The Phonak Family-Centered Care Expert Circle has been very active in publishing about different aspects of FCC, but how much is getting through to the clinics and how are clinicians and their support staff doing it? We know that only a small percentage of research findings are implemented in clinical practice and then often not for years. I decided to go out and ask four every day clinicians and a customer service rep what FCC means to them, in what way they practice FCC (if at all), what challenges they encounter and how they overcome these.
What does Family-Centered Care mean to you?
Anne: Involving the family in the decision making process and the rehab process.
Carol: Hearing loss can affect extended families, so it’s important to involve everyone in treatment. The family support the person with the hearing loss and they in turn support them by getting help and reducing tension in the family.
Elizabeth (CSR): The family needs to be educated about hearing loss as well so they are more aware and have more understanding. This helps to stop tension and creates tolerance.
Steven: Hearing care must involve the entire family because they are also affected.
Barbara: It’s really about understanding different perspectives and taking these into account in finding a way forward.
In what way do you practice FCC?
Anne: The front desk is really important in asking people to come in. When family members attend, I always ask them to come in. Most of the time they agree, but some are reluctant.
Carol: The main communication partner’s voice is the most important one as they need to hear that the most, so this is the reason I use a lot to encourage people to come. If the family member is not in the room, they’ll be missing half the picture.
Elizabeth (CSR): I always ask clients to bring a family member. The main communicator can really assist by giving the family’s perspective, sometimes there’s frustration that the client isn’t even aware of.
Steven: I use a questionnaire which I get the family to fill out and I also try to get COSI goals from the family as well as shared goals. I find this often happens with the TV. The client says TV is ok, but the family member says it’s way too loud. This gives us some areas we can work on together.
Barbara: I try to get both the client and family members to buy into the process. There are so many positives when we can get them working together.
What are some of the challenges you have encountered?
Anne: Sometimes there are disagreements between the parties, often over cost factors. Sometimes it can be difficult to negotiate between the two.
Carol: One of the challenges is that a large percentage still come alone and many drop out after the initial appointment. We really need to encourage the family member to continue to attend as they can be really helpful also in fitting and follow up appointments.
Elizabeth (CSR): Sometimes you come across families where other problems are in play, these tend to then exacerbate the issues we are dealing with. That can be challenging, especially when family members are not supportive.
Steven: It can be a challenge to get family members to attend. Also, when the hearing impaired person is in denial, you can see the tension.
Barbara: Really thinking about and including a third person can be quite challenging. In the past we have worked generally more with just the client, so changing my own habits has been challenging.
How do you overcome these challenges?
Anne: In some cases you just need to circumvent opposing family members. I had one husband recently who didn’t want his wife to spend money on accessories. When she returned time and again and was still struggling with the TV, I gave her a demo unit to try out. Once he saw the difference at home, he came around.
Carol: When conflict arises I often tell them they are both right. For example, when there is a sloping hearing loss. I tell them that yes, the HI person can hear because they can hear the low pitches well, so volume is not so affected, but the high pitches cause the word confusions which the family member gets frustrated with.
Elizabeth (CSR): We often need to work with families to negotiate difficult situations and emotions. As long as everyone keeps being part of the conversation, we can usually make progress.
Steven: We need to be the peace-makers by shifting the focus to family. Often the HI person won’t agree to do it for themselves, but they will more likely do something if they understand how much impact they are having on their family. Then you usually get a positive response.
Barbara: Finding other ways to include family as well, like in the fitting process I have started using the family member’s voice when I do live speech mapping. This can really help them to better understand what their loved one is experiencing.
From my interviews it was obvious that everyone has heard and had an idea for themselves of what they could do to create a more inclusive conversation. One clinician commented on using a COSI but that this, whilst being useful in capturing family goals, did not lend itself easily to the family environment. This opens the potential for a new tool to better accommodate the family dynamics. Stay tuned!
To learn more about Family-Centered Care, including links to evidence and publications, click here.