Talking to Healthcare Professionals- Empowering you and your teenager

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Talking to Healthcare Professionals- Empowering
you and your teenager

• Dr. Yvonne Duane
• Principal Clinical Psychologist
• Psychology Department OLCHC

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Overview

• Communication
• Ask Questions Get Educated
• What affects communication
• Adolescence-Transition
• Self-care
• Discussion

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Communication

• As a parent of a child with haemophilia you may
  find yourself communicating constantly with a
  range of health professionals.
• Getting the information you need, ensuring you
  have the right advice and understanding complex
  medical terms can be a struggle.
• The health care system can be complex and
  difficult to understand.
• At times you may feel that you're repeating the
  same information over and over. Caregivers often
  have many questions they would like to ask but
  refrain from asking them..
• Learning the various roles of health
  professionals can be beneficial to ensure you
  have the information you need to best care for
  your child. 

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Communication continued.

• Advocating for your child
• Encouraging self-advocacy
• Communication difficulties between health care
  providers and patients happen every day. As a
  parent, playing an active role in maintaining
  your childs health is essential. This means
  communicating effectively with doctors, nurses,
  pharmacists and other health professionals. Good
  communication boils down to three facts
• Asking the right questions will yield the
  information you and your child need in order to
  make decisions.
• Providing health professionals with the
  information they need is necessary for them to
  make informed judgments.
• Demanding quality care for your loved one is a
  must.

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Ask Questions and Get Educated

• Whether you're communicating on your child's
  behalf or helping him communicate better on his
  own, here are some ways to ensure that he
  receives the best possible care
• Be prepared -this will enable you and your son to
  get the most out of an appointment with a health
  professional.
• Ask yourself, what do I need to know to best care
  for my son?
• Here are some suggestions when asking questions
• Ask the most important questions first  
• State clearly what you need to know and why
• Before each appointment, write down any questions
  you have. Then make sure that the doctor
  addresses your concerns.
• Write questions down before your appointment or
  as problems occur.
• Ask the right questions to the right people  
• Repeat back to health professionals any
  explanations in your own words to ensure you
  understand clearly. 

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Ask Questions and Get Educated (continued)

• If you think it's an emergency use the word
  'emergency' in your sentence to get someone's
  attention.
• Take a note pad to write down any instructions. 
• Keep your teenager involved in the conversations
  about his care as much as possible. An older
  child/teenager may feel invisible at a medical
  visit if his doctor speaks exclusively to his
  parent.
• Its important for parents, children and
  teenagers to feel comfortable with members of
  their healthcare team. Its OK to ask health
  professionals questions and to ask for more
  information.
• Some people find it overwhelming to receive lots
  of information, while others want as much
  information as they can find. It may take a while
  to feel confident to ask questions of the team
• Ask as many questions as you need to, and dont
  worry about asking the same question more than
  once.
• Ask the doctor to clarify anything you don't
  understand.

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What affects Communication?

• Settings Situations - Stress
• Planned appointment vs. inpatient stay.
• routine procedure vs. emergency..
• Advocating for your child or Encouraging
  self-advocacy
• Past experience positive or negative
• Self-confidence
• Attitude of healthcare professional
• Poor communication leads to stress
• When you are stressed you do not take information
  in effectively.you may need information repeated
  several times..

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Communication and Stress miscommunicationEveryo
ne reacts differently to stress..

• Stress affects how you communicate
• Human nature when anger comes in listening goes
  out
• How to stay calm and focused????
• How you respond as an individual to stress is the
  key to helping you tackle stress.

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Adolescence - Transition

• Adolescence is a time of poor communication
  generally
• Think back to when you were a teenager..
• The young always have the same problem how to
  rebel and conform at the same time. They have
  now solved this by defying their parents and
  copying one another Quentin Crisp
• Transition movement from a dependent child to
  an independent young adult in all aspects of
  life. Developing maturity in cognitive, social
  and emotional skills as well as physical
  development.

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Transition Stage

• Generally 12 -18 years but preparation from 8
• 3 parts thinking planning and making the
  transition
• Within the transition stage there are additional
  challenges on top of normal adolescent challenges
  to be negotiated.
• With haemophilia, the negotiation can be more
  complex.
• The normal tendency to separate from family and
  explore and take risks needs more careful,
  consideration and attention in this group.
• Transitional care in the management of
  haemophilia is less about the movement of patient
  care from a paediatric team to an adult team and
  more about the transition of the young person
  from a state of total dependence on their parents
  and carers to one of total independence.

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Adolescence Transition

• What can you do to empower and encourage
  independence
• Each young person is different some more
  independent than others.
• What helpsopen communication
• Plant the seed of self-management as early as
  possible
• Encourage your son to participate and speak to
  healthcare professionals
• Always ask if he has any questions before the
  appointment

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TRANSITION Top tips for Teens on communicating
with their healthcare team (from Steppingup.ie)

• Sometimes health care professionals might use
  terms that you are not familiar with. If there is
  anything you do not understand dont be afraid to
  ask your doctor or other professional to explain
  it to you. It is their job to help you to
  understand everything.
• Write down your questions and bring them with you
  to your clinic visit.
• Use a notebook or your phone to jot down any
  important information and phone numbers that you
  might get from the team.
• If you like, bring someone (parent/guardian,
  family member or friend) with you for support and
  for an extra pair of ears (to remember what was
  said).
• If you have someone with you but want to ask the
  medical team something personal just ask the
  person to wait outside the room until you call
  them.

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TRANSITION Top tips for Teens on communicating
with their healthcare team (from Steppingup.ie)

• Be open and honest and tell your team everything.
  You are an expert on your health so the more
  information you give them the better they can
  meet your needs. Remember that your health care
  team has heard or seen it all before.
• Find out who you should contact in case you have
  any unanswered questions.
• Your team are there to work on your health care
  with you, so trusting them and building a good
  relationship with them will be beneficial to both
  of you.
• If you are finding it difficult to talk to your
  health care team, dont suffer in silence, speak
  with a family member or someone you trust. They
  can speak up on your behalf at your next hospital
  or clinic appointment

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How is your Self-care/ Other-care balance?
Self-care
Optimal other-care, deficient self-care
Optimal self-care, and other-care
Other-care
Optimal self-care, deficient other-care
Deficient other and self-care
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What can help?

• Live a healthy, balanced life
• Regular exercise (recommended physical activity
  30 minutes 5 days per week)
• Healthy eating habits
• Get enough sleep (most adults need between 6-9
  hours per night)
• Time to recuperate/ restful breaks
• Set limits
• Support from partner, friends, other parents
• Time to self. Time to relax - although seemingly
  impossible for many, it would reap benefits even
  if there are some short-term costs.

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How do you manage stress?
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And Finally.

• Remind self at least once a day that you are
  doing a great job as a parent of a child with
  haemophilia!
• Balancing act (naturally inclination is to
  protect your child versus need to foster
  independence-which means facilitating child to
  take some risks)
• Plant the seed of self care from early on to
  foster independence and self-management skills.

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Thank you for listening. Discussion
Questions?