Members of each care team usually include doctors and surgeons treating the patient, at least one nurse involved in direct care, a patient representative, therapists who deliver services, a social worker, perhaps a child life specialist, and the parents.
Yes, you read that right. Parents of children undergoing lengthy treatment should be part of the care team. They should be present at any conferences called to review and discuss their children’s care. It can be mighty intimidating to sit around a table with professionals with a bunch of letters behind their names. But dads and moms are valuable members of the team because they are the number one experts about their kids.
Six Strategies to Foster Care Team Unity
Parents can enhance their effectiveness on the team by building unity among its members. These six strategies, adapted from the University of Iowa’s Coordinated Care Manuel, can help parents build unity.
1. Develop good working relationships. Show that you care about others as people. Remember that they have lives and families. Express appreciation when they go above and beyond the call of duty or spend time beyond the regular work day with your child.
2. Talk openly and constructively. If you see a problem, bring it up. But instead of demanding it be fixed, suggest possible solutions. Ask the other team members to join in a problem-solving session.
3. Respect the knowledge, skills, experiences, and qualities of other team members. Don’t be intimidated by a doctor’s training or a therapist’s technique. But do respect and be grateful for their life saving abilities. Listen to their advice and suggestions and then weigh them carefully before making decisions.
4. Make your family’s background, culture, and interests known. Hospital workers will be able to interact more effectively with you and your child if they know what language you speak, what foods your child likes, what holidays you celebrate, and your faith background.
5. Do your best to work out differences and problems. Even though your emotions may be raw and your body tired, try not to lash out. Rein in your anger and frustration and go through the proper channels to work things out.
6. Pursue excellent outcomes for your child. Keep asking what’s best for your child. What therapies can help? What medications are effective? Which ones have side effects? Where is the best treatment center located? Ask those questions and more until you are sure your child will receive the best outcome possible in your situation.
What to Do When a Problem Can’t Be Resolved
If you’ve tried all the above strategies and still have concerns about your child’s level of care, talk privately to the patient representative assigned to the care team. In the absence of a patient representative, contact the hospital’s patient rights department. If all else fails, contact your state’s health care regulatory department.
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Jolene is the author of the Different Dream Parenting series for parents of kids with special needs, and she speaks at conferences around the country. Her blog,www.DifferentDream.com, provides resources and encouragement for parents of kids with… Read More
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