Elizabeth Herrup, MD & Sapna Kudchadkar, MD, PhD; Johns Hopkins Children’s Center
PICU DIARY GUIDELINES FOR CONTRIBUTORS
1. Introduction
a. PICU diaries are a way of helping families understand what has happened to their critically ill child during a PICU admission. ICU diaries are kept, in part, to decrease symptoms of anxiety, depression and post-traumatic stress that may develop after PICU admission in both patients and family members. Moreover, ICU diaries can help fill in memory gaps that often exist after patients are discharged from the PICU.
b. This information sheet provides guidelines on writing diary entries and proper storage of diaries.
2. Location of blank notebooks and camera
a. Blank diaries (binder with loose-leaf paper) will be provided by a consenting member of the PICU diary team. There is an information sheet about PICU diaries that has already been given to the patient’s parent(s) during the consent process.
b. The camera is stored on a shelf in a plastic box in the nursing leadership office.
After using the camera, please return the camera immediately to the plastic box located in the nursing leadership office. The camera charger and extra photo paper are also located inside the plastic box that holds the camera.
c. If you have any questions about how to use the camera, how to charge the camera, or how to load more paper into the camera, please call XXX XXXXXX (PICU fellow running the PICU diary study) on her cell phone at XXX-XXX-XXXX.
3. Starting a diary
a. Place a patient label on the outside of the diary.
b. Do not take any photographs without the parents’ consent. If the parents have consented to allow photographs to be taken, a sticker of a camera will be placed on the cover of the PICU diary.
c. If you take a photograph, please peel off the back piece of paper on the
photograph to reveal its adhesive back and stick it in the PICU diary somewhere within the entry on the correctly marked date on which it is taken. Relatives may be photographed with the patient if they wish.
d. Store the active PICU diary underneath the whiteboard in the patient room.
e. Verbally encourage family members and other medical staff to write in the diary.
f. Ensure that the nursing care plan includes a sentence that the diary has been started and state this during nursing sign out so that the next shift knows it has been started.
Elizabeth Herrup, MD & Sapna Kudchadkar, MD, PhD; Johns Hopkins Children’s Center 4. How to write in the diary
a. All entries should be in black ink, dated, signed and marked with the writer’s job title or relation to the patient.
b. Avoid information that could be of a sensitive nature, or that a patient and/or family may wish to keep confidential. Examples include HIV status, sexuality or substance abuse.
c. Write only what you would be comfortable disclosing verbally to a patient or parent.
d. Begin the diary with the story of how the patient came into hospital and then to the ICU.
e. Entries should be made daily so there are no gaps when the parents and possibly patient read through the diary later.
f. Write about any significant events such as extubation, a tracheostomy, or sitting up in or out of bed for the first time. If progress is slow, still try to at least write one line, for example: your condition has not changed, you are still needing help from the breathing machine and your blood pressure support from medication.
g. All staff members are invited and are welcome to make diary entries. A diary with contributions from nurses, doctors, physical therapists, occupational therapists, respiratory therapists, social workers, child life specialists, chaplains, relatives, and others is likely to hold more meaning than a diary written by one person alone.
h. Avoid jargon and abbreviations and use layperson’s terms when describing clinical terminology.
i. Your writing style should always be professional and relevant.
5. Returning a diary to parents
a. A PICU diary research team member will go through the diary with the parents on day of discharge from the PICU. The parents should then be given the
opportunity to ask any questions.
b. The parents may choose to take the PICU diary with them upon discharge,
however, a copy of the PICU diary MUST be made prior to the parents taking the PICU diary out of the PICU.
c. Please give the copy of the PICU diary to the on-service fellow, who will then store the copy for a PICU diary team member to pick up from the PICU.
d. Should any questions arise regarding the above information, please call XXX XXXXXX (PICU fellow running the PICU diary study) on her cell phone. Her cell phone number is XXX-XXX-XXXX.
e. A PICU diary team member will mark in the diary registry that the diary has been given to the parents.
Elizabeth Herrup, MD & Sapna Kudchadkar, MD, PhD; Johns Hopkins Children’s Center
Examples of diary entries
Open the diary with the story of the patient becoming ill and being admitted to hospital:
• This diary is being written to help you understand what has been happening to you while you have been a patient in the Pediatric Intensive Care Unit. Originally you were admitted to the Johns Hopkins PICU with breathing problems and spent time on the general wards before coming to ICU. You had a few set backs on the general wards. On ….. your condition deteriorated on the ward and you were found to have stopped breathing and needed resuscitation. A tube was passed through your mouth into your airway and was attached to a ventilator to do the work of breathing for you.
Writing about initial condition:
• Your circulation was struggling and needed support with a drug called
epinephrine to keep your blood pressure up. We passed a tube through your nostril into your stomach to start feeding you. Our doctor updated your family to explain what had happened to you and our plans for treating you. We started you on antibiotics and chest physiotherapy for the pneumonia.
• You were stable overnight and then in the morning you went to operating room to have the burns on your face cleaned and a skin graft put over the burn. The skin was taken from your right thigh to do this. You were in the operating room a long time and arrived back in the ICU at 4 pm. Your head and face were covered in dressings so we can’t see any of your face. You also have a dressing on your right thigh where your skin graft was taken from.
Daily updates:
• You managed an hour off the ventilator with just some support from CPAP (helps keep the airways open with positive pressure) but you were really struggling to breathe. You went back on the ventilator on a mode that lets you do some of the breathing work. This made you very tired and you slept most of the afternoon.
• You went for a CT scan of your chest and belly this morning. In the afternoon you had a tracheostomy. This involves a small operation where a tube is put into your windpipe through a cut in the skin of your neck. This is then connected to the ventilator and is more comfortable than the tube in your mouth.
• You are off the ventilator now doing all the breathing for yourself through the tracheostomy. At 10 am you were needing some oxygen through a mask over the tracheostomy but otherwise you were ok. You were able to get out of bed and walk to a chair with 2 staff members. You are having regular salt nebulizers to loosen your mucous.
