We are in the process of adding the French content to this site. As a result some pages are translated and some are not. Please bear with us as we complete this important process. L’ajout du contenu en français à ce site se fait actuellement. Vous verrez donc que certaines pages sont disponibles en français et d’autres ne le sont pas. Nous vous remercions de votre patience pendant que nous complétons ce projet.

Why do people join a Support Group?

Research has found that the top five reasons people join a group are to:

  • know they aren’t alone
  • hear about current medical research
  • become more informed about their condition, treatment and side effects
  • learn how other people deal with it and compare their experiences
  • relax with others who understand what they are going through

What are the benefits I can expect from being a member of an Alpha-1 Canada On-line Support 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 also expect:

  • instant identity by interacting with others “who know how you feel”
  • improvements in feelings of loneliness through a unique empathy from other Members which differs from that of professionals
  • increased empowerment by encouraging you to take charge of your 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 your own health
  • increased self-esteem and equality among Members, which has therapeutic benefits
  • social role models develop and you will learn how others cope
  • opportunities for mentoring
  • a normalizing effect occurs where you begin to view your experiences as “normal,” understand that you 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 all members.

You should not expect to receive medical advice. Any information you hear in the Group pertaining to your health should be reviewed with your 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.

When and how often will the Support Group meet?

These are decisions that each group will make for itself. It would be safe to assume that groups will meet once or twice per month for between 1 and 1½ hours each time in the early evening. However, something completely different may work for some groups. If you are a member of the group when it forms, rest assured that you will be involved in making these decisions.

Will my confidentiality be assured? 

In order for a Support Group to grow and thrive confidentiality is the most important issue the Group will have to deal with. Leaders and Members are expected to not discuss with other persons (such as family, friends, neighbours, etc.) any information obtained in conversation with the Group and/or its Members.

All members will be required to read, understand, sign and return a confidentiality agreement before they participate in Group meetings.

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. Research has found that the top five reasons people join a group are to:

  • know they aren’t alone
  • hear about current medical research
  • become more informed about their condition, treatment and side effects
  • learn how other people deal with it and compare their experiences
  • relax with others who understand what they are going through

During your membership in an Alpha-1 Canada Support Group you may learn personal and confidential information about individuals involved with the Group. 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.

Breaking of the confidentiality agreement could result in the termination of your membership with the Alpha-1 Canada Support Group.

Although good faith efforts are taken to preserve participant confidentiality, Alpha-1 Canada can make no guarantees in this regard nor to information communicated by and between participants in the Group. Your Group Leader will do everything in his or her power to maintain your confidentiality and will ask you to do the same.

What are my responsibilities as a Group Member? 

As a Group Member your responsibilities are to:

  • help other Members feel comfortable
  • be sure the speaker has finished describing his/her problem before responding
  • listen attentively when another Member is speaking and avoid side conversations
  • promote positive comments and new viewpoints
  • participate in the discussion – sharing your problems and offering ideas
  • rather than engage in advice giving, assist other Members in solving their own problems
  • 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 you can
  • 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.

DISCLAIMER:This website is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this website to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder. Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.

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