Recently I was reminded of how much I love my son’s physical therapist. They added yet another diagnosis to his list of Benign Hypermobility Syndrome, and the rheumatologist prescribed physical therapy, and 60 minutes of aerobic activity 6 days a week. What?! While I immediately panicked, picturing my 11 year old son at an aerobics class, Mary, our PT, quietly and thoughtfully came up with a plan that perfectly matched my son’s personality and abilities.
How I love Mary, let me count the ways. I think what I like best about Mary is that we’re a team, partners that do our best to improve my son’s health. There really is nothing better than that.
I can remember a time before we met Mary when I didn’t feel so included. I remember leaving doctor’s or therapist’s offices feeling confused, uncertain about treatments, out of my comfort zone and sometimes even lonely. Nothing is worse than feeling unsure about a healthcare provider for your child. At the same time I think one of the hardest things to do sometimes as a parent, is to recognize when a relationship isn’t working, and then make a change. In our town there aren’t many pediatric specialists to choose from.
Here are some ideas to explore to help decide if your ‘Team’ is as healthy and positive as it should be.
- Parent-Professional Partnership.
Ask yourself if you feel like you’re really a partner in the relationship, or is it more of a situation where they are the experts and you feel like you can’t give input, and/or aren’t asked for your opinion? The parent point of view is critical to creating ideal outcomes for a child. As parents/caregivers, we have insight into our child that no one else does. The concept of the Parent-Professional Partnership is a real thing, and its based on principles of shared decision-making, and mutual respect and understanding. This partnership is part of providing Family-Centered Care, care that incorporates the family’s ideas and beliefs.
- Family Centered Care:
Here is a concept that a provider should understand and embrace as part of their practice. According to the Maternal and Child Health Bureau, Division of Services for Children with Special Health Needs, Family-Centered Care assures the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship.
The foundation of family-centered care is the partnership between families and professionals. Key to this partnership are the following principles:
- Families and professionals work together in the best interest of the child and the family. As the child grows, s/he assumes a partnership role.
- Everyone respects the skills and expertise brought to the relationship.
- Trust is acknowledged as fundamental.
- Communication and information sharing are open and objective.
- Participants make decisions together.
- There is a willingness to negotiate.
Based on this partnership, family-centered care:
- Acknowledges the family as the constant in a child’s life.
- Builds on family strengths.
- Supports the child in learning about and participating in his/her care and decision-making.
- Honors cultural diversity and family traditions.
- Recognizes the importance of community-based services.
- Promotes an individual and developmental approach.
- Encourages family-to-family and peer support.
- Supports youth as they transition to adulthood.
- Develops policies, practices, and systems that are family-friendly and family-centered in all settings.
- Celebrates successes.
Sources: National Center for Family-Centered Care. Family-Centered Care for Children with Special Health Care Needs. (1989). Bethesda, MD: Association for the Care of Children’s Health.
Bishop, Woll and Arango (1993). Family/Professional Collaboration for Children with Special Health Care Needs and their Families. Burlington, VT: University of Vermont, Department of Social Work.
Family-Centered Care Projects 1 and 2 (2002-2004). Bishop, Woll, Arango. Algodones, NM; Algodones Associates
If you don’t feel that your providers adhere to the above ideas, and/or you just don’t feel right about something, trust yourself, maybe it’s time to explore other options. Check with friends, or ask providers you love for a recommendation and then be sure to verify that they’re an in-network provider for your healthcare plan (made that mistake a few times!). For more information, check out these websites:
- Family Voices: familyvoices.org
- National Center for Family Centered Care: fv-ncfpp.org
Sometimes, I find I’m a really successful decision maker when I think about how I feel when we’re with that provider. Do I leave feeling ‘less than’, like the person doesn’t know who we are as a family? Or do I leave feeling empowered, with a sense of calm and acceptance? I also have a sort of ‘guiding mission’ for my kids—I always want to be selecting therapies and professionals that support and accept my kids for who they are, and where they’re at in their lives. The goal isn’t to make them identical to their peers, or a definition in a medical textbook, it’s to provide them with therapy, education and support so they can be the best person they can be in the world. If someone doesn’t support that, then it’s time to say goodbye!