Please use the templates below when collecting stories or case studies. You can edit the templates to make them relevant for your project, but please follow the guidelines below and contact email@example.com if you have any questions.
Whose story is this?
We all tell and listen to stories from childhood. Stories help us to make sense of the world around us. They are used widely to get to the heart of what matters to individuals in health and social care. We explore the risks of digging deeper with individuals and share some practical tips and tools to create ethical improvement practices.
Why use stories as evidence?
Times are changing! When we write reports and ask individuals for feedback, we are more likely to gather stories and case studies, rather than how satisfied they were on a scale of 1-10. This means we ask people with lived experience more probing questions. The result? Powerful and poignant stories that we remember.
Case studies are similar, often written by staff, reflecting on their experiences of supporting an individual. This can give people outside a service an understanding of the practical nature of support, as well as capture moments of connection and demonstrate relationships.
The advantage of using both stories and case studies is the more powerful the story, the more likely that will have a lasting impact on those who hear it, and influence behaviour of those making decisions about how health and care services are delivered. They are more likely to capture what people value. It also gives an opportunity for those participating to reflect on their own personal journey. People with health and wellbeing needs tell us that sharing and hearing stories is empowering and inspiring.
It is the father who spoke of the support that helped him to feel like a real dad to his baby that I remember from a case study I read one year ago. My memory is more vague about the number of families supported or satisfied with the level of support they received. It was a privilege to read his story and understand and report on the valuable work of the Edge of Care team.
Ethical story collection practice
For some people telling their stories may be upsetting or distressing. As story collectors, we don’t know what is going to be discussed so it is important to be prepared and think through ethical issues before we ask individuals to participate.
Funders are doing more with the stories and case studies they receive including analysing and creating reports using some of the techniques used by university researchers. It is a privilege that people choose to share their stories and we have an obligation to take action as a result – ethics and consent are key.
Many health and care providers have existing ethical frameworks and consent processes in place. For those who don’t, we’ve put some resources together to help with ethics and consent in story collection.
How would you feel if…
- You shared a story about a difficult time when a family member or friend was seriously ill. Afterwards you are sitting alone at home?
- You give permission for your story to be shared, but later change your mind. You don’t have the contact details of who to tell and how to withdraw your consent?
- You read an anonymous case study on a website, you recognise yourself as in it and you had no idea that someone was writing a case study about you?
Individuals may tell you about things they find upsetting or distressing that you may not have anticipated. Think about the risks, all people receiving health and care services are vulnerable participants in research and appropriate safeguards should be in place.
Tip: Ensure the individual understands the risks to taking part, provide signposting to appropriate support during the process, for example, provide details of a specialist advice helpline, explain the risks and explore with them their support networks and what they will do if they feel upset afterwards.
Remember Consent consent consent!
People need to understand what they are signing up to, the risks involved, what you will do with their information (including how it will be stored) and how it may be shared.
Tools: Not sure where to start? Read our guidance, use our template participant information sheet and consent form.
Remember an adult has the capacity to consent for themselves if they understand what is involved.
Tip: If you have doubts about an individual’s capacity to consent, read through the participant information sheet together and ask ‘Thank you for thinking about doing this, now we’ve been through all the information, can you tell me your understanding of what you are signing up to do and what might happen?’.
Remember: For some a friend or carer may consent on their behalf. If you are unsure whether they can consent contact the RIC hub for advice NWRICH@denbighshire.gov.uk
Tip: Use the same consent process but ask, ‘if they had capacity, do you think this is something that they would consent to?’
While a case study may not be a full story and may be anonymised, consider how someone would feel if they recognised themselves in the story on a website, or on social media.
Tip: If you do change names or circumstances to protect an individual’s identity, say this in the case study.
Individuals own their own story or case study. Everyone has the right to withdraw their consent at any time and they must be provided a name and contact details to do so.
Tip: Record any restrictions in the consent form, check each time you plan to share the story, has the person provided consent for that purpose, for example, sharing as part of publicity material on a website or social media? If in doubt, do not publish.
Tip: Keep a record of where you publish or submit case studies so that if someone withdraws consent you can ensure it is removed from websites, social media etc.
If you have any questions about consent, ethics or storytelling contact the RIC Hub NWRICH@denbigshire.gov.uk