The Library and Knowledge Service at Sherwood Forest Hospitals NHS Foundation Trust is commissioned to provide library services across Nottinghamshire, including community and primary care teams. In addition to traditional library services we provide information to support for patients, parents and carers to inform and empower them about medical conditions, treatments and services to support self-care.
This project was to deliver information to support the care, development and day to day life of children and young people with Autistic Spectrum Disorder (ASD) as recommended in NICE CG170: Information and involvement in decision-making (CG170 recommendation 1.1.11) This information was delivered through assorted media to suit the child or young person's needs and developmental level. The three main outcomes were the development of an online portal; a post diagnosis support pack and a collection of books for parents to borrow from the library.
Aims and objectives
The aim of the project was to empower families by arming them with the information and knowledge to support the care and development of their child. “By opening doors to support services and contact with other children and families with similar experiences improvements can be made in the lives of the child or young person and their family.” (CG128 NICE, 2011).
By signposting to sources of further information and support the secondary aim was to reduce the need for families to access the Community Paediatrics Team with questions and problems. The project deliberately used differing formats and media so that children, their families and carers could access the information in the way that they find easy and of most use. (Guide to Producing Health Information for Children and Young People, PIF 2014).
Clinicians recommend resources to families and carers when they attend for their first appointment or follow-up clinic. They can then borrow them in order to better support and care for their child. Resources and information can also be sent by post to the family. Groups of parents and carers are invited to a monthly session held in the library at King’s Mill Hospital to share information and to show them the books and resources we have. The hope is that this will cut the time the specialist nurses have to spend on appointments following a diagnosis of ASD or attention deficit hyperactivity disorder (ADHD).
Reasons for implementing your project
Information was already being given out to patients, their families and carers by a number of clinicians following diagnosis. The first task was to gather it all together and assess its validity and currency.
The library & knowledge team contacted local organisations and support groups to get copies of their latest leaflets and to update information already held. According to the Public Health England learning disability profiles, children with autism known to schools in Nottinghamshire was higher than the benchmark for England with a prevalence of 15.1 per 1000 population in 2017.
How did you implement the project
A multi-disciplinary team consisting of consultant community paediatricians, specialist nurses and a member of the Trust Library & Knowledge Team met regularly to share information and make suggestions on all aspects of the project. The cost of purchasing leaflets, books and DVDs for the post diagnosis pack and library collection was £2640.
The post diagnosis pack contains the relevant information and signposts to local and national services, support groups and charities. Following discussion the clinicians decided that the packs would only be given out by the Specialist Nurse following diagnosis so that they can explain the content and point families to services that would most benefit them as recommended in CG170: “When the needs of families and carers have been identified, discuss help available locally and, taking into account their preferences, offer information, advice, training and support.”
In addition social and emotional support is provided by inviting families to a session in the Library & Knowledge Service enabling them to meet other families, seek advice from the Specialist Nurses and access the resources.
The original plan for the portal was to include videos showing local support groups and their activities. However, following discussions with the Information Governance team this was not pursued due to issues around identification of individuals involved in the filming. An alternative, and cost effective, method of developing the web portal was sought and provided by our in-house Health Informatics Service. The portal page was specifically designed to be accessed by the child or young person directly allowing them to find out more about their condition. A graphic designer was able to draw some more appropriate images for children who access community services. A postcard and poster has been developed to promote the website.
A collection of books and resources to support children with learning disabilities, their families and carers is available from the Library at King’s Mill Hospital. A wide range of subjects are covered. These are condition specific for example ASD, ADHD, Down’s syndrome, Asperger syndrome, in addition to more general books that cover behaviour, relationships, eating, sleeping, learning and much more. There are text books as well as story books to read with children. The collection was developed following discussion within the group and by liaison with other health libraries that provide services to children and their families. Families who borrow books are asked to fill in a short questionnaire when returning books and resources from loan to establish their usefulness.
Two surveys were designed to gauge the usefulness of the portal and to get patient feedback around clinic visits and these have been included on the web pages. Feedback from one respondent said: “As a mum who's child is going through the ASD diagnosis process I found the website really useful”.
Patients, families and carers value the information provided by the Library as they trust that the information is current and from a reliable source.
“This project has enabled discussion in clinic to include clear signposting to parents about where to get help and support. This is particularly important in these challenging times with changes to service provision in the wider arena. Parents are able to self-refer, and access the information they feel is important with support from the Library team.”
“The Library team have provided an enthusiastic, knowledgeable and very supportive service to the Community Paediatric team to improve parent/carer and young person’s access to information around the local services and wider support”. Consultant Community Paediatrician.
This project has enabled us to work more closely with a range of different teams and organisations to provide a more joined-up approach. After a three month pilot the follow-up sessions to provide information and support for families in the Library was able to demonstrate a saving in specialist nurse time.
The sessions have been extended to 15 families per session and they are now offering a morning and afternoon group. The Specialist Nurses have also amended the timing of sessions to suit families. They have gained feedback from the groups, which suggest they are helpful to parents.
Key learning points
Involve your NHS Library and Knowledge Service who are already used to playing a key role in providing evidence for patient care as part of their services to healthcare staff. Library staff have skills in finding the evidence, appraising it and making it readily available in different formats as required. They can use these same skills in interactions with patients, carers and the public.
Make it easy for families to access the information by holding the sessions in the library or have member of the library team attend the clinic. Amend the timings of the sessions to suit families.
An NHS Library can be overwhelming to parents and carers so having a clearly signposted collection to identify the resources is essential. If possible also provide support during their first visit to help them sign up for membership and borrow books. As patients may attend hospital from neighbouring counties we compiled information about support groups for these areas too. An example is attached as supporting material.