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Start your own Support Group
Introduction and overview
 OrganisationThe
Medical Advisor
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Organisation
If you are interested in starting a support group you will need to find
members. You will need to have people committed to the goals and objectives
of the group who are prepared to spearhead the organisation.
It can be daunting to think about the tasks ahead, and taking on the
responsibility of a support group is not easy. It can be hours of hard
work, and it often costs money – which the group may not have.
However the rewards from helping others to come to terms with a diagnosis
of herpes, and to normalise their experience are well worth the effort.
In both new and existing groups, the members must get together to define
what activities to pursue and who will be responsible for organising
or co-ordinating them. It is important to share the tasks around to
avoid “burn-out” and to get motivation from each other.
There
are several things that need consideration.
- The support group will need to decide how other people can reach it
– by correspondence, by telephone or both. Specifically, the group
will have to decide whether to secure a post office box or use an individual’s
mailing address or email address. A generic address is often more reassuring
to new members, and is more confidential, but does have a cost involved.
Similarly the telephone may be a hotline, or an answer machine, or a
line that is answered by the members. The group will need to define
who will be responsible for telephone inquiries. Once again funds may
be required.
- Confidentiality is an important issue, both in relation to correspondence
and responding to the telephone. All support group members need to be
assured that their own confidentiality will be protected, but also need
to be counselled on how to maintain the confidentiality of others. This
is an important issue and it is vital that the needs of everyone be
respected.
- Planning how often to meet is important but will also be determined
by the meeting space, the energy of the members and the needs of the
participants.
- Decision making – The members will need to decide on how decisions
are made. For example, they may wish to appoint a steering committee
to run the group, or perhaps opt for group consensus.
- Responsibilities – The group will also have to decide who will
be responsible for facilitating the meetings and for administrative
issues such as looking after member’s personal details (address/phone
numbers for making contact).
- The format of the meeting will also require discussion.
The Medical Advisor
As with any patient activities, you will need to enlist the support
of a medical advisor who can provide your activities with scientific
in-put.
Access to accurate and up to date health and medical information is
an essential part of the support group programme. Questions may arise
in group meetings that require an immediate response. It is helpful
to have the support of a health/medical professional who is knowledgeable
about genital herpes and sensitive to the personal issues involved.
This is a very important role, and crucial to the success of the support
group. The medical advisor does not need to attend every meeting, but
needs to be available to respond to requests for information. This person
should keep the group up-to-date with the latest medical information,
treatment options and research.
The relationship between the support group and the medical advisor will
vary from group to group.
The person chosen may be a health educator, nurse practitioner, physician’s
assistant, nurse, doctor or any other health care professional who is
knowledgeable about the herpes simplex viruses, and who keeps abreast
of HSV related research. They need to be empathetic to the personal
issues associated with herpes, and willing to serve on a voluntary basis.
To find a
suitable medical advisor, contacting local sexual health clinics or
medical centres where patients with herpes regularly visit. This will
vary from country to country.
Finding a Place to Meet
People often find it easier to remember when the meetings are if they
are on the same date and at the same location from month to month, for
example the first Saturday of each month in a room at the local library.
This promotes a feeling of permanence, security and anonymity. Ideally
the meeting place should be centrally located and provide a variety
of free or low-cost conference rooms, but these are usually easy to
find. Below are some suggestions:
- Local community centres are in high demand. You may need to ask how
far in advance you would need to book the room.
- Churches or Synagogues often offer conference rooms and can be gracious
in reserving them for an extended period of time. However the location
may discourage some people from attending.
- Hospitals, clinics or healthcare organisations sometimes provide a
central meeting place, as well as medical information, counsellors and
materials, and can also refer people to the Support Group.
- Local libraries offer conference rooms, but like community centres
these can be in demand. Libraries can also refer the Support Group to
other locations. Directories of community services can be found at most
libraries. These directories contain listings of community groups and
educational, health, social service and cultural organisations offering
programmes and services to the public, including meeting spaces.
-
Government buildings sometimes offer free meeting spaces, but can be
intimidating to first-time participants.
- Counsellors or physicians may offer access to office space.
- Holistic health organisations including massage, yoga, and wellness
centres can often provide a quiet, supportive place to meet. However,
fees may be charged.
- City recreation departments may offer access to meeting space.
- Meetings at Support Group members’ residences – Support
Group members may volunteer their homes for the purpose of the meeting.
These meetings have a casual flavour.
Publicising Meetings
The following are some suggestions of ways to gather participants for
the Support Group meetings. See Section 4 for more information on media
and publicity.
- Personal referrals are an effective means of informing others about
your support group. Consider contacting people or organisations that
see people with herpes, including health care practitioners and therapists,
sexual health centres, local medical centres, crisis hotlines, social
service organisations, and women’s centres.
- Fliers can be an effective way to announce meetings or recruit volunteers.
Consider where potential Support Group members might be found and arrange
to post fliers. Fliers can often be displayed in physicians’ and
therapists’ offices, women’s centres, sexual health centres,
community centres, health clubs, healthfood stores, pharmacies or doctors’
surgeries. The flier should state the group’s purpose, that meetings
are confidential, where and when the meeting will take place, and an
address or telephone number for further information.
- Community calendars in local newspapers can be an effective way to
reach people and are often free. Notices or press releases should be
sent in advance of publication deadlines.
- Public service announcements (PSAs) can raise awareness about Support
Group meetings to large audiences and are free. The Support Group’s
flier, announcement, or pre-written script can be sent to local television
and radio stations.
- Press releases can be distributed to media including local press to
increase awareness among the general public, media, and local medical
community about the group, events and other activities.
- Community or social service directories often include Support Groups
in their listings.
- Local industries newsletters or periodicals. Public relations staff
should be contacted for information on placing advertisements in these
publications.
- Telephone listings in the “yellow pages” are another way
to reach people, but can be expensive.
- Letters to the editor explaining the Support Group’s purpose
and including contact information can be effective. The Support Group
should respond to articles in the local media about herpes.
Keys to Success
- All information must be medically accurate and up-to-date
- The group must have credibility with the key medical referring groups
For the support group to be successful there are some pitfalls that
you will need to be aware of:
- Sometimes you will have individuals with personal agendas – e.g.
a person pushing alternative therapies, or looking for a dating group.
- The group can sometimes be dominated by people for whom herpes is
a major life issue – either physically or mentally. These people
often transfer their own experience onto others. It is these issues
that often make healthcare professionals wary or skeptical about referring
patients to support groups. It is therefore important to have a liaison
with the medical professionals to prove that the group is credible and
medically accurate.
Patients Reaction to Herpes Diagnosis
and the Role of Support Groups
This section contains an expert from a presentation by
the New Zealand Herpes Foundation and Focus Research, Auckland entitled;
‘A framework to understand different coping strategies of people
diagnosed with genital herpes.’ This section can be downloaded
as a PDF alone, or can be viewed as part of this whole sections dowloadable
PDF.
A Framework to understand different coping
strategies of people diagnosed with genital herpes