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What Can I Do? |
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Form Partnerships
Families have told us that a number of activities have helped them reduce
the stressful parts of parenting a child with medical or genetic problems.
Reducing the stress allows them to make more room for what every family
wants: to enjoy their child. Activities include: forming partnerships with
their child’s providers and playing a active role in all levels of
decision-making, becoming an expert on their child’s concerns and learning
to advocate for those concerns, and getting involved with other families
with similar or related concerns.
Last Update 6-18-04
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Selecting Your Team
One of the most important challenges of parents of children with complex
medical needs is the selection of their child's team of caregivers. Some
parents coordinate, manage, and recruit each member of their child's team of
caregivers. These caregivers can include a variety of people. Most teams
include medical providers like primary care doctors and specialist doctors.
Often, there are speech therapists, physical therapists, occupational
therapists, teachers, aides, and/or tutors. Other members might be
counselors, psychologists, neuropsychologists, psychiatrists, baby-sitters,
grandparents, friends, and
neighbors.
While parents look for caregivers that are highly skilled and accessible,
they also search for someone with whom they feel the greatest level of
comfortable communication. They look for caregivers they can ask any
question and to whom they can communicate their needs without embarrassment.
Families seek providers that are comfortable learning as
well as teaching. They look for providers with whom they can form
partnerships.
With so many different knowledge bases and sometimes priorities, members
of the team may raise conflicting concerns and recommendations. The family
then learns how to weigh all the information, finally choosing what works
best for them. One strategy that has worked for many families includes
teaming up with other local families. Aside from the benefits of sharing support, these partnerships can help identify areas of concern, encouraging
additional resources and expertise within the community.
Certainly, no one knows a child better than his/her parents. While
doctors and other caregivers may have condition-specific information, only
parents can determine if and how that information relates to their child.
Over time, many
families become experts on their child's diagnosis. Often families take
this opportunity to teach their providers
what they know. In this way, they become advocates not only for their child,
but also for other children.
Strategies for before, during, and after an appointment are outlined
below (edited from April Linette Leaman's ideas
presented on-line at the EDNF web site).
Last Update 06-18-04 |
Before the Appointment
Briefly write down significant medical history. Include episodes of major
illness, hospital admissions, ongoing medical or behavioral problems, and
medications. This summary can help guide the health care team when reviewing
the child's chart.
Make a written list of questions and concerns. Leave space to write down
the answers. Meetings with the providers should be an open exchange of ideas
and information. Do not hesitate to actively participate. Here are some
questions that may be good to ask during a genetics appointment:
- What is the diagnosis?
- How accurate is the diagnosis?
- Are there any tests that can confirm that a person has this condition?
- What are the characteristics of this condition?
- Is there a cure or treatment for the condition?
- Is financial assistance available?
- What other specialists do I need to see?
- How likely are my family members to have this condition?
- Who is this condition passed on from one generation to the next?
- Where can I get additional information?
If the diagnosis is known, bring a brief explanation of the diagnosis. If
available, bring any brochures or relevant articles. These can serve as
reminders of the important health concerns.
Bring a list of all the health care professionals involved in the child's
care. Include their names, specialties, and contact information. This can
help bring together the team and encourage to provide an integrated
approach.
Last Update 06-18-04
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During the Appointment
Tell the doctor the reason for scheduling an appointment and what are the
goals for the visit. This will help the doctor to provide the most
appropriate care.
Discuss all aspects of the child's care. Often families are hesitant to
mention something because they fear that their concerns are unimportant.
Seemingly unrelated symptoms or even subtle characteristics may turn out to
be key in determining a diagnosis or the best care program. Parents should
always tell everything and let the doctor determine what is relevant.
Be as clear and descriptive as possible. Do not hesitate to rephrase
questions or concerns if you are unsure that your concerns are not being
understood.
Do not be afraid to ask questions. All questions are important. Sometimes
there is a lot going on at the clinic and it may be difficult to remember
all the questions. Bringing a list of questions with room for your
notes may
be helpful.
Before leaving the office, make sure that all questions have been
answered and you are comfortable with the information presented. If the
provider suggested a diagnosis, prescribed medication, or recommended a
treatment, do not hesitate to ask questions or raise concerns. Ask for
written materials and ask for definitions or how to spell a word.
Last Update 06-18-04 |
After the Appointment
If there are any remaining or new questions, call. If the provider is not
available, another health care professional on the team can help. Genetic
counselors, nurses, or social workers may be available to take the patient's
calls.
Get informed. Subscribe to a newsletter or attend meetings about the
child's condition. Next time you see the doctor, you may be able to share
the most recent information on the child's condition.
Whenever possible, ask for and keep copies of exams, tests, and letters
from the provider.
Other Considerations...
Be informed of health insurance issues. It is helpful to know what are
the insurance privacy regulations, annual deductible, whether a procedure
requires pre-approval, etc.
Protect your privacy. It is important to use judgment to decide who
needs to know medical information about you. Do not give disclosure
authorization if there is a doubt.
Last Update 06-18-04 |
Get Involved
Chat with others at the VCFS On-Line discussion forum:
http://maelstrom.stjohns.edu/archives/vcfs.html
To subscribe to VCFS Email Digest:
1. Send email message to VCFS@maelstrom.st.johns.edu
2. Leave all other lines blank (i.e. subject, CC)
3. Type this message only:
Subscribe VCFS yourfirstname yourlastname
4. Send message
5. If there is a problem, send email to Paula Goldberg: vcfsmom.teleport.com
Contact Regional Support Groups;
The VCFS Eduational Foundation maintains a listing of current national
and international support groups. Their listing can be found on their
website.
http://www.vcfsef.org/SupportGroups/index.htm
Last Update 06-14-06
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