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Next Steps: A Practitioner's Guide For Themed Follow-up Visits For Their Patients to Achieve a Healthy Weight
Next Steps: A Practitioner's Guide For Themed Follow-up
Visits For Their Patients to Achieve a Healthy Weight

Creating a Patient and Family Advisory Council:
A Toolkit for Pediatric Practices


Step Three: Support the Process of Authentic Family Engagement and Involvement

In This Section:

Overview
Practical Supports to Enhance Effective Involvement
Focus Groups
Understanding Family Leadership Development
Essential Skills Development

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Overview


Supporting family advisors to become effective and authentic contributors to your PFAC and to quality improvement in your practice is an intentional process. It requires logistical support for the participants to remove barriers to participation and assist everyone — advisors and staff — to develop the skills to participate with success. Ignoring critical issues can undermine your PFAC and create a sense of frustration and/or failure to achieve your desired outcomes of patient- and family-centered practice improvement.

Some advisory councils report such things as:

  • "Our meetings sometimes last for hours, without results."
  • "One person dominates our meetings; I wish everybody would speak up."
  • "We can't seem to sort out our priorities; we head off in all directions at once."
  • "We make decisions, but then revisit them again and again."

As a practice leader who designs, leads, facilitates or manages the work of your PFAC, you have the opportunity to prevent or solve issues like these.

Consider these two key principles:

  1. Meaningful family involvement is something to be valued and supported by the practice.
  2. Family advisors, like any of the professionals involved in a practice and PFAC, function best with consistent support, clear expectations, understanding of the skills needed and a simple orientation to the tasks they are being asked to do.

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Practical Supports to Enhance Effective Involvement


If your practice has come this far in creating a PFAC, you already recognize and appreciate the value that family advisors bring. If you want your patients and families to fully participate — and participate more than once — it’s critical to remove the barriers that prevent real engagement. Ensure reasonable accommodations for meeting participants by considering the following.

Meeting Logistics

Give consideration to meeting time, accessible locations, transportation concerns and child care needs. Family advisors have limits on their time and resources which inhibit their ability to participate. For example, family advisors may not have gainful employment outside of their homes or may need to take unpaid time away from their jobs to participate. These types of circumstances need to be anticipated and policies, such as modest stipends, can prevent those obstacles from becoming limiting factors. Practices which chose not to address these issues often find that PFAC members do not represent the diversity of their entire practice or that they cannot sustain engagement over time.

Preparing Meeting Materials to Enhance Family Participation

Depending upon the Family Advisors’ level of experience, pre- and post-meeting support may be needed. If a family advisor is unfamiliar with the processes of the practice or the PFAC itself, it may be helpful to hold a pre-meeting orientation session to review key concepts and procedures.

Also remember to consider health literacy and the reading level of all PFAC participants. You should assume jargon isn’t understood by all members. Consider providing a list of commonly used acronyms and a reference sheet for important medical words and terms to be discussed.

Finally, become familiar with Universal Design for Learning (UDL) and how it relates to auditory and visual presentation of materials. Incorporating some basic principles of UDL can make it easier for all PFAC members to enhance access to your information and materials.

Adopting a Meeting Structure that Facilitates Engagement

Be sure to create a welcoming space. Have staff present to welcome everyone, then let a family advisor facilitate the meeting. Use an agenda and walk attendees through it at the beginning, then stay on task.

Before opening up the discussion, ask the group to create some guidelines for the meeting. Capture these guidelines on a large poster and display and confirm them at each meeting. Examples of guidelines might include:

  • Confidentiality: What happens here, stays here.
  • Don’t feel you need to share if you don’t want to or aren’t ready.
  • Keep the tone collaborative by avoiding “us and them” language.
  • Keep meetings jargon-free.
  • Let everyone have a chance to share.
  • Avoid using individual names when something didn’t go well.
  • Think about how your experience connects with the bigger picture.
  • Recognize that this is not a forum to resolve issues for a specific individual.

When new material is distributed, allow time for review if content is directly relevant to the discussion. You should also take care to structure activities so that everyone has a chance to share their view. For example, when asking a question of the group, give participants paper and pens to write down their ideas, then review them one-by-one as a group.

Finally, end on time and have staff say "thank you!"

If your meeting is being conducted like a focus group, see Focus Groups below.

If you are conducting a more formalized meeting, skip down to Understanding Family Leadership Development.

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Focus Groups


If your practice has decided to conduct a focus group as a way to launch your PFAC, here are some ideas and resources to help.

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Understanding Family Leadership Development

  “The practice of leadership requires, perhaps first and foremost, a sense of purpose — the capacity to find the values that make risk-taking meaningful.”

Ron Heifetz,
Leadership Without Easy Answers

Family advisors provide a valuable service by contributing their perspectives as consumers of services to the practice. Family advisors deserve respect and appreciation for their willingness to share their personal thoughts. They have an important role to fulfill as leaders in your efforts to improve your practice. Remaining open to the insights of PFAC members will benefit the discussion.

Family Voices and other family groups, through many years of experience working with PFACs, have learned that when respected and listened to as leaders, family advisors can make a profound difference in the quality of services. This is also supported by NICHQ’s Powerful Partnerships: A Handbook for Families and Providers Working Together to Improve Care.

Survey of Parent Leaders

A simple survey of expectations of parent leaders provides insight into simple yet profound learning. Parent leaders were asked by Massachusetts’ Federation for Children with Special Needs to respond to four questions:

  1. What kinds of information do you need as a leader?
  2. What would you most like to accomplish during the activities?
  3. What would you consider doing to encourage other parents to become parent leaders over the next year or two?
  4. What do you hope your advisory council will accomplish working together?

Replies fell into two essential issues:

Family advisors want to understand their role as a leader.

  • To determine if I can be of value as a leader. I want to give back to my community.
  • I would like to gain knowledge and confidence to help other parents.
  • I hope to become a more effective leader.
  • Develop some skills in moving important issues forward within our community without looking like a group of disgruntled parents.
  • Gain leadership and negotiation skills.
  • Be able to advocate for my son and others who do not have a voice but need help to fit into society.

Family advisors want to understand what their involvement will lead tothey want to make a difference. Here are some sample comments from some family advisors. When asked, “Why did you become involved in a family advisory role?” responses included:

  • I wanted to knit together my son’s services as a cohesive system of supports.
  • To be more connected to our community.
  • To get more parents to come out and get involved, and to collaborate more.
  • To learn what does and doesn’t work in other communities.
  • To learn how we can best support our families, work with school administration, medical community and recreation.
  • To build a consensus, team approach to problem solving with the service providers in my community, schools, medical and social services.

This list shows how many themes are on the minds of parents and family leaders as they come together. They focus on their own children, but also have a wider view of the needs of the community. They also are looking for self-development as leaders who will value training and leadership opportunities as they expand into other realms of participation.

Family Advisors Work Best When Viewed as Part of a Team

This section addresses how to measure the readiness of a group for working together. First we need to define leadership and what roles are particular to parents when engaging in activities as parent leaders. This document lists some of the most important characteristics of effective family advisors.

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Essential Skills Development for Family Advisors and Practice Staff


In addition to the meeting details and logistics, PFAC facilitators will want to provide opportunities for family advisors and practice staff to develop and practice essential skills, which ensure the highest possible levels of engagement.

Below are some essential skills along with activities you can use within your own PFAC meetings to support both families and staff. The learning modules/resources will help PFAC participants expand on fundamental skill development in four crucial areas: storytelling; self awareness and identification; deep listening and respectful conversations; and conflict resolution and cultural collaboration.

Skill 1: Storytelling

Family advisors are first and foremost story tellers of their own experiences. PFAC advisors are called upon to reflect and report on their personal experiences with access to healthcare and of the quality of services. Learning to tell a personal story in such a manner that creates change without embarrassment or over exposure is a critical skill.

Exercise

Storytelling to Make a Difference
This learning exercise brings to awareness the potential power of a story as well as the many ways the listeners might hear it.

Skill 2: Self Awareness and Identification

Self awareness greatly enhances leadership in many settings. Understanding and appreciating who we are and how we differ from others makes it easier to work collaboratively without sacrificing one’s own unique vantage point.

Resource: True Colors

True Colors is a highly regarded, commercially developed tool which is an adapted version of a Myers-Briggs inventory. It is accessible, non-threatening and simple to use. Users complete a self-inventory tool to identify to which of four color types they belong. By identifying their type and gaining a deeper understanding of how personality impacts preferences and behaviors, it becomes easier to collaborate with others.

True Colors and similar tools provide an increased understanding of self and others by expanding the appreciation for the differences among individuals. It offers a universal language that accelerates problem solving, increases trust, and reduces conflict.

True Colors has been used successfully with many family-professional partnership teams to help them work collaboratively. If your practice is associated with a larger organization or health system, check with your human resources or professional development departments to see if your organization uses a validated self awareness program that can be adapted to the needs of your PFAC.

Skill 3: Deep Listening and Respectful Conversations

Improving communication skills around deep listening and respectful conversations allows diverse, and perhaps controversial, perspectives of team members to all be given consideration. Discussions, regardless of the topic sensitivity, should occur respectfully, leading to better working relationships and greater understanding of the perspective of all PFAC members.

Exercises

Here are a number of short exercises you can use with your PFAC to cultivate skills for deep listening and respectful conversations.

Deep Listening
Understanding Difficult Conversations
The Feelings Conversation
The “What I Really Want” Conversation Method
The ORID Conversation Technique

Resource: Technology of Participation (ToP)®

Technology of Participation (ToP)® is a framework offered by the Institute for Cultural Affairs in the USA, which teaches team members how to collaborate on projects and teaches group facilitators how to effectively lead their teams.

Skill 4: Conflict Resolution and Cultural Competency (Intercultural Collaboration)

At its core, the function of the PFAC is to bring together a variety of experiences to generate new ideas which improve patient care. An effective PFAC will bring together a variety of perspectives, voices and essentially cultures. From this variety, conflict will likely occur.

Conflict can be both positive and negative. Conflict can be positive when it helps open up the discussion of an issue, results in problems being solved or new ideas being generated, and releases emotions that have been stored up. It can be negative when it diverts people from dealing with the really important issues, creates feelings of dissatisfaction among the people involved, or leads to individuals and groups becoming insular and uncooperative.

Supporting the development of the PFAC in this regard involves helping members to develop skills which will allow them to leverage the beneficial aspects of conflict while still treating each other with mutual respect.

At an individual level, this requires an understanding of one’s own worldview (culture) and how it is reflected in one’s own attitudes and behavior. It also necessitates that one acquires values, principles, areas of knowledge, attributes and skills in order to work in cross cultural situations in a sensitive and effective manner. These skills are sometimes referred to as cultural competence or intercultural collaboration.

Exercises

The following learning modules will help PFAC members develop some necessary skills for intercultural collaboration.

Early Memories
The purpose of this exercise is to understand the role of reciprocal relationships to help PFAC members empathize and support people from other cultures and backgrounds. Early memories reflect our experiences that have shaped our views of differences.

The Brick Wall and the Gateway
This exercise is intended to help individuals reflect on the experience of respectful conversations and identify best practices. It may also result in a set of meeting guidelines.

Resource: National Center for Cultural Competence

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