From hearing screening to early intervention for deaf children and their families. (ICS-04)
Submitting InstitutionUniversity of Manchester
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
Around 800 children are born each year in England with congenital
permanent bilateral hearing loss and significant consequences for language
development and social-emotional wellbeing. A 15-year programme of
inter-disciplinary research made the case for the implementation of
universal newborn hearing screening in England; now the NHS standard of
care. Our subsequent studies developed a model of professional practice
adopted internationally. Our tools to evaluate service quality have been
adapted for use in the US, Canada and Australia. We have trained over 500
professionals in 6 countries.
See section 3 for references [1-6]; see section 5 for corroborating
sources (S1-S10); UoM researchers are given in bold. In REF3a and REF5
this case study is referred to as ICS-04.
The overarching aim of our research programme was, and continues to be,
to analyse the impact of routine early identification of deafness (in the
first few weeks of life) on families and services.
The research on which this case study is based began in 1997. The key
staff involved at the University of Manchester (UoM) are drawn from the
disciplines of audiology, social work, deaf education, epidemiology and
Key research staff:
John Bamford (Professor of Audiology, 1995-2008; retired)
Adrian Davis (Professor, 2003-2009)
Alys Young (Senior Lecturer, 2001-2005; Professor, 2005 to
Kai Uus (Research Fellow, 2001-2004; Lecturer, 2004 to present)
Wendy McCracken (Senior Lecturer,1995 -2012; Professor, 2012 to
Gwen Carr (Senior Lecturer, 2003-2009)
Helen Tattersall (Research Assistant, 2002-2006)
Ros Hunt (Research Associate, 2007-2011; Lecturer, 2011-2012)
Maria Gascon-Ramos (Research Associate, 2006-2009)
The key steps were:
- We were co-applicants leading an HTA review in 1997 which demonstrated
sufficient evidence to justify a pilot implementation within the NHS of
universal newborn hearing screening in England .
- We led the national evaluation of the implementation of universal
newborn hearing screening in England, funded by DH, from 2002-2004,
which was a multi-centre, mixed methods study. Covering 4 domains
(maternal anxiety; cost-effectiveness; parents' evaluation of hearing
screener and diagnostic practice; impact on audiological, educational
and social care services), the results demonstrated that: (i) adequate
specificity, coverage and yield could be achieved, justifying
progression to a national roll out of universal newborn hearing
screening beyond the pilot sites; (ii) cost effectiveness was
acceptable; (iii) National Screening Committee concerns about undue
maternal anxiety resulting from universal screen were not justified;
(iv) the impact on parents of early identification and early service
engagement created new challenges in psychosocial adjustment, which we
defined [2, 3].
- Through a subsequent grant from the National Deaf Children's Society
and the Department for Education and Skills (2004-2006) we developed, by
means of systematic review of literature, an underpinning theoretical
model driving a new approach to service provision for families with deaf
children (informed choice) which was published as guidance by DfES/DH
and adopted internationally .
- We extended our work to incorporate a pan-disability perspective,
leading the national evaluation of the DfES/DH Early Support programme
for families with deaf and disabled children throughout England
- In a prospective study of the child and family development of early
identified deaf infants (2005-2008), we developed a standard instrument
for analysing the quality of multi-professional early intervention with
deaf children and their families from the perspective of parents. Its
reliability and validity were proven and it is now used widely in
research and professional practice .
References to the research
1. Davis A, Bamford J, Wilson I, Ramkalawan T, Forshaw M, Wright
S. A critical review of the role of neonatal hearing screening in the
detection of congenital hearing impairment. Health Technology
Assessment, 1997, 1, 1-176. http://www.hta.ac.uk/fullmono/mon110.pdf
3. Young A.M, Tattersall HJ. Universal newborn hearing
screening and early identification of deafness: Parents' responses to
knowing early and their expectations of child communication development. Journal
of Deaf Studies and Deaf Education, 2007, 12, 209-220.
4. Young, A.M., Carr, G., Hunt, R., McCracken, W., Skipp,
A., Tattersall, H. (2006). Informed choice and deaf children —
underpinning concepts and enduring concerns. Journal of Deaf Studies
and Deaf Education, 2006, 11: 322-336. DOI:
5. Young, A.M., Temple, B., Davies, L., Parkinson, G.,
Bolton, J. Disabled children (0 to 3 years) and integrated services — the
impact of Early Support. Health and Social Care in the Community,
2008, 16 (3), 222 - 233. DOI: 10.1111/j.1365-2524.2008.00765.x
6. Young, A.M., Gascon-Ramos, M., Campbell, M. Bamford, J.
The Design and Validation of a Parent-Report Questionnaire for Assessing
the Characteristics and Quality of Early Intervention Over Time. The
Journal of Deaf Studies and Deaf Education, 2009, 14 (4), 422-435.
Details of the impact
See section 5 for numbered corroborating sources (S1-S9).
The national implementation of universal newborn hearing screening was
completed in 2006 and to date over 5 million babies have been screened and
over 9,500 identified with permanent bilateral hearing loss (S1). The
impact of our research work, which coincided with the initial
implementation of universal newborn hearing screening, has continued well
into the current assessment period (2008-2013). Both the follow-on
research we have completed and the international recognition of our
original studies have formed the basis of national hearing screening and
early intervention developments around the world.
Our original research pinpointed the potential challenges that the
post-screening agencies, most importantly Paediatric Audiology Services,
faced when dealing with the assessment and management of very young
infants and providing appropriate support to their families . It has
influenced developments in paediatric audiology following early
identification of deafness both in the UK and internationally (S2). The
empirical studies of how families conceptualised the impact of early
identification and its influence on their expectations of services and
their children's development were the first such studies of their kind and
have had a strong influence on how universal newborn hearing screening has
been implemented in several countries. Our studies have contributed to and
been cited in international consensus statements including Best
Practices in Family Centred Early Intervention for Children who are Deaf
and Hard of Hearing: An International Consensus Statement (2013)
(S3) and Guidelines for Identification and Management of Infants and
Children with Auditory Neuropathy Spectrum Disorder (2008) (S4)
where our unique contribution is noted: "Your discussion of challenges
to both parents and professionals in the identification of a potentially
transient finding is particularly important and continues to be a vital
consideration in discussions of the evaluation of management of ANSD"
Our research on the model of informed choice in multi-professional
service resulted in two guidance documents published by the Department of
Health, on informed choice practice for professionals and parents (S5).
The work has formed the basis of how British Columbia, Canada, has
developed its approach to early intervention services for families with
deaf children: "Your research articles and training on the topic of
"Informed Choice" have had significant impact on services for families
with Deaf babies in British Columbia...This included: Provincial
standards for verbal and written information provided to families after
identification of hearing loss, ensuring families had access to full and
unbiased information. Provincial training of all service providers on
the topic of Informed Choice. A Program Evaluation Family experience
survey, which included questions to capture the parent experience of
services through the lens of informed choice" (S6).
The research work on informed choice resulted in an international
training programme led by Young and Carr, who have trained
over 500 early intervention professionals working with early identified
deaf children, in British Columbia (2008) [150 professionals], South
Africa (2009) [90 professionals], in Norway (2011) [120 professionals],
Quebec (2013) [100 professionals], Victoria and New South Wales, Australia
(2013) [80 professionals]. The International Consensus on Family
Centred Early Intervention (2013) draws extensively on our research
(S3): "Dr. Young's work on the theoretical model of informed choice
forms the foundation of the third core principle in this document. The
third principle provides guidelines for working with families to support
informed choice and decision making. Dr. Young's research factors
prominently into the concepts presented in this landmark document"
(S7). Our work also forms a key component of the international Global
Coalition of Parents of Children who are Deaf and Hard of Hearing
statement (2010), which supports the work of various parent-driven
organisations internationally; "Informed choice, as outlined in the
guidance documents, is a key component of the protocols and practices we
wish to be implemented across the world to improve outcomes for deaf
children and their families" (S8).
The development of the standard instrument for assessing the quality of
multi-professional services for families with deaf children (the MVOS) has
been made freely available for translation and adaptation through a
University of Manchester web link since 2010 (S9). To date 48
people/organisations have registered their use of it across 6 countries.
The version for Queensland Australia (MVOS Qld) is now used as a standard
element of assessment protocol with all families of early identified Deaf
children in that region (S10).
Sources to corroborate the impact
S2. American Academy of Audiology profile of John Bamford outlining the
influence of his contribution to hearing screening research and practice.
S3. Available at: http://jdsde.oxfordjournals.org/content/18/4/429.full.pdf+html
S4. Available at:
A corroborating statement from Professor, Department of Hearing and Speech
Sciences, Vanderbilt University, USA, on the impact of the international
guidelines on ANSD and the contribution of the work at the University of
S5. DfES/DH. Informed Choice, families and deaf children:
professional handbook. 2006 Archived at: http://dera.ioe.ac.uk/id/eprint/1929
DfES/DH. Helping you choose: making informed choices for you and your
child. 2006 Archived at
S6. A letter from the director of the British Columbia Early Hearing
programme on the influence of the theoretical work on informed choice in
shaping the province wide screening programme and the contribution to
training of the related documents published by the Department of Health
and written by the research team.
S7. A corroborating statement from Director, Center for Childhood
Deafness, Boystown Hospital, Nebraska, USA, on the influence of the
research work on family adjustment to newborn hearing screening and
informed choice on international practice in family centred early
intervention with deaf children and their families.
S8. Position statement available at:
A letter from the CEO of Aussie Deaf Kids, a parent driven organisation
for deaf children and their families which is an affiliated member of the
Global Coalition of Parents of Children who are Deaf and Hard of Hearing
(a service user organisation) demonstrating the use of the research work
in supporting families and services post early identification and its
impact on families.
S10.A letter from Research and Service Development Co-ordinator, Hearing
Impaired Children's Therapies Inc., Queensland Australia on their
adaptation and use of the MVOS.