KidsAudiologist

Archive for the ‘deaf’ Category

I have been asked to speak a few times on transition of young deaf people to adult hearing services – on the challenges they report and what good practice in transition looks like. I start by saying that I believe good transition is reliant on good participation of children and young people – listening to their views, meaningfully involving them in decisions that affect their care and in helping shape the services they receive. But I’ve also put together this post to answer some of the questions I get asked and signpost to other useful resources.

(This information was previously available on the NDCS website but has been re-published here with updated links and resources.)

Definition of transition:

“Transition can be defined as a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-oriented health care systems.” (Transition: getting it right for young people, DfES & DH, 2006)

Government policy emphasises that this is not solely a matter for healthcare professionals, since long-term conditions also have important educational, social and financial implications. Transition planning in the Health Service must secure optimal health care for the young person but it is equally important to ensure that their wider needs and their aspirations for their future are at the centre of the planning process.

Challenges described by deaf young people and their families during transition:

  • Up to 40% of deaf young people will have one or more additional health needs. These conditions may interact and impact on other aspects of their lives.
  • Young people with complex disability may have particular problems when there is no equivalent adult service able or willing to take on their long term health care and medical supervision.
  • Deaf young people are often used to seeing the same small audiology team who know them well and may see a doctor regularly.
  • Deaf young people often describe problem with communication when they move clinics, both one-to-one with clinicians and when attempting make appointments.
  • Severe/profound hearing loss from childhood is a rare occurrence in an adult clinic and deaf young people may feel that staff don’t fully understand their particular needs.
  • Deaf young people are often confused by the differences between children’s and adult services. For example why do they need to change hearing aids simply because the adult service uses different models, why does their hearing aid prescription change from DSL to NAL, why do they need to see a GP for ear syringing when they have always had microsuction at the clinic before, why can they no longer call or email their audiologist directly with a problem but need to go through a general hospital booking system, and understanding open repair clinics when they are used to ringing up and collecting a replacement hearing aid ready programmed when needed?
  • Some deaf young people are unable to make appointments themselves using a telephone only booking system and resent needing to ask another person to make appointments for them.
  • Deaf young people are often confused by the differences between services in different areas such as when they live away from home during higher or further education.
  • Deaf young people are frustrated by needing to repeat their story each time they see someone new and there are particular challenges when notes aren’t transferred between services.
  • Deaf young people describe feeling very uncomfortable in general waiting areas with elderly patients.
  • Deaf young people vary enormously in their development and readiness to move on to adult services. They welcome flexible transfer ages and being fully involved in the decision when to change.
  • Deaf young people have been left with no service provider when the children’s service ended at 16 and their new adult service didn’t take them until they were 18.

What deaf young people and their families welcome:

  • Flexible transfer ages taking into account the young persons needs and wishes. In education the formal transition planning process starts at 14 and it may be appropriate to begin discussing audiology transition around the same time.
  • Support in acquiring the knowledge and skills needed to navigate and make best use of adult hearing aid services.
  • Holistic information on all aspects of health, educational/vocational and social needs into adulthood.
  • Being given the opportunity to foster independence by talking to them directly and maybe without the parent present.
  • Being able to take more control and increasing self-management.
  • Having a named person/transition worker they can contact with any problems.
  • Not being talked to like a child and feeling that clinicians are talking to their parents instead.

Implementing transition services:

  • Poorly planned transition from children’s to adult health services can be associated with increased risk of non-adherence to treatment and loss to follow-up, which can have serious consequences for the young person.
  • Successful transition planning and programmes are crucially dependent on collaboration between children’s and adult services as well as engaging with young people to fully understand what they need and expect from the process.
  • Transition should be viewed as a process and not as a single event and needs to be flexible enough for individual needs to be met.
  • Staff working with young people should balance the need of the young person for privacy and confidentiality, and their wish to take increasing responsibility for their own health care, with the need for their parents to have sufficient information to provide the support that young people often require.
  • There are several models for good transition and there is no clear evidence that one is superior.

Useful NDCS resources

Commissioning guidance

This leaflet is written for those responsible for commissioning audiology services for teenagers and young adults, in particular those who have grown up with congenital or acquired permanent childhood hearing impairment (PCHI). It highlights the key differences between paediatric and adult audiology care, and the main challenges deaf young people meet when transitioning between services. It contains quality statements that should be considered during the commissioning process to ensure appropriate services are available to meet the needs of young adults.

Cochlear implants; young people’s views

Research funded by NDCS and carried out by the Ear Foundation into the views of young deaf people who use a cochlear implant.

Information and events for young deaf people aged 14+

For a guide to all the information resources and events NDCS runs for young people over the age of 14 years click here.

The NDCS Buzz website also has lots of information  for young people.

Quality standards and good practice guidelines in transition

The NDCS Quality Standards ‘Transition from paediatric to adult audiology services: Guidelines for professionals working with deaf children and young people‘ (2011).

NDCS/NHS Devon Transition Project

During 2009-10 NDCS and NHS Devon undertook a joint project as part of the NHS Improvement Pilot Projects. A copy of the poster presentation is available here and the final report is available here.

‘Over to You’ Project

Over to you was a Department of Health funded project that NDCS  undertook in partnership with the boroughs of Newham, Tower Hamlets and Hackney in London between April 2010 and March 2011. Working with volunteers running events for deaf young people aged 13-16 years, the project aimed to improve and record deaf children and young people’s experiences of audiology services. You can download the final report from the project here.

‘Who am I?’ Project

Who am I? was a three-year project – supported by The National Lottery through Big Lottery Fund – for young deaf people aged 13 to 19-years-old and their parents living in Scotland which ended in 2011. The project aimed to improve young deaf people’s self-esteem so they feel comfortable with their deafness and confident about being independent in a hearing world, and encourage parents to feel positive about their child’s transition towards independence and be confident in supporting them.  The Who am I? project has produced two booklets, one for parents featuring tips from parents and young deaf people, and one by young deaf people for young deaf people. Both come with a DVD featuring deaf young people and their families telling their own stories, the challenges they have faced and how they have overcome them. The DVD shows people that being deaf is not an obstacle to having a great life and positive future. You can download the booklets ‘Who am I? Deaf young people share their stories’ here and Who am I? Parent to parent here.

NDCS presentation

You can download a presentation I gave in February 2016 on transition here.

 

Useful resources produced by other organisations

Transition arrangements for young people with complex health needs from children’s to adult services

This themed review by the Care Quality Commission looked at the arrangements made for children with complex health needs as they move from children’s to adult services. Download copies of the report From the pond into the sea; Children’s transition into adult health services 

Department of Health

Publications, resources and literature review on transition available here  including Transition: Getting it Right for Young People (DH, 2006)

National Sensory Impairment Partnership (NatSIP)

NatSIP published ’14+ Transitions Protocol and Recommendations for Young People with Sensory Impairment’ in February 2012. The document is available to download here.

Action Plan on Hearing Loss 

NHS England & Department for Education published What Works: Hearing Loss and the Transition to Adulthood (2017).

Preparing for Adulthood

The Preparing for Adulthood programme (PfA) is delivered by the National Development Team for inclusion (NDTi). The programme is funded by the Department for Education as part of the Delivering Better Outcomes Together consortium.

Not Just a Phase: A Guide to the Participation of Children and Young People in Health Services

Plus updated resources to support the guide published by the Royal College of Paediatrics and Child Health are available to download here.

Participation Works

Participation Works is a consortium of six national children and young people’s agencies that enables organisations to effectively involve children and young people in the development, delivery and evaluation of services that affect their lives.

For further information and to download useful resources click here

Transition Information Network

The Transition Information Network is a specialist network of the Council for Disabled Children set up to provide targeted information and resources about transition through online resources, publications and events. It is a source of information and good practice for disabled young people, families and professionals. For more information click here.

You’re Welcome; Making health services young people friendly (DH, 2007)

The You’re Welcome quality criteria sets out principles that will help health services become young people friendly. It covers areas to be considered by commissioners and providers of health services. Content is based on examples of effective local practice. This second edition includes a new section covering Child and Adolescent Mental Health Services. You’re Welcome has been included in the NHS Operating Framework for 2009/10 and highlighted in DH/DCSF Healthy lives, brighter futures – the government strategy for children and young people’s health. Further information here.

 

 

 

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Yesterday I attended the launch of the new National Commissioning Framework for Hearing Loss Services.

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This is a document was developed by members of the Hearing And Deafness Alliance (a group of representatives from professional organisations, charity sector and patient groups) with NHS England and follows the launch of the Government’s cross-sector and cross-departmental Action Plan on Hearing Loss last year.

The new framework is aimed at supporting NHS commissioners in ensuring they understand the importance of services for people with hearing loss and the potential impact of un-managed hearing and communication difficulties. The document clearly indicates that it covers the whole age range from birth onwards but understandably given the much larger numbers involved, does have some emphasis on age-related hearing loss. But section 3.1 does make it clear that CCGs should be familiar with their commissioning responsibilities in relation to hearing and wider audiology services and appendix 3 helpfully clarifies the responsibilities of CCGs, NHS England and PHE in the complex environment of commissioning the various parts of a child’s audiology journey. Finally, section 8 stresses the need to move towards more outcome based commissioning and the crucial role of service specifications in setting out the key requirements for delivery of the service.

I was therefore very pleased be invited onto the Children’s Services Content Group and to lead on developing a model service specification for commissioners on paediatric audiology services along with a series of suggested outcome measures for children plus service performance outcomes, that services and commissioners can use to measure quality of the service. A link to this document is contained within the Framework or can be downloaded here. This is the first time we have had children’s outcomes used as commissioning measures of quality and we look forward to feedback and developing these further.

I’m now looking forward to working with NDCS colleagues to share this suite of documents widely with our networks, including service professionals and commissioners.

 

 

We know that children children and teenagers are the experts in their own lives and have the right to be meaningfully involved in all decisions that affect them. The ‘right to participate’ is one of the guiding principles enshrined within the United Nations Convention on the Rights of the Child (1989) and government policy has long emphasised the importance of listening to, as well as the involving children, young people and their parents in shaping the services they receive, for example Aiming High for Disabled Children (HM Treasury & DfES, 2007), You’re Welcome (DH, 2007), and the Children and Families Act (2014).

In practice many of us find this very challenging in our day-to-day practice. Participation is not fully embedded in the culture of the NHS and in particular in services for disabled children, those with delayed communication skills or communication impairments, and deaf children and young people who primarily use other languages to ourselves, such as BSL users.

‘Participation’ could mean everything from participating more effectively in their appointments, taking greater responsibility for asking for and responding to information, being able to advocate for and engage with their own care, to working with them to develop services that more closely meet their needs.

I have put together a list of useful resources to support audiologists and other health professionals in improving participation of deaf children and young people in audiology and other health settings:

Information for children and young people for resources developed for deaf children and young people, producing your own information for deaf children and young people, and information for children and young people on their rights when using NHS services

Communicating and decision making with deaf children and young people for resources on improving communication

Young peoples views of the services they receive and involvement of children and young people for resources on their views

 

Resources to support Improving participation of children and young people in audiology:

First stop – The Buzz – NDCS website especially for children with sections for children aged 8-11 years and young people aged 12-18 years. Click on ‘info & advice’ section in the 12-18 years section, for information written for teenagers including the ear, hearing & deafness, hearing aids & cochlear implants, audiology & transition, as well as lots more general information about life! Plus some videos made by teenagers discussing cochlear implants, changing the tubing in their hearing aids, and using radio aids for listening to music.

Also available – comics for the under 10‘sGoing to the Hearing Clinic’, ‘Harvey gets grommets’ and ‘Ali gets hearing aids’.

If you’re interested in producing information for children yourself then read Guide to Producing Health Information for Children and Young People (PIF, 2014)

For advice on making your information resources accessible to deaf children and young people download this NDCS guide How you can make your resources accessible to deaf children and young people (2013)

The NHS Youth Forum has a series of posters/leaflets on young peoples rights when using NHS services (2015)

Get your rightsan interactive website designed in partnership with children and young people to explain their rights when using the NHS. It includes videos from young people telling their stories about how the rights have made a difference to them, and messages from professionals explaining why they value young people’s rights. The website is based on research that found that children and young people did not know about the NHS Constitution and did not understand that they had rights and that this was having a negative impact on their experience of using the NHS (Council for Disabled Children and National Children’s Bureau, 2015)

Your Rights, Your Future – is a resource developed in partnership with disabled young people. It provides training and interactive activities to help young people understand the Children’s and Families Act 2014 and what is means to them (Council for Disabled Children, 2015)

Resources to support Improving participation of children and young people in audiology:

Deaf Communication Matters (Disability Matters, 2015) This free e-learning module uses video of deaf children and young people sharing some of the typical barriers they encounter and showing the learner simple steps to take and adjustments to make to overcome those barriers and enable successful interaction with them. The module takes about 20 minutes to complete.

How to involve children and young people with communication impairments in decision-making (National Children’s Bureau, 2008)

Triangle – training pack ‘Three Way Street’. Communicating with children is often a three way event, involving a parent or carer or other accompanying adult. This pack provides a model for three way communication in which the child is central, and demonstrates practical, evidence-based strategies to establish direct communication with a child in the presence of another adult. Three Way Street is relevant for a multi-professional audience and can be used at different levels with social workers, doctors, nurses, teachers, early years workers and others working with children. Triangle is an independent organisation working directly with children and families, giving expert opinion to the courts and teaching and advising parents and professionals.

The My World tool from the Ida Institute can help facilitate an understanding of hearing loss from the child’s point of view. “The tool consists of three different environments: a classroom, a home, and an outdoors area. The child can place movable figures and everyday objects in the various environments to describe communication successes and challenges in every day life. By playing with the tool components, the child can externalize the hearing loss and discuss how they communicate with others in a concrete and non-threatening way. The tool can help you uncover information about the child’s communication patterns, reinforce positive patterns and formulate a strategy for coping with every day challenges.”

Counseling Strategies for Tweens/Teens with Hearing Loss is a pre-recorded eLearning course which is free to view from AudiologyOnline. “Tweens and teens with hearing loss face many challenges and often have no one to talk to about them. This presentation will describe a range of strategies designed to give teens an opportunity to talk to us as we redefine our role to listener and supporter.”

Fostering Self-advocacy in Elementary-Aged Students with Hearing Loss is a pre-recorded eLearning course which is free to view from AudiologyOnline. “Fostering self-advocacy in elementary-aged students with hearing loss is a complex, multi-parameter endeavor. This course will introduce adaptation of the instructional concepts of coaching and gradual release of responsibility involving the constituents (the student, the family, and the school personnel) and the 3-prong continuum involving the “operator” (the student), the “equipment” (ALDs), and the “listening environment”. Specific examples will be provided to optimize the course participants understanding of these concepts.” A transcript the presentation is also available to read here.

Tips for Teens – Use Your IEP Meetings to Learn How to Advocate for Yourself is a factsheet for older children and teenagers explaining how self-advocacy is a key step in becoming an adult – looking out for yourself, telling people what you need, and knowing how to take responsibility – with advice on how to do this.

Treating adolescents- Why won’t they follow my advice?, (Hearing Journal, Oct 2011) contains strategies for avoiding fruitless power struggles with adolescents and increasing the likelihood that they will follow your recommendations.

“Mind the Gap” (Phonak Junior News (Canada) Issue 7, July 2011) “Quite often, audiologists and teens stand on two sides of the “hearing aid/FM use” gap. Audiologists are keen to see teens and pre-teens with hearing loss use their hearing aids full-time. Our patients, however, often decide not to adhere to this recommendation. The opposing positions create tension, leaving audiologists feeling frustrated and patients feeling angry and unsupported.

How to mind this particular gap? Teens are not known for their gregarious nature with adults, so we need to consider how we share the “talk time.” Estimate the amount of minutes given to the patient to carry the conversational ball; it’s quite possible we do virtually all of the talking.

Instead of attempting to establish a rapport with this age group, we might strive to develop “common ground.” Although these concepts may sound interchangeable, in clinical settings developing common ground means a concerted effort to exchange perspectives specifically to help each person understand the other’s views. Until we know what a teen’s views are regarding his or her life with hearing loss, we can’t expect to be trusted, and we will not be made privy to specific dilemmas.”

Elkayam, J., & English, K. (2003). Counseling adolescents with hearing loss with the use of self-assessment/significant others questionnaires. Journal of the American Academy of Audiology, 11(9), 485-499.

English, K. M. (1997). Self-Advocacy for Students Who are Deaf or Hard of Hearing. Austin, TX: Pro-ed.

English, K. M. (2002). Counselling Children with Hearing Impairment and Their Families. Boston: Allyn and Bacon.

Resources to support Improving participation of children and young people in audiology:

Guidelines for research with children and young people (National Children’s Bureau, 2011)

Listening to children’s views on health provision – a rapid review of the evidence (National Children’s Bureau, 2012)

The Participation Toolkit (Scottish Health Council, 2010)

Adolescent health in the UK today (ChiMat, 2014)

A literature review on the participation of disabled children and young people in decision making (VIPER project, 2014)

Getting services right for adolescents (Health Service Journal, March 2010)

Not Just a Phase; A Guide to the Participation of Children and Young People in Health Services (Royal College of Paediatrics and Child Health, 2010)

‘You’re Welcome’: quality criteria for young people friendly health services (Department of Health, 2011)

Understanding what matters A guide to using patient feedback to transform services (Department of Health, 2009)

Quality of Life of Deaf and Hard-of-Hearing Children and Youth (Project HQL) (University of Washington & partners, 2010)

Over to you report (NDCS, 2011) Over to you was a one-year project which looked at the experiences of deaf young people of their audiology service. This project was completed jointly by NDCS, in partnership with the audiology services based in the London boroughs of Newham, Tower Hamlets and City & Hackney. From April 2010 to January 2011 we met with 100 deaf young people aged 12 to 18. ”

Audiology; What young people think (NDCS, 2011) A leaflet written for young people about the results of the Over to you project

Going to the audiologist; Deaf young people have their say (NDCS, 2014) Between April and August 2014, NDCS asked deaf children and young people aged 12–18 to tell us about their experiences of going to the audiologist

Hearing aid wearers are most familiar with their ‘T’ switch to help them hear better in public places fitted with loop systems, such as churches, theatres, banks and post offices. These aren’t situations we generally consider as being very relevant to children and young people but a new generation of assistive devices have the potential to make hearing aids ‘cool’, improve their listening experience, and increase opportunities for language and social development.

Induction loop technology
Induction loop technology is the oldest of the wireless technologies and works with a telecoil, which has been a standard feature in NHS hearing aids for many years. Room loops help overcome some limitations of hearing aids and reduce the negative effects of distance and background noise, improving the signal-to-noise ratio and reducing listening effort for the wearer.

During the analogue era of hearing aids the telecoil was always available and a visual MTO switch meant that wearers were prompted to ask questions about it or go out and research it even if the audiologist didn’t directly tell them about it’s use. New and innovative products which use magnetic induction technology are making mainstream products more accessible to deaf children enabling them to share experiences with their hearing friends. These include inductive earhooks, neckloops and Bluetooth streamers with neckloops. These products allow a child wearing a hearing aid to listen to mobile phones or an entertainment device, such as an iPod, MP3 player, laptop or portable games console.

Modern digital hearing aids now have multiple programme capability but the telecoil setting must be activated. The wearer must be able to reliably change programmes as there is no visual indicator the ‘T’ setting is being used. Our experience at NDCS is that the majority of children and young people attending our events or visiting the Listening Bus do not know what the telecoil is and do not have it activated and so are unable to try out equipment that could be of benefit.

Deaf children and young people asking for more information
In 2007 NDCS carried out a consultation with nearly 1500 children and young people aged nine to 18. The results found significant numbers of children and young people in both the younger and older age groups wanted more information on deafness and the technologies that can support them.

Download the full article – Telecoils – making hearing aids cool for kids? – that was published in March 2013 in the UK edition of Audio Infos magazine to answer some common questions we get asked:

  • Using loop technology with children
  • Not deaf enough for a ‘T’ setting?
  • Too young for a ‘T’ setting?
  • Too hard explaining the technical information to a child?
  • Worried about noise interference?
  • T or M/T?
  • They already have an personal FM system. Isn’t that better?
  • I don’t feel confident recommending assistive listening products?

One more tool in their toolbox!
Loop technology has moved out of dusty meeting halls and has become very relevant to deaf children and young people. At the same time deaf children and young people are reporting that they need more information about both deaf and mainstream technologies and how they can access these. New technologies are making mainstream products more accessible to deaf children enabling them to enjoy the same communication, music, and entertainment devices as their hearing peers. Telecoils are one more tool for children, with the potential to enhance their language, educational and social development.

Further information

For information on the wide range of products and equipment that might be helpful for deaf children at home, at school or when socialising with friends, as well as information on the using the free Technology Test Drive to trial new equipment head to NDCS here.

Telecoils – making hearing aids cool for kids? (Audio Infos, Mar 2013)

Can Kids Benefit From Hearing Loops? (Jane Madell, Jan 2015)

 

 

 

 

 

 


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