Support Groups
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Please note that the following represent each family's individual experiences and beliefs. Every family is different, and the needs and feelings of the children involved will be unique. We encourage you to seek professional advice if you have concerns or questions with regard to these issues.
Responses to Family Room
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Kids With Heart provides families with a variety of services: parent matches, meetings, and a parent library.
Our meetings are held in parents' homes. Many people fear the hospital and the memories it brings back are of traumatic experiences. Therefore, inviting other heart parents to your home gives them a more personal feeling. We also have a social hour after the meetings, with snacks provided by participants.
Our parent meetings usually have a main topic, however, we respond to the parents who are present as to what their needs may be at that particular time.
The meeting that had the biggest response was one at which a social worker was present to address any issues the parents had- including dealing with your heart child when they are a little older- ages 7 and up. Also, speaker presentations by the pediatric cardiologists are very well received. In 1993 we had two pcs and two nurses from the Children's Hospital of Wisconsin This past fall, Dr Ray Fedderly from Children's Hospital of Wisconsin (he had a heart defect himself) was our guest. He answered the kids’ questions for the first 1/2 hour. Then the children went to another room for movies and snacks (we had sitters present) so the parents could ask questions as well. We had over 100 people attend and the feedback was very positive.
Children's Hospital was obviously impressed by what the parents were looking for and on February 8, 1997, a Saturday to accommodate baby sitting and employment, they hosted their first cardiac parents' workshop. The subjects ranged from financial resources available, nutrition of CHD children, cardiac surgery- what parents' should know, among others. They now hope to make this an annual event.
Kids With Heart also offers family events- the Children's Christmas Party, the family picnic, and a fall event. This is valuable for the kids to see other kids who are dealing with similar situations. Children's Hospital has also picked up on this need and last year, hosted their first annual Heart Center Picnic.
Michelle R.
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Hello to all. My name is Tricia Christensen and I am in the early stages of running a support network for families in the California North Bay area. I'd like to say I was drafted into this by the birth of my wonderful son, Gerard, who has complex congenital hearth anomalies.
In short the services my group Hearts for Hearts' Sake aims to provide are : parent-to-parent support, parent matching, social gatherings and a quarterly newsletter. The newsletter will be a means of relaying pertinent medical information, introducing local families and their children, featuring local cardiologists and surgeons ,and providing affirmation, support and the sense that the reader is not the ONLY person in the world with a child with a heart defect. Through distribution of the newsletter and pamphlets, I also hope to encourage more families to join our group and database, thus expanding our other services.
Early in the formative process of starting our network, I made the decision not to try to offer support meetings on a regular basis. In speaking with other directors of groups like mine, I found that a number of groups had difficulty keeping the meetings going after an initial surge of interest. As children grew older and were "fixed," or, as unfortunately, some families lost their children, interest in a group based solely on support meetings began to wane. I know that this is not always the case. However, I felt that by offering more of a network that was based upon one-on-one contact, and that would actively solicit new members by staying in contact with the "heart" hospitals and their employees, our group would have a better chance of staying in place for all time rather than a few years.
As our database of family members grows, we will increase our numbers of "contact" parents, those parents who will counsel and aid incoming members to the group. It is my goal to try to match every family that comes in with a contact parent who is in like circumstances. This will not always mean defect to defect. A parent might be desirous of speaking with someone whose child's defects were diagnosed prenatally, whose child had a particular doctor, or who has a child in the same age range. So as I write up each new family, I try to gather as much information as I can, such as age, siblings, hospitals, surgical procedures, diagnosis,and physicians.
I had also been advised by others that it is important to make sure that each contact parent gives roughly the same quality of support to incoming families. Parent matching survives or fails by the efforts and amount of support offered by contact parents. With this in mind, I will soon be coordinating a training session for all parents who would like to provide counseling for others, so that I can trust to the quality of support that will be received by incoming families.
As for other forms of support, mainly monetary, we are as yet sort of coasting along with a patchwork of offers from some local organizations. One of the most difficult aspects of forming this group thus far has been that nonprofit status is well out of our reach financially. It is a vicious circle where one cannot raise the money to gain nonprofit status simply because one is not nonprofit already. I am hoping at this point for one of two things to happen. We are currently working closely with Mended Hearts, a national organization mainly for adults who have had heart surgery or heart disease. We are hoping that Mended Hearts may be able to shelter us under their status through affiliation. Another possibility is that our organization may be supported by the UCSF pediatric council, but as yet no decision has been reached.
Our first newsletter was graciously copied by the AHA, and the cardiology department at UCSF generously paid to mail and distribute it. Clearly both UCSF and Mended Hearts recognize the need for such an organization to exist, but neither have given us a firm commitment of financial support.
I am eternally optimistic that the support will be there, somehow, as I begin to realize the needs of running this sort of group. I certainly need another phone line, as I am always Online working on my web pages and trying to promote our group through the internet. And I can certainly also envision my mailing costs growing tremendously as more people join our group.
Running this group thus far has been such a challenge and such a reward. Daily, I am told by new members how MUCH they NEEDED this type of support to face the rigors of having a child with heart problems. They echo my own thoughts, when I looked for support and found nothing available. I would urge all who are considering forming a group to, as the commercial says, "Just Do It!" It is a way of healing the self as well as the many others who deserve support, empathy and information as they raise their incredible "heart" children.
Tricia Christensen
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| Adult Congenital Heart Disease patients are a very unique group. Having survived into adulthood many patients are now faced with special concerns :medical, financial, emotional. Many patients have been discriminated against or "set apart" because of their condition, and a social/support group would likely help patients to find others with whom they can relate, and share encouragement.
In addition, the formation of a support group specifically designed for such patients might help ease the difficult transition from pediatrics to adult heart patient responsible for continuing cardiac care and participating in their own treatment. Further, a group like this could draw attention to the need for adults with CHD to be seen in a tertiary care facility specializing in treatment of such patients.
Adults with Congenital Heart Disease need to establish a network of information and support. ACHD'ers often feel isolated, because in many cases, they have never met anyone with a similar condition. They also feel set apart from the main population, because many feel that they have been discriminated against or left out in a variety of forums ranging from the work place and school to insurance companies, to doctors who are not adequately trained to treat a patient with such a complex or rare condition or defect. By joining together as a group, ACHD patients could share information and experiences, which would help them to get a more realistic perspective of their condition and limitations and abilities. It would also provide a source of emotional support.
Many patients have difficulty making the transition from pediatric patient to adult patient. They have become passive about their condition and their treatment, and many do not have a good understanding of their situation. By discussing congenital heart disease with others, patients would have a forum where they could become more educated about their condition, treatment options, and "risky behavior".
The group should provide services to support patients. For example, there should be: social events, guest speakers or presentations, patient matching, in hospital support,newsletter.
There should be support for pediatric chd patients. The group should help support pediatric patients, possibly including the younger patients by hosting an annual event designed for them, and also by supporting programs such as summer camps.
R.B.
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Support Groups page 1
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