.
If the room you’re talking from is quite dark, you’re
probably not sending great picture quality to the
people you are on a video call with. Try turning on
more lights or opening the curtains if it’s sunny
outside.
Remember that buying a good webcam benefits
the people you are talking to. If the people you are
talking to have low quality webcams you will see a
low quality image of them no matter how much
you have paid for your own webcam.
A decent webcam is a prerequisite for good quality
video calls but other factors like a slow or busy
internet connection and your computer running
slowly can ruin the experience.
Also, try not to sit with your back to a sun-lit
window or bright lamp. This will cause your face to
be in shadow and result in a poor picture. For best
results the light source should be shining on your
face from behind the webcam.
Page 43
Too many USB devices plugged in
You may not be sending great video because you’re
using other USB devices. Try disconnecting them or
try connecting your webcam to a different USB
port. If your webcam is plugged into a USB hub, try
plugging it into a USB port on your computer
instead and see if that helps.
Page 44