By Christine A. Zawistowski, MD
The objective is to open up discussions with family members or health care providers and help everyone get “on the same page.”
I am always looking for tools to help patients focus on what is really important to them. The objective is to open up discussions with family members or health care providers and help everyone get “on the same page.”
I recently read about a new book called Digging Deep: A Journal for Young People Facing Health Challenges.
Digging Deep, written by Rose Offner and Sheri Sobrato Brisson, is designed to guide seriously ill children and adolescents through writing exercises that help them explore their feelings about being sick and better cope with their illness. The book is intended to help patients tell their own story; it is not a storybook about how a character copes with illness.
Rose Offner and Sheri Sobrato Brisson, is designed to guide seriously ill children and adolescents through writing exercises that help them explore their feelings about being sick and better cope with their illness. The book is intended to help patients tell their own story; it is not a storybook about how a character copes with illness.
The journal is available in English and Spanish, and it is suitable for patients in inpatient and outpatient settings, those undergoing treatment and those in remission.
The tool can be used individually or in a group setting. The child can fill out the journal alone or with the help of an adult.
A different tool
Because Digging Deep allows children to tackle difficult issues in non-threatening ways, it serves as a basis for important discussions between patients and their families, as well as between children and their health care providers.
Palliative care works best when incorporated into the patient’s care at diagnosis, so this is an excellent tool to use in the outpatient setting.
One may question how Digging Deep is different from other tools — such as My Wishes and Voicing My Choices — that have been developed to help pediatric patients think about and communicate goals of care.
Digging Deep is an actual journal, not a booklet or pamphlet. It is more than 100 pages, and it has bright and engaging art on each page that makes it a true journaling experience. It is designed to be something that is kept and reflected upon.
The author guides the user by breaking the journal down into sections that cover a broad range of topics, such as “Exploring My Life,” “Hospital, Doctors and Treatments,” “Anger, Fear and Understanding,” “Family, Friends and Circles of Support,” “Love and Gratitude” and “Challenges, Change and Growth.” Although it is targeted at children aged 10 to 16 years, certain sections could be used with younger children.
Evidence of benefit
There is evidence from other fields of medicine that the use of diaries and journals can benefit patients.
The use of diaries as a means of preventing or mitigating psychological sequelae has been examined in the ICU population. Posttraumatic stress disorder (PTSD) was found to be prevalent in ICU survivors. It is thought to be partially caused by the patient’s lack of memory about what happened to them during their critical illness.
ICU diaries written in plain language by health care providers, family members and the patient — when alert and stable enough to do so — help provide a more concrete memory of a patient’s illness and also help facilitate discussions about goals of care. These diaries have been shown to decrease the incidence of PTSD and help with the patient’s rehabilitation.
Perhaps this data can be extrapolated to pediatric oncology patients and improve subsequent quality of life in survivors of childhood cancer.
The incidence of PTSD in survivors of childhood cancer varies depending on which study is examined, but it is known to be a problem for some. Up to one-third of adolescent and young adult survivors are diagnosed with PTSD, and up to half have posttraumatic stress symptoms. Although factors extrinsic to the cancer diagnosis and treatment (eg, poorly functioning family or history of stressful life events) contribute to this, as least one study showed a correlation with intensity of cancer therapy.
A journal also may be beneficial in assisting pediatric oncology patients manage the psychological distress associated with illness uncertainty. The uncertainty — which could be related to illness state and severity, disease course, complexity of treatment and/or prognosis — has been shown to increase psychological distress in pediatric oncology patients.
A recent study assessed the relationship between uncertainty and quality of life in pediatric oncology patients. The authors found that illness uncertainty is prevalent in children with cancer and it is associated with poorer quality of life. Even children who were not undergoing chemotherapy experienced illness uncertainty, which negatively affected their quality of life.
Severe illness can cause psychological distress to patients, partly due to memory disturbances during this period in their lives. This can contribute to PTSD. Severe illness is also surrounded by uncertainty, which causes psychological distress and reduced quality of life.
Tools such as diaries and journals kept during this stressful time in a patient’s life can assist in forming accurate memories, provide an outlet for thoughts and feelings, and serve as a platform to facilitate discussion between the patient, family and health care team.
Fortier MA. Journal of Pediatric Hematology Oncology 2013;35:366-370.
Garrouste-Oregas M. Critical Care Medicine 2012;40:2033-2040.
Jones C. Critical Care. 2010;14:R168.
Offner R. Brisson S. Digging Deep: A Journal for Young People Facing Health Challenges. San Francisco, CA: Resonance House; 2013.
Stuber ML. Pediatrics. 2010;125:e1124-e1134.
– Christine A. Zawistowski, MD, HemOnc Today, November 25, 2013
About the Author:
Christine A. Zawistowski, MD, is a pediatric palliative care and intensive care doctor at NYU Langone Medical Center in New York. She can be reached at NYU Langone Medical Center, Department of Pediatrics, 462 First Ave., New York, NY 10016.
Garth Sundem is a parent, husband, and author of books including “Real Real Kids, Real Stories, Real Change”.