Information resources are evidence-based, developed in a collaborative manner, fit for the NZ context and are provided at no cost to the person affected by cancer.
Information resources and services are relevant (in their content, format and dissemination channels) to the needs of Māori, Pacific and culturally and linguistically diverse groups.
Involvement of consumers and subject experts is actively sought in the design, development and evaluation of cancer information resources.
It is vital that people affected by cancer receive information that enables them to make informed decisions along the cancer pathway. It is also understood that when receiving bad news people are not always able to process large amounts of information. This means information needs to be repeated at different times from the time of high suspicion through diagnosis and beyond, and be supported by compassionate communication.
People understand information in different ways so different methods of communication are needed. Particular consideration must be given to format and media (app-based, online, imagery, tone) when developing information that is aimed at adolescents, young adults and children.
In the current era of easy access to large amounts of information it is important that people affected by cancer are directed to information that is evidence-based and appropriate to their situation.
The involvement of consumers in the development of information resources is vital to ensure the information is developed in a way that is appropriate to the audience.
“I’m given the right information,
at the right time and in a way
that meets my needs.”
Good Practice Points
· Services will utilise information resources which have been evaluated against quality standards.
· Information is available which is suitable for all age and developmental stages.
· Information needs to be in non-technical language and available where possible in different languages.
· Areas for displaying information resources are accessible and the information is continually reviewed and updated.
· People are provided with accurate and clear information about services available to them in a timely fashion, e.g. eligibility for travel and accommodation assistance.
· The setting for information giving is private and comfortable for people affected by cancer to ask questions about the information they are receiving.
· Information which is sourced from outside of the service, organisation or country is reviewed before it is used to ensure the content and language is appropriate for the NZ context and adapted as required.
· Health and supportive care workers need to be aware of what resources exist in the online community and be able to direct people affected by cancer to appropriate sources.
· The use of patient-held diaries is encouraged and engaged with by the workforce.
· Organisations up skill their workforce so they are informed about alternative, complementary and traditional treatment and are able to engage the person affected by cancer about their choices.
· Organisations should have a designated position/role that organises and maintains information and liaises with NGOs about provision of resources.
· To achieve consistency, when information changes all levels of staff and other community agencies need to be informed.
· Resources are developed with Māori so they are appealing to Māori in terms of imagery and content.
· Resources take into account the variety of cultural contexts they may be used in and how they may be received.
Good Practice Points System
· There is systematic management to monitor and address gaps, overlaps and inconsistencies in the range of information resources and services available.
· Remains informed of changes in information that occur.
· Familiarises themselves with the information resources available most relevant to their scope of practice.
· Is able to evaluate information from alternative sources for its validity and accessibility for people affected by cancer.
· Is able to communicate information when significant stressors are occurring, including diagnosis and relapse, in a way that acknowledges the person’s ability to absorb information which may be reduced at times of stress.
· Is able to provide strategies to counteract the effect of stress to ensure a person is fully informed.
· Is able to provide neutral information about traditional and complementary medicines and supports.
· Utilises contacts with whānau to give information to increase the health of the whānau as a whole.
Training and Resources Available
· Mybc is an online community for New Zealanders affected by breast cancer - a place to connect and share experiences and to ask questions and get support from a qualified breast nurse.
· Information resources are often a key activity of the Cancer NGO’s. Refer to their websites for availability of information about disease specific resources.
· http://www.healthnavigator.org.nz provides information and links to a variety of health conditions.
· Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (2010) has a section on Alternative and Complimentary Medicine.
Last Updated October 2016