Having a baby diagnosed with a hearing loss can be very traumatic for a family. Hearing loss is frequently identified at birth, before the parents have had the opportunity to develop a bond with the baby and observe their baby’s responses to sound. Additionally, most parents have little information about hearing loss in children. If they know anyone with a hearing loss, it is likely an older adult. It is important to recognize that the anxiety parents experience at diagnosis is a normal reaction to an unforeseen situation.
During the time immediately after birth, parents can be exhausted, stressed, and vulnerable. Dealing with decisions can be difficult. The goal of Group AR for families of children with hearing loss is to provide support and information. Meeting with other families who are in the same situation helps them understand that they are not alone. Parents in the group that have a bit more experience in managing a child’s hearing loss can help assure newer parents.
During this Group AR meeting, parents share concerns they had when they first received their child’s diagnosis and discuss what sources of information have been most helpful for them.
You should allow parents to set the topics for the group. It is tempting to simply provide information as a hearing care professional, but parents may have just as great a need for telling their story and being heard by people that truly understand their experience. Let the session be guided by the needs of the families. Common topics are:
- Personal stories and experiences with diagnosis
- Managing family (siblings, grandparents, etc)
- Stress on the relationship between parents
- Technology: Selection and management
- Therapy: What type of therapy is available and is therapy a good management strategy for the child?
- Social stigma: What will people think about my child's hearing loss?
- Who and what is to blame for my child's hearing loss?
Be aware that some parents are more likely to come to a session that is framed as an informational meeting rather than one about sharing personal stories. They may see the former as more important because it is practical and for the direct benefit of the child, whereas the latter may be seen as less helpful and too centered on themselves. Consider how you will describe each session.
Ideas for family group sessions
Groups where both parents attend together allow them to hear each other’s issues. Separate meetings for each parent may help parents express concerns they would not under other circumstances disclose or discuss with their partner. One parent may have more concern about their child’s emotional issues, while the other may have concerns about the ability for the child to earn an income in the future.
Arranging on-site childcare while parents attend the group will bolster attendance.
Occasional meetings just for grandparents can also be very helpful. This gives them the opportunity to express concerns they do not want to express to their children, and gives them the opportunity to ask questions and learn more about hearing loss.
Siblings can benefit from group sessions where they can connect with other siblings of children with hearing loss, discuss how it feels to have a sibling with different needs, and feelings about their parents’ need to focus on their sibling.