Sue Robbins and Dr Mel Lewis: 'Families partnering with their Paediatricians'

What is essential is invisible to the eye: Families partnering with their pediatricians is a partnership by Dr Mel Lewis of Stollery and the incredibly engaged parent Sue Robbins. Mel Lewis describes herself as Medical Director of Edmonton Down Syndrome Medical Clinic at Stollery, Director of Undergraduate Medical Education, general paediatrician and hockey mom. Sue Robins describes herself as a mom of three, Coordinator of the Visiting Parents Program, Chair of Canadian Family Advisory Network, Freelance writer and photographer and participant in Stollery Family Centred Care Network working on writing and communications. This highly personalized collaboration by parent and doctor exemplifies partnership and is an excellent and contrasting companion to Dr Lindsey Craw's 'Neonatology From A Parent's Perspective' (895 Kb).

Robins and Lewis identify barriers to parents being effective partners as:

- Loss of control
- Fear
- Information overload
- Lack of confidence
- Lack of responsibility
- Feeling hopeless

A series of slides from pp27-39 offer guidance on What families need...

1. Compassionate disclosure of diagnosis (The trajectory of our entire lives is changed with the delivery of your words)
2. Celebration of the birth of our baby
3. Connection with other families
4. Positive clinic experience (There are no traffic jams along the extra mile.
~ Roger Staubach)
5. Human Touch: Time (An unhurried sense of time is in itself a wealth.—Bonnie Friedman), Language (He’s not your buddy. And I’m not your Mom.), Alleviating Fear (Knowing what’s going to happen next helps alleviate fear and anxiety)
6. Build confidence in our abilities (Ordinary parents doing extraordinary parenting; Compliment us if we’ve done a good job; What is routine for you is not routine for us)
7. Hope and Believe (If there were not hope, the heart would break. ~ Ancrene Wisse)

They use K.I.D.S as a mnemonic for staff engagement of a patient:

Here is this doctor and parent tip list for building partnership:

- Respect for the teaching families can provide you and your students
- Be up to date on medical guidelines
- Why are we asking specific questions? Help families make informed decisions about surgery and treatments
- Coordinate one message from all the health professionals.
- It is ok to say ‘I don’t know’