Worried Parents in need of advice

Learning that your child suffers from hearing loss is a difficult experience. Many parents feel guilty and frustrated by their lack of control over their child's development and in need of answers to a variety of questions. Most of all, they want to know the cause of the hearing loss, what can be done about it, and what impact it will have on their child. Parental stress may adversely affect the atmosphere in the family and the development of the children. This was confirmed by a comprehensive survey including 1,000 Canadian mothers. The results were reported in 1998 in the Journal of Speech, Language, and Hearing Research. Most often, hearing loss in children is hereditary or due to complications during the pregnancy. During childhood, otitis media may result in temporary hearing loss. Slightly more than one child out of 1,000 are born with hearing loss, which may not always be apparent to the parents in the first few months. However, growing attention to the problem has resulted in earlier diagnoses. Infant screening is becoming more common. When hearing loss is discovered, most often by the parents, the parents are uncertain about how to proceed and may feel overwhelmed by the many questions, issues and emotions that follow. A survey among 600 parents of hearing impaired children in Denmark indicated that one parent in three found a shortage of available advice and information when their children were diagnosed with hearing loss. Results of the survey were reported in Scandinavian Audiology in 2001. In general, the parents found that:

Counselling should be offered immediately after confirmed diagnosis. There is a need for psychological support at an early time. Written information is important. Cooperation between advisers of the family is necessary.

The same needs were reported in an American survey with 600 respondents, published in 2002 in The Hearing Journal. This survey also indicated that specific parent needs vary from phase to phase. At the outset, the parents need information about the causes of hearing loss and hearing in general, as well as practical advice on how to listen and talk to their hearing impaired child. A few months after confirmed diagnosis, the the parents need realistic time frames for their child's speech development, advice on the responsibilities of the care system and specific rights of the hearing impaired child. Throughout this process the care givers have a vital role as advisers and sounding boards for the parents.

Sources: "Treatment Efficacy: Hearing Loss in Children", Journal of Speech, Language, and Hearing Research, 1998, Vol. 41: 61-84, "Support Services in Denmark For Parents of Children Who Are Deaf Or Hard of Hearing - A National Survey, Scandinavian Audiology 2001; 30:116-119 and "What Parents Want to Know at Diagnosis and During the First Year", The Hearing Journal, 2002; Vol. 55, number 11.