1. Lifting the Family Voice: A Provider and Parent Perspective on How to Maximize the Family Voice in Clinical Practice
Emily Meyer, MS, CPNP, APNP, American Family Children’s Hospital, University of Wisconsin-Madison Hospital and Clinics
Sandy Tierney, PhD, MSSW, Waisman Center, University of Wisconsin-Madison
Background and Significance
Establishing a Strong Relationship
Empowering Questions for Families to Ask Providers
Who else should my child be working with/seeing?
Who else do we need to ask to help our child work toward this goal?
What do you see as my child’s biggest strengths?
What do you see as my child’s biggest challenges?
What can I expect my child’s future to look like?
Given what you know about my child’s condition and personal strengths and weaknesses, what do you anticipate his or her capabilities will be as he or she ages?
What do we need to help our child achieve this goal?
What can you do to help our child reach this goal
What do you see as the three most important things we do next to help our child reach the goals we have set for our child?
What do you see us or our child giving up in order to reach this goal?
Where can I find additional information about my child’s condition?
When will I know more about my child’s future?
When will I know more about what my child’s strengths and challenges?
When would you expect my child to show progress toward the goal we have set?
How do I tell whether a source of information is providing accurate information?
How realistic do you think the goal our family would like to achieve is for our child?
How long do you think it will take for our child to reach this goal?
A strong provider-family relationship
is collaborative and bidirectional;
each participant takes an active role as both an educator and a student
The relationship between providers and patients and families has evolved over time. Providers no longer do “to” or “for” patients but rather do “with” them. This is the essence of patient- and family-centered care (PFCC), which has been shown to lead to better health outcomes, improve patient and family experience of care, increase clinician and staff satisfaction, and improve resource allocation.1 The four PFCC core concepts are integral to caring for children with disabilities.
Dignity and Respect. Health care practitioners listen to and honor patient and family perspectives and choices. Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care.
Information Sharing. Health care practitioners communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Patients and families receive timely, complete and accurate information in order to effectively participate in care and decision-making.
Participation. Patients and families are encouraged and supported in participating in care and decision-making at the level they choose.
Collaboration. Patients, families, health care practitioners, and health care leaders collaborate in policy and program development, implementation and evaluation; in research; in facility design; and in professional education, as well as in the delivery of care. 1
Incorporating the core concepts into clinical settings can be more challenging when families and providers do not:
speak the same language (literally and figuratively), share the same culture (medical vs. family culture), or understand each other’s role, perspective, or goals
understand how to best communicate information that is important to the other
Effective collaboration occurs when providers integrate a family’s values, beliefs, and cultural background while supporting the family’s participation to the degree they choose and in a way that works best for them.
EDUCATOR
STUDENT
FAMILY
Tell provider about yourself and your child
Explain your own values
List your goals
Describe your strengths
Acknowledge your challenges
Prepare for appointment: what do you already know, don’t understand, want to know about, etc.
Understand how you learn best: listening, seeing or doing
Actively listen and ask questions
Be open to new ideas
PROVIDER
Explain your title and role
Tailor education to patient and family
Verify understanding: use the “teach back” method
Get to know the family and child
Actively listen
Ask questions about goals, values, strengths, challenges, knowledge, learning styles, fears, hopes, etc.
Setting Goals
Children with disabilities attain positive health outcomes when providers and families create relevant, family-centered, realistic and achievable goals. With a solid relationship as a foundation, empowering questions can be asked and effective goals can be created.
Two goal-setting techniques that incorporate the family voice:
1. Motivational Interviewing2
Facilitates intrinsic motivation for long-lasting change
Internal motivation is more effective than external motivation
Provider asks open-ended questions, gives affirmations, listens reflectively and summarizes periodically
2. Develop SMART Goals3:
Specific
Measurable
Achievable
Realistic
Timely
Purpose
Empowering Questions
This poster presents a provider and parent perspective on how to maximize the family voice in the clinical setting through establishing a strong relationship, asking empowering questions, and setting realistic and achievable goals.
Knowledge is power.
Asking good questions lifts the family voice, empowers the family and provider, and deepens their relationship.
Empowering Questions for Providers to Ask Families
Who else is involved in your child’s care?
In the home, at school, other medical providers, therapists, etc.
Who provides support to you and your family?
What does a typical day for you and your child look like?
What makes it a good day?
What makes it a bad day?
What have you been told up to this point?
What is your understanding of this?
What does this mean to you?
What does this look like to you?
What is most important to you and your child?
What do you value?
What are your goals for your child? For now, the next month, next year, 5 years from now, etc.?
What do you think will help your child reach these goals?
What do you feel are barriers to reaching these goals?
What are your, and your child’s, strengths? What do you think are your weaknesses?
What has worked well for you in other appointments? What does not work well?
What resources do you use?
Where do you live? (location, presence of stairs, etc.)
Where else does your child receive care?
When would be a good time for you to discuss short-term and long-term goals?
Why do you feel __________ (frustrated, hopeless, hopeful, encouraged)?
How can I best support you and your child?
How do you learn best?
How do you search for further information?
Lingering Questions
How does a provider navigate a discrepancy (e.g., a family goal that is not compatible with the child’s level of disability) in a compassionate way?
How does a parent navigate when the provider doesn’t seem to recognize the patient/families’ goals and hopes?
How should goals be documented in the medical record?
How do we track progress toward the goal?
A solid relationship, or foundation, allows families to share their concerns, hopes, and dreams for their child so that they can develop patient- and family-centered goals in conjunction with a provider who understands the family’s values and perspective. When the family voice is heard and understood, a provider can use their knowledge of the family’s strengths and acknowledge the family’s challenges to inform their clinical practice so that the provider and parents can work collaboratively to provide the best care for the child.
References:
1. Adapted from: Johnson, B. H. & Abraham, M. R. (2012). Partnering with Patients, Residents, and Families: A Resource for Leaders of Hospitals, Ambulatory Care Settings, and Long-Term Care Communities. Bethesda, MD: Institute for Patient- and Family-Centered Care Reprinted with permission from the Institute for Patient- and Family-Centered Care:
2. Emmons, K.M. & Rollnick, S. (2001). Motivational Interviewing in Health Care Settings: Opportunities and Limitations. American Journal of Preventative Medicine, 20(1),
3. Doran, G. T. (1981). "There's a S.M.A.R.T. Way to Write Management's Goals and Objectives", Management Review, Vol. 70, Issue 11, pp