Parent-to-parent support for the families of deaf children identified by the newborn hearing screen

ABSTRACT

Parent-to-parent support for the families of deaf children has been provided in an East London district as an adjunct to the existing Early Support programme. Two parents of deaf children were employed as Parent Support Workers. They were members of a multi-disciplinary team of audiologists, teachers of the deaf and a specialist speech therapist. A questionnaire was used to obtain the views of the parents of a 10-year cohort of 35 deaf children who had received the peer support. There were high levels of satisfaction. Twenty-two respondents (63%) judged that a parent who had a shared experience was the person best placed to offer help and advice immediately following the diagnosis of childhood deafness with 27 (77%) considering the counselling and guidance of the teacher or therapist as most useful in the pre-school period after this initial period. An overwhelming 34 (97%) would recommend peer support as being useful. Twelve professionals, including five teachers, submitted free text on their views of the support. This was evaluated using thematic analysis. There were concerns about training and governance of the Parent Support Workers, with one teacher considering that the role may conflict with that of the teacher. However, ten professionals considered it to be a beneficial addition to existing programmes and none wanted it withdrawn. Most recognised that the “shared experience” of caring for a deaf child enabled the support workers to get close to families and provide a link with the home, which helped the parents engage with the intervention of the multi-disciplinary team.

KEYWORDS:

• Early support
• childhood deafness
• parent-to-parent support
• neonatal screening

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Kinjal Mehta is a Clinical Audiologist who was employed at Whipps Cross University Hospital in Leytonstone, East London and was a member of the multi-disciplinary team providing Early Support for the families and children attending the EaST 17 Centre in the Chapel End Early Years Centre. She is currently undertaking post-graduate research at University College, London.

Enid Hilton is a Teacher of the Deaf employed by the Whitefield Academy Trust in Walthamstow. She is a long-standing member of the multidisciplinary team providing Early Support for the families, infants and pre-school children who attend the EaST 17 Centre.

Margaret Baldwin was Consultant Audiological Scientist at Whipps Cross University Hospital and a founder member of the EaST 17 Centre. She has now retired.

Peter Watkin was Consultant in Audiological Medicine at Whipps Cross Hospital and he has also retired. He was a participant in the initial setting up of the EaST 17 Centre as part of the UK Government DfES Early Excellence programme which explored and disseminated models of integrated professional practice.