This page will collect common questions, and their answers. It is a good idea for a new members to the group to review the FAQ, because you can find answers to questions that have already been asked and answered.
Ultimately, we hope that better care for caregivers will result in better care for patients too.
(All of these answers are taken from messages, or were composed by moderators after answering a question. Feel free to send a message to the group owner if you have a new question, or think an answer can be expanded or modified to make it better.)
Today is Thursday, August 13, 2010 and these are the questions asked so far:
Joining the group
Who can join this group?
Membership in the Autoimmune Vasculitis Caregivers is intended for caregivers (spouses, parents, family, friends who give care and support) of a patient with one of the types of systemic vasculitis listed by the Vasculitis Foundation. Others will be considered on a case by case basis. You should have the diagnosis first. To confirm diagnosis, check symptoms with one of the other groups. You can request an invitation by going to the Group address, or contacting the group owner. Be prepared to chat a bit about who you are and why you want to participate in this group.
Do I need a Google Account to use Google Groups?
Short answer is no. You can be a member with any Email address.
More information about this topic:
http://groups.google.com/support/bin/answer.py?hl=en&answer=46438
Long answer is that having a Google Account can be helpful, because some of the other resources that will be posted in the mailing list, and in the companion blog, will be links to other Google tools like potentially documents, maps, calendars, etc.
You can decide this later. You can even use your profile login, and upgrade it later to a Google Account.
What's the difference between a profile and a Google Account?
http://groups.google.com/support/bin/answer.py?hl=en&answer=46951
Will other Google Groups users know that I'm a member of a group?
http://groups.google.com/support/bin/answer.py?hl=en&answer=46631
Short answer is NO. This group member list is restricted to members only. Only members of this group will see your group membership.
How can new people get into this group?
Just tell the group owner or a manager and they can send the invitation. Or, your friend can request to be invited by requesting an invitation from the group home page. They should be prepared to talk about their association with vasculitis just long enough to convince someone that they belong here, then they can join in. Not a big deal, just not for everyone.
Can patients join this group?
No. This group is intended for care givers. That is its reason for being. Under certain circumstances, anything is possible, but generally speaking, this online community is for vasculitis caregivers only. I threw the word autoimmune in the title to narrow this down to this particular branch of autoimmune related systemic vasculitides, as opposed to every patient out there with all kinds of vasculitis symptoms that are not really related to our concerns.
Can I invite my other family and friends?
Yes. You can recommend a friend or family member for membership in the group. You are encouraged to choose wisely. For the most part we are looking for those persons closely involved with the condition who will understand what we are talking about. A "distant relative" might not be able to participate fully, and in fact might stir things up in ways that are not helpful.
Other family members who are not really involved in the care decisions are not engaged enough to understand many of the issues that will come up here and may ask off topic questions.
Are professional caregivers welcome here?
Technically yes. The main question we will ask when we evaluate membership is not what your title is, but what your emotional role is. You may be getting paid, but even so you may also have that emotional connection to the patient that will make this a place you need to be. Still, you should be aware that most people who will participate will be family and friends of a patient, so this is not a professional forum. It is more like a place of fellowship between people who carry the same types of burdens.
Is there an age limit for who can participate?
Technically, no. However, the issues predicted to be discussed here could be pretty heavy (E.g. illness of a loved one, death of loved one, etc.), so we might loosely say that people should be age eighteen or over. But that is not officially a limitation. It is a matter of maturity, which cannot be measured in years. If someone younger is shown to be mature, then their request for membership will be considered.
Questions about this group
Who is a Caregiver?
That is a tough definition, because so many of us fall into this role through situations of strict need. We might originally have been a friend, sibling, parent, or spouse, but after the diagnosis we become caregivers. Some caregivers are professionals, who earn their living caring for patients. However, you came to wear this hat, so to speak, it is a role that comes to people, rather than them choosing it. You could say it is a calling, or you could say it is a price.
In short, a caregiver is someone who fills a medical need in a patients life, but does not have the disease themselves. They are distinguished from medical professionals, simply in that caregivers are not necessarily medically trained. To greater and lesser degrees, these caregivers often act as a patient's advocate, and are deeply involved in helping to provide medical history, determine medical decisions, and then are involved in following through with the patient care on a regular basis. Again, there are many different levels of commitment to this caregiver role, from simple advisor to the patient becoming completely dependent on the caregiver for every daily need.
How is this group any different from Parents4Wegeners on Yahoo?
The significant difference is this group is for caregivers ONLY, and Parents4Wegeners allows patients to become members. We will discuss caregivers issues regarding the patients here, including the good, the bad, and the ugly. How has vasculitis changed your life? Can you be honest about that answer when your patient is around? Then perhaps you see the point. This group is intended to provide support for caregivers without the patients being around to read our thoughts and feelings. Not that every post will go to a dark place, but some might. Who else will understand if not other people like you?
Parents4Wegeners is another caregivers group, and is dominated defacto by Wegeners parents because it stems back to a time before the Wegeners Granulomatosis Association was renamed Vasculitis Foundation and gained a wider scope. This group was founded with a broader scope in mind, and is homed in Google Groups, but essentially the goals of both groups are very similar.
This group was intended to create a place for caregivers -- parents, spouses, siblings, friends, and others -- to share what they know and help each other. If you are a caregiver of a patient, I would suggest joining both groups. Follow your conscience, but Autoimmune Vasculitis Caregivers one and all have a place here if you want to belong here.
Member Profile Questions
Can I use an alias or a nickname instead of my real name?
Technically yes. However, it is preferred that you use your real name.
The reason I ask people to use their real names is simply so we can all recognize one another. Only the group owner and managers can see your real Email. The group can only see your nickname. If you choose a vague nickname, it will take longer for people to trust that you are who you say you are.
Using alias names would be appropriate if this were a public forum, but this is a restricted list, and ultimately we will share our real names anyway.
So, it really is up to you what you use for a nickname, but it will be easier if you use your full name. However, if you are not sure, and want to get started slowly, then that is fine too. You can change it later when you feel more comfortable.
I suggest using at least your Firstname and LastInitial to avoid confusion with other members, present and future, who may have the same first name.
Questions about moderators
Is the board set up with guidelines for participants and for the moderator rules?
Yes, there are to be guidelines for participants and moderators, and those guidelines are under development. Your input will be helpful and appreciated. Send me your ideas please!
Will there be moderators, and who can be a moderator?
The main concern with these groups is that they are moderated so misconceptions, incorrect information, etc is addressed and corrected immediately. So, yes we will have moderators. These will be people chosen from group members who become known for their balanced viewpoint. The idea is not to set a guard on the tower, but to simply make sure people stay in track so this community can be a safe and productive place to give and get support.
How many moderators will there be?
This group needs enough responsible moderators who can oversee the day to day needs of the site. Most people will be more or less active at different times so we will need additional moderators to help oversee the site. Over time, some people will show themselves to be capable moderators, and some individuals may visit the site every single day.
Technical questions about the group
How do I change my email delivery option for my group?
The frequency of Email you choose to receive is up to each member. You can receive every message immediately, get a daily summary, or choose No Email and read everything online.
More info: http://groups.google.com/support/bin/answer.py?hl=en&answer=46605
What does it mean Restricted Group?
It is a restricted group, so you will have to be invited to see what is inside. Only members can read posts, only members can read the archives. Only members can see the members list.
Want to see what it is like to be a non-member? Log out and try to access the list home page.
Why is the site restricted?
The purpose of this group is to act as a support resource for a select group of caregivers, Specifically, those who are caregivers to patients with autoimmune related vasculitis conditions. Mostly, this will consist of people associated with the list of vasculitis conditions listed on the Vasculitis Foundation website, but not exclusively. There are some other conditions that may be similar enough that the membership will be approved because that person has something to bring to this group. Plus, the stuff we talk about here is private.
I have another question.
Submit your questions to the group, and the most frequently asked questions and their answers will make their way onto this list.
