在线罕见病病友俱乐部组建指南 by xiaomu guo

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 patientâ&#x20AC;&#x2122;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

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 peopleâ&#x20AC;&#x2122;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.

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 â&#x20AC;&#x153;togetherâ&#x20AC;? 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 Membersâ&#x20AC;&#x2122; changing needs. Build review and change into the way you run it as well as making special efforts to check on what youâ&#x20AC;&#x2122;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 â&#x20AC;&#x153;officialâ&#x20AC;? 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 organizationâ&#x20AC;&#x2122;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-profitâ&#x20AC;&#x2122;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 patientâ&#x20AC;&#x2122;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 donâ&#x20AC;&#x2122;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, donâ&#x20AC;&#x2122;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 donâ&#x20AC;&#x2122;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.

Skypeâ&#x20AC;&#x2122;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 wonâ&#x20AC;&#x2122;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. Johnâ&#x20AC;&#x2122;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 childrenâ&#x20AC;&#x2122;s aid society listed in the telephone book emergency pages, or your local police. There are 53 local Childrenâ&#x20AC;&#x2122;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

Childrenâ&#x20AC;&#x2122;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 Childrenâ&#x20AC;&#x2122;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 â&#x20AC;&#x153;New Support Group Member Welcome Package.â&#x20AC;? 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.

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 peopleâ&#x20AC;&#x2122;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 youâ&#x20AC;&#x2122;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