Support Groups: Make Connections, Get Help
Source: Mayo Clinic
By Mayo Clinic Staff
If you're facing a major illness or stressful life change, you don't have to go it alone. A support group can help.
Find out how to choose the right one.
Support groups bring together people facing similar issues, whether that's illness, relationship problems or major life changes.
Members of support groups often share experiences and advice.
It can be helpful just getting to talk with other people who are in the same situation.
While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle.
A support group can help you cope better and feel less isolated as you make connections with others facing similar challenges.
A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope.
Understanding support groups
A support group is a gathering of people who share a common health concern or interest.
A support group usually focuses on a specific situation or condition, such as breast cancer, diabetes, heart disease, addiction or long-term caregiving, for example.
Support groups are not the same as group therapy sessions.
Group therapy is a formal type of mental health treatment that brings together several people with similar conditions under the guidance of a trained mental health provider.
Support groups may be formed by a lay person with the condition or by someone interested in it, such as a family member.
In some cases, support groups may be formed by nonprofit organizations, advocacy organizations, mental health clinics or other organizations.
Support groups also come in a variety of formats, including in person, on the Internet or by telephone. They may be led by professional facilitators — such as a nurse, social worker or psychologist — or by group members.
Some groups are educational and structured. For example, the group leader may invite a doctor, psychologist, nurse or social worker to talk about a topic related to the group's needs.
Other support groups emphasize emotional support and shared experiences.
Benefits of support groups
Regardless of format, in a support group, you'll find people with problems similar to yours.
Members of a support group usually share their personal experiences and offer one another emotional comfort and moral support.
They may also offer practical advice and tips to help you cope with your situation.
Benefits of participating in support groups may include:
- Feeling less lonely, isolated or judged
- Gaining a sense of empowerment and control
- Improving your coping skills and sense of adjustment
- Talking openly and honestly about your feelings
- Reducing distress, depression, anxiety or fatigue
- Developing a clearer understanding of what to expect with your situation
- Getting practical advice or information about treatment options
- Comparing notes about resources, such as doctors and alternative options
How to find a support group
To find a support group:
- Ask your doctor or other health care provider for assistance. Your doctor, nurse, social worker, chaplain or psychologist may be able to recommend a support group for you.
- Search the Internet. Online support groups are available as email lists, newsgroups, chat rooms, blogs and social networking sites, such as Facebook.
- Contact local centers. Contact community centers, libraries, churches, mosques, synagogues or temples in your area and ask about support groups.
- Check your local listings. Look in your local telephone book or check your newspaper for a listing of support resources.
- Ask people you know with the condition. Ask others you know with the same illness or life situation for support group suggestions.
- Contact organizations. Contact a state or national organization devoted to your disease, condition or situation.
What support group, if any, you ultimately choose may depend largely on what's available in your community, whether you have access to a computer or whether you're able to travel.
Questions to ask before joining a support group
Each type of support group has its own advantages and disadvantages. You may find that you prefer a structured, moderated group.
Or you may feel more at ease meeting less formally with a small group of people.
Some people may prefer online support groups.
Ask these questions before joining a new support group:
- Is it geared toward a specific condition?
- Is the location convenient for regular attendance?
- What is the meeting schedule?
- Is there a facilitator or moderator?
- Is a mental health expert involved with the group?
- Is it confidential?
- Does it have established ground rules?
- What is a usual meeting like?
- Is it free, and if not what are the fees?
- Does it meet your cultural or ethnic needs?
Plan to attend a few support group meetings to see how you fit in. If the support group makes you uncomfortable or you don't find it useful, try another one.
Remember that even a support group you like can change over time as participants come and go.
Periodically evaluate the support group to make sure it continues to meet your needs.
Also be aware that you may be at a different stage of coping or acceptance than are others in the support group.
Or they may have a different attitude about their situation. While such a mix can provide rich experiences, it may also be unhelpful or even harmful.
For instance, some in the group may be pessimistic about their future, while you're looking for hope and optimism.
Don't feel obligated to keep attending the group if a conflict or group dynamic is upsetting — find another group or just sit out for a while.
Support group red flags
Not all support groups are a good match for you. Some may be driven by the interests of one or two members.
Look for these red flags that may signal a problem with a support group:
- Promises of a sure cure for your disease or condition
- Meetings that are predominantly gripe sessions
- A group leader or member who urges you to stop medical treatment
- High fees to attend the group
- Pressure to purchase products or services
- Disruptive members
- Judgment of your decisions or actions
Be especially careful when you're involved in Internet support groups:
- Keep in mind that online support groups are sometimes used to prey on vulnerable people.
- Be aware of the possibility that people may not be who they say they are, or may be trying to market a product or treatment.
- Be careful about revealing personal information, such as your full name, address or phone number.
- Understand the terms of use for a particular site and how your private information may be shared.
- Don't let Internet use lead to isolation from your in-person social network.
Getting the most out of a support group
When you join a new support group, you may be nervous about sharing personal issues with people you don't know.
So at first, you may benefit from simply listening. Over time, though, contributing your own ideas and experiences can help you get more out of a support group.
But remember that support groups aren't a substitute for regular medical care.
Let your doctor know that you're participating in a support group.
If you don't think a support group is appropriate for you, but you need help coping with your condition or situation, talk to your doctor about counseling or other types of therapy.
Support Groups & Therapy Groups: What Is The Difference?
Source: Desert Health News
By Gail C. Bardin
Although the two types of groups have many similarities, there are several distinct differences.
The Type of Assessment
The first step in joining either type of group is the interview/assessment. For a support group, the assessment is more about determining the appropriateness of the individual for a particular support group.
For a therapy group, there’s a much more comprehensive assessment, as it’s important to know whether or not the individual is both wanting and able to handle more in-depth, psychotherapeutic issues and techniques.
How Open the Group Is
Typically, new members can enter or leave a support group quite readily, and the group simply continues with the members who are present (an “open group”).
This is not so with a therapy group, which is much more focused and structured, and thus requires a more fixed membership (a “closed group”).
Group Size
Typically a therapy group has approximately six to ten participants, although this may vary.
This is also typical for a support group, although these groups may be smaller or as large as 11 to 12 if they are very cohesive, and both space and time can be accommodated.
The Role of the Facilitator
In therapy groups, the facilitator functions as a therapist, directly leading the group, educating, and, just as in individual therapy, utilizing different psychotherapeutic interventions.
In contrast, a support group facilitator is what I refer to as a “guide from the side.” He or she looks for underlying themes, and then may highlight some of those themes.
This can facilitate further discussions, encouraging member-to-member interaction. The support group facilitator also ensures that everyone gets a chance to speak, and that members are sharing, not advising one another, thus ensuring a “safe” environment for all.
The Purpose of Each Type of Group
The general purpose of support groups is to help identify healthy, effective coping techniques, skills often geared to mitigating feelings of angst, fear, pain, and loss.
The groups also provide a great support network—members in similar circumstances with similar feelings with whom they can share in an open and unedited fashion.
For some people, this may be their only support network. The group allows people to be where they are and validates and normalizes what they’re feeling.
It’s a place for encouragement, not only from the facilitator, but from other members.
A therapy group also helps with developing coping skills, but in a somewhat different manner.
Its focus is more educational, therapeutic, and process-oriented. It provides a forum for change and growth, and there is often a theme presented for the entire group, with specific outcomes anticipated.
In general, I would characterize therapy groups as being more structured and didactic in nature, addressing issues on a deeper level, and having a specific goal or outcome in mind.
On the other hand, support groups are less structured, with no curriculum per se—instead, many themes may enter a discussion by a fluid group of members, with the facilitator guiding from the side.
Not everyone will wish to participate in the more intense, focused, therapy-based experience of group therapy; however, nearly everyone can benefit from a support group.
Each type of group offers a unique dynamic and the key is finding a group that meets your specific needs and association.
For example, at Gilda’s Desert Cities there are groups for those recently diagnosed and currently in treatment for cancer, their caregivers, those in bereavement, and those no longer in treatment but dealing with post-treatment issues.
Both types of groups have a lot to offer, and I would encourage everyone faced with a new challenge to consider them both.
Gail Bardin is Clinical Director at Gilda’s Desert Cities.
For more information contact Gilda’s Club at (760) 770.5678 or visit
http://www.gildasclubdesertcities.org
Is A Resolve Support Group Right For Me?
Source: The National Infertility Association
A support group can be most beneficial at certain points of the infertility experience:
- When faced with making a difficult decision
- When embarking on new parenting options
- When dealing with a major loss
If any of the following statements apply to you, consider joining a RESOLVE support group:
- I’m feeling lonely and isolated
- I have very few people to talk with about my infertility. No one understands
- Everyone I know is pregnant or has children
- My partner is the only one I have who provides emotional support
- Infertility is affecting my work and career
- I feel that my life plan is out of control. I’m having trouble navigating through my medical treatment options
- I can’t decide when “enough is enough”
- Holidays and coping with family and friends is becoming more and more difficult.
Myths and Facts about Support Groups
You may hesitate to join a support group because of some assumptions about what happens at the group.
Consider these myths and facts:
- Myth: Being in a RESOLVE support group is like going to therapy.
Busted: A support group is not designed to offer professional counseling or psychological therapy.
It is, however, therapeutic to talk with others about an intense experience like infertility.
- Myth: I’ll have to bare my soul and talk about the most private areas of my life.
Busted: It is up to you to decide how much information and emotion to share with the group.
You remain in control.
- Myth: Joining a support group of infertile women or couples will just make me feel worse.
Busted: You will receive support for your pain and disappointment and will also learn new methods of coping that can help you move forward.
What Are RESOLVE Support Groups?
RESOLVE offers two different support group options.
Peer-led Support Groups
- A RESOLVE volunteer hosts and facilitates peer-led support groups.
- A peer-led support group is not intended to be a replacement for private counseling or a professionally-led support group.
- Peer-led support groups are composed of a varying number of people.
- Groups are often “drop in” in nature.
- Generally a peer-led group lasts two hours.
Professionally-led Support Groups
- A mental health professional leads a professionally-led support group.
- The support group leader will provide a safe place where individuals can process feelings relating to infertility or their family building efforts.
- Professionally led support groups are often composed of 8 to 10 individuals or 4 to 5 couples.
- Sessions are scheduled weekly for 10-12 weeks. Support group leaders often have an intake appointment with each participant prior to the start of the group.
- The support group leader will bring up specific topics for discussion.
- The support group leader will ensure that no one person dominates the group.
Click here to find a support group in your area
Starting and Running A Caregiver Support Group
Source: Today's Caregiver
By Suzette Levy>
There are millions of caregivers in the United States and they all have common needs:
- Recognition
- Counseling
- Support
- Information
- Problem Sharing
- In many cases, Peer Socializing
One of the proven ways that many of these needs can be met is by the formation of a local Caregiver Support Group.
Caregivers are one of America’s most valuable assets, but often their needs are lost in the care recipients’ problems.
Therefore, having a place where caregivers can be themselves, share experiences and insights and have the positive input of their peers is critical.
What is a Support Group and how do you Start One?
A caregiver support group is a regularly scheduled, informal gathering of people whose lives are directly or indirectly affected by the caregiving needs of another and who benefit from peer acceptance and recognition for their common concerns and are grateful for the wisdom, insight and humor of their fellow caregivers.
Who Runs a Support Group?
Informal support groups generally are created by one or more individuals dealing with a loved one who have an illness in common such as Parkinson’s disease, or age (grandma) or category (kids with special needs) that decide they need to reach out and share to help others and themselves.
It doesn’t take special training, but it does take effort, dedication and ingenuity.
Coordinator Responsibilities
- The coordinator must be dedicated to the cause of helping other people.
- The coordinator needs to be supportive, realistic, reassuring and empathetic.
- Must be able to assess the needs of the individuals and the group as a whole.
- Plan programs.
- Recruit members.
- Set up meetings.
- Lead group discussions.
- Distribute information.
- Publicize the group.
- Where Should We Meet?
The number one priority usually is “Where are we going to meet?” A good first choice is a local hospital: you can probably reserve a classroom or small auditorium for your meetings.
The education department, administration secretary, or human resources usually know whom to contact. Some groups meet at a church, synagogue, community center, YMCA, library or even a physician’s conference room.
The meeting place must be easily accessible and physically as well as psychologically comfortable. Also check with local nursing homes, adult day centers and assisted living facilities as they directly benefit from caregivers being exposed to their facilities.
Also, if a loved one must accompany the caregiver, there is a place for them to go. All should be free of charge.
Helpful Hints When Looking for Space
- These are some ideas to consider:
- Is there a cost?
- Are tables and chairs available?
- Can I arrange them in a circle?
- How many will the room hold?
- Is it handicapped accessible?
- Is the room adequately air-conditioned and/or heated?
- Is a restroom location near the meeting room?
- Is there a telephone available near the meeting room?
- How far is the entrance from the meeting room?
- Name and number of person in charge of this area?
- Is a kitchen available?
- Would the facility assist in advertising that your group is meeting there?
When Should We Meet?
You probably will have to poll the interested parties regarding the best time to meet - day or evening, weekday or weekend, as well as how often.
The most successful groups are well planned and plan well. It helps to have a regular pattern: the first Monday of every month or every Tuesday.
Depending on the time of day you have chosen to meet, you may want to consider if your group will be together during a mealtime.
For example, a mid-day gathering allows the possibility of a brown bag lunch. Another possibility could be to have each member contribute to a hospitality committee if your group wants refreshments.
What If Your Loved One Cannot be Left Alone?
Depending on the disease, there are many different options to think about. If the patient needs day care, some facilities may allow your loved one to attend their facility one-day per month or week; the same as with a respite program.
Having a friend, neighbor or relative stay with your loved one so the caregiver can attend is another possibility.
REMEMBER this is for the caregiver and you must have some time alone.
What Makes a Good Group Leader?
Many times, the co-coordinator is also the group leader. However, as a group grows, others may help facilitate and lead, while the coordinator takes care of all the logistics.
The leader must be active and maintain an interest in the group. The leader needs to stay current regarding new information and advances in the areas of interest to the group.
The leader must be dynamic and motivated. Active listening while guiding the group is important to the success of the group.
It is also important to end the group meeting on a positive note.
Periodic evaluation of the program will ensure its viability.
- Leader must be dedicated to the cause of helping and caring.
- Assess the needs of the individuals and the group as a whole.
- Plan programs.
- Recruit members.
- Set up meetings.
- Distribute information.
- Finding other speakers such as a physician or other professional is always a good idea.
- Publicize the support group.
How Do You Get the Word Out?
Getting the word out is mostly about networking. Your church or synagogue may print an announcement in their newsletter.
Distributing flyers around the area and placing announcements in the community calendars of local newspapers or Web sites can be helpful.
Remember to put in a phone number, email address or Web site and when you can be reached.
Depending on the disease or illness, you should talk to local physicians that treat patients with that disease.
He or she will refer caregivers of patients living with that illness to you.
Maybe the doctor will even post a flyer in the office.
Remember, whoever the contact person is, he or she should always remember that the first contact is the most IMPORTANT!
This person may be the deciding factor when a caregiver is considering attending the first meeting.
Often they will make an announcement welcoming your support group. Many times, public or community relations departments will assist you so it never hurts to ask.
Also, try to speak at some of the nurses’ meetings and let them know about the group. Nurses would be delighted to be able to point a caregiver in the right direction for support.
Don’t forget, local TV and radio stations also accept Public Service Announcements.
Now you have a list of names and telephone numbers and where and when you think you would like to meet.
First Meeting!
The first gathering may be a small group of five or six people. Still, a great deal can be accomplished.
Remember, sometimes it takes quite a while to get the group up and running. Be patient, and remember if you help just one person, you have done an excellent job.
You might think that the challenge is getting people to come to your first meeting, but it may not be difficult at all.
The real challenge is getting them to keep coming back!
- Set up two tables, for registration and refreshments. Perhaps the co-leader or a volunteer could be at the refreshment table and help people get accustomed to the new environment.
- The registration table should have a dated sign-in sheet with a space for name, address, phone number and e-mail address.
- Arrange the seating in a circle or semi-circle. This facilitates conversation and a friendly atmosphere.
Remember, your goal is to provide an open environment for the exchange of thoughts, feelings and information that doesn’t go beyond the group setting.
There should be room for laughing, hugging, crying and bonding; or quietly sitting and listening. Never let any one person take over the conversation for too long; you should allow everybody to get his or her chance to speak.
You may have to interrupt and say, “Maybe we should see what Mary thinks about that.”
- If you have a speaker, be sure to allow time for a question and answer period following the speaker.
- Restate the primary goals of the group; this will help to give the group direction.
Suggestions for Meetings “Icebreakers”
- Lets get acquainted today.
- Tell us the most difficult thing you had to handle this week.
- Remember, the best way to get a good idea is to get a lot of ideas in front of the group.
- Coping with caregiver worries.
- Conquering caregiver fears.
- Health strategies for active caregivers.
- Taking care of yourself.
- Companionship, love and caregiving.
- Coping with the Stress.
- Understanding this disease
Keep it Going
The leaders and coordinator must take ownership of the process and remember to rotate some responsibilities.
In the beginning, the group will focus on the disease information process, prescription comparison and common symptoms and afflictions.
It will take time to move to a wide variety of common topics. Eventually, all of the clinical things get known and broader and more common problems get discussed.
It is not unusual for a group to go for years and to have upwards of 100 members.
They come and go as their needs and schedules require and as their personal caregiving circumstances dictate.
It’s also a good idea to keep a log of the meeting date, time and discussion topics of that meeting.
It helps resolve issues, arguments and scheduling later on.
Informal Research
In time, the group may wish to look into assessing the effectiveness of the information and support it provides.
When new caregivers first begin to attend the meetings, you can ask caregivers to fill out a reliable depression questionnaire; when done again in six and 12 months, you could then prove the positive outcomes of the support group.
Periodically surveying all caregivers for suggestions, additions and deletions to the program provides an anonymous forum to allow for constructive change (or at least its discussion) within the group.
Conclusion
Caregiver support groups are an invaluable tool to helping others and oneself deal with the consequences of being a family caregiver.
Taking the initiative to begin one and follow through is a major commitment, but with unlimited rewards.
Once you are up and going, you will really appreciate and love it.
It is one of the best things I ever did in my life, and I am so grateful that I could really help and give back to the community.
Self Care *
Care For The Caregiver *
Support Group
Patients Seek Moral And Medical Support Online
Source: NPR.org
In the early 1980s, Pat Furlong learned that both her sons had an extremely rare form of muscular dystrophy called Duchenne, a fatal genetic disorder that affects about 20,000 boys each year.
After the diagnosis, Furlong's doctor told her that there was no hope or help available. He told her, "Just take them home and love them," Furlong says. "They're going to die."
Furlong ignored that advice. Instead, she created Parent Project Muscular Dystrophy, a non-profit organization focused on Duchenne Muscular Dystrophy.
Today, the organization has more than 3,000 members — parents, grandparents, doctors, researchers and patients — who visit the organizations' website to find advice and comfort from others coping with the disease.
A
joint study between the Pew Internet and American Life Project and the California HealthCare Foundation finds that one in five Internet users go online seeking others with similar health concerns. And after receiving a diagnosis, especially for rare diseases, an increasing number of people are turning to the web, in the growing trend that the Pew project calls "peer-to-peer health care."
"When we first started there was no Internet," Furlong tells NPR's Neal Conan. "You were quite isolated. It was unlikely even at the doctor's office that you might see another family."
But as the Internet became more accessible, Furlong and her group founded a
website, and soon established an online message board. "But it wasn't a conversation," Furlong says. "It was really snippets of conversation that may or may not be answered."
The site has since developed a fully interactive community chat room "where people are having conversations about care, about research, about support, about clinical studies," says Furlong. "This has really evolved over time."
It's not only those with rare diseases — or even with diseases at all — who are using online health communities, says Susannah Fox, associate director of digital strategy for the Pew Internet and American Life Project. "We found that it's people who are the 'worried well' who are reaching out to find other people like them," she tells Conan. And, "one of our key findings is that half of health searches are on behalf of someone else."
But for those who do have a medical condition and are in search of support, "there's probably a group for almost every disease," says Fox.
Users "are most interested in knowing that they're not alone ... it's this impulse that we have to share our stories and to find other people like us.
Someone who's just ahead of you on a decision [about treatment] might be the exact right person to give you advice."
Parents using the Parent Project Muscular Dystrophy site also look to one another for physician recommendations or clinical study opportunities, Furlong says.
"So this really evolves ... depending on the age of the child and the degree of progression" of the disease.
Peer-to-peer health care now extends far beyond chat rooms and other online forums, Fox notes, as people seek out visual information about their diseases.
"If you do a search for medical terms on Flickr," the photo-sharing site, "you will see people posting photo essays about their own chemotherapy," she says.
"So if you're about to go through a certain kind of treatment or a certain surgery, or if you're curious about the progression of a disease, you can go on the Internet in advance and prepare yourself."
Patients can even watch surgeries on YouTube, Fox adds.
Looking for medical information online is sometimes discouraged by doctors, who are concerned that people will misdiagnose themselves, or find inaccurate information.
But Fox says the Pew data indicate that peer-to-peer health care users are no less likely to seek out professional medical attention.
"People are not turning away from health professionals," she says. Over 90 percent of the survey respondents "say they want to talk to a health professional if they need information about prescription drugs, if they need a referral ... all those technical details about health care.
People still want a health professional to be at the center.
But, she says, "they talk to peers and friends when they need day-to-day tips and more practical advice.
The Internet is turning out to be the perfect mechanism to get access not only to information, but also to each other."
"You will not find a more passionate detective," Fox adds, "than a mom who is trying to find out what she can do for a child."
Related NPR Stories:
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