This information will help you identify emotional concerns exhibited by parents and use techniques to assist group members effectively deal with emotions.
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 before they have the opportunity to observe responses to sound. Unlike some other disabilities, there is nothing one can clearly observe, so the diagnosis is a shock.
A parent's reaction may have little to do with the degree or type of hearing loss. It may have something to do with past experience with hearing loss. Most families of newly identified babies have little information about hearing loss in children. If they know anyone with a hearing loss, it is likely an older adult.
During the time immediately after birth, parents, and especially mothers, can feel very fragile. Dealing with decisions can be difficult. Other family members (grandparents, siblings, etc.) may also require support and parents may need assistance recognizing the needs of others when overwhelmed by their own needs. Support from other parents is very helpful in managing the adjustment of having a child with hearing loss.
It is important to recognize that the anxiety parents experience at diagnosis is a normal reaction to an unforeseen situation. Interaction between the family and the audiologist at the time of diagnosis will set the stage for the relationship to come.
Goals of Group Sessions
The goal of Group AR is to help families get the support and information needed to obtain a positive outlook and constructively move forward. Meeting with other families who are in the same situation helps them understand that they are not alone. Having parents in the group who are a little bit ahead in the experience of managing a child with hearing loss can help instill a sense of optimism and hope.
You should allow parents to set the topics for the group. Topics will vary from group to group and, may vary at different times within a group. Some parents want information, others want to talk about feelings, and others want to discuss ways of dealing with specific issues (e.g. dealing with siblings, or grandparents, selecting schools).
It is tempting to simply provide information, but parents may not be prepared to receive information at the time of diagnosis. You should be guided by the families themselves.
Organizing the Parental Program
Types of Groups
Groups may be organized for both parents together, for mothers and fathers separately, for grandparents, and for siblings of children with hearing loss.
Groups where both parents attend together allow them to hear each others issues. Separate meetings 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.
Occasional meetings 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 benefit from contact with other siblings, where they can discuss how it feels to have a sibling with a disability, and feelings about the perception of getting less time from parents than the child with the disability.
Groups can be scheduled occasionally (once or a couple of times/year), or ongoing (weekly or monthly).
Ongoing groups give parents the opportunity to develop relationships, have ongoing discussions, and work through feelings. Finding time to meet each month or each week may be difficult for the participants. Work schedules and children activities make scheduling difficult. Evening or weekend meetings allow working parents to attend. Daytime meetings, often scheduled around treatment times, will increase chances that the person who brings the child to treatment will attend.
If you can help arrange child care for parents during the meeting time, this will usually increase attendance. Some parents will feel that they do want to take time for themselves and are more likely to come to an information session on a topic of interest to them (e.g. When is it time to move to a cochlear implant? Selecting a school for a child with hearing loss.) In this way, it is often helpful to create a detailed agenda that lists when each topic will be discussed throughout the course of the program. Support can often be added to an informational group session.
Running the Group Sessions
Set Ground Rules
At the beginning of the first session, you should set the ground rules for the participants. This will help set the tone for the entire program, and help create a positive environment where ideas, thoughts and information can be shared freely among group participants.
- Respect what each person says. No judgments.
- What is said in the room, stays in the room.
- Everyone has the opportunity to speak, but no one is required to speak.
- The group will plan the agenda.
Ask each person at the table to introduce themselves and ask what they would like to get out of the group. Please remind each participant to keep their introduction short and brief. For example:
My name is ____ , I am the mother of John who is 8 months old and has a severe hearing loss. I am hoping to meet other families and learn more about hearing loss.
Setting the Agenda
Ask the group what they want to discuss and list all topics on the blackboard. If more than one person suggests the same topic it can receive a check and the most popular topic can be discussed first.
If the goal of the group is support, it is important not to get trapped into providing information. If information is needed, see if other group members can provide answers, if not, make it a short part of the discussion.
Don’t be afraid of silence. We are all tempted to talk to fill in the silence but by keeping quiet we reinforce that the group belongs to the parents and not the leaders.
Frequent Topics Voiced by Parents
Refer to the "Must Reads" section below and the other sections in the Resource Library to help prepare you for addressing the topics below.
- Personal stories and experiences with diagnosis
- Dealing with family about the management of a child with hearing loss
- Dealing with siblings
- Grandparent issues
- Marriage security - how is a child's hearing loss affecting 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
- What will people think about my child's hearing loss? Here is where you can address social stigmas and provides words of positive encouragement
- Who and what is to blame for my child's hearing loss?
English, K (2002) Counseling children with hearing impairment and their families. Boston: Allyn and Bacon.
Luterman, D. (2008) Counseling persons with communication disorders and their families (5th ed.) Austin, Pro-Ed.
Rousch, J and Kamo, G (2008) Counseling and Collaboration with Parents of Children with Hearing Loss, in Madell, J.R. and Flexer, C. Pediatric Audiology: Diagnosis, Technology, and Management. New York, Thieme.
McDonald, E (1967) Understand Those Feelings: A guide for Parents of Handicapped Children and Everyone who Counsels Them. Pittsburgh, Stanwix House, Inc.