Thank you all for joining the Twitter Chat. Patient diaries are clearly very topical. An hour did not seem long enough. I do hope you found it helpful and it was fantastic to have people join in from all over the world.
Some of the key points raised / discussed:
Considerations about increasing anxiety for some patients was raised and there is a need not to impose a diary on an individual as this could prove counter productive and incur anxiety and rumination where there was none. Avoidance and not needing to know what happened can be a coping mechanism for some or they may not yet be ready to face what occurred. While for others the opposite is true and they are the patients who express a need to know what happened to them whilst unconscious and critically ill and seek to accept and read their diary. The process of empowering the patient to accept or reject their diary is important as they are individuals who need to make choices that best suit how they feel and cope.
Legal issues were raised and this is an important point. Key things to consider are:
• Storage: in what format and where with what record of it for audit and access.
• Content and purpose of diaries that differs from medical records
• Litigation concerns which may impact on what a nurse or other healthcare professional is willing to include in the diary- this can mean the diary is censored in some way.
Consent and Ownership: the patient is usually unconscious so relatives are usually asked for consent on the patients’ behalf to start a diary, with retrospective consent being gained from the patient if they choose to collect it. If it is not claimed how long should it be retained before destroying it- should it be destroyed? Then there is the decision to convert to providing access to the diary for the bereaved family if the patient dies.
Photographs: to take them or not? It was mentioned that a bed space showing the equipment in ICU could be used. Should it be one photo or milestone photos during the patient journey- such as sitting out for the first time, mobilising, tracheostomy insertion? Who should take them?
Diary team issues: Sustainability of diary writing as busy shifts and it is a voluntary process so what happens when an individual does not contribute and leaves a date blank? The chronology of events over the timeline of their critical illness journey is one of the important things to facilitate regaining of control over what they have been through
What to write and how to write it: remembering it is for the patient to read afterwards to help them relate to the time they have lost or feel is missing. It is not a medical record and is usually written in a more personal manner as if speaking to the patient. This creates a human connection that did not exist and in some ways provides evidence that they were cared for while they were “out of it”. So the diary can provide reassurance about care and honesty about the highs and lows of the critical illness journey if the author of the diary entry is willing.
Family inclusion in diary writing: It was mentioned that family find writing in a diary a coping mechanism that helps them during such a stressful time as well as the patient on reading their entries afterwards.
Something that we did not get chance to explore is diary handover and follow up afterwards. Thinking carefully about who quality assures the diary as well as who hands over the diary and how it is discussed. Then providing opportunity for the patient to read it and return to explore any questions. It is not a quick fix approach- handover and leaves the patient to get on with it. Diary use needs to be part of a supportive process. One off debriefs are known to be potentially harmful (Litz, 2008, Toien et al., 2010). In the UK only 11 ICUs have a designated Clinical Psychologist in post.
Patient and family feedback is generally positive from those who wanted their diary. We need to be mindful of those who do not want to be exposed to information that they are not ready to confront and could be detrimental.
Diary use in alternative situations like burns patients or mothers with PND were noted. Use in NICU or paediatrics where parents can be actively involved in diary writing is also a developing area (Colville & Pierce, 2012).
Psychological well being is being emphasised but do we have the right systems in place? What are the options/alternatives?
Having a diary helps with missing time, but who listens to the patients story and is that an important opportunity that we need to facilitate when providing a diary.
How do you support, train or educate healthcare professionals in diary use?
There are many considerations and Jones (2009) wrote a paper that covers a lot of these diary implementation issues and is a must read for anyone considering or using diaries: Jones C. (2009) Introducing photo diaries for ICU patients. Journal of the Intensive Care Society. 10(3):183-185.
Feel free to contact Cheryl on firstname.lastname@example.org for more information and or to discuss patient diaries in more detail.
Remember you can use the storify version as part of a reflection for your revalidation! https://storify.com/karin_gerber/baccn-twitter-chat-baccndiary
Our next Twitter Chat will take place on the 7th of February 2017 at 19:00 - 20:00 where we'll be discussing Maternal Critical Care using #MatCC. More information to follow soon.
Cheryl Phillips and Karin Gerber
BACCN National Board
PS: Think about coming to share the good work that's being done in your unit by submitting an abstract to present at #BACCNConf2017.