(Provided by PAETC, Parent Information and Training Center of Alexandria, Virginia)
The philosophy of family-centered service delivery came into the field of early intervention in the 1980s and into law with the passage of PL-99-457 in 1986. Since that time professionals and families have worked to define and implement a model of family-centered practice. Audiologists providing services in the birth to three population may be aware of this service delivery model, but few receive training in how it can be implemented into their practice. This section of the website will review the principles of family-centered practice and will provide suggestions for audiologists who have an interest in working within that model.
The diagnosis of hearing loss is new for the majority of parents. It is the job of the professionals who are supporting them to provide the information that parents need in order for them to be effective advocates for their child.
Each discipline involved will have specific information to impart. Audiologists have the opportunity to assist families in understanding their child's hearing loss in a functional way.
Parents may ask for specific guidance about which hearing aid to choose or they may have their own opinions about certain devices or options. For example in one instance, a parent of a toddler with hearing loss chose a hearing aid with fewer options for the future (e.g. the ability to use an FM boot in preschool) because she liked the aesthetics of the aid that she chose. The hearing aid was smaller and came in a pink case. Upon exploration about why the parent chose that hearing aid, the mother recalled her own memories as a young child growing up with a hearing loss. She recalled having to wear big, bulky hearing aids, and she did not want that for her child.
Having an understanding about the mother and her child, helped the audiologist to understand her choice, and support her even though, it was not the aid that the audiologist would have recommended.
Families dealing with hearing loss are often inundated with numerous professionals, each offering their own specialized service. It may be helpful for professionals to simplify the service delivery model by taking things one step at a time. Professionals may want to give families choices about such things as when to do earmold fittings for the first time, when to start a hearing aid trial or when/if they might like to speak with another family experiencing hearing loss. In addition, professionals should be sensitive to the number of appointments that are scheduled for families. Whenever possible they should attempt to schedule appointments at times that are most convenient for families. Some families may prefer only one appointment per week. Others may prefer to schedule two or more appointments together to save on travel expenses or time off from work.
It is important to recognize that each family processes the diagnosis in their own time and in their own way. For example: a family who had more than one child born with hearing loss, made different choices for the third child who was diagnosed versus their first child. The family chose to delay hearing aid use until the child gained better head control and was awake more than asleep. Professionals working with this family did well to acknowledge that in this case, the family knew from previous experience with their other children the importance of early hearing stimulation and had made a well-informed choice for this child and for their family. Making earmolds and placing hearing aids on children whose parents are not emotionally ready to commit to their use often results in what professionals label as "noncompliant" parents. Allowing parents to set the pace and identify when they are ready to move to the next step, allows them to have some control over all of the recent changes in their lives. Professionals need to meet families where they are in the acceptance process and work from there.
The professional's approach with families is important in making them feel comfortable and welcome. Professionals may want to reflect on their own personal/professional styles with families. Do they ask open-ended questions and shape their answers based on what families are asking? Do they use terminology that is family friendly? Do they allow enough time during the appointment to really listen to families' concerns? Are they able to meet with families outside the audiology booth in a comfortable setting to summarize an appointment or to deliver difficult information? Overall, a personal touch often softens the blow for families coming into more clinical settings and can make subsequent appointments more pleasant.
Professionals do not work with children in isolation. They are products of their unique family system. Beyond that, families are shaped by their extended families and the community at large.
Professionals can assist families by being inclusive to all members. Families may ask for permission to bring friends or extended family members to their appointments. Sometimes it is helpful for the professional to talk individually with family members who have questions about hearing loss.
Professionals may also be asked to meet with grandparents or extended family members who may grieve the hearing loss in their own way. In general, the greater the child's support network, the better the outcome. Audiologists can best support the child by including those people in the child's support network.
Most American cities have become a melting pot of various cultures and backgrounds. Professionals will require training to understand the basic values and norms for the various cultures that their clientele represent.
In order to provide appropriate intervention services to families, professionals must have at least a general understanding of the family's culture. Professionals will need to probe sensitively, with the help of trained interpreters, to understand the underlying beliefs of their clients. Understanding families' cultural perspectives, priorities and values will be of assistance to professionals as they proceed with services over time. A useful resource may be found at www.culturegrams.com.
Professionals are often the first people to provide support for families dealing with a hearing loss. They are limited in what they can provide emotionally for these families. It can be helpful to offer referrals to other families who have been through this experience. Most professionals have not walked the same walk as these parents. Parent to parent contact is a way to provide what the professionals cannot. Audiologists and parent-infant staff can work collaboratively to enlist veteran families who are willing to meet and/or talk with others. Some organizations, such as Hands and Voices, have a "guide by your side" program that provides an immediate link for families after they receive the diagnosis of hearing loss. Separate referrals for grandparents may also be helpful as they are dealing with their own set of issues. Professionals will need to display sensitivity when making these referrals, recognizing that some families will prefer to deal with their issues privately. In addition, it is helpful to ask families how they are most comfortable making the initial contact. Would they prefer for the family to contact them or would they prefer to initiate the contact? Often, it is easier for families to be contacted by the supporting family. Also, ask how they prefer to communicate. Would they prefer to be contacted by e-mail or by phone? Giving the families various options will make this referral process helpful and not more stressful.
Inherent in the professional/client relationship there seems to be an imbalance. That is to say that, the professional has the knowledge and the client is there to learn from the professional. In the case of hearing loss, there is much to be learned by hearing parents who are experiencing hearing loss for the first time. It is not uncommon for parents to say, "Just tell me what to do and I will do it." Or to ask the professional, "What would you do if this was your child?" These can be difficult questions and can put a professional on the spot.
It can be helpful to consider in advance a response to these questions. In general, it is not a good idea to be in the business of giving advice to others. What works for one family may not be helpful for another because of our individual circumstances and differences.
Building a climate of mutual respect and trust takes time. Families are likely to feel respected if they are listened to, and if they feel that the professional acknowledges the special expertise that the family has to offer. Professionals and families can learn from each other and in that way explore options that might be beneficial for the child. Families will feel that they can trust in the professional if their confidentiality is honored and if they are allowed to voice their opinions, questions and concerns without being judged.
Professionals can also be supportive by helping parents to understand that often there may not be a right or wrong choice. They can work together to use a "discovery approach" that will guide them in their decisions for their child. Professionals need to be available to guide parents through this process that will likely evolve over many years. It is helpful to counsel parents in a way that helps them to understand that decisions that are made now can be altered if necessary in the future. No decision is set in stone.