During your planning stage it is important to identify how you will invite the people you would like to be involved.
- Are members of local self-help groups, community organisations or health consumer networks potential participants?
- Are former or current patients of different health services appropriate people to take part?
- Is it appropriate to work in partnership with an organisation that has established relationships with particular groups of people you would like to invite? This can be appropriate when you are seeking to involve particular communities, people with whom you have limited existing relationships, or people who are marginalised or vulnerable.
- Where appropriate, how will you seek to involve marginalised or vulnerable people? Are there relationships that you will need to build to invite these people? Are there barriers to their participation? Will particular support be required to allow their participation?
- Are there any cultural considerations to be aware of?
- If you are seeking participation from people of non-English speaking backgrounds or who speak little English, it is appropriate to identify whether an interpreter can be provided to assist you to listen to and communicate with the storyteller. Consider what impact the presence of an interpreter could have on the storyteller. For example, is it best to seek an interpreter of the same gender as the storyteller? Might a storyteller be reluctant to discuss certain health matters in front of an interpreter who is from their own local community due to privacy concerns? Develop a strategy to manage such concerns.
- What practical support will you offer to participants? This could include covering any transport costs that storytellers incur during the process.
Consider the diversity within your target group
You have already defined whether you are seeking to reach a specific target audience, or if the decision will affect a broader population. This guides whether or not it is necessary to invite participation from a variety of people in different situations and how essential it is to seek out diversity of gender, age, ethnic and cultural background, occupation and education level.
You don’t need to gather a representative population sample, but you should try to ensure that the diversity of the community whose experience you are seeking to bring to decision-making through storytelling, is reflected in the people you invite. In short, seek diversity within the population you are sampling. For example, if your target group is women aged 40 to 50 with asthma, you might aim to hear stories from women of different cultural backgrounds, from women in different occupations and employment situations, and from women who have been diagnosed for longer or shorter periods of time.
Inviting participation and informed consent
You will need to develop an appropriate strategy for inviting participation once you have identified potential participants. You might invite participation by describing your project at a meeting of a consumer organisation or community group whose members you would like target, or by sending letters or emails to people you have identified as possible participants. You might ask health and other services to share information about your project with their clients or service users.
Provide information about the project and participation in writing. Your information should provide clear, plain English information about your organisation, the purpose of the interview, what kinds of topics or questions you are likely to discuss in interview, and what time commitment is required. There are useful guides available to help you make sure your project information is easy to understand. For example, try the readability calculator at http://www.learningandwork.org.uk/misc/SMOG-calcul...).
Explain what you will do with the information that people share, how you will share any project outcomes with participants, and explain the protections you have put in place to protect people’s anonymity and privacy. More information is provided in the Consumers Stories section of this tool-kit.
Remember that it can be difficult for people to revisit difficult health experiences. It’s important to encourage people to reflect on this before agreeing to take part, and to provide details of services that can assist in the event that people are upset after sharing an experience.
The Project Information and Informed Consent sheets are important places to provide information that allows people to give their informed consent to interview. It’s very important to keep a record of people’s consent.
If you would like to record interviews, ask for permission first. Allow people to record their agreement to be audio-recorded on their consent form. (Remember that while recording can help you to gain an accurate record of an interview, notes taken during or even after an interview can still help you to gain a good impression of a story and you can check your record of the conversation afterwards with the storyteller to ensure you captured their experience accurately).
Are there any risks?
Before you begin it is also important to consider whether there are any risks associated with the work you will undertake. You should take steps to identify and to manage any possible risks.
- Are there any possible harms that sharing a story could cause to individuals, their families or communities?
- If you focus on one story, or some stories, to the exclusion of others, do you risk missing some essential information and excluding other people’s experiences?
There is more information about identifying, managing and minimising risks to consumers, and about informed consent in the next section, Supporting Consumer Control and in the Gathering Consumer Stories section.
Will you require formal ethics approval?
The tools in this tool-kit help organisations to have a robust process in place to gather, analyse and act on consumer experience data. This is a powerful way to improve your responsiveness to consumer needs, and to improve the quality of your decisions and the services you deliver. Inviting consumers’ accounts of experience for these purposes does not usually require ethical approval by a Human Research Ethics Committee.
If you plan to use the tools and method in a research project, and in some health service settings, you may require research ethics approval. Further guidance about when it is appropriate to gain human research ethics approval can be found at the National Health and Medical Research Council’s National Statement on Ethical Conduct in Human Research or by contacting the relevant Human Research Ethics Committee.