Family Centered Care

Family centered care is a standard practice when dealing with hearing impaired children. It is taken for granted that the entire family will need information on how to support the child and help him or her thrive. But this standard of care is phased out as a child becomes self-sufficient.

Why is the assumption made that adults who develop a hearing loss would not have family members who are as affected as the family members of hearing impaired children? What if we treat the family members of adults with hearing loss the same way? This month, we're looking at the benefits of family centered care beyond pediatric patients, because hearing loss is a family affair no matter the age of the patient.

Tools for family centered care

Goal Sharing (GPS)

Goal Setting for Partners

Facilitate discussions between the person with hearing loss and their partner with this step-by-step guide.

Partner Journey

The Partner Journey

Understand the communication partner's feeling and unlock their potential to positively influence the patient's journey.

Communication Rings

Communication Rings

Help the patient identify the people in their network and the frequency and challenges associated with communicating with them.

Ideas Worth Hearing

Family Picnics

Family Picnics

Host community picnics to educate families about hearing loss and rehabilitation options!

Movies and TV

Movies and TV

Petition production companies to put more hearing impaired characters on TV and in the movies!

From the editor

Hearing Loss at Any Age is a Family Affair

Family-centered care is a standard and widely accepted practice when treating children with hearing loss. And that makes good sense.  Young children rarely understand what a hearing care professional is describing, are unable to follow through with a treatment plan on their own, and have difficulty advocating for themselves.  In addition, since a child’s hearing loss affects the entire family, the entire family is engaged in the treatment process.

But should family centered care be limited to children?  That’s the question prompted by a recent presentation at the Ida Institute by Frank Lin, MD, PhD, Assistant Professor of Otolaryngology and Epidemiology, Johns Hopkins University School of Medicine and Bloomberg School of Public Health.

In his presentation, Dr. Lin compared the treatment protocols for a 12-year-old child and a 72-year-old adult with identical hearing losses. He noted that often, treatment considered essential to ensure a 12 year old’s well-being would not be considered crucial for a 72 year old for whom hearing loss is viewed as “just part of the aging process.” Dr. Lin argued that perhaps we should consider a broader view of treatment for an older person’s hearing loss that takes into consideration many of the protocols that are seen as essential for treatment of a child with hearing loss.

Dr. Frank Lin's presentation to the Ida Institute about the role of hearing loss and healthcare in healthy aging.

Family is Key at Any Age

If we treat the whole family when we treat a child’s hearing loss, why shouldn’t we treat the equally-affected family members of an adult with hearing loss?

In hearing care, having family members accompany patients to appointments has long been considered useful for helping the patient to remembering information. In reality, the engagement of family members in the hearing consultation has the potential to bring many more benefits - they can become valuable allies in the rehabilitation process.

“It’s not only a second set of ears, it’s acknowledgement that the whole family’s going through this,” says Nerina Scarinci, a senior lecturer at the University of Queensland. “Let’s everyone be a team, collaborative, work on this together.”

Nerina pointed out that research has shown that family members are often the reason why many people consult an audiologist in the first place. “Because you don’t know you’re losing your hearing, people see it before you do,” she explains. “And they nag.”

How can you engage communication partners?

·         Use the Partner Journey tool to help the CPs understand how the PHL’s hearing loss affects them

·         Ask the CPs to articulate why it’s important to them that the PHL takes action

·         Involve CPs in strategizing how to improve communication

·         Keep the discussion hearing-related

Although research has shown that having communication partners attend the appointments can improve outcomes, it is still not a standard practice. This may be because audiologists don’t consider including communication partners in the consultation or simply because the partners themselves don’t think to come.

While family members may be key in motivating people to address their hearing loss, they may not have a clear understanding of what happens after the initial visit to the audiologist. Many communication partners believe that a hearing aid will be the beginning and the end of the solution to their loved one’s hearing loss. In fact, by continuing to attend appointments after the hearing aid is fitted, family members have an opportunity to develop realistic expectations of what rehabilitation is needed to improve communication – and how they can contribute to the success of that process.

Making the Change to Family Centered Care

To promote family-centered care and evaluate its effects, Ida Advisory Board member Louise Hickson is working with Ida Institute Senior Audiologist Melanie Gregory on an RTC. Ida Faculty Member Christopher Lind, and Ida Fellows Carly Meyer and Nerina Scarinci are also collaborating on the project, which is funded by a grant from the Oticon Foundation.

The project will center around an entire clinic, training audiologists, receptionists, and other staff on what it means to deliver family-centered care. This will include pre-appointment interventions such as reinforcing the importance of a family member not only accompanying the person with hearing loss to appointments but coming prepared to participate.

Dr. Louise Hickson talks about the importance of communication partners in the rehabilitation process.

“We acknowledge that it’s difficult to change practice,” says Nerina. “We’re going to be using the Change Guide as the framework in our training. We’re going to be talking about all the different Ida tools that audiologists can use in a family-centered care hearing healthcare program, such as the GPS, the Line and the Communication Rings. So many of the Ida Tools can be applied for use with both the person with hearing loss and the communication partner.”

Many audiologists readily acknowledge the value of including communication partners but face obstacles in their clinics that make them reluctant to change their practice. The myths that hinder audiologists from implementing patient-centered care – that it’s too time consuming or too emotional – are barriers to overcome. The project team is optimistic that audiologists can be influenced to re-think family-centered care and the way they structure appointments.

“We don’t want them to see family centered care as an addition to what they normally do,” says Nerina. “It is going to be what they do.”