Content Governance – How we manage our content

This document describes how we develop and maintain the content of About Cerebral Palsy, a resource on Cerebral Palsy Alliance’s website. We aim to be an authoritative, unbiased, informative, current and evidence-based curator of information about cerebral palsy.
The mission of About Cerebral Palsy is to provide up-to-date, evidence-based and reliable information to assist people with cerebral palsy, their families and health professionals to understand cerebral palsy and to make informed decisions about interventions and therapies.

All material on About Cerebral Palsy is contained on clearly identifiable Cerebral Palsy Alliance website pages.

About Cerebral Palsy has 3 sections

  1. What is Cerebral Palsy? provides specific information about the types, causes, severity and signs of cerebral palsy and general information about interventions.
  2. Interventions and Therapies contains information to help people with cerebral palsy and their families make decisions about suitable interventions. This section is based on the best available research evidence.
  3. Assessments and Outcome Measures gives a snapshot of measures commonly used as part of clinical assessment and management with people with cerebral palsy. This section is also based on the best available research evidence.
  4. The information contained in About Cerebral Palsy is intended to support, but not replace, information exchanged, and decisions made, between people with cerebral palsy, their families and health professionals.

We have written About Cerebral Palsy for people with cerebral palsy and their families and carers. We also aim to provide information to health professionals working with people with cerebral palsy. To meet individual information needs and reading styles, we have included parts of the material in an easy to read format and other material in more detail using more technical language.

We anticipate that others who have an interest in cerebral palsy may also access the information. Amongst these groups there may be secondary and tertiary students, academics, researchers and educators.

About Cerebral Palsy is written by qualified health professionals and researchers, most of whom work for Cerebral Palsy Alliance. Most material is written in consultation with people with cerebral palsy and their families, as well as expert reviewers. See our list of contributors.
Our Content Governance Group is comprised of qualified health professionals, researchers and communicators. The role of the group is to ensure we follow the guidelines we have developed which assure that the content of About Cerebral Palsy attains the high standards to which we aspire. The Content Governance Group approves all final content in About Cerebral Palsy. See Governance Group members.
We have different methods for writing the material for each of the three sections of “About Cerebral Palsy”.
Topic selection

Our Content Governance Group maintains currency with the international literature about cerebral palsy and identifies existing material which requires updating and new material to be added.

Writing content

Writing and updating content is completed by individuals or small teams of Cerebral Palsy Alliance health professionals and/or researchers. These professionals combine their expertise and knowledge of cerebral palsy with the information generated from appraising the relevant international literature to develop the content for What is CP? Our web team is integral to presenting the content in a way which is attractive, accessible, concise and easily scannable to locate relevant material.

Topic selection.

Our Content Governance Group consults with people with cerebral palsy and their families, and clients and health professionals of Cerebral Palsy Alliance, to identify topics which are considered current, achievable and relevant.

Writing content

We follow a detailed and rigorous process to write “Interventions and Therapies” material. The process is summarised below:

  • Finding and appraising the best available evidence. A health professional and researcher collaborate to locate the best available research evidence for each intervention and therapy. The research evidence is carefully read and critically appraised to decide whether the evidence is of high or low quality, and how trustworthy it is in informing us about the topic.
  • Expert review. Each topic is reviewed by two independent Australian or international experts.
  • Webwriter. The topics are edited by a webwriter to ensure that the material is easy to read, clear and concise.
  • Consumer review. Two people with cerebral palsy and/or family members read and appraise each topic. We receive feedback which incorporates the experiences and wisdom of people living with cerebral palsy.
  • Content Governance Group approval. Our Content Governance Group approves the final content before being given to our Web Team for publishing.

Find more details on how we find and appraise the research evidence for Interventions and Therapies.

Topic selection.

Assessments and outcome measures included in this section are those that link directly from Interventions and Therapies topics. In addition, we may include other frequently used measures or those which are specific to people with cerebral palsy and their families.

Writing content

A health professional or researcher from Cerebral Palsy Alliance searches for research about each assessment and outcome measure. The research is critically appraised and then a short description of the assessment, who it is used with and by whom, and a summary of what is known about the quality of the measure is written. Content is reviewed by a second health professional or researcher from Cerebral Palsy Alliance before being approved by our Content Governance Group.

MORE INFORMATION ON WRITING THE TOPICS

Our content is written to incorporate the expertise and knowledge of our health professionals who work with people with cerebral palsy and their families as well as the best available evidence from national and international literature. We provide details of published sources that were used to generate our content. We link each source to the full publication or website where it is freely available and does not breach copyright laws. If an article is not freely available, we link to an abstract which provides more information of the content of the article.
We are committed to involving people with cerebral palsy and their families in About Cerebral Palsy – aiming to ensure that our topics meet information needs, are accessible and easy to read. We consulted with people with cerebral palsy and their families as part of establishing About Cerebral Palsy, the development of each topic and in an evaluation following the publication of the first phase of topics.
Material in the Intervention and Therapies and Assessments and Outcome Measures sections are reviewed every 2 years including refreshing and updating searches for the best available evidence. We will systematically update pre-existing material contained in What is CP? over the course of 2016 and continually update these topics every 2 years.

The date of review and update is included with each topic.

Interventions and Therapies topics have been classified according to key cerebral palsy-specific criteria (age, severity and type of cerebral palsy etc) to ensure the material is optimised for searching and to enable users to identify information that is relevant to their unique needs. We continue to work on ways to make the information readily accessible.
Our process for having two authors identify and appraise research evidence ensures research literature is synthesised in an objective and unbiased manner and that we provide appropriate and balanced information regarding the benefits or harms of an intervention.

We do not aim to endorse any particular product or brand, rather the findings of the best available research and current clinical best practice.

Where possible, we aim to inform users of About Cerebral Palsy about different options to address issues of concern and therapy needs. This is usually achieved by links between different topics within our website.

We welcome feedback, comments and suggestions on material in About Cerebral Palsy and also about omissions in content. We provide opportunities to contact us on each Interventions and Therapies page and in a generic “Tell us what you think” option.

We also invite users of About Cerebral Palsy to provide us with an email address which we use solely for the purpose of providing updates about new topics and content, or enhancements to the website.

We undertake to evaluate the content, appearance, navigation and usability of About Cerebral Palsy during key phases of its development and upgrading. Evaluation will involve people with cerebral palsy and their families, health professionals and other stakeholders. Focus groups and online surveys will be the predominant means of seeking input to these evaluations. The last evaluation was completed in July 2015.

OTHER RELEVANT POLICY INFORMATION

Cerebral Palsy Alliance respects and upholds the rights of people to privacy protection under the Australian Privacy Principles, as outlined in the Privacy Amendment (Enhancing Privacy Protection) Act 2012. This regulates how we collect, use, disclose and hold personal information. Find more details on our Privacy Policy.
We aim to maintain our website according to Content Accessibility Guidelines WCAG 2.0 (Level AAA). Each time a page is updated our checker process will scan the updated content and alert the web and digital team if there is non-compliance. We aim for our web pages to be mobile responsive and readily accessible on mobile and tablet devices.
We welcome feedback and comment on the content of the website – this challenges us to retain high standards and to be an authoritative source of information about cerebral palsy. The strength of the research evidence will be one of our key guiding principles, we also acknowledge the need for balance in interpreting and communicating research findings.
Our process involving authors, peer review, consumer review and Content Governance Group approval assists us to achieve our aims of respecting both the research evidence and the need for balance, especially of multiple stakeholder views and perspectives.
In the event of potential controversy, we will listen carefully to the views of those involved, revisit the research evidence, seek the expertise of our expert and consumer reviewers and, if required seek input from the Content Governance Group. See more details of Cerebral Palsy Alliance Complaints and Disputes policy.
Cerebral Palsy Alliance (ACN 000 062 288), previously incorporated as “The Spastic Centre of New South Wales”, is a public benevolent institution incorporated as a company limited by guarantee. Cerebral Palsy Alliance, as a Charity, is Tax exempt and a registered Deductible Gift Recipient. We receive key funding from Ageing, Disability and Home Care (ADHC), part of the Department of Family and Community Services; NSW Department of Education; and individual and corporate donors. CPA is a registered service provider with the National Disability Insurance Agency and receives fees for services provided to recipients of funds through the National Disability Insurance Scheme. See our policy.

Decisions about content of About Cerebral Palsy are made independently of our funding sources

About CP does not receive funding through advertising.

We would disclose any potential conflict of interest that could arise through any funding arrangements with corporate sponsors.

Any information about specific products or equipment does not constitute endorsement.