Facilitating Parent-to-Parent Support in the Clinic

By Janet DesGeorges, H&V Headquarters

In my experience of providing parent-to-parent support in a variety of settings over the past 25 years, the offer to do so within the context of a team setting with other professionals has brought important opportunities to connect with other families ensuring that they have the tools to successfully advocate and support their child with hearing loss. For some professionals, this role may also be their first contact with an experienced parent prepared to support others.

For successful outcomes in children who are Deaf/Hard of Hearing (D/HH), it is essential for families to receive effective support. Along with the support they receive from their hearing care professionals (HCPs), families can also gain from connecting to parent-to-parent support.

An audiologist uses many skills in working with children who are D/HH and their families. Technical expertise, counseling, diagnosis, assessments, hearing aid or cochlear implant fittings, and more are among the important tasks carried out.  Appointments are often filled with many factors that must be addressed in a limited time frame. Families are often in need of other medical expertise from ENTs, case managers, genetic counselors, speech language pathologists, developmental pediatricians, psychologists, and others.

Interdisciplinary clinics have traditionally been a way for families to get input from a variety of professionals through a team approach. An interdisciplinary approach involves team members from different disciplines working collaboratively, with a common purpose, to assess needs, set goals, make decisions and share resources and responsibilities with a child who is D/HH and their family.

In recent years, across the globe, interdisciplinary clinics have begun to utilize a clinic-based, parent-to-parent support model. Sometimes known as ‘family consultants’ who are parents themselves, they serve in a non-medical role incorporated into the clinical setting to provide support to families.

Benefits of family consultant role

There are many benefits to including parent-to-parent support during a visit. For families, these include:

• Comfort and a sense of relief: Providing emotional support, a listening ear, empathy, and connection often provides relief for families who may be feeling alone or scared about what a diagnosis means and how it will impact family life.
• Connection to other resources: The family consultant can connect the parents to other parent organizations and events so families can meet other families.
• Viewpoints that are holistic: Families can get a more holistic sense of their child’s hearing loss beyond the medical implications.
• Access to positive role models: Being able to see healthy models of acceptance and joy, being able to ask questions about impact on siblings, school choices, and healthy social-emotional development are part of the parent-to-parent experience that is vital for families to make good, informed decisions for their child.

What makes a ‘family consultant’?

Family consultants are experienced parents, specifically trained to work in the clinical setting. They adhere to confidentiality ethics, ensure that no conflicting advice is given and never offer medical advice.

In some clinics, family consultants attend every appointment with the family during a clinic day, helping to take notes, writing down questions the family may have. Other models create a window of time for the consultant to sit down and meet alone with the family.   Often, family consultants will call the family before the clinic appointment to introduce themselves and follow up after the appointment as well.

What does a session look like in parent-to-parent support?

A scope of work for family consultants should be co-created with the clinic utilizing this model.  In general, a session with a parent might include:

• Learning about the role of each team member, including the family consultant, and that stories and experiences shared by the family consultant are not to give or be construed as medical opinions or advice.
• Connecting with direct emotional support and advocacy tips shared according to the needs of the family.
• Finding out if the family needs more information/guidance from other members of the interdisciplinary team.
• Based on input from other team members, guiding families to ensure that they are clear about what has been presented throughout the clinic, and report back to clinicians any clarifications that are needed.
• Providing “Just in Time” resources with families based on needs of the day
• Collect, compile, and disseminate information for parents about: issues and challenges in education, social/emotional topics, parenting etc. as indicated by family’s desires.
• Loop families back to team providers for medical opinions/advice.
• Often a template of questions is used that might include the following:
  • Please tell us about your family/story of identification/current hopes/dreams etc. (The response by the family helps to tailor the family consultant examples and life experiences to the needs of the family)
  • What do you hope to get out of this clinic day?
  • What questions do you have for the team?
  • Were there any resources or information that you would like us to follow up on about any certain topic?
  • Anything else?

What areas of training should be considered?

The results of training should produce family consultants who are able to:

• Connect naturally and organically within a brief period of time.
• Adhere to confidentiality ethics (refrain from discussing patients or confidential information outside of clinic, keeping records private, and following clinic policies. 
• Ensure that no conflicting advice to families/patients contrary to the professional opinion or role of other members of the interdisciplinary clinic is given. 

Where can a family consultant be found and trained?

Family consultants often are able to receive good training in parent-to-parent support through parent associations that they are affiliated with, for example, the Hands & Voices Chapters and H&V GBYS parent guides.  A hearing health care provider might also see the natural skills of a former or current parent that is in the practice to draw from.

As a respected and valuable member of the team, including renumeration for their time and expertise should be the standard. This creates both accountability and sustainability since volunteer positions cannot always be relied upon. When funds are limited, family consultants often just see a family once, and when funding allows, a family consultant may be a regular member of staff.

Deborah Mood, PhD, Assistant Professor, University of Colorado Anschutz Clinic in Developmental Pediatrics D/HH Clinic had this to say about the experience of a family consultant on the team. “Including family to family support has been invaluable to our team. Our amazing family support team member helped ensure our team centered the family in all our efforts and provided valuable insight about family’s perspectives. This individual was also an effective community liaison, bringing applicable resources and helping to connect families to one another for peer support. Importantly, our family support member was often able to meet with families prior to feedback and frequently followed up with families after the evaluation. Their time with families often primed families for difficult discussions by validating and providing context for the family’s experiences. This in turn created pathways for open communication and empowered families to engage in collaborative dialogue with the team in ways which effectively shifted the perceived power dynamic and allowed us to truly partner with families.”  

Quotes from parents who provide parent-to-parent support:

Rosabel (California U.S.A.)

Effective Parent-to-Parent support is the foundation of family centered care for a child who is D/HH. Family Centered Care is important in the clinical setting because all patients deserve to be treated with dignity and respect, have access to comprehensive information, and feel empowered to participate in the collaborative care their child receives. There is something special about having parents connect with someone who has been in their shoes and who will help them as they navigate the journey from birth and beyond. This connection helps them understand that they are not alone. I love making that personal connection in the clinic because I remember how lonely and helpless I felt early in our journey. Being a light in someone else’s darkness gives hope for a brighter future.” 

Daiva (Linz, Austria)

In parent peer work, I see a connection and coworking between the parents and the professionals. Support at the beginning or much later, independent information, but also commitment to families in the parents’ association are parts of this work. It is to appreciate that the parents’ voice is recognized as equal in a clinic, which brings benefits to both sides, parents and professionals.”

Janet (Colorado, U.S.A.)

It has been a wonderful experience to be included in a team who has come to rely on my input throughout the day about how the family is doing, what questions they might be afraid to ask but were willing to ask me as ‘just another mom’ and to support the professionals’ recommendations in my conversations with the family.”

Imagine a world where the experiences of families could blend both the medical context and social/community contexts of the experiences of hearing loss as they move through the systems that support them. This can be done!”

This article is derived with permission from the Phonak Blog series found here: https://audiologyblog.phonakpro.com/how-to-facilitate-parent-to-parent-support-in-a-clinic-based-setting/