Most parents of CSHCN would like to see improvements in the quality and efficiency of our complex health care system, and many are eager to help develop appropriate solutions to the multiple challenges they encounter when caring for their child.
Family Advisory Committees (FACs) are one venue in which families can share their knowledge and experience. These committees are open to parents and caregivers in a variety of health care settings, such as children’s hospitals, specialty care clinics, health plans, and government agencies serving CSHCN. But how do these organizations and agencies recruit parents of CSHCN (already busy beyond the realm of normal parenting responsibilities) to become members of an advisory committee? How do they encourage commitment to their role? How do they maintain engagement with them? These are some of the common questions posed by entities establishing new committees.
Teresa Jurado, a parent mentor at Lucile Packard Children’s Hospital Stanford, chaired the Health Plan of San Mateo CCS Family Sub-Committee for five years from its inception in 2013. Teresa is the parent of a 27-year-old son who has cerebral palsy. Her wealth of experience navigating the myriad systems and services essential to his health and well-being, combined with her professional experience as a parent health liaison and a parent mentor, led to her role as chair of the sub-committee. She takes pride in having facilitated and maintained a lively, engaged group throughout her time as chair. Teresa attributes the success of the group and its sustainability to the engagement and empowerment that parents experienced while participating. The Health Plan staff understood the importance of receiving input from the sub-committee and kept the members informed about how their feedback led to service delivery improvements. Some parents found their voices while serving on the sub-committee and knew their voices were heard.
Teresa offers her five top tips for meaningfully engaging a group of family advisors.
Organization Values Families’ Time and Input
- Provide compensation. Offer stipends, food, and free parking. Families want to give input, but they do not want to be the only ones at the table paying out of pocket to be there.
- Ensure that family members hear directly from health plan leadership that parent input is needed to make improvements to health care delivery.
- Give family members the opportunity to request and make suggestions on agenda items.
- Structure meetings to be interactive and choose content that is intended for parent input.
- Require decision makers to attend meetings.
- Follow up with family members on their input. What was important about the information they provided? What was the response or impact? If the organization is unable to act on parent feedback, explain why. Close the communication loop. When family members see the change or impact, they want to come back.
Organization Offers Ongoing Training and Support to Family Members
- As part of the recruitment process, hold an informational session for identified candidates. Define roles and expectations of FAC members. “This is what the advisory group is. This is what the advisory group isn’t.” Training starts before the family member joins the committee.
- Train new family members on policies and practices of the advisory committee. Outline the “dos and don’ts” of serving on the FAC.
- Provide mentorship to family members. FAC chair should be available to debrief after meetings or to connect by phone in between meetings for support and meeting preparation.
- Build in “mini trainings” for family members at each meeting. Provide information, resources, and tools related to the agency, organization, or related community-based services to help them be more successful in their advisory roles.
Organization Provides Support to Committee Chair
- Assign a mentor or point person at the organization to support the committee chair. This person may be a staff liaison to the committee or sit on the committee as a representative of the organization.
- Ensure buy-in from the organization. Support for the committee and committee chair should come from plan administration / leadership.
Chair Models Appropriate Facilitation and Behavior
- Manage the time. Set a time limit for every agenda item, including public comment. Adhere to the time limits. Be prepared to move the meeting along when the time limit is up. Ask members if the agenda item should be included on the next meeting agenda to continue the discussion.
- Manage the meeting topic. Adhere to the set agenda items. Gently remind the committee about staying on topic when a member veers away from an agenda item. Be prepared to refer family members to the appropriate resource for support or complaints when personal issues arise.
- Have a contingency plan for responding to time, topic, or behavior issues. Examples:
- If a family member is angered by an agenda item, give a reminder that the committee is not a place to air grievances or show disrespect.
- If a family member is emotionally triggered by an agenda item, be prepared for the vice-chair to offer emotional support outside of the meeting.
- Be prepared to back up silence. If the chair asks a question and no one answers, it may be necessary to provide an example to initiate the discussion.
Chair Builds Community, Cohesion, and Trust
- Require chair or co-chair position be filled by family member. Family members are more comfortable with other family members. A family member chair is empathetic and therefore more approachable by other parents. A family member chair encourages buy-in from parents.
- Provide a meal before the meeting. (Covered by the organization.) All FAC members, both family members and organization staff, should attend, providing a chance for members to mingle. Family members feel less intimidated in a meeting setting when given the opportunity to socialize with staff beforehand.
- Create a safe space. Balance the ratio of parents and organization staff at each meeting to help parents feel more comfortable. Rotate in on the agenda staff who are seeking input from the committee.
- Practice transparency between family members and organization staff. Encouraging open communication helps develop trust and build relationships.