Your browser is no longer supported

For the best possible experience using our website we recommend you upgrade to a newer version or another browser.

Your browser appears to have cookies disabled. For the best experience of this website, please enable cookies in your browser

We'll assume we have your consent to use cookies, for example so you won't need to log in each time you visit our site.
Learn more

Changing practice

Sex education for children with learning disabilities: rolling out a national resource

  • 3 Comments

Children and young people with learning disabilities have little education on sex and relationships. Specialist nurses developed a national resource to support staff  

Authors

Stephen Simpson, RNMH; Cherie Andrews, RNMH; Nicci Isaac, RNMH; all are children’s learning disability nurses, children’s learning disability nursing team, Leeds Community Healthcare.  

 

Abstract

Simpson S et al(2010) Sex education for children with learning disabilities: rolling out a national resource. Nursing Times; 106: 6, early online publication.

A children’s learning disability nursing team carried out an audit which highlighted that the sex education needs of this group were not being met. As a result, the team developed a resource to support professionals in delivering sex and relationship education. This has now been launched as a national document.

KeywordsLearning disabilities, Sexual health, Sex education

  • This article has been double-blind peer reviewed

 

Practice points

The teaching pack on puberty and sexuality for children and young people with learning disabilities (NHS Leeds, 2009) gives a starting point to deliver sex and relationship education to this group.

Nurses wishing to produce a similar resource should:

  • Gather the evidence - local, national, and international. Are there any policies or agendas to support your idea?
  • Have a vision but be prepared to compromise at times. Enter for awards, grants and become involved in opportunities to raise the profile of your work;
  • Carry out a pilot survey on the need for the resource. Ensure patient/service user involvement, participation and feedback;
  • Consider readability, accessibility and proof read the resource;
  • Enlist help on copyright from the NHS Library and informatics technicians;
  • Find a champion and ask for funding whenever opportunities arise.

 

 

Introduction

The children’s learning disability nursing team at Leeds Community Healthcare consists of 4.5 whole time equivalent registered learning disability nurses.

We are community based, mainly working with children and young people with severe and complex learning disabilities and their families. The team’s ethos is one of multiagency working, assessing service users’ individual holistic needs and then developing health action plans to meet those needs. The majority of referrals relate to behaviour. Sexual health work is a small part of our remit.

The need for action

In 2001, the team audited the amount of referrals for “inappropriate sexual behaviour”. The results highlighted that in most cases, children with learning disabilities received little or no sex and relationships education or support. The audit also showed our approach was reactive rather than proactive.

The team decided that these issues needed to be addressed. We liaised with professionals in education, public health and healthy schools advisers, and discovered that few staff were addressing the sexual health needs of this group. The majority of staff envisaged great difficulties in addressing these needs. We found that some of the available teaching resources were outdated and staff did not have the time, commitment or confidence to deliver them.

We carried out a literature search on the topic, which highlighted further reasons to pursue this work. It revealed a higher level of sexual abuse and exploitation among children and young people with learning disabilities (NSPCC, 2006). The University of Ulster and Family Planning Association (2006) said a “lack of acknowledgement of the sexuality of people with learning disabilities” means “their needs are being fundamentally ignored”.

This evidence indicated that a teaching resource needed to be developed that was easy to use and comprehensive, and could be used by all those involved in the care of this group.

The process

Initially we approached the local education authority about taking a more inclusive approach to sex and relationship educationfor children and young people with learning disabilities. At the time, they were happy for our team to go into schools but could not commit to the work themselves due to curriculum demands and staff availability.

From 2002, we decided to pilot workshops in some special schools and resourced mainstream schools, which may have a class, resourced unit or special facilities within the school for children with special educational needs.

Initially we chose schools that were more receptive to our idea. The team looked at the national curriculum and used a variety of resources to develop workshops that would create equal access to appropriate sex and relationship education (SRE) for those in mainstream education. In these schools, there was commitment, in terms of allocating learning support assistants’ time to help deliver the workshops, but the expectation was that the nursing team would continue to lead the programme.

Our vision was to change attitudes and build the confidence and capabilities of other staff members. To do this we involved educational staff and school nurses in the sessions to empower them to take ownership and commit to the work. One way to help them was to develop the workshops into a teaching pack in a format they could all deliver.

The team explored the funds available and contacted the regional Department of Health.

In 2005 we accessed money via public health/sexual health funding to produce 10 packs, which included design time, printing and manufacturing costs. We received support from the Leeds Design for Health team to produce the pack.

Format

Each teaching pack comprised 12 sessions delivered either as a course or as “stand alone” subjects. Each subject has guidelines and a list of the resources needed to deliver the session. Within each one, “homework” is used to encourage parents’/carers’ involvement. In addition, a session to establish a baseline assessment of service users’ knowledge was included. The pack is easy to read and available in Leeds via the Public Health Resource Centre library.

Initially 10 packs were available for loan to healthcare professionals. We hoped school nurses would take the lead in using the resource.

We entered the pack in the Nursing Times Awards 2006 and won the sexual health category. The judges said: “This fabulous project showed understanding, sensitivity and empathy.” A Nursing Times (2007) article followed, highlighting the pack and the award. This prompted national interest and demand from across the country to have access to the pack. The team kept a record of the enquiries to demonstrate the need.

We realised this was a huge national issue and that there was a need for a champion to develop further work in this area. During a forum on sexual health, a representative from the Leeds sexual health team and from the children’s learning disability nursing team met and shared practice issues. A gap in service provision was identified, as people with learning disabilities were not being included in initiatives, but the sexual health team lacked knowledge on how to bridge this gap.

In 2008, a meeting took place between members of the children’s learning disability nursing team, Sheffield Centre for Sexual Health, Leeds sexual health team and a representative from the DH.

The DH representative agreed funding for the Leeds sexual health team, who contracted the Sheffield Centre for Sexual Health to help publish a national version of the pack. A working group formed to develop the new pack; the content and illustrations were updated and altered to ensure a more specific and clearer resource.

National launch

After the revised pack was completed, we decided a national launch would be valuable. To gain maximum publicity, a first national conference on the sexual health needs of children and young people with learning disabilities was held in February 2009. Applications to attend the conference, held at the Leeds Hilton Hotel, exceeded capacity by 400%. The day’s purpose was to launch the pack and also raise awareness of the issue. Delegates received a pack to take back to their workplaces and Sheffield Centre for Sexual Health distributed packs via PCTs and healthy schools coordinators.

Evaluation

After the conference, delegates completed a questionnaire and we were pleased with the positive feedback. Two examples of questions and responses are shown below (Fig 1 and Box 1).

The team has also received both national and international enquiries. 


Box 1. Changing practice after the conference

Q. What are you going to do because of this conference/how will your practice change?

  • Over half (56%) said they would share their new knowledge with their teams and areas;
  • Nearly a third (31%) said they would use the packs to enhance their own practice;
  • Over a quarter (28%) said they would use them to support parents;
  • Sixteen per cent suggested using the packs to update training.

 

Next steps

Our next step is to complete an evaluation of the pack’s impact on children and young people’s education on sexual health and relationships. We are also trying to make the pack available in other languages.

As Nursing Times (2007) reported: ‘“We‘re proud of a good piece of work and we worked really hard. Our whole objective is to get a standard of sex education that will be equal to mainstream peers. We hope that if there is a resource out there, there’s almost no excuse not to use it.”’

 

Background

  • A number of policy documents identified the needs of children and young people with learning disabilities and supported our evidence on the issue, such as DH (2009; 2001) and HM Government (2003).
  • Reports on health inequalities (Nocon, 2004) also highlighted the need to address the issue of sexual health education and support for this group.

 

  • 3 Comments

Related files

Readers' comments (3)

  • Great Artilcle -well done

    Unsuitable or offensive? Report this comment

  • Very Good Daddy!

    Unsuitable or offensive? Report this comment

  • I found this article very informative. I am currently carrying out my dissertation in the area of sex education/self protection for young people with learning disabilities. These issues discussed here, in relation to a lack of appropriate sex education in schools were highlighted to me while working on placement.

    Student Social Worker

    Unsuitable or offensive? Report this comment

Have your say

You must sign in to make a comment

Please remember that the submission of any material is governed by our Terms and Conditions and by submitting material you confirm your agreement to these Terms and Conditions. Links may be included in your comments but HTML is not permitted.