KidsAudiologist

Archive for the ‘rights’ Category

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)

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


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