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Objectives and Setting

Permanent bi-lateral hearing impairment in childhood affects about 16,000 children in England and Wales. The impact of deafness and the effectiveness of interventions over differing degrees of hearing impairment had not been systematically established due to lack of suitable outcome measures particularly for children with profound hearing impairment. This study aimed to:

Design, Main Outcome Measures and Results

We developed the IHR Quality of Life questionnaire (IHR-QoLQ) and used it in a postal survey of a population ascertainment of deaf children and their families, obtaining over 500 responses which provided reference distributions. The questionnaire was shown to be reliable, and was further validated for use with profoundly deaf children. Thirty-seven profoundly deaf children and their families were studied for one year, during the child's entry into full time education. Major concerns related to the child's communication and education. Substantial change in the Quality of Family Life (QoFL) index was shown for some families which may have been influenced by communication issues. About 70% of parents reported satisfaction with the support they received.

Short questionnaires for audit of support services were systematically developed: the Paediatric Audiology Services Index - PASI, and the Deaf Early Education Services Index - DEESI.

Discussion and implications for NHS

The IHR-QoLQ for children with hearing impairment and their families, the PASI and DEESI have been shown to be valid, reliable and sensitive to change. Professionals working with deaf children will benefit from outcome measures which monitor quality of service provision, and may provide a basis for rationalising the individual care plans for deaf children. The children will benefit, as use should lead to less variability and a more family-focused care plan. With the introduction of the newborn hearing screening programme, there will be a need for evaluating the effectiveness of intervention at the family and child levels. The DfES Early Support Pilot Programme is engaged in developing a 'family toolkit' as a reference for various services to help to develop a more integrated service. The IHR-QoLQ would provide a useful monitoring/evaluation section in this toolkit. The PASI and DEESI are validated for use with the wide ranging service provision in the UK, and have been widely and successfully used by the Newborn Hearing Screening Programme in the UK.

Publications and Presentations resulting from the research

Presentation for Deafness and Education Research Group Meeting, Birmingham, November 1997. Quality of Life of Profoundly Deaf Children.

For further information contact

Professor Adrian Davis
Head of Epidemiology and Public Health
MRC Institute of Hearing Research
University Park
Nottingham, NG7 2RD
UK.