November 1, 2013 Departments

Overheard: Getting Parents on Your Side

In April, Joni Alberg and Tamala Bradham chatted online with ASHA members about how to best provide family-centered care to children with hearing loss. The Leader was there.

Member 1: Before collaboration can occur, a level of trust between the collaborating parties must be established. How do I establish a trusting relationship with parents?

OverheardJoni Alberg: The first step in developing trust is to develop an understanding of where the parent is with regard to understanding and accepting their child's hearing loss. As professionals, we must get to know the parents as people first. When first getting to know a parent and every time thereafter, find out how he or she is doing—what are their concerns [and] fears? Think of the parent as your partner in whatever you are trying to do. Let them know you care, and really listen to what they say each time they speak. Sometimes this will mean putting "your" agenda aside.

Tamala Bradham: Joni, you bring up a good point: Parents as people first. Laura Knox wrote a book many years ago titled "Parents Are People Too." It is a great book and really points out that professionals must recognize parents ... acknowledge all the unique skills and knowledge they bring and the importance of professionals recognizing the decision-making power of parents in the partnerships.

Member 2: I have limited time to spend with each parent. How can I maximize the time we have together to ensure optimal outcomes for the child and family?

Bradham: Establishing the trust starts with forming the partnership and understanding what people are bringing to the situation.

Alberg: Again, I go back to my previous comments, and those of Tamala: If you really want parents to "listen," you must first find out how they are doing. You can spend an entire session with a parent telling them and showing them a skill to work on or how to manage technology, but unless the parent is ready to "hear" you they won't know what you are saying. I have heard many a professional comment that a parent just doesn't care because they never come with the hearing aid batteries working or they didn't remember what skill they were working on, when in reality, the parent never actually "heard" the professional because they were worried about something having nothing to do with the child's hearing loss—like losing a job, or the in-laws insisting the child didn't have a hearing loss, and many, many other life issues that took precedence.

Bradham: The key here is to listen, "learn" the parents' learning style, and engage them in the process. Ask open-ended questions and listen to what they say, explore with them how they best learn, [and] empower them so they know they can do this!

Member 3: How can I get parents to follow through on the tasks and goals I give them?

Alberg: Keep in mind parents really want to help their children. Once you have "checked in" with how they are doing, you must then explain what you want them to do and demonstrate it. This is more than just telling them what to do. Parents need to be shown what to do. Like Tamala said, find out their learning style. Do they like to hear information? Do they need to read about it, or do they need to experience it? Whichever style they prefer, you will need to have them show you they understand. Ask them to show you how to change the hearing aid battery. Ask them to demonstrate the language and speech skill. Ask them to think of instances in everyday life where they can "teach" the skill.

Bradham: With family-centered services, it is important for the parent feel like they have a role in the services. One idea to get them to follow through would be to have them bring a toy from home, have them model how they "play" with it at home, give the parent some other ideas on how to interact with the toy based on your goals, then ask them how it went the next time you see them. Another idea is to demonstrate an activity you are trying to get the child do, then have the parent do the same activity (empower them) so they can see that they can do it, too!

Member 4: Can you expand more on the parent's learning style? How can you better understand that?

Alberg: Learning styles refer to the ways in which someone best learns. For example, I need to see information in writing to really grasp it. Telling me doesn't work all alone. Everyone will have a preferred way to learn. The challenge is to figure out how the parent learns and to match instruction/information accordingly. For example, if a parent loves to dig in and try what you are telling them, then you will need to let them—even if it means you are uncomfortable letting them dig in without understanding the why and how and research behind what you are doing. Some parents will want to know the how and why and what the research says before they do anything and you have to be able to give this information to them. The challenge for the professional is recognizing your personal style may not match the parent's style and to be able to change.

Bradham: Adults have different learning styles than children: Some learn best by reading about the situation. They read everything they can get their hands on. Some learn best with hands-on activities. They don't take time to read the instruction manual, they just figure it out as they go along. Others need a combination of both. They read some and they do some tinkering, and finally some shopping around, asking others for opinions. They may go to several different professionals seeking advice, [but] that does not mean they dislike you or your services or distrust you. They just need to talk to multiple people to get the consensus. It is OK to engage in a conversation with the family member and explore with them how they learn best.

Member 5: What barriers do you think the parents experience in being able to integrate skills day-to-day?

Bradham: There are several barriers that a family may have. Family stresses about money, time, sleep, housing, transportation, balancing work and family, parenting decisions, medical expenses, food ...

Alberg: I agree with all of the above!

Bradham: Feelings such as: How can I keep my child safe? Is this therapist too young? Too old? Experienced? Can this therapist help me with my child if she is not a parent herself? Guilt: "I'm not a good parent if I don't do all of the care for my child." Gatekeeper: "If someone else has to tell me how to feed my child, does that mean I'm not doing a good enough job?"

Alberg: This is why it is so important to find out what stresses are most prevalent in a parent's life and then offer suggestions and strategies to help them. The parent needs to be a part of figuring out ways to incorporate the "teaching" into their day.

Bradham: Resentment or jealousy: "He does the activity with the therapist but not me." And also frustration, "I'm always in such a hurry. There is not enough time to do everything that the therapists tells me to do." Parents have a variety of feelings at different times.

Alberg: None of us have a perfect life and parents need to know it is okay if they are not addressing their child's needs every waking hour of every day!

Member 6: What do you think are the roles of the audiologist and SLP in overcoming barriers?

Alberg: Being an understanding and caring professional, and supportive even when things are not going well. Both need to be able to brainstorm strategies with the parent to help them identify solutions.

Bradham: By engaging in family-centered practices and building the partnership, you will have the relationship with the family to help them to overcome their barriers.

Member 7: Any tips for sharing the initial diagnosis in a supportive way? This may happen before you really know the parents.

Alberg: Good question! This is very challenging for the very reason you stated, you do not know the parents well. But, you can find out what concerns they have had, what they have noticed, to get them talking about their child and, hopefully, hear a sliver of understanding that something may not be wrong with the hearing. Then build on that. And when you do break the news, give the parents time to process what you have told them. Oh, and always, always have Kleenex!

Bradham: Honesty is the key.

Bradham: Don't fill in the silence with a bunch of words. Answer their questions. Either follow up with a phone call the next day, or bring them back to the clinic as soon as possible for additional counseling and next steps.

Alberg: Excellent! Follow-up is critical.

Member 8: I consider myself an expert in one area of intervention and feel strongly that families should know about this mode of communication. How do I present information in an unbiased way when I truthfully don't know much about the other areas (or care about learning about them)?

Bradham: Be upfront with the family regarding your expertise and what you know. Then it is important to inform them of all the other options available and how to get resources on those options. This is where family support is critical so they can make an informed choice. I have seen families move, change therapists, travel several hours each way for services, etc. It is important not to judge but to provide them with information so they can decide how to proceed.

Alberg: There are many resources available to you that can provide parents with objective information about options. Seek these out. Encourage parents to talk with other parents. If a parent asks about a particular option you do not know about, tell them you will find out or find someone who can help them. This is so very critical. Parents need to know they have options and they need encouragement to explore them. Finally, the parents need to understand—as do you, the professional—that the decisions a parent makes must be their own and must be based on what they believe is best for their child and family as well as what will help them to achieve the goals they have for their child.

Member 9: What is my role as an SLP or audiologist in providing family support?

Bradham: Families find support from a variety of places, such as adults who are deaf or hard of hearing, professionals, existing communities (family, friends, neighbors), informational items (Internet, social media, books, videos, resource guides, etc.), and parent-to-parent support. Some practices have secured releases from families, [to allow them to] give their name to families who want to talk to another parent. I have found that families often get the most support from talking to another family who has "been there and done that," as well as from their own family and friends. It is important for the audiologists and speech-language pathologists to learn about programs and resources in their state to connect families to each other.

Alberg: It is essential that you understand your role is not only that of an audiologist or SLP but you must recognize how essential you are in providing support to the parents. As a diagnosing audiologist, you are most likely the first one to tell them their child cannot hear. You must understand the impact this news is likely to have on parents. You do not have to know everything there is to know about family support, but you do need to know where parents can go in your location to get the support they need, not only at the time of diagnosis but throughout their journey.

Bradham: Does anyone in the audience have a family-support story they would like to share (without disclosing names)?

Member 10: I will share a story. We had 3-year-old who was not using hearing aids consistently, determined by data logging. She was using them, on average, three to four hours per day. The mother thought the hearing aid use was full-time and was not aware of any problems. Support for identifying how to increase use was provided through phone calls (due to parent work schedule). By helping the mother explore daily routines related to use, her wear time increased to 10 hours per day within a couple of weeks. This has been maintained now for three months.

Alberg: That is an excellent outcome!

Bradham: Great share!

Bradham: I was seeing a patient for a cochlear implant evaluation. The single mother and the child's aunt came to the visit. They decided they wanted to get the implant but there were no services in their area. This mother was working full time during the day, she was very young, and taking classes at night. They needed to travel about 1.5 hours each way for speech therapy and two hours each way to the CI program. The child was on the state Medicaid plan as well. What do you think the outcome was?

Member 11: Depends on the mom's ability to handle those challenges...

Bradham: Do you think they got the cochlear implant? Did they go to therapy regularly? Do you think the child met the goals of the parent? What role do you think the aunt played?

Member 12: Did you have telepractice?

Bradham: This was before telepractice. Would have been a great option though!

Member 13: Family support can be critical, so it may have come together. There are also a number of challenges that may have been hard to overcome.

Bradham: The mother did have a number of challenges to overcome. [But] do you think they got the cochlear implant? Yes. Did they go to therapy regularly? Yes—they were always on time! Do you think the child met the goals of the parent? Yes, and mother also graduated with her degree! What role do you think the aunt played? I learned about three years after the child got the implant that it was not the aunt, just a neighbor that was helping out whenever she could. Family support can also come from the community!

Member 10: Nice! I should mention for the hearing aid story I shared: Mom did not speak English, was [of] low socioeconomic status, and had less than an eighth-grade education.

Bradham: Wow! Great work at getting at the parent's level and engaging her in the process!

Alberg: One of the things we have learned at BEGINNINGS is when a parent doesn't follow through on something, it usually is not because they don't care—it most often is because "life" has intervened.

Bradham: Does anyone have a challenge they would like to share regarding family support?

Member 14: Every family is so different. Some have so much support from their own families and others do not. I worked in an EHDI program and connected with families after screening. In one family, I had 15 family members in the room during my first visit because they wanted everyone to know and understand the child's hearing loss. Other families were very alone, without support and with a lot of barriers—usually due to poverty. It was tougher to find out what their personal resources or supports were. These moms (typically) really needed more support.

Member 15: I have also found it is not because they won't, it is because they can't—something is getting in the way. Having the information does not necessarily mean the parent can implement [it.] Knowledge is just part of the equation.

Alberg: An audiologist called BEGINNINGS, frustrated that the parents of a child for whom hearing aids had been ordered had not come in to pick them up. Three weeks had now passed and the audiologist had turned to us for help. He was worried the parents were not taking the child's hearing loss seriously. The parent educator for this family followed up with the parent as to why they had not picked up the hearing aids. The parent educator learned the father had lost his job, the family had been evicted from their apartment, and they had no money for groceries. Hearing loss was low on their list of priorities at that moment. The parent educator and I began calling every agency we could identify to help this family, and then went and bought groceries. These parents cared deeply, but life intervened!

Member 16: What support have you found helpful if the family is having trouble accepting the hearing loss, or is unsure if there is benefit from the intervention?

Alberg: Some parents need time to reach acceptance. Until then, there is not much you or any other professional can do to move them forward. However, you can keep them on your radar and send them information, call them, continue to reach out until they are ready. I think this is one of the most difficult things for all of us to accept, and then move on to the next family who is ready.

Bradham: I heard a wonderful statement from Mark Ross in 1996 regarding hearing aids which can be applied to almost anything. He said something like, "Parents must be convinced of the necessity and value of hearing aids. Parents need to see the hearing aids as part of the solution and not a reminder of the problem." The audience can insert any intervention strategy in place of hearing aids in this statement—where they start to see that they are part of the solution in helping their child.

Member 17: Milder hearing losses are often easier to deny. They seem to hear, right? I found that the hearing loss simulation recordings were helpful education tools.

Bradham: Great suggestion!

Member 18: What is the difference between family-centered care and family support?

Bradham: Family-centered practice is a service model that supports the whole family as the unit of service, and honors family choice and empowerment in decision-making about services. The core to family-centered services is "sensitivity and respect for the culture and values of individual family members and each family's ecology, as members define the people, activities and beliefs important to them." A great resource is www.nectac.org.

Member 19: Do you have any suggestions for professional development—to improve your skills in family support and counseling?

Bradham: Great question. There are multiple places to go for professional development: ASHA, NECTAC, BEGINNINGS, and The Care Project by Johnnie Sexton, to name a few.

Alberg: One final thing I want to share is to remember that just because a parent tells you they understand what you have told them and want them to do, doesn't mean they do. Parents do not want you to think they do not understand. Always "check" parents' understanding by having them repeat what you told them or demonstrating what you want them to do.

Bradham: As we start to wrap up the evening, just a few takeaways: First, family support is essential. When I have asked families when their intervention began, they often say when they spoke to another parent of a child with hearing loss. Next: listen, listen, and listen some more! Remember that parents are people too. Finally, get to know the parent's learning style.

Alberg: Thank you for your time tonight to participate in this chat. I invite all of you to contact me and BEGINNINGS for resources and answers to questions you might have. And I echo the comment, "Listen to the parents. They will tell you what they need and want!"

Joni Alberg, PhD, is executive director of BEGINNINGS for Parents of Children Who Are Deaf or Hard of Hearing, in Raleigh, N.C. She has been a special education teacher, administrator, researcher and business executive. She is an adjunct associate professor at the University of North Carolina at Chapel Hill, Division of Speech and Hearing Sciences. jwerbicki@nc.begin.org

Tamala Bradham, PhD, CCC-A, is an assistant professor and associate director of services of the National Center for Childhood Deafness and Family Communication at the Vanderbilt Bill Wilkerson Center in Nashville, Tenn. She is associate coordinator of Special Interest Group 9, Hearing and Hearing Disorders in Childhood, and co-chair of the National Steering Committee on Legislative and Policy Issues for A.G. Bell. tamala.bradham@vanderbilt.edu

cite as: Alberg, J.  & Bradham, T. (2013, November 01). Overheard: Getting Parents on Your Side. The ASHA Leader.

  

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